Most recent papers:

• Regenerative medicine: Stroke survivor and carer views and motivations towards a proposed stem cell clinical trial using placebo neurosurgery.
  Nicola A. Cunningham, Purva Abhyankar, Julie Cowie, Jayne Galinsky, Karen Methven.
  Health Expectations. October 12, 2017
  Background Few studies explore stroke survivor views and motivations towards stem cell therapy (SCT). This qualitative study explores the views and motivations of both stroke survivors and their partners/carers towards a proposed 2‐arm Phase III Randomised Controlled Trial (RCT) comparing intracerebral insertion of stem cells with placebo neurosurgery in stroke survivors with disability. Objective To explore views and motivations towards a proposed 2‐arm stem cell trial and identify factors that may impede and enhance participation. Design This study adopts a naturalistic design to explore the complexity of this field, employing a participatory action‐research approach comprising a specialized Conversation (World) Café form of focus group. Data were collected via 5 Conversation Cafés with stroke survivors (age 40‐75) and partners/carers between June and October 2016. Of 66 participants, 53 (31 male, 22 female) were stroke survivors and 13 (6 female, 7 male) were partners/carers. Qualitative data were analysed using a thematic approach. Discussion and Conclusion Stroke survivor views and motivations reflect anticipation of the personal and future benefits of regenerative medicine. Partners/carers sought to balance the value of stroke survivor hope with carrying the weight of hope as carer, a conflict burden adding to known caregiver burden. All participants expressed the need for during and post‐trial psychological support. This study provides a rare opportunity to explore the prospective views and motivations of stroke survivors and their partners/carers towards a proposed Phase III 2‐arm RCT. This adds weight to qualitative evidence exploring capacity, consent, decision making, perceptions of treatment risk and supports required for clinical trial participation.

  October 12, 2017   doi: 10.1111/hex.12632   open full text
• How do people with long‐term mental health problems negotiate relationships with network members at times of crisis?
  Sandra Walker, Anne Kennedy, Ivaylo Vassilev, Anne Rogers.
  Health Expectations. October 10, 2017
  Background Social network processes impact on the genesis and management of mental health problems. There is currently less understanding of the way people negotiate networked relationships in times of crisis compared to how they manage at other times. Objective This paper explores the patterns and nature of personal network involvement at times of crises and how these may differ from day‐to‐day networks of recovery and maintenance. Method Semi‐structured interviews with 25 participants with a diagnosis of long‐term mental health (MH) problems drawn from recovery settings in the south of England. Interviews centred on personal network mapping of members and resources providing support. The mapping interviews explored the work of network members and changes in times of crisis. Interviews were recorded, transcribed and analysed using a framework analysis. Results Three key themes were identified: the fluidity of network relationality between crisis and recovery; isolation as a means of crises management; leaning towards peer support. Personal network input retreated at times of crisis often as result of “ejection” from the network by participants who used self‐isolation as a personal management strategy in an attempt to deal with crises. Peer support is considered useful during a crisis, whilst the role of services was viewed with some ambiguity. Conclusions Social networks membership, and type and depth of involvement, is subject to change between times of crisis and everyday support. This has implications for managing mental health in terms of engaging with network support differently in times of crises versus recovery and everyday living.

  October 10, 2017   doi: 10.1111/hex.12620   open full text
• An empirically based conceptual framework for fostering meaningful patient engagement in research.
  Clayon B. Hamilton, Alison M. Hoens, Catherine L. Backman, Annette M. McKinnon, Shanon McQuitty, Kelly English, Linda C. Li.
  Health Expectations. October 06, 2017
  Background Patient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data. Objective To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective. Methods We conducted a qualitative secondary analysis of in‐depth interviews with 18 patient research partners from a research centre‐affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team. Results Participants’ experiences of working with researchers were generally positive. Eight themes emerged: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful PEIR from a patient perspective. This framework, the PEIR Framework, was endorsed by the patient research partners on our team. Conclusions The PEIR Framework provides guidance on aspects of PEIR to address for meaningful PEIR. It could be particularly useful when patient‐researcher partnerships are led by researchers with little experience of engaging patients in research.

  October 06, 2017   doi: 10.1111/hex.12635   open full text
• The midwife–woman relationship in a South Wales community: Experiences of midwives and migrant Pakistani women in early pregnancy.
  Laura Goodwin, Billie Hunter, Aled Jones.
  Health Expectations. September 29, 2017
  Background In 2015, 27.5% of births in England and Wales were to mothers born outside of the UK. Compared to their White British peers, minority ethnic and migrant women are at a significantly higher risk of maternal and perinatal mortality, along with lower maternity care satisfaction. Existing literature highlights the importance of midwife–woman relationships in care satisfaction and pregnancy outcomes; however, little research has explored midwife–woman relationships for migrant and minority ethnic women in the UK. Methods A focused ethnography was conducted in South Wales, UK, including semi‐structured interviews with 9 migrant Pakistani participants and 11 practising midwives, fieldwork in the local migrant Pakistani community and local maternity services, observations of antenatal appointments, and reviews of relevant media. Thematic data analysis was undertaken concurrently with data collection. Findings The midwife–woman relationship was important for participants' experiences of care. Numerous social and ecological factors influenced this relationship, including family relationships, culture and religion, differing health‐care systems, authoritative knowledge and communication of information. Marked differences were seen between midwives and women in the perceived importance of these factors. Conclusions Findings provide new theoretical insights into the complex factors contributing to the health‐care expectations of pregnant migrant Pakistani women in the UK. These findings may be used to create meaningful dialogue between women and midwives, encourage women's involvement in decisions about their health care and facilitate future midwifery education and research. Conclusions are relevant to a broad international audience, as achieving better outcomes for migrant and ethnic minority communities is of global concern.

  September 29, 2017   doi: 10.1111/hex.12629   open full text
• Patient family advisors’ perspectives on engagement in health‐care quality improvement initiatives: Power and partnership.
  Donna Goodridge, Tanner Isinger, Thomas Rotter.
  Health Expectations. September 28, 2017
  Background Engagement of the public in defining and shaping the organization and delivery of health care is increasingly viewed as integral to improving quality and promoting transparent decision making. Meaningful engagement of the public in health‐care reform is predicated on shifting entrenched power imbalances between health‐care systems and those it claims to serve. Objectives To describe the expressions, forms and spaces of power from the perspectives of persons who participated as Patient/Family Advisors (PFAs) in Rapid Process Improvement Workshops (RPIWs) within Saskatchewan, Canada. Methods Using a qualitative, interpretive approach, in‐depth interviews were conducted with a purposive sample of 18 PFAs who had participated in at least one RPIW over the past year. Deductive thematic analysis was informed by Gaventa's model of power. Results Motivations for serving as a PFA included a sense of obligation to contribute to the improvement of a public system, recognition of their rights as citizens within a publicly funded system and an opportunity to openly express their concerns where previous encounters had been very negative. The invited spaces of the RPIWs were created by policymakers to accord visible power to PFAs. Participation resulted in PFAs gaining new insights into the structure and operations of the system, affirmation of their right to advocate and recognition of the potential to claim spaces of power as consumers. Advisement on specific health‐care initiatives using the vehicle of PFAs shaped and promoted new forms and spaces of power, representing one step in a very long road to full engagement of consumers in health care.

  September 28, 2017   doi: 10.1111/hex.12633   open full text
• Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries.
  Nina H. Gobat, Micaela Gal, Christopher C. Butler, Steve A.R. Webb, Nicholas A. Francis, Helen Stanton, Sibyl Anthierens, Hilde Bastiaens, Maciek Godycki‐ćwirko, Anna Kowalczyk, Mariona Pons‐Vigués, Enriqueta Pujol‐Ribera, Anna Berenguera, Angela Watkins, Prasanth Sukumar, Ronald G. Moore, Kerenza Hood, Alistair Nichol.
  Health Expectations. September 27, 2017
  Background Pandemics of new and emerging infectious diseases are unpredictable, recurrent events that rapidly threaten global health and security. We aimed to identify public views regarding provision of information and consent to participate in primary and critical care clinical research during a future influenza‐like illness pandemic. Methods Descriptive‐interpretive qualitative study, using focus groups (n = 10) and semi‐structured interviews (n = 16), with 80 members of the public (>18 years) in Belgium, Spain, Poland and the UK. Local qualitative researchers followed a scenario‐based topic guide to collect data. Data were transcribed verbatim, translated into English and subject to framework analysis. Results Public understandings of pandemics were shaped by personal factors (illness during the previous H1N1 pandemic, experience of life‐threatening illness) and social factors (historical references, media, public health information). Informants appreciated safeguards provided by ethically robust research procedures, but current enrolment procedures were seen as a barrier. They proposed simplified enrolment processes for higher risk research and consent waiver for certain types of low‐risk research. Decision making about research participation was influenced by contextual, research and personal factors. Informants generally either carefully weighed up various approaches to research participation or responded instinctively. They supported the principle of using routinely collected, anonymized clinical biological samples for research without explicit consent, but regarded this as less acceptable if researchers were motivated primarily by commercial gain. Conclusions This bottom‐up approach to ascertaining public views on pandemic clinical research has identified support for more proportionate research protection procedures for publically funded, low‐risk studies.

  September 27, 2017   doi: 10.1111/hex.12634   open full text
• “Telling” and assent: Parents’ attitudes towards children's participation in a birth cohort study.
  Izen Ri, Eiko Suda, Zentaro Yamagata, Hiroshi Nitta, Kaori Muto.
  Health Expectations. September 22, 2017
  Introduction One of the ethical issues surrounding birth cohort studies is how to obtain informed assent from children as they grow up. What and how parents tell their children affects children's future choices about the study, yet few studies have focused on parents’ influence on children. Objective This study examines parents’ attitudes towards telling their children about their participation in a specific birth cohort study. Methods We conducted surveys and in‐depth interviews with the parents of children who participated in the “Japan Environment and Children's Study” (JECS), which follows children from the foetal stage to age 13. Results Forty‐four mothers and 23 fathers answered the survey, and 11 mothers and 3 fathers participated in in‐depth interviews. Parents’ attitudes towards “telling” were categorized into 3 communication styles depending on their perception of the risk/benefits for their children. Most parents predicted that the study would benefit their children and preferred “directive telling,” which we divided into “empowered telling” (provides children with a positive identity as participants) and “persuasive telling” (attempts to persuade children even if they express reluctance as they grow). A few parents, weighing the study's potential risk, preferred “non‐directive telling,” which respects children's choices even if that means withdrawing from the study. Discussion While “directive telling” may lead children to have positive associations with the study, children should also be told about the risks. Investigators can provide materials that support parents and give children age‐appropriate information about their participation, as well as ensure opportunities for children to express their feelings.

  September 22, 2017   doi: 10.1111/hex.12630   open full text
• Measuring recall of medical information in non‐English‐speaking people with cancer: A methodology.
  Ruby Lipson‐Smith, Amelia Hyatt, Alexandra Murray, Phyllis Butow, Thomas F. Hack, Michael Jefford, Uldis Ozolins, Sandra Hale, Penelope Schofield.
  Health Expectations. September 22, 2017
  Background Many patients who require an interpreter have difficulty remembering information from their medical consultations. Memory aids such as consultation audio‐recordings may be of benefit to these patients. However, there is no established means of measuring patients’ memory of medical information. Objectives This study aimed to develop a method for eliciting and coding recall of medical information in non‐English‐speaking patients. Design This method, called Patient‐Interpreter‐Clinician coding (PICcode), was developed in the context of a phase II trial conducted in two outpatient oncology clinics in Melbourne, Australia, and was refined iteratively through consultation with an expert panel and piloting. Between‐coder differences in early versions of the coding system were resolved through discussion and consensus resulting in refinements to PICcode. Results The final version of PICcode involved transcribing, translating and coding of audio‐recorded consultations and semi‐structured interviews (SSI). The SSIs were designed to elicit patients’ free‐recall of medical information. Every unit of medical information in the consultation was identified and categorized in a coding tree. SSIs were coded to identify the extent to which information was recalled from the consultation. Discussion The iterative changes involved in developing PICcode assisted in clarifying precise details of the process and produced a widely applicable coding system. PICcode is the most comprehensively described method of determining the amount of information that patients who use an interpreter recall from their medical consultations. PICcode can be adapted for English‐speaking patients and other healthcare populations.

  September 22, 2017   doi: 10.1111/hex.12614   open full text
• Patient value: Perspectives from the advocacy community.
  Bonnie J Addario, Ana Fadich, Jesme Fox, Linda Krebs, Deborah Maskens, Kathy Oliver, Erin Schwartz, Gilliosa Spurrier‐Bernard, Timothy Turnham.
  Health Expectations. September 20, 2017
  All health‐care systems are under financial pressure and many have therefore developed value frameworks to assist decision making regarding access to treatment. Unfortunately, many frameworks simply reflect the clinically focused values held by health‐care professionals rather than outcomes that also matter to patients. It is difficult to define one single homogeneous set of patient values as these are shaped by social, religious and cultural factors, and health‐care environment, as well as many factors such as age, gender, education, family and friends and personal finances. Instead of focusing on an aggregated set of values, frameworks should attempt to incorporate the broader range of outcomes that patients may regard as more relevant. Patient advocates are well placed to advise assessment bodies on how particular therapies will impact the patient population under consideration and should be closely involved in developing value frameworks. In this paper, a group of patient advocates explore the varying definitions of patient value and make positive recommendations for working together to strengthen the patient voice in this area. The authors call on framework developers, the patient advocacy and research communities, the health‐care industry and decision‐makers to undertake specific actions to ensure patient value is included in current and future value frameworks. This is justified on compassionate and economic grounds: better health outcomes result when patients receive treatment tailored to individual needs. Paying attention to the patient perspective also results in better use of resources—a goal that should appeal to all stakeholders.

  September 20, 2017   doi: 10.1111/hex.12628   open full text
• Optimizing patient and public involvement (PPI): Identifying its “essential” and “desirable” principles using a systematic review and modified Delphi methodology.
  Rebecca L. Baines, Sam Regan de Bere.
  Health Expectations. September 19, 2017
  Background There is international interest in the active involvement of patients and the public. However, consensus on how best to optimize its application is currently unavailable. Objective To identify and assess the underlying principles of patient and public involvement (PPI) in health and social care services, research, education and regulation across medicine, dentistry and nursing. Design A four‐phase methodology: (i) an extensive systematic review of published and grey literature; (ii) inductive thematic analysis of review findings; (iii) development of best practice principles; and (iv) consensus testing of identified principles using a modified Delphi methodology. Setting and participants Twelve systematic reviews and 88 grey literature publications were reviewed leading to the unique identification of 13 principles later assessed by 18 PPI experts. Results Essential consensus (>75% agreement) was obtained for nine principles reviewed. Working in equal partnership and sharing information achieved the highest consensus rates: 16/17 essential 94.1%; 1/17 desirable 5.8%. The four remaining principles that failed to reach essential consensus were categorized as desirable by expert respondents. No principles were considered irrelevant. No alternatives were suggested. Discussion Expert respondents suggest essential principles must be achieved to optimize PPI best practice. To advance PPI practice, desirable principles should also be aspired to wherever possible. Conclusions This study's innovative approach advances existing knowledge by providing previously unavailable consensus about PPI best practice. Research findings hold important theoretical and practical implications for educators, regulators, researchers and practitioners looking to effectively work together.

  September 19, 2017   doi: 10.1111/hex.12618   open full text
• Impact and experiences of delayed discharge: A mixed‐studies systematic review.
  Antonio Rojas‐García, Simon Turner, Elena Pizzo, Emma Hudson, James Thomas, Rosalind Raine.
  Health Expectations. September 12, 2017
  Background The impact of delayed discharge on patients, health‐care staff and hospital costs has been incompletely characterized. Aim To systematically review experiences of delay from the perspectives of patients, health professionals and hospitals, and its impact on patients’ outcomes and costs. Methods Four of the main biomedical databases were searched for the period 2000‐2016 (February). Quantitative, qualitative and health economic studies conducted in OECD countries were included. Results Thirty‐seven papers reporting data on 35 studies were identified: 10 quantitative, 8 qualitative and 19 exploring costs. Seven of ten quantitative studies were at moderate/low methodological quality; 6 qualitative studies were deemed reliable; and the 19 studies on costs were of moderate quality. Delayed discharge was associated with mortality, infections, depression, reductions in patients’ mobility and their daily activities. The qualitative studies highlighted the pressure to reduce discharge delays on staff stress and interprofessional relationships, with implications for patient care and well‐being. Extra bed‐days could account for up to 30.7% of total costs and cause cancellations of elective operations, treatment delay and repercussions for subsequent services, especially for elderly patients. Conclusions The poor quality of the majority of the research means that implications for practice should be cautiously made. However, the results suggest that the adverse effects of delayed discharge are both direct (through increased opportunities for patients to acquire avoidable ill health) and indirect, secondary to the pressures placed on staff. These findings provide impetus to take a more holistic perspective to addressing delayed discharge.

  September 12, 2017   doi: 10.1111/hex.12619   open full text
• Decision aid use during post‐biopsy consultations for localized prostate cancer.
  Margaret Holmes‐Rovner, Akshay Srikanth, Stephen G. Henry, Aisha Langford, David R. Rovner, Angela Fagerlin.
  Health Expectations. September 07, 2017
  Background Decision Aids (DAs) effectively translate medical evidence for patients but are not routinely used in clinical practice. Little is known about how DAs are used during patient‐clinician encounters. Objective To characterize the content and communicative function of high‐quality DAs during diagnostic clinic visits for prostate cancer. Participants 252 men newly diagnosed with localized prostate cancer who had received a DA, 45 treating physicians at 4 US Veterans Administration urology clinics. Methods Qualitative analysis of transcribed audio recordings was used to inductively develop categories capturing content and function of all direct references to DAs (booklet talk). The presence or absence of any booklet talk per transcript was also calculated. Results Booklet talk occurred in 55% of transcripts. Content focused on surgical procedures (36%); treatment choice (22%); and clarifying risk classification (17%). The most common function of booklet talk was patient corroboration of physicians’ explanations (42%), followed by either physician or patient acknowledgement that the patient had the booklet. Codes reflected the absence of DA use for shared decision‐making. In regression analysis, predictors of booklet talk were fewer years of patient education (P = .027) and more time in the encounter (P = .027). Patient race, DA type, time reading the DA, physician informing quality and physician age did not predict booklet talk. Conclusions Results show that good decision aids, systematically provided to patients, appeared to function not to open up deliberations about how to balance benefits and harms of competing treatments, but rather to allow patients to ask narrow technical questions about recommended treatments.

  September 07, 2017   doi: 10.1111/hex.12613   open full text
• Quantity over quality—Findings from a systematic review and environmental scan of patient decision aids on early abortion methods.
  Kyla Z. Donnelly, Glyn Elwyn, Rachel Thompson.
  Health Expectations. September 07, 2017
  Background The availability and effectiveness of decision aids (DAs) on early abortion methods remain unknown, despite their potential for supporting women's decision making. Objective To describe the availability, impact and quality of DAs on surgical and medical early abortion methods for women seeking induced abortion. Search strategy For the systematic review, we searched MEDLINE, Cochrane Library, CINAHL, EMBASE and PsycINFO. For the environmental scan, we searched Google and App Stores and consulted key informants. Inclusion criteria For the systematic review, we included studies evaluating an early abortion method DA (any format and language) vs a comparison group on women's decision making. DAs must have met the Stacey et al (2014). Cochrane review definition of DAs. For the environmental scan, we included English DAs developed for the US context. Data extraction and synthesis We extracted study and DA characteristics, assessed study quality using the Effective Practice and Organization of Care risk of bias tool and assessed DA quality using International Patient Decision Aid Standards (IPDAS). Results The systematic review identified one study, which found that the DA group had higher knowledge and felt more informed. The evaluated DA met few IPDAS criteria. In contrast, the environmental scan identified 49 DAs created by non‐specialists. On average, these met 28% of IPDAS criteria for Content, 22% for Development and 0% for Effectiveness. Conclusions Research evaluating DAs on early abortion methods is lacking, and although many tools are accessible, they demonstrate suboptimal quality. Efforts to revise existing or develop new DAs, support patients to identify high‐quality DAs and facilitate non‐specialist developers' adoption of best practices for DA development are needed.

  September 07, 2017   doi: 10.1111/hex.12617   open full text
• Carers' involvement in decision making about antipsychotic medication: A qualitative study.
  Norman J. Stomski, Paul Morrison.
  Health Expectations. August 25, 2017
  Background Current Australian mental health policy recommends that carers should be involved in the provision of mental health services. Carers often provide intensive support to mental health consumers and gain detailed insight into their lives. As such, carers could make valuable contributions to well‐informed decisions about mental health consumers' use of antipsychotic medication. Objectives The aim of this study was to explore carers' participation in antipsychotic medication decision making. Methods Snowball sampling was used to enrol 29 carers in this study. Of these carers, 19 participated in semi‐structured interviews, and ten participated in a focus group. Data were analysed thematically. Results Four main themes emerged from the analysis. The findings highlighted that carers typically received little or no information about antipsychotic medication. Carers commonly addressed the shortfall in information by obtaining additional information through online sources or distributing among carer networks material that they had developed themselves. Almost all carers emphasized that they should be involved in decisions about antipsychotic medication, but noted that they were typically excluded. The lack of involvement in medication decisions was a source of frustration, as carers could contribute saliently through sharing detailed knowledge about mental health consumers' lives, address communication gaps that resulted from disjointed care and improve communication between health professionals and mental health consumers. Conclusion Health professionals could consider improving the extent to which they collaborate with carers in medication decisions.

  August 25, 2017   doi: 10.1111/hex.12616   open full text
• Prioritizing novel and existing ambulance performance measures through expert and lay consensus: A three‐stage multimethod consensus study.
  Joanne E. Coster, Andy D. Irving, Janette K. Turner, Viet‐Hai Phung, Aloysius N. Siriwardena.
  Health Expectations. August 25, 2017
  Background Current ambulance quality and performance measures, such as response times, do not reflect the wider scope of care that services now provide. Using a three‐stage consensus process, we aimed to identify new ways of measuring ambulance service quality and performance that represent service provider and public perspectives. Design A multistakeholder consensus event, modified Delphi study, and patient and public consensus workshop. Setting and participants Representatives from ambulance services, patient and public involvement (PPI) groups, emergency care clinical academics, commissioners and policymakers. Results Nine measures/principles were highly prioritized by >75% of consensus event participants, including measures relating to pain, patient experience, accuracy of dispatch decisions and patient safety. Twenty experts participated in two Delphi rounds to further refine and prioritize measures; 20 measures in three domains scored ≥8/9, indicating good consensus, including proportion of calls correctly prioritized, time to definitive care and measures related to pain. Eighteen patient/public representatives attended a consensus workshop, and six measures were identified as important. These include time to definitive care, response time, reduction in pain scores, calls correctly prioritized to appropriate levels of response and survival to hospital discharge for treatable emergency conditions. Conclusions Using consensus methods, we identified a shortlist of ambulance outcome and performance measures that are important to ambulance clinicians and service providers, service users, commissioners, and clinical academics, reflecting current pre‐hospital ambulance care and services. The measures can potentially be used to assess pre‐hospital quality or performance over time, with most calculated using routinely available data.

  August 25, 2017   doi: 10.1111/hex.12610   open full text
• A coproduced patient and public event: An approach to developing and prioritizing ambulance performance measures.
  Andy Irving, Janette Turner, Maggie Marsh, Andrea Broadway‐Parkinson, Dan Fall, Joanne Coster, A. Niroshan Siriwardena.
  Health Expectations. August 25, 2017
  Background Patient and public involvement (PPI) is recognized as an important component of high‐quality health services research. PPI is integral to the Pre‐hospital Outcomes for Evidence Based Evaluation (PhOEBE) programme. The PPI event described in detail in this article focusses on the process of involving patients and public representatives in identifying, prioritizing and refining a set of outcome measures that can be used to support ambulance service performance measurement. Objective To obtain public feedback on little known, complex aspects of ambulance service performance measurement. Design The event was codesigned and coproduced with the PhOEBE PPI reference group and PhOEBE research team. The event consisted of brief researcher‐led presentations, group discussions facilitated by the PPI reference group members and electronic voting. Setting and participants Data were collected from eighteen patient and public representatives who attended an event venue in Yorkshire. Results The results of the PPI event showed that this interactive format and mode of delivery was an effective method to obtain public feedback and produced a clear indication of which ambulance performance measures were most highly favoured by event participants. Discussion and conclusions The event highlighted valuable contributions the PPI reference group made to the design process, supporting participant recruitment and facilitation of group discussions. In addition, the positive team working experience of the event proved a catalyst for further improvements in PPI within the PhOEBE project.

  August 25, 2017   doi: 10.1111/hex.12606   open full text
• Patient‐centred care is a way of doing things: How healthcare employees conceptualize patient‐centred care.
  Gemmae M. Fix, Carol VanDeusen Lukas, Rendelle E. Bolton, Jennifer N. Hill, Nora Mueller, Sherri L. LaVela, Barbara G. Bokhour.
  Health Expectations. August 25, 2017
  Background Patient‐centred care is now ubiquitous in health services research, and healthcare systems are moving ahead with patient‐centred care implementation. Yet, little is known about how healthcare employees, charged with implementing patient‐centred care, conceptualize what they are implementing. Objective To examine how hospital employees conceptualize patient‐centred care. Research Design We conducted qualitative interviews about patient‐centred care during site four visits, from January to April 2013. Subjects We interviewed 107 employees, including leadership, middle managers, front line providers and staff at four US Veteran Health Administration (VHA) medical centres leading VHA's patient‐centred care transformation. Measures Data were analysed using grounded thematic analysis. Findings were then mapped to established patient‐centred care constructs identified in the literature: taking a biopsychosocial perspective; viewing the patient‐as‐person; sharing power and responsibility; establishing a therapeutic alliance; and viewing the doctor‐as‐person. Results We identified three distinct conceptualizations: (i) those that were well aligned with established patient‐centred care constructs surrounding the clinical encounter; (ii) others that extended conceptualizations of patient‐centred care into the organizational culture, encompassing the entire patient‐experience; and (iii) still others that were poorly aligned with patient‐centred care constructs, reflecting more traditional patient care practices. Conclusions Patient‐centred care ideals have permeated into healthcare systems. Additionally, patient‐centred care has been expanded to encompass a cultural shift in care delivery, beginning with patients' experiences entering a facility. However, some healthcare employees, namely leadership, see patient‐centred care so broadly, it encompasses on‐going hospital initiatives, while others consider patient‐centred care as inherent to specific positions. These latter conceptualizations risk undermining patient‐centred care implementation by limiting transformational initiatives to specific providers or simply repackaging existing programmes.

  August 25, 2017   doi: 10.1111/hex.12615   open full text
• Material practices for meaningful engagement: An analysis of participatory learning and action research techniques for data generation and analysis in a health research partnership.
  Mary O'Reilly‐de Brún, Tomas Brún, Catherine A. O'Donnell, Maria Papadakaki, Aristoula Saridaki, Christos Lionis, Nicola Burns, Chris Dowrick, Katja Gravenhorst, Wolfgang Spiegel, Chris Van Weel, Evelyn Van Weel‐Baumgarten, Maria Van den Muijsenbergh, Anne MacFarlane.
  Health Expectations. August 25, 2017
  Background The material practices which researchers use in research partnerships may enable or constrain the nature of engagement with stakeholder groups. Participatory learning and action (PLA) research approaches show promise, but there has been no detailed analysis of stakeholders’ and researchers’ experiences of PLA techniques for data generation and co‐analysis. Objectives To explore stakeholders’ and researchers’ experiences of PLA techniques for data generation and co‐analysis. Design The EU RESTORE implementation science project employed a participatory approach to investigate and support the implementation of guidelines and training initiatives (GTIs) to enhance communication in cross‐cultural primary care consultations. We developed a purposeful sample of 78 stakeholders (migrants, general practice staff, community interpreters, service providers, service planners) from primary care settings in Austria, England, Greece, Ireland and The Netherlands. We used speed evaluations and participatory evaluations to explore their experiences of two PLA techniques—Commentary Charts and Direct Ranking—which were intended to generate data for co‐analysis by stakeholders about the GTIs under analysis. We evaluated 16 RESTORE researchers’ experiences using interviews. We conducted thematic and content analysis of all evaluation data. Results PLA Commentary Charts and Direct Ranking techniques, with their visual, verbal and tangible nature and inherent analytical capabilities, were found to be powerful tools for involving stakeholders in a collaborative analysis of GTIs. Stakeholders had few negative experiences and numerous multifaceted positive experiences of meaningful engagement, which resonated with researchers’ accounts. Conclusion PLA techniques and approaches are valuable as material practices in health research partnerships.

  August 25, 2017   doi: 10.1111/hex.12598   open full text
• Black and minority ethnic group involvement in health and social care research: A systematic review.
  Shoba Dawson, Stephen M. Campbell, Sally J. Giles, Rebecca L. Morris, Sudeh Cheraghi‐Sohi.
  Health Expectations. August 15, 2017
  Background Patient and public involvement (PPI) in research is growing internationally, but little is known about black and minority ethnic (BME) involvement and the factors influencing their involvement in health and social care research. Objectives To characterize and critique the empirical literature on BME‐PPI involvement in health and social care research. Search strategy Systematic searches of six electronic bibliographic databases were undertaken, utilizing both MeSH and free‐text terms to identify international empirical literature published between 1990 and 2016. Inclusion criteria All study designs that report primary data that involved BME groups in health or social care research. Screening was conducted by two reviewers. Data extraction and synthesis Data extraction and quality appraisal were performed independently. Data extraction focused on the level(s) of PPI involvement and where PPI activity occurred in the research cycle. Studies were quality‐assessed using the guidelines for measuring the quality and impact of user involvement in research. Data were analysed using a narrative approach. Main results Forty‐five studies were included with the majority undertaken in the USA focusing on African Americans and indigenous populations. Involvement most commonly occurred during the research design phase and least in data analysis and interpretation. Conclusion This is the first systematic review investigating BME involvement in health and social care research internationally. While there is a widespread support for BME involvement, this is limited to particular phases of the research and particular ethnic subgroups. There is a need to understand factors that influence BME involvement in all parts of the research cycle.

  August 15, 2017   doi: 10.1111/hex.12597   open full text
• Willingness to pay for antiretroviral drugs among HIV and AIDS clients in south‐east Nigeria.
  Chinyere Mbachu, Chijioke Okoli, Obinna Onwujekwe, Fabian Enabulele.
  Health Expectations. August 14, 2017
  Background The current trend of withdrawal of donor support for HIV/AIDS treatment in Nigeria may require that the cost of antiretroviral drugs be borne in part by infected people and their families. Objective This study was conducted to determine the economic value for free antiretroviral drugs (ARVs) expressed by clients receiving treatment for HIV/AIDS in a tertiary hospital. Study method The contingent valuation method was used to elicit the values attached to free ARVs from people living with HIV/AIDS that were receiving care in a public tertiary hospital in south‐east Nigeria. Exit poll using a pre‐tested questionnaire was undertaken with adult clients on treatment. The bidding game technique was used to elicit their willingness to pay (WTP) for ARVs for themselves and members of their households. Ordinary least squares (OLS) multiple regression analysis was used to test the construct validity of elicited WTP amounts. Results About a third of the respondents were willing to pay for a monthly supply of ARVs for themselves and household members. The mean WTP for monthly supply of ARVs for self was US$15.32 and for household member was US$15.26 (1US$=₦160). OLS regression analysis showed that employment status and higher socio‐economic status were positively associated with higher WTP. OLS showed that age and transport cost per clinic visit were negatively related to WTP. Knowing the risks of not adhering to treatment protocol was positively related to WTP. Conclusion The respondents positively valued the free ARVs. This calls for greater financial support for the sustainable provision of the treatment service. However, holistic financing mechanisms should be explored to ensure sustained funding in the event of complete withdrawal of donor support.

  August 14, 2017   doi: 10.1111/hex.12612   open full text
• Tensions in perspectives on suicide prevention between men who have attempted suicide and their support networks: Secondary analysis of qualitative data.
  Andrea S. Fogarty, Michael Spurrier, Michael J. Player, Kay Wilhelm, Erin L. Whittle, Fiona Shand, Helen Christensen, Judith Proudfoot.
  Health Expectations. August 14, 2017
  Background Men generally have higher rates of suicide, despite fewer overt indicators of risk. Differences in presentation and response suggest a need to better understand why suicide prevention is less effective for men. Objective To explore the views of at‐risk men, friends and family about the tensions inherent in suicide prevention and to consider how prevention may be improved. Design Secondary analysis of qualitative interview and focus group data, using thematic analysis techniques, alongside bracketing, construction and contextualisation. Setting and participants A total of 35 men who had recently made a suicide attempt participated in interviews, and 47 family and friends of men who had made a suicide attempt took part in focus groups. Participants recounted their experiences with men's suicide attempts and associated interventions, and suggested ways in which suicide prevention may be improved. Results Five tensions in perspectives emerged between men and their support networks, which complicated effective management of suicide risk: (i) respecting privacy vs monitoring risk, (ii) differentiating normal vs risky behaviour changes, (iii) familiarity vs anonymity in personal information disclosure, (iv) maintaining autonomy vs imposing constraints to limit risk, and (v) perceived need for vs failures of external support services. Conclusion Tension between the different perspectives increased systemic stress, compounding problems and risk, thereby decreasing the effectiveness of detection of and interventions for men at risk of suicide. Suggested solutions included improving risk communication, reducing reliance on single source supports and increasing intervention flexibility in response to individual needs.

  August 14, 2017   doi: 10.1111/hex.12611   open full text
• Involved, inputting or informing: “Shared” decision making in adult mental health care.
  Eleanor Bradley, Debra Green.
  Health Expectations. August 04, 2017
  Background A diagnosis of serious mental illness can impact on the whole family. Families informally provide significant amounts of care but are disproportionately at risk of carer burden when compared to those supporting people with other long‐term conditions. Shared decision making (SDM) is an ethical model of health communication associated with positive health outcomes; however, there has been little research to evaluate how routinely family is invited to participate in SDM, or what this looks like in practice. Objective This UK study aimed to better understand how the family caregivers of those diagnosed with SMI are currently involved in decision making, particularly decisions about treatment options including prescribed medication. Objectives were to Explore the extent to which family members wish to be involved in decisions about prescribed medication Determine how and when professionals engage family in these decisions Identify barriers and facilitators associated with the engagement of family in decisions about treatment. Participants Open‐ended questions were sent to professionals and family members to elicit written responses. Qualitative responses were analysed thematically. Results Themes included the definition of involvement and “rules of engagement.” Staff members are gatekeepers for family involvement, and the process is not democratic. Family and staff ascribe practical, rather than recovery‐oriented roles to family, with pre‐occupation around notions of adherence. Conclusions Staff members need support, training and education to apply SDM. Time to exchange information is vital but practically difficult. Negotiated teams, comprising of staff, service users, family, peers as applicable, with ascribed roles and responsibilities could support SDM.

  August 04, 2017   doi: 10.1111/hex.12601   open full text
• Patients’ views on the use of an Option Grid for knee osteoarthritis in physiotherapy clinical encounters: An interview study.
  Katharine Kinsey, Jill Firth, Glyn Elwyn, Adrian Edwards, Katherine Brain, Katy Marrin, Alan Nye, Fiona Wood.
  Health Expectations. August 04, 2017
  Background Patient decision support tools have been developed as a means of providing accurate and accessible information in order for patients to make informed decisions about their care. Option Grids™ are a type of decision support tool specifically designed to be used during clinical encounters. Objective To explore patients’ views of the Option Grid encounter tool used in clinical consultations with physiotherapists, in comparison with usual care, within a patient population who are likely to be disadvantaged by age and low health literacy. Methods Semi‐structured interviews with 72 patients (36 who had been given an Option Grid in their consultation and 36 who had not). Thematic analysis explored patients’ understanding of treatment options, perceptions of involvement, and readability and utility of the Option Grid. Results Interviews suggested that the Option Grid facilitated more detailed discussion about the risks and benefits of a wider range of treatment options for osteoarthritis of the knee. Participants indicated that the Option Grid was clear and aided their understanding of a structured progression of the options as their condition advanced, although it was not clear whether the Option Grid facilitated greater engagement in shared decision making. Discussion and conclusion The Option Grid for osteoarthritis of the knee was well received by patient participants who reported that it helped them to understand their options, and made the notion of choice explicit. Use of Option Grids should be considered within routine consultations.

  August 04, 2017   doi: 10.1111/hex.12570   open full text
• Factors associated with shared decision making among primary care physicians: Findings from a multicentre cross‐sectional study.
  Matthew Menear, Mirjam Marjolein Garvelink, Rhéda Adekpedjou, Maria Margarita Becerra Perez, Hubert Robitaille, Stéphane Turcotte, France Légaré.
  Health Expectations. August 02, 2017
  Background Despite growing recognition that shared decision making (SDM) is central for patient‐centred primary care, adoption by physicians remains limited in routine practice. Objective To examine the characteristics of physicians, patients and consultations associated with primary care physicians’ SDM behaviours during routine care. Methods A multicentre cross‐sectional survey study was conducted with 114 unique patient‐physician dyads recruited from 17 primary care clinics in Quebec and Ontario, Canada. Physicians’ SDM behaviours were assessed with the 12‐item OPTION scale scored by third observers using audio‐recordings of consultations. Independent variables included 21 physician, patient and consultation characteristics. We assessed factors associated with OPTION scores using multivariate linear regression models. Results On the OPTION scale, where higher scores indicated greater SDM behaviours, physicians earned an overall mean score of 25.7±9.8 of 100. In the final adjusted regression model, higher OPTION scores were associated with physicians’ social participation (involvement in one committee β=5.75, P=.04; involvement in two or more committees β=7.74, P=.01), patients’ status as employed (β=6.48, P=.02), clinically significant decisional conflict in patients (β=7.15, P=.002) and a longer duration of consultations (β=0.23, P=.002). Conclusion Physicians’ social participation, patients’ employment status and decisional conflict and the duration of consultations were associated with primary care physicians’ SDM behaviours in routine care. These factors should be considered when designing strategies to implement SDM and promote more patient‐centred care in primary care.

  August 02, 2017   doi: 10.1111/hex.12603   open full text
• “This illness diminishes me. What it does is like theft”: A qualitative meta‐synthesis of people's experiences of living with asthma.
  Kristen Pickles, Daniela Eassey, Helen K. Reddel, Louise Locock, Susan Kirkpatrick, Lorraine Smith.
  Health Expectations. August 02, 2017
  Background What matters to people in their everyday experiences of living with asthma is influenced by a diverse range of personal, social, medical and environmental factors. Previous reviews of the asthma literature have largely focused on medical aspects of asthma or specific population groups with particular needs. Objective To identify, describe and synthesize from the available qualitative literature the views and experiences of adults living with asthma. Method We systematically searched for qualitative studies reporting on the personal experience of living with asthma. A meta‐synthesis approach was used to analyse and interpret the data. Key themes relating to personal perspectives on asthma were identified and grouped into overarching concepts. Results We identified 26 studies. There was a paucity of literature on the physical burden of asthma symptoms and the role of social support. Our synthesis generated a central concept of the “work” associated with living with asthma: work was of a personal nature, and at times an intensely emotional experience. Individuals tailored their behaviour in response to demands of the physical and social environment, including interactions with health‐care professionals. Conclusion This is the first systematic review of the qualitative literature reporting on people's own perspectives of living with asthma. Our findings draw attention to the nuances and sensitivities surrounding patient experiences of self‐management. Medical care is a central plank of managing chronic conditions, but our health‐care systems are now expected to deliver patient‐centred care. Considering the broader aspects of asthma management, beyond that of symptoms and treatment, will help to facilitate comprehensive care.

  August 02, 2017   doi: 10.1111/hex.12605   open full text
• Multiple influences on participating in physical activity in older age: Developing a social ecological approach.
  Elisabeth R. Boulton, Maria Horne, Chris Todd.
  Health Expectations. August 02, 2017
  Background Evidence of the benefits of engaging in physical activity (PA) is strong, yet the number of older adults meeting the recommended 150 min/wk is low. Policy to increase uptake and adherence has focussed on the health benefits of PA, but may not be the most successful approach. Objective This qualitative study sought to ask older adults what the components of a successful intervention to promote PA would be, by asking active older adults what motivated them to be active and asking inactive older adults what might encourage them to change. Design, setting and participants Focus groups and semi‐structured interviews were held with 60 community‐dwelling older adults, aged 50‐87 years. Framework analysis was used to analyse the data, and themes congruent with a social ecological model of behaviour change were developed. Findings Five themes emerged that influenced PA engagement at multiple levels: individual; interpersonal; perceived environment; community or organizational; and policy. PA engagement was determined by attitude or health status for some participants, but for the majority, PA being enjoyable, sociable, affordable, accessible, flexible and seasonal were more important than the health benefits. Discussion and conclusions A social ecological model is presented, highlighting the fact that both motivated and unmotivated older adults need to have a range of appropriately labelled, appealing and accessible activities to choose from when thinking about engaging in PA. Policymakers and practitioners need to ensure that their offers of activity sessions are easy to access and easy to remain involved in.

  August 02, 2017   doi: 10.1111/hex.12608   open full text
• Improving adherence to multiple medications in older people in primary care: Selecting intervention components to address patient‐reported barriers and facilitators.
  Deborah E. Patton, Cathal A. Cadogan, Cristín Ryan, Jill J. Francis, Gerard J. Gormley, Peter Passmore, Ngaire Kerse, Carmel M. Hughes.
  Health Expectations. August 01, 2017
  Background Medication adherence is vital to ensuring optimal patient outcomes, particularly amongst multimorbid older people prescribed multiple medications. Interventions targeting adherence often lack a theoretical underpinning and this may impact on effectiveness. The theoretical domains framework (TDF) of behaviour can aid intervention development by systematically identifying key determinants of medication adherence. Objectives This study aimed to (i) identify determinants (barriers, facilitators) of adherence to multiple medications from older people's perspectives; (ii) identify key domains to target for behaviour change; and (iii) map key domains to intervention components [behaviour change techniques (BCTs)] that could be delivered in an intervention by community pharmacists. Method Focus groups were conducted with older people (>65 years) receiving ≥4 medications. Questions explored the 12 domains of the TDF (eg “Knowledge,” “Emotion”). Data were analysed using the framework method and content analysis. Identification of key domains and mapping to intervention components (BCTs) followed established methods. Results Seven focus groups were convened (50 participants). A wide range of determinants were identified as barriers (eg forgetfulness, prioritization of medications) and facilitators (eg social support, personalized routines) of adherence to multiple medications. Eight domains were identified as key targets for behaviour change (eg “Social influences,” “Memory, attention and decision processes,” “Motivation and goals”) and mapped to 11 intervention components (BCTs) to include in an intervention [eg “Social support or encouragement (general),” “Self‐monitoring of the behaviour,” “Goal‐setting (behaviour)”]. Conclusion This study used a theoretical underpinning to identify potential intervention components (BCTs). Future work will incorporate the selected BCTs into an intervention that will undergo feasibility testing in community pharmacies.

  August 01, 2017   doi: 10.1111/hex.12595   open full text
• Extent, quality and impact of patient and public involvement in antimicrobial drug development research: A systematic review.
  David Evans, Emma Bird, Andy Gibson, Sally Grier, Teh Li Chin, Margaret Stoddart, Alasdair MacGowan,.
  Health Expectations. July 27, 2017
  Background Patient and public involvement (PPI) is increasingly recognized as bringing a range of benefits to clinical and health services research. Recent systematic reviews have identified and synthesized many benefits (eg higher recruitment rates) and some costs (eg extra time need). Much of the literature focuses on PPI in long‐term conditions rather than more acute health care in which the majority of microbiological research is undertaken. Objectives The aim was to identify the extent, quality and impact of PPI in antimicrobial drug development research. Objectives were to identify any relevant reporting of PPI in antimicrobial research; appraise the quality of reporting on PPI using recognized PPI reporting and critical appraisal tools; and extract and synthesize data on the impact of PPI. Search strategy A systematic review was undertaken with a search strategy based on four word groups (PPI, patients, antimicrobial drug development and outcomes). Eight online databases were searched. Inclusion criteria English language publication, publication between 1996 and 2016 and studies describing PPI in antimicrobial drug development research. Main results No studies were found through online searching that met the search strategy and inclusion criteria. One relevant protocol paper with a brief mention of PPI was identified through expert recommendation. Commentary papers recommending PPI were identified through website searching and expert opinion. Discussion and conclusions Despite strong policy guidance encouraging PPI at the international and national levels, and anecdotal accounts of PPI taking place, evidence for the extent, quality and impact of PPI in antimicrobial drug development research has not yet appeared in the peer‐reviewed literature.

  July 27, 2017   doi: 10.1111/hex.12587   open full text
• Citizen's Charter in a primary health‐care setting of Nepal: An accountability tool or a “mere wall poster”?
  Gagan Gurung, Robin Gauld, Philip C. Hill, Sarah Derrett.
  Health Expectations. July 21, 2017
  Background Despite some empirical findings on the usefulness of citizen's charters on awareness of rights and services, there is a dearth of literature about charter implementation and impact on health service delivery in low‐income settings. Objective To gauge the level of awareness of the Charter within Nepal's primary health‐care (PHC) system, perceived impact and factors affecting Charter implementation. Method Using a case study design, a quantitative survey was administered to 400 participants from 22 of 39 PHC facilities in the Dang District to gauge awareness of the Charter. Additionally, qualitative interviews with 39 key informants were conducted to explore the perceived impact of the Charter and factors affecting its implementation. Results Few service users (15%) were aware of the existence of the Charter. Among these, a greater proportion were literate, and there were also differences according to ethnicity and occupational group. The Charter was usually not properly displayed and had been implemented with no prior public consultation. It contained information that provided awareness of health facility services, particularly the more educated public, but had limited potential for increasing transparency and holding service providers accountable to citizens. Proper display, consultation with stakeholders, orientation or training and educational factors, follow‐up and monitoring, and provision of sanctions were all lacking, negatively influencing the implementation of the Charter. Conclusion Poor implementation and low public awareness of the Charter limit its usefulness. Provision of sanctions and consultation with citizens in Charter development are needed to expand the scope of Charters from information brochures to tools for accountability.

  July 21, 2017   doi: 10.1111/hex.12596   open full text
• Involving citizens in priority setting for public health research: Implementation in infection research.
  Timothy M. Rawson, Enrique Castro‐Sánchez, Esmita Charani, Fran Husson, Luke S. P. Moore, Alison H. Holmes, Raheelah Ahmad.
  Health Expectations. July 21, 2017
  Background Public sources fund the majority of UK infection research, but citizens currently have no formal role in resource allocation. To explore the feasibility and willingness of citizens to engage in strategic decision making, we developed and tested a practical tool to capture public priorities for research. Method A scenario including six infection themes for funding was developed to assess citizen priorities for research funding. This was tested over two days at a university public festival. Votes were cast anonymously along with rationale for selection. The scenario was then implemented during a three‐hour focus group exploring views on engagement in strategic decisions and in‐depth evaluation of the tool. Results 188/491(38%) prioritized funding research into drug‐resistant infections followed by emerging infections(18%). Results were similar between both days. Focus groups contained a total of 20 citizens with an equal gender split, range of ethnicities and ages ranging from 18 to >70 years. The tool was perceived as clear with participants able to make informed comparisons. Rationale for funding choices provided by voters and focus group participants are grouped into three major themes: (i) Information processing; (ii) Knowledge of the problem; (iii) Responsibility; and a unique theme within the focus groups (iv) The potential role of citizens in decision making. Divergent perceptions of relevance and confidence of “non‐experts” as decision makers were expressed. Conclusion Voting scenarios can be used to collect, en‐masse, citizens' choices and rationale for research priorities. Ensuring adequate levels of citizen information and confidence is important to allow deployment in other formats.

  July 21, 2017   doi: 10.1111/hex.12604   open full text
• Comparison of preferences of healthcare professionals and MS patients for attributes of disease‐modifying drugs: A best‐worst scaling.
  Ingrid E. H. Kremer, Silvia M. A. A. Evers, Peter J. Jongen, Mickaël Hiligsmann.
  Health Expectations. July 21, 2017
  Background The choice between disease‐modifying drugs (DMDs) for the treatment of multiple sclerosis (MS) becomes more often a shared decision between the patient and the neurologist and MS nurse. This study aimed to assess which DMD attributes are most important for the healthcare professionals in selecting a DMD for a patient. Subsequently, within this perspective, the neurologists’ and nurses’ perspectives were compared. Lastly, the healthcare professionals’ perspective was compared with the patients’ perspective to detect any differences that may need attention in the communication about DMDs. Design A best‐worst scaling (BWS) was conducted among 27 neurologists and 33 MS nurses treating patients with MS to determine the importance of 27 DMD attributes. These attributes were identified through three focus groups with MS patients in a previous study (N=19). Relative importance scores (RISs) were estimated for each attribute. Multivariable linear regression analyses were used to compare the different perspectives. Results According to the neurologists and nurses, safety of the DMD was the most important DMD attribute in the treatment decision, closely followed by effect on disability progression, quality of life and relapse rate. Patients with MS agreed with the importance of the last three attributes, but valued safety significantly lower (b=−2.59, P<.001). Conclusions This study suggests that, overall, neurologists and nurses regard the same DMD attributes as important as MS patients with the notable exception of safety. This study provides valuable information for the development of interventions to support shared decision making and highlights which attributes of DMDs may need additional attention.

  July 21, 2017   doi: 10.1111/hex.12599   open full text
• Understanding leisure‐time physical activity: Voices of people with MS who have moderate‐to‐severe disability and their family caregivers.
  Afolasade Fakolade, Julie Lamarre, Amy Latimer‐Cheung, Trisha Parsons, Sarah A. Morrow, Marcia Finlayson.
  Health Expectations. July 19, 2017
  Background Physical activity (PA) is beneficial for all people, yet people affected by multiple sclerosis (MS) find regular PA challenging. These people may include individuals with the disease who have moderate‐to‐severe disability and their family caregivers. For researchers and clinicians to effectively promote PA among caregiver/care‐recipient dyads with moderate‐to‐severe MS, a comprehensive understanding of the shared PA experiences of these dyads would be beneficial. Objective We explored shared experiences of caregiver/care‐recipient dyads affected by moderate‐to‐severe MS about PA and directions for intervention. Methods Six focus groups with 23 people with moderate‐to‐severe MS and 12 family caregivers were conducted. Data were analysed using a constant comparative approach. Results Three major themes emerged as follows: (i) PA is a continuum, (ii) cycle of disengagement and (iii) cycle of adjustment. The first theme captured the dyads understanding that PA falls along a continuum ranging from highly structured to unstructured activities. Cycle of disengagement captured the experiences of dyads engaging in little or no PA. These dyads perceived internal and external issues as drivers of the cycle of disengagement, while availability of supportive programmes and services or people helped the dyads to break out of the cycle. When the cycle of disengagement was broken, the dyads described moving towards the cycle of adjustment, where they were able to learn skills and take action to incorporate PA into daily routines. Conclusion This research highlights the need to adopt an integrative approach that acknowledges the caregiver/care‐recipient dyad with moderate‐to‐severe MS as a focus for PA intervention.

  July 19, 2017   doi: 10.1111/hex.12600   open full text
• Accessing support and empowerment online: The experiences of individuals with diabetes.
  Ellen Brady, Julia Segar, Caroline Sanders.
  Health Expectations. July 18, 2017
  Context The use of the internet for health information by those with long‐term conditions is growing. It has been argued that this represents a form of empowerment by patients, as it enables them to control the content and flow of the information available to them. To explore this, the use of online discussion groups by those with diabetes was examined. Method Semi‐structured interviews were conducted with 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely discussion boards, newsletters, and research networks related to diabetes. Results By drawing on the advice, information, and support shared online, participants were empowered to position themselves as active participants in their own health care and to further engage with health‐care professionals. Conclusion The findings indicate that forums can play a valuable role in aiding and motivating individuals in the daily management diabetes and highlight how this support is used to complement formal health services. However, more work needs to be carried out to determine to explore when and under what circumstances online support may be particularly beneficial to those with long‐term conditions.

  July 18, 2017   doi: 10.1111/hex.12552   open full text
• The role of experiential knowledge within attitudes towards genetic carrier screening: A comparison of people with and without experience of spinal muscular atrophy.
  Felicity K. Boardman, Philip J. Young, Oliver Warren, Frances E. Griffiths.
  Health Expectations. July 13, 2017
  Purpose Autosomal recessive conditions, while individually rare, are a significant health burden with limited treatment options. Population carrier screening has been suggested as a means of tackling them. Little is known, however, about the attitudes of the general public towards such carrier screening and still less about the views of people living with candidate genetic diseases. Here, we focus on the role that such experience has on screening attitudes by comparing views towards screening of people with and without prior experience of the monogenetic disorder, Spinal Muscular Atrophy. Methods An exploratory sequential mixed methods design was adopted. In‐depth qualitative interviews were used to develop two surveys. The surveys addressed attitudes towards carrier screening (pre‐conceptual and prenatal) for SMA. Participants 337 participants with SMA experience completed the SMA Screening Survey (UK) and 336 participants with no prior experience of SMA completed the UK GenPop Survey, an amended version of the SMA Screening Survey (UK). Results The majority of both cohorts were in favour of pre‐conception and prenatal carrier screening, however people with experience of type II SMA were least likely to support either. Key differences emerged around perceptions of SMA, with those without SMA experience taking a dimmer view of the condition than those with. Conclusion This study underscores the significance of prior experience with the condition to screening attitudes. It highlights the need for accurate and high‐quality educational resources to support any future carrier screening programmes, that particularly in relation to rare genetic disorders like SMA that will fall outside the remit of everyday experience for the majority of the population.

  July 13, 2017   doi: 10.1111/hex.12602   open full text
• Service user involvement in the coproduction of a mental health nursing metric: The Therapeutic Engagement Questionnaire.
  Mary Chambers, Susan McAndrew, Fiona Nolan, Ben Thomas, Paul Watts, Xenya Kantaris.
  Health Expectations. July 12, 2017
  Service users’ involvement in mental health service research is increasingly acknowledged as important, yet, whilst involving users of mental health services as research participants is commonplace, seeking out their experience and indeed their “expertise” to facilitate the development of tools to be used within mental health services is in its infancy. This article describes the involvement and views of service users in the development of a nursing metric—the Therapeutic Engagement Questionnaire. It presents their role in the three stages of development: generation, statement reduction and authentication.

  July 12, 2017   doi: 10.1111/hex.12526   open full text
• Decision making in NICE single technological appraisals: How does NICE incorporate patient perspectives?
  Ferhana Hashem, Michael W. Calnan, Patrick R. Brown.
  Health Expectations. July 07, 2017
  Context The National Institute for Health and Care Excellence (NICE) has an explicit mandate to include patient and public involvement in the appraisal of medicines to be available for funding on the NHS. NICE involves an appraisal committee who are required to take on board experiential evidence from patient experts alongside population‐based evidence on clinical and cost‐effectiveness when making a decision whether to fund a drug. Objective This paper considers how NICE Single Technological Appraisal (STA) committees attempt to incorporate the views of patients in making decisions about funding medicines on the NHS. Methods A prospective design was employed to follow three pharmaceutical products involving three different appraisal committees. Three data collection methods were used: analysis of documentary evidence sent by NICE, non‐participant unstructured observations of the open and closed sessions of meetings and qualitative interviews. Settings and participants Unstructured non‐participant observations were carried out at nine STA meetings, and 41 semi‐structured interviews were undertaken with committee members from NICE's STA committees, patient experts, analysts from NICE's project team and drug manufacturers. Results Our analysis showed how the committees displayed a preference for an ideal‐type of patient representative, disagreement among the committee when weighing‐up patient statements in the STA process and more pre‐preparation support for patient involvement. Conclusions Although NICE has attempted to adopt an approach flexible to patients and carers through formal decision‐making arrangements that incorporate patient views, nonetheless, the processes of the STAs can in fact undermine the very evidence collected from patient representatives.

  July 07, 2017   doi: 10.1111/hex.12594   open full text
• Using CollaboRATE, a brief patient‐reported measure of shared decision making: Results from three clinical settings in the United States.
  Rachel C. Forcino, Paul J. Barr, A. James O'Malley, Roger Arend, Molly G. Castaldo, Elissa M. Ozanne, Sanja Percac‐Lima, Cheryl D. Stults, Ming Tai‐Seale, Rachel Thompson, Glyn Elwyn.
  Health Expectations. July 05, 2017
  Introduction CollaboRATE is a brief patient survey focused on shared decision making. This paper aims to (i) provide insight on facilitators and challenges to implementing a real‐time patient survey and (ii) evaluate CollaboRATE scores and response rates across multiple clinical settings with varied patient populations. Method All adult patients at three United States primary care practices were eligible to complete CollaboRATE post‐visit. To inform key learnings, we aggregated all mentions of unanticipated decisions, problems and administration errors from field notes and email communications. Mixed‐effects logistic regression evaluated the impact of site, clinician, patient age and patient gender on the CollaboRATE score. Results While CollaboRATE score increased only slightly with increasing patient age (OR 1.018, 95% CI 1.014‐1.021), female patient gender was associated with significantly higher CollaboRATE scores (OR 1.224, 95% CI 1.073‐1.397). Clinician also predicts CollaboRATE score (random effect variance 0.146). Site‐specific factors such as clinical workflow and checkout procedures play a key role in successful in‐clinic implementation and are significantly related to CollaboRATE scores, with Site 3 scoring significantly higher than Site 1 (OR 1.759, 95% CI 1.216 to 2.545) or Site 2 (z=−2.71, 95% CI −1.114 to −0.178). Discussion This study demonstrates that CollaboRATE can be used in diverse primary care settings. A clinic's workflow plays a crucial role in implementation. Patient experience measurement risks becoming a burden to both patients and administrators. Episodic use of short measurement tools could reduce this burden.

  July 05, 2017   doi: 10.1111/hex.12588   open full text
• Qualitative insights into the experience of teaching shared decision making within adult education health literacy programmes for lower‐literacy learners.
  Danielle M. Muscat, Suzanne Morony, Sian K. Smith, Heather L. Shepherd, Haryana M. Dhillon, Andrew Hayen, Lyndal Trevena, Karen Luxford, Don Nutbeam, Kirsten J. McCaffery.
  Health Expectations. July 05, 2017
  Background Enhancing health literacy can play a major role in improving healthcare and health across the globe. To build higher‐order (communicative/critical) health literacy skills among socially disadvantaged Australians, we developed a novel shared decision making (SDM) training programme for adults with lower literacy. The programme was delivered by trained educators within an adult basic education health literacy course. Objective To explore the experience of teaching SDM within a health literacy programme and investigate whether communicative/critical health literacy content meets learner needs and teaching and institutional objectives. Design and participants Qualitative interview study with 11 educators who delivered the SDM programme. Transcripts were analysed using the Framework approach; a matrix‐based method of thematic analysis. Results Teachers noted congruence in SDM content and the institutional commitment to learner empowerment in adult education. The SDM programme was seen to offer learners an alternative to their usual passive approach to healthcare decision making by raising awareness of the right to ask questions and consider alternative test/treatment options. Teachers valued a structured approach to training building on foundational skills, with language reinforcement and take‐home resources, but many noted the need for additional time to develop learner understanding and cover all aspects of SDM. Challenges for adult learners included SDM terminology, computational numerical risk tasks and understanding probability concepts. Discussion and conclusions SDM programmes can be designed in a way that both supports teachers to deliver novel health literacy content and empowers learners. Collaboration between adult education and healthcare sectors can build health literacy capacity of those most in need.

  July 05, 2017   doi: 10.1111/hex.12580   open full text
• The association between patient activation and self‐care practices: A cross‐sectional study of an Australian population with comorbid diabetes and chronic kidney disease.
  Edward Zimbudzi, Clement Lo, Sanjeeva Ranasinha, Peter G Kerr, Kevan R Polkinghorne, Helena Teede, Timothy Usherwood, Rowan G Walker, Greg Johnson, Greg Fulcher, Sophia Zoungas.
  Health Expectations. July 04, 2017
  Objective This study aimed to examine the association between performance of self‐care activities and patient or disease factors as well as patient activation levels in patients with diabetes and chronic kidney disease (CKD) in Australia. Methods A cross‐sectional study was conducted among adults with diabetes and CKD (eGFR <60 mL/min/1.73m2) who were recruited from renal and diabetes clinics of four tertiary hospitals in Australia. Demographic and clinical data were collected, as well as responses to the Patient Activation Measure (PAM) and the Summary of Diabetes Self‐Care Activities (SDSCA) scale. Regression analyses were performed to determine the relationship between activation and performance of self‐care activities. Results A total of 317 patients (70% men) with a mean age of 66.9 (SD=11.0) years participated. The mean (SD) PAM and composite SDSCA scores were 57.6 (15.5) % (range 0‐100) and 37.3 (11.2) (range 0‐70), respectively. Younger age, being male, advanced stages of CKD and shorter duration of diabetes were associated with lower scores in one or more self‐care components. Patient activation was positively associated with the composite SDSCA score, and in particular the domains of general diet and blood sugar checking (P<.05), but not specific diet, exercising and foot checking. Conclusion In people with diabetes and CKD, a high level of patient activation was positively associated with a higher overall level of self‐care. Our results identify subgroups of people who may benefit from tailored interventions to further improve their health outcomes. Further prospective studies are warranted to confirm present findings.

  July 04, 2017   doi: 10.1111/hex.12577   open full text
• Asking what matters: The relevance and use of patient‐reported outcome measures that were developed without patient involvement.
  Bianca Wiering, Dolf Boer, Diana Delnoij.
  Health Expectations. July 04, 2017
  Background Patient‐reported outcome measures (PROMs) are increasingly used to establish the value of health care. In order to reflect value, PROMs should measure outcomes that matter to patients. However, patients are not always involved in the development of PROMs. This study therefore aimed to investigate whether PROMs, which were developed without patient involvement, are relevant to patients and whether the level of importance allocated towards aspects of these PROMs varies between patient groups. Methods All patients from 20 Dutch hospitals undergoing hip or knee surgery in 2014 were invited to a PROMs survey. Participants were asked to rate the importance of each of the items in the HOOS‐Physical Function Short form or the KOOS‐Physical Function Short form, the EQ‐5D and the NRS pain. Results Most outcomes were considered important. However, 77.7% of hip surgery patients rated being able to run as unimportant. Being able to kneel (32.7%) or squat (39.6%) was not important to a considerable minority of knee surgery patients. Pain, especially during rest, was considered very important by both hip (68.2%) and knee (66.5%) surgery patients. Patients who were older, male, experienced overall bad health and psychological health considered many items from the PROMs less important than other patients. Discussion Patients differ in what they consider important. Health‐care professionals should explore patients’ preferences and discuss which treatment options best fit patients’ preferences. Additionally, if PROMs are used in performance measurement, further research is needed to look at whether and how variation in patient preferences can be taken into account.

  July 04, 2017   doi: 10.1111/hex.12573   open full text
• Research priorities about stoma‐related quality of life from the perspective of people with a stoma: A pilot survey.
  Gill Hubbard, Claire Taylor, Becca Beeken, Anna Campbell, Jackie Gracey, Chloe Grimmett, Abi Fisher, Gozde Ozakinci, Sarah Slater, Trish Gorely.
  Health Expectations. July 04, 2017
  Background There is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited. Objectives To improve the quality of life of people with a stoma through use of evidence‐based practice based on research priorities set by patients. Design and Methods Online pilot survey publicized in 2016 via United Kingdom stoma charities. People ranked nine stoma‐related quality of life topics in order of research priority. Participants People 16 years of age and over who currently have or have had a stoma for treatment for any medical condition. Analysis Distributions of the priority scores for each of the nine research topics were examined. Group differences were explored using either the Mann–Whitney U‐test or the Kruskal–Wallis test depending on the number of groups. Results In total, 225 people completed the survey. The most important research priority was pouch leak problems and stoma bag/appliance problems followed by hernia risk. There were statistically significant differences in ranking research priorities between males and females, age, underlying disease that led to a stoma, stoma type and length of time with a stoma. Conclusion People with a stoma are willing to engage in and set research priorities. The results should contribute towards future research about setting the research agenda for the study of stoma‐related concerns that impact quality of life.

  July 04, 2017   doi: 10.1111/hex.12585   open full text
• Evaluating patient and public involvement in health research: from theoretical model to practical workshop.
  Andy Gibson, Jo Welsman, Nicky Britten.
  Health Expectations. June 30, 2017
  Background There is a growing literature on evaluating aspects of patient and public involvement (PPI). We have suggested that at the core of successful PPI is the dynamic interaction of different forms of knowledge, notably lay and professional. We have developed a four‐dimensional theoretical framework for understanding these interactions. Aim We explore the practical utility of the theoretical framework as a tool for mapping and evaluating the experience of PPI in health services research. Methods We conducted three workshops with different PPI groups in which participants were invited to map their PPI experiences on wall charts representing the four dimensions of our framework. The language used to describe the four dimensions was modified to make it more accessible to lay audiences. Participants were given sticky notes to indicate their own positions on the different dimensions and to write explanatory comments if they wished. Participants’ responses were then discussed and analysed as a group. Results The three groups were distinctive in their mapped responses suggesting different experiences in relation to having a strong or weak voice in their organization, having few or many ways of getting involved, addressing organizational or public concerns and believing that the organization was willing to change or not. Discussion The framework has practical utility for mapping and evaluating PPI interactions and is sensitive to differences in PPI experiences within and between different organizations. The workshops enabled participants to reflect collaboratively on their experiences with a view to improving PPI experiences and planning for the future.

  June 30, 2017   doi: 10.1111/hex.12486   open full text
• Assessing the public acceptability of proposed policy interventions to reduce the misuse of antibiotics in Australia: A report on two community juries.
  Chris Degeling, Jane Johnson, Jon Iredell, Ky‐Anh Nguyen, Jacqueline M. Norris, John D. Turnidge, Angus Dawson, Stacy M. Carter, Gwendolyn L. Gilbert.
  Health Expectations. June 30, 2017
  Objective To elicit the views of well‐informed community members on the acceptability of proposed policy interventions designed to improve community use of antibiotics in Australia. Design Two community juries held in 2016. Setting and participants Western Sydney and Dubbo communities in NSW, Australia. Twenty‐nine participants of diverse social and cultural backgrounds, mixed genders and ages recruited via public advertising: one jury was drawn from a large metropolitan setting; the other from a regional/rural setting. Main outcome measure Jury verdict and rationale in response to a prioritization task and structured questions. Results Both juries concluded that potential policy interventions to curb antibiotic misuse in the community should be directed towards: (i) ensuring that the public and prescribers were better educated about the dangers of antibiotic resistance; (ii) making community‐based human and animal health‐care practitioners accountable for their prescribing decisions. Patient‐centred approaches such as delayed prescribing were seen as less acceptable than prescriber‐centred approaches; both juries completely rejected any proposal to decrease consumer demand by increasing antibiotic prices. Conclusion These informed citizens acknowledged the importance of raising public awareness of the risks, impacts and costs of antibiotic resistance and placed a high priority on increasing social and professional accountability through restrictive measures. Their overarching aim was that policy interventions should be directed towards creating collective actions and broad social support for changing antibiotic use through establishing and explaining the need for mechanisms to control and support better prescribing by practitioners, while not transferring the burdens, costs and risks of interventions to consumers.

  June 30, 2017   doi: 10.1111/hex.12589   open full text
• “Part of the Team”: Mapping the outcomes of training patients for new roles in health research and planning.
  Svetlana Shklarov, Deborah A. Marshall, Tracy Wasylak, Nancy J. Marlett.
  Health Expectations. June 28, 2017
  Background A patient research internship (Patient and Community Engagement Research program—PaCER) was created to support a provincial commitment by Alberta Health Services’ Strategic Clinical Networks™ to find new ways to engage patients in a new interdisciplinary organization to support evidence‐informed improvements in clinical outcomes across the health system. Objective Implement and test a new research method and training curriculum to build patient capacity for engagement in health through peer‐to‐peer research. Design Programme evaluation using Outcome Mapping and the grounded theory method. Setting and Participants Twenty‐one patients with various chronic conditions completed one year of training in adapted qualitative research methods, including an internship where they designed and conducted five peer‐to‐peer inquiries into a range of health experiences. Main Outcome Measures Outcomes were continually monitored and evaluated using an Outcome Mapping framework, in combination with grounded theory analysis, based on data from focus groups, observation, documentation review and semi‐structured interviews (21 patient researchers, 15 professional collaborators). Results Key stakeholders indicated the increased capacity of patients to engage in health‐care research and planning, and the introduction and acceptance of new, collaborative roles for patients in health research. The uptake of new patient roles in health‐care planning began to impact attitudes and practices. Conclusions Patient researchers become “part of the team” through cultural and relationship changes that occur in two convergent directions: (i) building the capacity of patients to engage confidently in a dialogue with clinicians and decision makers, and (ii) increasing the readiness for patient engagement uptake within targeted organizations.

  June 28, 2017   doi: 10.1111/hex.12591   open full text
• A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia.
  Kethakie Lamahewa, Rammya Mathew, Steve Iliffe, Jane Wilcock, Jill Manthorpe, Elizabeth L Sampson, Nathan Davies.
  Health Expectations. June 22, 2017
  Background Dementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities. Objective To explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia. Design Qualitative methodology using focus groups and semi‐structured interviews and thematic analysis methods. Settings and participants Former (n=4) and current (n=6) family carers of people with experience of end of life care for a person with dementia were recruited from an English dementia voluntary group in 2015. A further 24 health and care professionals were purposively sampled to include a broad range of expertise and experience in dementia end of life care. Results Four key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life. Overarching difficulties such as poor communication, uncertainty and conflict about the needs of the person with dementia as well as the decision maker's own role can characterize decision making at the end of life. Conclusions This study suggests that decision making at the end of life for people with dementia has the potential to be improved. More planning earlier in the course of dementia with an on‐going approach to conversation may increase preparedness and family carers’ expectations of end of life.

  June 22, 2017   doi: 10.1111/hex.12593   open full text
• Improving the quality of prison research: A qualitative study of ex‐offender service user involvement in prison suicide prevention research.
  Yvonne F. Awenat, Currie Moore, Patricia A. Gooding, Fiona Ulph, Aisha Mirza, Daniel Pratt.
  Health Expectations. June 22, 2017
  Background Suicide is the leading cause of avoidable death in prisons worldwide and suicide prevention is an international priority. Consequently, there is an urgent need to develop evidence‐based treatments. We conducted a randomized controlled trial of a novel suicide prevention psychological therapy for male prisoners. To promote ecological validity by addressing the “real‐world” situation of suicidal prisoners, we involved a consultant group of ex‐offenders with past experience of being suicidal during imprisonment. Service user involvement in prison research is challenging and underdeveloped. Objective We aimed to investigate the ex‐offender service user consultants’ experiences of being involved in the research. Design Individual qualitative interviews were conducted and analysed using an Interpretative Phenomenology Analysis (IPA) framework. Setting/participants The study was conducted at a university in North England, UK, comprising four ex‐offenders with experience of being suicidal during past imprisonments. Results Two superordinate themes were identified: “Working Together” depicted participants’ perceptions of the pivotal role of good relationships with researchers, and “Journey of Change” outlined how participants’ involvement in the research impacted on their personal lives. Discussion Little is known about how to successfully involve ex‐offender service users in research. Our results indicate the conditions necessary for successfully engaging ex‐offender service users in research and have important implications for improving the quality of prison research. Conclusions Involving forensic service users in research is feasible and should be encouraged, as despite certain challenges, it is highly rewarding both for the research and the ex‐offender service users.

  June 22, 2017   doi: 10.1111/hex.12590   open full text
• The PU‐PROM: A patient‐reported outcome measure for peptic ulcer disease.
  Na Liu, Jing Lv, Jinchun Liu, Yanbo Zhang.
  Health Expectations. June 21, 2017
  Objective Patient‐reported outcome measure (PROM) conceived to enable description of treatment‐related effects, from the patient perspective, bring the potential to improve in clinical research, and to provide patients with accurate information. Therefore, the aim of this study was to develop a patient‐centred peptic ulcer patient‐reported outcome measure (PU‐PROM) and evaluate its reliability, validity, differential item functioning (DIF) and feasibility. Method To develop a conceptual framework and item pool for the PU‐PROM, we performed a literature review and consulted other measures created in China and other countries. Beyond that, we interviewed 10 patients with peptic ulcers, and consulted six key experts to ensure that all germane parameters were included. In the first item selection phase, classical test theory and item response theory were used to select and adjust items to shape the preliminary measure completed by 130 patients and 50 controls. In the next phase, the measure was evaluated used the same methods with 492 patients and 124 controls. Finally, we used the same population in the second item reselection to assess the reliability, validity, DIF and feasibility of the final measure. Results The final peptic ulcer PRO measure comprised four domains (physiology, psychology, society and treatment), with 11 subdomains, and 54 items. The Cronbach's α coefficient of each subdomain for the measure was >0.800. Confirmatory factory analysis indicated that the construct validity fulfilled expectations. Model fit indices, such as RMR, RMSEA, NFI, NNFI, CFI and IFI, showed acceptable fit. The measure showed a good response rate. Conclusions The peptic ulcer PRO measure had good reliability, validity, DIF and feasibility, and can be used as a clinical research evaluation instrument with patients with peptic ulcers to assess their condition focus on treatment. This measure may also be applied in other health areas, especially in clinical trials of new drugs, and may be helpful in clinical decision making.

  June 21, 2017   doi: 10.1111/hex.12575   open full text
• Understanding the influences and impact of patient‐clinician communication in cancer care.
  Jennifer Elston Lafata, Laura A. Shay, Jodi M. Winship.
  Health Expectations. June 21, 2017
  Background Patient‐clinician communication is thought to be central to care outcomes, but when and how communication affects patient outcomes is not well understood. Objective We propose a conceptual model and classification framework upon which the empirical evidence base for the impact of patient‐clinician communication can be summarized and further built. Design We use the proposed model and framework to summarize findings from two recent systematic reviews, one evaluating the use of shared decision making (SDM) on cancer care outcomes and the other evaluating the role of physician recommendation in cancer screening use. Key results Using this approach, we identified clusters of studies with positive findings, including those relying on the measurement of SDM from the patients’ perspective and affective‐cognitive outcomes, particularly in the context of surgical treatment decision making. We also identify important gaps in the literature, including the role of SDM in post‐surgical treatment and end‐of‐life care decisions, and those specifying particular physician communication strategies when recommending cancer screening. Conclusions Transparent linkages between key conceptual domains and the influence of methodological approaches on observed patient outcomes are needed to advance our understanding of how and when patient‐clinician communication influences patient outcomes. The proposed conceptual model and classification framework can be used to facilitate the translation of empirical evidence into practice and to identify critical gaps in knowledge regarding how and when patient‐clinician communication impacts care outcomes in the context of cancer and health care more broadly.

  June 21, 2017   doi: 10.1111/hex.12579   open full text
• Views of general practice staff about the use of a patient‐oriented treatment decision aid in shared decision making for patients with type 2 diabetes: A mixed‐methods study.
  Anita Wildeboer, Esther du Pon, Jan Schuling, Flora M. Haaijer‐Ruskamp, Petra Denig.
  Health Expectations. June 21, 2017
  Background Decision aids can be used to support shared decision making (SDM). A patient‐oriented treatment decision aid (DA) was developed for type 2 diabetes but its use by general practice staff appeared to be limited. Objectives To explore views of practice staff towards SDM and the DA. Design A mixed‐methods study within the Dutch PORTDA‐diab trial. Setting and participants Included were 17 practices with staff members who were responsible for routine diabetes care and had worked with the DA, and 209 of their patients. Methods Interviews were conducted focusing on applicability, usefulness and feasibility of the DA. Interviews were tape‐recorded, transcribed verbatim and subjected to content analysis for identifying and classifying views. Patient‐reported data about the use of the DA were collected. Associations between specific views and use of the DA were tested using Pearson point‐biserial correlation. Results The majority of practice staff expressed positive views towards SDM, which was associated with making more use of the DA. Most of the staff expressed that the DA stimulated a two‐way conversation. By using the DA, several became aware of their paternalistic approach. Some staff experienced a conflict with the content of the DA, which was associated with making less use of the DA. Conclusions The DA was considered useful by practice staff to support SDM. A positive view towards SDM was a facilitator, whereas experiencing a conflict with the content of the DA was a barrier for making use of the DA.

  June 21, 2017   doi: 10.1111/hex.12586   open full text
• Getting on the same page: Communication, patient involvement and shared understanding of “decisions” in oncology.
  Aaron L. Leppin, Marleen Kunneman, Julie Hathaway, Cara Fernandez, Victor M. Montori, Jon C. Tilburt.
  Health Expectations. June 21, 2017
  Background Patients and clinicians do not often agree on whether a decision has been made about cancer care. This could be explained by factors related to communication quality and/or the type of decision being made. Methods We used a self‐developed coding scheme to code a random sample of 128 encounters in which patients and clinicians either agreed (n=64) or disagreed (n=64) that a cancer care decision was made and tested for associations between concordance and key communication behaviours. We also identified and characterized cancer care decisions by topic and level of patient involvement and looked for trends. Results We identified 378 cancer care decisions across 128 encounters. Explicit decisions were most commonly made about topics wherein decision control could be easily delegated to a clear and present expert (eg either the patient or the clinician). Related to this, level of patient involvement varied significantly by decision topic. Explicit decisions were rarely made in an observable way about social, non‐clinical or self‐management related topics, although patients and clinicians both reported having made a cancer care decision in encounters where no decisions were observed. We found no association between communication behaviours and concordance in our sample. Conclusions What counts as a “decision” in cancer care may be constructed within disparate social roles that leave many agendas unaddressed and decisions unmade. Changing the content of conversations to encourage explicit decisions about self‐management and life context‐related topics may have greater value in enabling shared understanding than promoting communication behaviours among already high‐performing communicators.

  June 21, 2017   doi: 10.1111/hex.12592   open full text
• How does the side‐effect information in patient information leaflets influence peoples’ side‐effect expectations? A cross‐sectional national survey of 18‐ to 65‐year‐olds in England.
  Rebecca K. Webster, John Weinman, G. James Rubin.
  Health Expectations. June 15, 2017
  Objectives To establish how the terms recommended by the European Commission to describe side‐effect risk in patient information leaflets (PILs) influences expectations of side‐effects and to identify factors associated with these side‐effect expectations. Design A cross‐sectional online survey was carried out by a market research company. Setting Data were collected in England between 18th March and 1st April 2016. Participants A total of 1003 adults aged between 18 and 65. Main outcome measures: Self‐reported expectation that the described side‐effects would affect participants if they took the medicine, measured on a likelihood scale from 1 (very unlikely) to 5 (very likely). Results Participants formed high expectations of side‐effects for “very common” and “common” side‐effects, with 51.9% and 45.0% of participants rating these as “very likely” or “likely” to happen to them, respectively. This fell to 8.1% for “uncommon,” 5.8% for “rare” and 4.1% for “very rare.” For each descriptor, higher expectations of side‐effects were more associated with women or being from an ethnic minority, or having less education, a household illness, high perceived sensitivity to medicines or negative beliefs about medicines. Discussion The current use of verbal descriptors to communicate side‐effect risk in PILs leads to high side‐effect expectations. These expectations could contribute to nocebo‐induced medication side‐effects experienced by patients. Additional work is required to identify ways to improve the way risk information is conveyed in PILs.

  June 15, 2017   doi: 10.1111/hex.12584   open full text
• Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi process.
  Anna Kearney, Paula Williamson, Bridget Young, Heather Bagley, Carrol Gamble, Simon Denegri, Delia Muir, Natalie A. Simon, Stephen Thomas, Jim T. Elliot, Helen Bulbeck, Joanna C. Crocker, Claire Planner, Claire Vale, Mike Clarke, Tim Sprosen, Kerry Woolfall.
  Health Expectations. June 15, 2017
  Background Despite increasing international interest, there is a lack of evidence about the most efficient, effective and acceptable ways to implement patient and public involvement (PPI) in clinical trials. Objective To identify the priorities of UK PPI stakeholders for methodological research to help resolve uncertainties about PPI in clinical trials. Design A modified Delphi process including a two round online survey and a stakeholder consensus meeting. Participants In total, 237 people registered of whom 219 (92%) completed the first round. One hundred and eighty‐seven of 219 (85%) completed the second; 25 stakeholders attended the consensus meeting. Results Round 1 of the survey comprised 36 topics; 42 topics were considered in round 2 and at the consensus meeting. Approximately 96% of meeting participants rated the top three topics as equally important. These were as follows: developing strong and productive working relationships between researchers and PPI contributors; exploring PPI practices in selecting trial outcomes of importance to patients; and a systematic review of PPI activity to improve the accessibility and usefulness of trial information (eg participant information sheets) for participants. Conclusions The prioritized methodological research topics indicate important areas of uncertainty about PPI in trials. Addressing these uncertainties will be critical to enhancing PPI. Our findings should be used in the planning and funding of PPI in clinical trials to help focus research efforts and minimize waste.

  June 15, 2017   doi: 10.1111/hex.12583   open full text
• Feedback preferences of patients, professionals and health insurers in integrated head and neck cancer care.
  Lydia F. J. Overveld, Robert P. Takes, Thomas W. Vijn, Jozé C. C. Braspenning, Jan P. Boer, John J. A. Brouns, Rolf J. Bun, Boukje A. C. Dijk, Judith A. W. F. Dortmans, Emilie A. C. Dronkers, Robert J. J. Es, Frank J. P. Hoebers, Arvid Kropveld, Johannes A. Langendijk, Ton P. M. Langeveld, Sjoukje F. Oosting, Hendrik P. Verschuur, Jan G. A. M. Visscher, Stijn Weert, Matthias A. W. Merkx, Ludi E. Smeele, Rosella P. M. G. Hermens.
  Health Expectations. June 15, 2017
  Background Audit and feedback on professional practice and health care outcomes are the most often used interventions to change behaviour of professionals and improve quality of health care. However, limited information is available regarding preferred feedback for patients, professionals and health insurers. Objective Investigate the (differences in) preferences of receiving feedback between stakeholders, using the Dutch Head and Neck Audit as an example. Methods A total of 37 patients, medical specialists, allied health professionals and health insurers were interviewed using semi‐structured interviews. Questions focussed on: “Why,” “On what aspects” and “How” do you prefer to receive feedback on professional practice and health care outcomes? Results All stakeholders mentioned that feedback can improve health care by creating awareness, enabling self‐reflection and reflection on peers or colleagues, and by benchmarking to others. Patients prefer feedback on the actual professional practice that matches the health care received, whereas medical specialists and health insurers are interested mainly in health care outcomes. All stakeholders largely prefer a bar graph. Patients prefer a pie chart for patient‐reported outcomes and experiences, while Kaplan‐Meier survival curves are preferred by medical specialists. Feedback should be simple with firstly an overview, and 1‐4 times a year sent by e‐mail. Finally, patients and health professionals are cautious with regard to transparency of audit data. Conclusions This exploratory study shows how feedback preferences differ between stakeholders. Therefore, tailored reports are recommended. Using this information, effects of audit and feedback can be improved by adapting the feedback format and contents to the preferences of stakeholders.

  June 15, 2017   doi: 10.1111/hex.12567   open full text
• A qualitative formative evaluation of a patient‐centred patient safety intervention delivered in collaboration with hospital volunteers.
  Gemma Louch, Jane O'Hara, Mohammed A. Mohammed.
  Health Expectations. June 15, 2017
  Background Evidence suggests that patients can meaningfully feed back to healthcare providers about the safety of their care. The PRASE (Patient Reporting and Action for a Safe Environment) intervention provides a way to systematically collect feedback from patients to support service improvement. The intervention is being implemented in acute care settings with patient feedback collected by hospital volunteers for the first time. Objective To undertake a formative evaluation which explores the feasibility and acceptability of the PRASE intervention delivered in collaboration with hospital volunteers from the perspectives of key stakeholders. Design A qualitative evaluation design was adopted across two acute NHS trusts in the UK between July 2014 and November 2015. We conducted five focus groups with hospital volunteers (n=15), voluntary services and patient experience staff (n=3) and semi‐structured interviews with ward staff (n=5). Data were interpreted using framework analysis. Results All stakeholders were positive about the PRASE intervention as a way to support service improvement, and the benefits of involving volunteers. Volunteers felt adequate training and support would be essential for retention. Staff concentrated on the infrastructure needed for implementation and raised concerns around sustainability. Findings were fed back to the implementation team to support revisions to the intervention moving into the subsequent summative evaluation phase. Conclusion Although there are concerns regarding sustainability in practice, the PRASE intervention delivered in collaboration with hospital volunteers is a promising approach to collect patient feedback for service improvement.

  June 15, 2017   doi: 10.1111/hex.12560   open full text
• Reconciling patient and provider priorities for improving the care of critically ill patients: A consensus method and qualitative analysis of decision making.
  Emily McKenzie, Melissa L. Potestio, Jamie M. Boyd, Daniel J. Niven, Rebecca Brundin‐Mather, Sean M. Bagshaw, Henry T. Stelfox,.
  Health Expectations. May 31, 2017
  Background Providers have traditionally established priorities for quality improvement; however, patients and their family members have recently become involved in priority setting. Little is known about how to reconcile priorities of different stakeholder groups into a single prioritized list that is actionable for organizations. Objective To describe the decision‐making process for establishing consensus used by a diverse panel of stakeholders to reconcile two sets of quality improvement priorities (provider/decision maker priorities n=9; patient/family priorities n=19) into a single prioritized list. Design We employed a modified Delphi process with a diverse group of panellists to reconcile priorities for improving care of critically ill patients in the intensive care unit (ICU). Proceedings were audio‐recorded, transcribed and analysed using qualitative content analysis to explore the decision‐making process for establishing consensus. Setting and participants Nine panellists including three providers, three decision makers and three family members of previously critically ill patients. Results Panellists rated and revised 28 priorities over three rounds of review and reached consensus on the “Top 5” priorities for quality improvement: transition of patient care from ICU to hospital ward; family presence and effective communication; delirium screening and management; early mobilization; and transition of patient care between ICU providers. Four themes were identified as important for establishing consensus: storytelling (sharing personal experiences), amalgamating priorities (negotiating priority scope), considering evaluation criteria and having a priority champion. Conclusions Our study demonstrates the feasibility of incorporating families of patients into a multistakeholder prioritization exercise. The approach described can be used to guide consensus building and reconcile priorities of diverse stakeholder groups.

  May 31, 2017   doi: 10.1111/hex.12576   open full text
• Understanding food vulnerability and health literacy in older bereaved men: A qualitative study.
  Jill Thompson, Angela Tod, Paul Bissell, Michael Bond.
  Health Expectations. May 24, 2017
  Background Older people are sometimes challenged in maintaining a healthy diet but, because of age and disadvantage, are also more vulnerable to the adverse health consequences of poor nutrition. It has been claimed that older adults have low levels of health literacy regarding food and struggle to discern which foods are healthy from the vast range available in developed counties (Br Herne 1995;97:12). However, nutrition and eating behaviour are modifiable risk factors for health in old age (Appl Physiol Nutr Keller 2007;32:991) and health benefits can accrue from promoting healthy eating later in life. In order to achieve these health benefits, it is necessary to understand more about the capabilities and vulnerabilities of older people in terms of acquiring and maintaining a healthy diet. Objective To understand the potential for issues around food vulnerability to arise in that group and to characterize that vulnerability, if present. Design Narrative interviews were conducted to collect the data. An interpretative thematic approach to analysis was utilized. Participants Twenty older, bereaved men from two communities in the North of England. Findings Five overarching themes were identified: financial security, social networks, cooking skills, food and routine and single servings. Discussion Our findings suggest that some older men experience cumulative benefit from resources at their disposal, which contributes towards their capabilities to avoid food vulnerability.

  May 24, 2017   doi: 10.1111/hex.12574   open full text
• Effectiveness of shared goal setting and decision making to achieve treatment targets in type 2 diabetes patients: A cluster‐randomized trial (OPTIMAL).
  Henk Den Ouden, Rimke C. Vos, Guy E. H. M. Rutten.
  Health Expectations. May 24, 2017
  Objective About 20% of patients with type 2 diabetes achieve all their treatment targets. Shared decision making (SDM) using a support aid based on the 5‐years results of the ADDITION study on multifactorial treatment, could increase this proportion. Research design and methods Cluster‐randomized trial in 35 former ADDITION primary care practices. Practices were randomized to SDM or care as usual (1:1). Both ADDITION and non‐ADDITION type 2 diabetes patients, 60‐80 years, known with diabetes for 8‐12 years, were included. In the intervention group, patients were presented evidence about the relationship between treatment intensity and cardiovascular events. They chose intensive or less intensive treatment and prioritized their targets. After 1 year priorities could be rearranged. Follow‐up: 24 months. Intention‐to‐treat analysis. Main outcome measure: proportion of patients that achieved all three treatment targets. Results At baseline 26.4% in the SDM group (n=72) had already achieved all three treatment goals (CG: 23.5%, n=81). In the SDM group 44 patients chose intensive treatment, 25 continued their former less intensive treatment and three people switched from the more to the less intensive protocol. After 24 months 31.8% of the patients in the SDM group achieved all three treatment targets (CG: 25.3%), RR 1.26 (95% CI 0.81‐1.95). Mean systolic blood pressure decreased in the SDM group (−5.4 mm Hg, P<.01), mean HbA1c and total cholesterol did not change. Conclusions Despite an already high baseline level of diabetes care, we found strong indications that SDM on both intensity of treatment and prioritizing treatment goals further improved outcomes.

  May 24, 2017   doi: 10.1111/hex.12563   open full text
• “It's a fight to get anything you need” — Accessing care in the community from the perspectives of people with multimorbidity.
  Julia W. Ho, Kerry Kuluski, Jennifer Im.
  Health Expectations. May 24, 2017
  Background There is a growing interest in redesigning health‐care systems to better manage the increasing numbers of people with multimorbidity. Knowing how patients experience health‐care delivery and what they need from the health‐care system are critical pieces of evidence that can be used to guide health system reforms. Objective The purpose of this study was to understand the challenges patients with multimorbidity face in accessing care in the community, and the implications for patients and their families. Methods A secondary analysis of qualitative data was conducted on semi‐structured interviews with 116 patients who were receiving care in an urban rehabilitation facility in 2011. Exploratory interpretive analysis was used to identify themes about access to care. Results Challenges occurred at two levels: at the health system level and at the individual (patient) level. Issues at the health system level fell into two broad categories: availability of services (failing to qualify, coping with wait times, struggling with scarcity and negotiating the location of care) and service delivery (unreliable care, unmet needs, incongruent care and inflexible care). Challenges at the patient level fell into the themes of logistics of accessing care and financial strain. Patients interacted and responded to these challenges by: managing the system, making personal sacrifices, substituting with informal care, and resigning to system constraints. Conclusion Identifying the barriers patients encounter and the lengths they go to in order to access care highlights areas where policy initiatives can focus to develop appropriate and supportive services that are more person and family‐centred.

  May 24, 2017   doi: 10.1111/hex.12571   open full text
• Communication practices that encourage and constrain shared decision making in health‐care encounters: Systematic review of conversation analytic research.
  Victoria Land, Ruth Parry, Jane Seymour.
  Health Expectations. May 18, 2017
  Background Shared decision making (SDM) is generally treated as good practice in health‐care interactions. Conversation analytic research has yielded detailed findings about decision making in health‐care encounters. Objective To map decision making communication practices relevant to health‐care outcomes in face‐to‐face interactions yielded by prior conversation analyses, and to examine their function in relation to SDM. Search strategy We searched nine electronic databases (last search November 2016) and our own and other academics' collections. Inclusion criteria Published conversation analyses (no restriction on publication dates) using recordings of health‐care encounters in English where the patient (and/or companion) was present and where the data and analysis focused on health/illness‐related decision making. Data extraction and synthesis We extracted study characteristics, aims, findings relating to communication practices, how these functioned in relation to SDM, and internal/external validity issues. We synthesised findings aggregatively. Results Twenty‐eight publications met the inclusion criteria. We sorted findings into 13 types of communication practices and organized these in relation to four elements of decision‐making sequences: (i) broaching decision making; (ii) putting forward a course of action; (iii) committing or not (to the action put forward); and (iv) HCPs' responses to patients' resistance or withholding of commitment. Patients have limited opportunities to influence decision making. HCPs' practices may constrain or encourage this participation. Conclusions Patients, companions and HCPs together treat and undertake decision making as shared, though to varying degrees. Even for non‐negotiable treatment trajectories, the spirit of SDM can be invoked through practices that encourage participation (eg by bringing the patient towards shared understanding of the decision's rationale).

  May 18, 2017   doi: 10.1111/hex.12557   open full text
• Identifying preferred format and source of exercise information in persons with multiple sclerosis that can be delivered by health‐care providers.
  Yvonne C. Learmonth, Brynn C. Adamson, Julia M. Balto, Chung‐yi Chiu, Isabel M. Molina‐Guzman, Marcia Finlayson, Barry J. Riskin, Robert W. Motl.
  Health Expectations. May 18, 2017
  Background There is increasing recognition of the benefits of exercise in individuals with multiple sclerosis (MS), yet the MS population does not engage in sufficient amounts of exercise to accrue health benefits. There has been little qualitative inquiry to establish the preferred format and source for receiving exercise information from health‐care providers among persons with MS. Objective We sought to identify the desired and preferred format and source of exercise information for persons with MS that can be delivered through health‐care providers. Setting and participants Participants were adults with MS who had mild or moderate disability and participated in a range of exercise levels. All participants lived in the Midwest of the United States. Methods Fifty semi‐structured interviews were conducted and analysed using thematic analysis. Results Two themes emerged, (i) approach for receiving exercise promotion and (ii) ideal person for promoting exercise. Persons with MS want to receive exercise information through in‐person consultations with health‐care providers, print media and electronic media. Persons with MS want to receive exercise promotion from health‐care providers with expertise in MS (ie neurologists) and with expertise in exercise (eg physical therapists). Conclusions These data support the importance of understanding how to provide exercise information to persons with MS and identifying that health‐care providers including neurologists and physical therapists should be involved in exercise promotion.

  May 18, 2017   doi: 10.1111/hex.12541   open full text
• The evolution of uncertainty in second opinions about prostate cancer treatment.
  Marij A. Hillen, Caitlin M. Gutheil, Ellen M. A. Smets, Moritz Hansen, Terrence M. Kungel, Tania D. Strout, Paul K. J. Han.
  Health Expectations. May 18, 2017
  Background People who have cancer increasingly seek second opinions. Yet, we know little about what motivates patients to seek them and how beneficial they are. Uncertainty—experienced by patients or communicated by physician and patient—may be crucial throughout the second opinion process. Objective This study sought to investigate (1) how uncertainty influences men with prostate cancer to seek second opinions and (2) how second opinions may affect these patients’ sense of uncertainty and subsequent experiences with their care. Methods A qualitative study using semi‐structured interviews was performed. Men with localized or advanced prostate cancer (n=23) were interviewed by telephone about their motivations and experiences with seeking second opinions and the uncertainties they experienced. Analysis was performed using the constant comparative method. Results Patients sought second opinions because they were uncertain about receiving too little or biased information, experienced insufficient support in coming to a treatment decision, or because physicians expressed different levels of uncertainty than they did (“unshared uncertainty”). Uncertainty was reduced by the second opinion process for most patients, whereas for others, it increased or was sustained. This evolution depended on the way uncertainty was addressed during the second opinion consultation. Conclusions Second opinions may be a useful tool for some but not all patients. They should be used judiciously and not be viewed as a solution for current limitations to health‐care organization. An important yet challenging task for physicians is to focus less on information per se and more on how to assist patients manage irreducible uncertainty.

  May 18, 2017   doi: 10.1111/hex.12566   open full text
• Experiences and expectations in the first trimester of pregnancy: a qualitative study.
  Stina Lou, Michal Frumer, Mette M. Schlütter, Olav B. Petersen, Ida Vogel, Camilla P. Nielsen.
  Health Expectations. May 18, 2017
  Background A dominant context for pregnant women in the Western world is medical technologies such as ultrasound and screening. It has been argued that such technologies may result in tentative pregnancies, which may be particularly prominent in the first trimester. However, little is known about how women experience early pregnancy. Objective To explore the everyday experiences and expectations of first trimester pregnant women in a medicalized context of comprehensive and routine prenatal screening. Design Qualitative, semi‐structured interviews analysed using thematic analysis. Setting Between May 2015 and January 2016, participants were recruited from two general practices and one obstetric ultrasound unit in Aarhus, Denmark. Participants Twenty, first trimester pregnant women (15 primiparae, five multiparae) aged 21‐39 years. Results Early pregnancy is often kept secret in the first trimester due to a higher risk of miscarriage. However, the pregnancy is very real in the lives of the pregnant women who make it meaningful through practices of information seeking, listening to the body and anticipating the different milestones in pregnancy. First trimester screening represents one such milestone that is expected to mark a new and more certain phase in the pregnancy. A majority expects to terminate following a prenatal diagnosis, but this does not seem to influence their engagement with the pregnancy. Conclusions The pregnant women use medical technologies to mark a milestone in pregnancy but do not expect all concerns to disappear upon a normal screening result. The majority of women acknowledge that pregnancy involves simultaneous feelings of happiness and worry.

  May 18, 2017   doi: 10.1111/hex.12572   open full text
• Training doctors briefly and in situ to involve their patients in making medical decisions—Preliminary testing of a newly developed module.
  Jürgen Kasper, Katrin Liethmann, Christoph Heesen, Daniel R Reissmann, Friedemann Geiger.
  Health Expectations. May 18, 2017
  Objective To carry out preliminary evaluation of a training module for doctors to enhance their ability to involve their patients in medical decision making. The training refers to the shared decision‐making (SDM) communication concept. Methods The training module includes a comprehensive manual, a corresponding video tutorial with communication examples and a 15‐minute face‐to‐face feedback session based on an SDM analysis of a consultation recording provided by the trainee. Ten trainees (four neurologists, three dentists, and three general practitioners) participating in the pretest each recorded four clinical consultations (total sample: N=40) and received three training components. After the training, doctors provided feedback on the module's feasibility in a questionnaire. Communication performance of doctors, patients and doctor–patient dyads was assessed by trained observers and self‐assessed by doctors and patients using the MAPPIN’SDM approach. Training effects were determined using Wilcoxon signed‐rank tests comparing baseline values with post‐intervention performance as assessed in the fourth consultations. Results The face‐to‐face training sessions were short and feasible with regard to clinical reality. Participants considered the training supportive for acquiring SDM skills and recommended more emphasis on the face‐to‐face feedback. Communication improved according to observers rating doctors (P=.05) and doctor–patient dyads (P=.07) and to doctors’ own judgements (P=.02). No improvement was observed in patients’ SDM behaviour (P=.11); accordingly, patients’ judgements did not indicate improvement (P=.14). Conclusions The training is designed to meet clinicians’ needs. Improvement of risk communication after training encourages optimization according to doctors’ feedback. Following this study, the efficacy of the training is now being examined in a randomized controlled trial.

  May 18, 2017   doi: 10.1111/hex.12565   open full text
• Preferences for prenatal diagnosis of sickle‐cell disorder: A discrete choice experiment comparing potential service users and health‐care providers.
  Melissa Hill, Eugene Oteng‐Ntim, Frida Forya, Mary Petrou, Stephen Morris, Lyn S. Chitty.
  Health Expectations. May 15, 2017
  Background Non‐invasive prenatal diagnosis (NIPD) for sickle‐cell disorder (SCD) is moving closer to implementation and studies considering stakeholder preferences are required to underpin strategies for offering NIPD in clinical practice. Objective Determine service user and provider preferences for key attributes of prenatal diagnostic tests for SCD and examine views on NIPD. Method A questionnaire that includes a discrete choice experiment was used to determine the preferences of service users and providers for prenatal tests that varied across three attributes: accuracy, time of test and risk of miscarriage. Results Adults who were carriers of SCD or affected with the condition (N=67) were recruited from haemoglobinopathy clinics at two maternity units. Health professionals, predominately midwives, who offer antenatal care (N=62) were recruited from one maternity unit. No miscarriage risk was a key driver of decision making for both service users and providers. Service providers placed greater emphasis on accuracy than service users. Current uptake of invasive tests was 63%, whilst predicted uptake of NIPD was 93.8%. Many service users (55.4%) and providers (52.5%) think pressure to have prenatal testing will increase when NIPD for SCD becomes available. Conclusions There are clear differences between service users and health professionals’ preferences for prenatal tests for sickle‐cell disorder. The safety of NIPD is welcomed by parents and uptake is likely to be high. To promote informed choice, pretest counselling should be balanced and not exclusively focused on test safety. Counselling strategies that are sensitive to feelings of pressure to test will be essential.

  May 15, 2017   doi: 10.1111/hex.12568   open full text
• Development and validation of a Chinese medication literacy measure.
  Ying‐Chih Yeh, Hsiang‐Wen Lin, Elizabeth H. Chang, Yen‐Ming Huang, Yu‐Chieh Chen, Chun‐Yu Wang, Jen‐Wei Liu, Yu Ko.
  Health Expectations. May 05, 2017
  Background Despite the impact of medication literacy (ML) on patients’ safe use of medications, existing instruments are mostly for general health literacy measurement or designed for specific disease populations, with few specifically designed for ML. Objective To develop and validate the first Chinese medication literacy measure (ChMLM). Methods The ChMLM was developed by a multidisciplinary and bilingual expert panel and subsequently pilot‐tested. The final version had 17 questions in four sections: vocabulary, non‐prescription drug, prescription drug and drug advertisement. Face‐to‐face interviews were administered in a convenience sample of adults with diverse sociodemographic characteristics. Internal consistency was assessed by Cronbach's alpha. Content validity was confirmed by the expert panel, and hypothesis testing was performed to assess construct validity. Results A total of 634 adults were interviewed. The mean (SD) total ChMLM score was 13.0 (2.8). The internal validity was acceptable (Cronbach's alpha=0.72). Nine of the ten a priori hypotheses were fulfilled. Younger age, higher income and higher education levels were significantly associated with a higher ChMLM score. Furthermore, higher scores on the ChMLM were associated with higher confidence or less difficulty in writing, reading, speaking and listening abilities in a health‐care encounter. No association was found between ChMLM total scores and frequency of doctor's visits. Conclusion The ChMLM is a valid and reliable ML measure. It may help pharmacists and other health‐care providers to target patients and problem areas that need interventions with the ultimate goal of preventing medication errors and harm.

  May 05, 2017   doi: 10.1111/hex.12569   open full text
• A qualitative study exploring high school students’ understanding of, and attitudes towards, health information and claims.
  Leila Cusack, Laura N Desha, Chris B Del Mar, Tammy C Hoffmann.
  Health Expectations. May 05, 2017
  Background Exposure to health claims, particularly in the media and social media, is pervasive, and the information conveyed is often inaccurate, incomplete or misleading. Some young people of high school ages are already making decisions about using readily available health interventions (such as sports drinks and beauty products).Although previous research has assessed adults’ understanding of health claims, no research has examined this issue in young adults who are attending high school. Objective To explore high school students’ understanding of, and attitudes towards, concepts relevant to assessing health information and claims. Design A qualitative study involving semi‐structured interviews with 27 Australian high school students. Responses were recorded, transcribed and a thematic analysis performed. Three themes emerged as follows: (i) Variability in sources of health information and claims, and general understanding of their creation and accuracy of content, (ii) The use of substitute indicators to assess health information and claims and make judgements about their trustworthiness, (iii) Uncertainty about, and literal interpretation of, the language of health claims. Despite general scepticism of health claims and admitted uncertainty of research terminology, many students were generally convinced. Students had poor understanding about how health claims are generated and tended to rely on substitute indicators, such as endorsements, when evaluating the believability of claims. Conclusion School students’ lack of awareness of basic health research processes and methods of assessing the accuracy of health information and claims makes them vulnerable to distorted and misleading health information. This restricts their ability to make informed health decisions – a skill that increases in importance as they become adults.

  May 05, 2017   doi: 10.1111/hex.12562   open full text
• Shared care involving cancer specialists and primary care providers – What do cancer survivors want?
  Sharon Lawn, Julia Fallon‐Ferguson, Bogda Koczwara.
  Health Expectations. May 03, 2017
  Background Cancer survivors are living longer, prompting greater focus on managing cancer as a chronic condition. Shared care between primary care providers (PCPs) and cancer specialists, involving explicit partnership in how care is communicated, could ensure effective transitions between services. However, little is known about cancer patients' and survivors' preferences regarding shared care. Objective To explore Australian cancer survivors' views on shared care: what cancer survivors need from shared care; enablers and barriers to advancing shared care; and what successful shared care looks like. Setting and Participants Community forum held in Adelaide, Australia, in 2015 with 21 participants: 11 cancer survivors, 2 family caregivers, and 8 clinicians and researchers (members of PC4‐Primary Care Collaborative Cancer Clinical Trials Group). Intervention Qualitative data from group discussion of the objectives. Results Participants stressed that successful shared care required patients being at the centre, ensuring accurate communication, ownership, and access to their medical records. PCPs were perceived to lack skills and confidence to lead complex cancer care. Patients expressed burden in being responsible for navigating information sharing and communication processes between health professionals and services. Effective shared care should include: shared electronic health records, key individuals as care coordinators; case conferences; shared decision making; preparing patients for self‐management; building general practitioners' skills; and measuring outcomes. Discussion and Conclusions There was clear support for shared care but a lack of good examples to help guide it for this population. Recognizing cancer as a chronic condition requires a shift in how care is provided to these patients.

  May 03, 2017   doi: 10.1111/hex.12551   open full text
• Patient and physician views of shared decision making in cancer.
  Nina P. Tamirisa, James S. Goodwin, Arti Kandalam, Suzanne K. Linder, Susan Weller, Stella Turrubiate, Colleen Silva, Taylor S. Riall.
  Health Expectations. May 02, 2017
  Context Engaging patients in shared decision making involves patient knowledge of treatment options and physician elicitation of patient preferences. Objective Our aim was to explore patient and physician perceptions of shared decision making in clinical encounters for cancer care. Design Patients and physicians were asked open‐ended questions regarding their perceptions of shared decision making throughout their cancer care. Transcripts of interviews were coded and analysed for shared decision‐making themes. Setting and participants At an academic medical centre, 20 cancer patients with a range of cancer diagnoses, stages of cancer and time from diagnosis, and eight physicians involved in cancer care were individually interviewed. Discussion and conclusions Most physicians reported providing patients with written information. However, most patients reported that written information was too detailed and felt that the physicians did not assess the level of information they wished to receive. Most patients wanted to play an active role in the treatment decision, but also wanted the physician's recommendation, such as what their physician would choose for him/herself or a family member in a similar situation. While physicians stated that they incorporated patient autonomy in decision making, most provided data without making treatment recommendations in the format preferred by most patients. We identified several communication gaps in cancer care. While patients want to be involved in the decision‐making process, they also want physicians to provide evidence‐based recommendations in the context of their individual preferences. However, physicians often are reluctant to provide a recommendation that will bias the patient.

  May 02, 2017   doi: 10.1111/hex.12564   open full text
• Developing social marketed individual preconception care consultations: Which consumer preferences should it meet?
  Sabine F. Voorst, Chantal A. Kate, Lieke C. Jong‐Potjer, Eric A. P. Steegers, Semiha Denktaş.
  Health Expectations. April 25, 2017
  Aims Preconception care (PCC) is care that aims to improve the health of offspring by addressing risk factors in the pre‐pregnancy period. Consultations are recognized as a method to promote perinatal health. However, prospective parents underutilize PCC services. Uptake can improve if delivery approaches satisfy consumer preferences. Aim of this study was to identify preferences of women (consumers) as a first step to social marketed individual PCC consultations. Methods In depth, semi‐structured interviews were performed to identify women's views regarding the four components of the social marketing model: product (individual PCC consultation), place (setting), promotion (how women are made aware of the product) and price (costs). Participants were recruited from general practices and a midwife's practice. Content analysis was performed by systematic coding with NVIVO software. Results The 39 participants reflected a multiethnic intermediately educated population. Product: Many participants had little knowledge of the need and the benefits of the product. Regarding the content of PCC, they wish to address fertility concerns and social aspects of parenthood. PCC was seen as an informing and coaching service with a predominant role for health‐care professionals. Place: the general practitioner and midwife setting was the most mentioned setting. Promotion: A professional led promotion approach was preferred. Price: Introduction of a fee for PCC consultations will make people reconsider their need for a consultation and could exclude vulnerable patients from utilization. Conclusion This study provides consumer orientated data to design a social marketed delivery approach for individual PCC consultations.

  April 25, 2017   doi: 10.1111/hex.12555   open full text
• Patients’ experiences of consultations with physician associates in primary care in England: A qualitative study.
  Mary Halter, Vari M. Drennan, Louise M. Joly, Jonathan Gabe, Heather Gage, Simon Lusignan.
  Health Expectations. April 21, 2017
  Background Physician associates are new to English general practice and set to expand in numbers. Objective To investigate the patients’ perspective on consulting with physician associates in general practice. Design A qualitative study, using semi‐structured interviews, with thematic analysis. Setting and participants Thirty volunteer patients of 430 who had consulted physician associates for a same‐day appointment and had returned a satisfaction survey, in six general practices employing physician associates in England. Findings Some participants only consulted once with a physician associate and others more frequently. The conditions consulted for ranged from minor illnesses to those requiring immediate hospital admission. Understanding the role of the physician associate varied from ‘certain and correct’ to ‘uncertain’, to ‘certain and incorrect’, where the patient believed the physician associate to be a doctor. Most, but not all, reported positive experiences and outcomes of their consultation, with some choosing to consult the physician. Those with negative experiences described problems when the limits of the role were reached, requiring additional GP consultations or prescription delay. Trust and confidence in the physician associate was derived from trust in the NHS, the general practice and the individual physician associate. Willingness to consult a physician associate was contingent on the patient's assessment of the severity or complexity of the problem and the desire for provider continuity. Conclusion Patients saw physician associates as an appropriate general practitioner substitute. Patients’ experience could inform delivery redesign.

  April 21, 2017   doi: 10.1111/hex.12542   open full text
• The relevance of context in understanding health literacy skills: Findings from a qualitative study.
  Verna B. McKenna, Jane Sixsmith, Margaret M. Barry.
  Health Expectations. April 12, 2017
  Background Conceptualizing health literacy as a relational concept, which involves how individuals interact with complex health and social systems, requires a greater understanding of the context of people's health experiences. Objectives To describe individuals’ experiences of accessing, understanding, appraising and applying health information; explore the barriers and facilitators to using these skills; and to describe the experience of information exchange in health consultations. Design A longitudinal qualitative methodology with thematic analysis of interviews was used. Health literacy levels were assessed using the HLS‐EU‐47–Item Questionnaire. Findings are presented from the first round of data collection. Setting and participants Twenty‐six participants purposefully selected from a CVD risk reduction programme at three separate time points. Results Four key themes identified: using health literacy capacities for managing health; psychological and structural factors that impact on these capacities; and the relationship quality with the health‐care provider (HCP). Although limited health literacy was prevalent across the sample (65%), all individuals were very proactive in attempting to utilize health literacy skills. Findings emphasize the importance of contextual factors such as the quality of communication with the health‐care provider, perceptions of control, attitudes to family medical history, navigating structural barriers and being supported in managing treatment and medication side‐effects. Discussion and Conclusion Findings are relevant for health‐care providers in order to enhance the patient‐provider relationship and to ensure optimum health outcomes for all individuals regardless of health literacy levels.

  April 12, 2017   doi: 10.1111/hex.12547   open full text
• “Bringing the outside world in”: Enriching social connection through health student placements in a teaching aged care facility.
  Michael J. Annear, Kate‐Ellen J. Elliott, Laura T. Tierney, Emma J. Lea, Andrew Robinson.
  Health Expectations. April 11, 2017
  Background Older adults living in residential aged care facilities (RACFs) often experience limited opportunities for social connection despite close proximity to peers, which has implications for mental health and quality of life (QoL). The introduction of large‐scale undergraduate health student placements in RACFs may enhance opportunities for meaningful engagement through social connection, although this remains unexplored. Objective This research explores whether interpersonal encounters between health students and RACF residents influence residents’ opportunities for social connection and QoL. Methods A mixed methods design was employed which included questionnaire data from residents, and qualitative interview data from residents, family members and RACF staff. Data were collected during and after student placements to allow for an in‐depth exploration of residents, family members and staff perspectives. Results Forty‐three participants (28 residents, 10 staff and five family members) were recruited during 2014. Overall, many residents had clinical levels of depression, mild cognitive impairment and multiple morbidities, however reported moderate‐to‐good QoL. Thematic analysis was undertaken on interview transcripts, and three themes emerged: (i) social isolation and loneliness fostered by residents’ age‐related conditions, (ii) students expand socially supportive connections beyond the RACF and (iii) meaning making by sharing health experiences, which was found to help renegotiate older adults’ pervasive narrative of vulnerability. Conclusion Supported and structured health student placements in RACFs enable older adults to participate in meaningful encounters with younger people. These encounters focus on sharing health experiences and address long‐standing issues of isolation and loneliness by providing opportunities for social connection.

  April 11, 2017   doi: 10.1111/hex.12561   open full text
• The role of life context and self‐defined well‐being in the outcomes that matter to people with a diagnosis of schizophrenia.
  Helen Lloyd, Joanne Lloyd, Ray Fitzpatrick, Michele Peters.
  Health Expectations. April 03, 2017
  Objective Conduct a deep exploration of the outcomes that matter to people with a diagnosis of schizophrenia and understand from their perspective how these outcomes can be achieved. Sample and Methods In‐depth qualitative interviews were conducted with 22 people with a diagnosis of schizophrenia. Interviews were analysed using thematic frameworks, and a realist informed theories of change approach. Results Our study revealed the potential causal relationships between the context of a person's life, short‐term goals and long‐term outcomes. We provide a nuanced and detailed exploration of outcomes that matter for people with schizophrenia in relation to self‐defined well‐being. Achieving life milestones, feeling safe and outcomes related to improved physical health along with employment, a positive sense of self and psychosocial outcomes, were highly valued. For short‐ and long‐term outcomes to be achieved, individuals required medication with minimal side‐effects, cognitive behavioural therapy, family/social support and meaningful activities in their lives. Well‐being was influenced by life context and short‐ and long‐term outcomes, but in a circular nature also framed what short‐term goals could be achieved. Conclusions Working with people with a diagnosis of schizophrenia to identify and achieve better outcomes will necessitate a person‐centred approach. This will require an appreciation of the relationship between the statutory and non‐statutory resources that are available and a consideration of an individual's current well‐being status. This approach acknowledges personal strengths and encourages ownership of goals and supports self‐management.

  April 03, 2017   doi: 10.1111/hex.12548   open full text
• Investigating strategies used by hospital pharmacists to effectively communicate with patients during medication counselling.
  Bernadette A. M. Chevalier, Bernadette M. Watson, Michael A. Barras, William Neil Cottrell.
  Health Expectations. March 30, 2017
  Background Medication counselling opportunities are key times for pharmacists and patients to discuss medications and patients’ concerns about their therapy. Communication Accommodation Theory (CAT) describes behavioural, motivational and emotional processes underlying communication exchanges. Five CAT strategies (approximation, interpretability, discourse management, emotional expression and interpersonal control) permit identification of effective communication. Objective To invoke CAT to investigate communication strategies used by hospital pharmacists during patient medication counselling. Design This was a theory‐based, qualitative study using transcribed audiorecordings of patients and hospital pharmacists engaged in medication counselling. Setting and participants Recruited pharmacists practised in inpatient or outpatient settings. Eligible patients within participating pharmacists’ practice sites were prescribed at least three medications to manage chronic disease(s). Main outcome measures The extent to which pharmacists accommodate, or not, to patients’ conversational needs based on accommodative behaviour described within CAT strategies. Results Twelve pharmacists engaged four patients (48 total interactions). Exemplars provided robust examples of pharmacists effectively accommodating or meeting patients’ conversational needs. Non‐accommodation mainly occurred when pharmacists spoke too quickly, used terms not understood by patients and did not include patients in the agenda‐setting phase. Multiple strategy use resulted in communication patterns such as “information‐reassurance‐rationale” sandwiches. Discussion and conclusions Most pharmacists effectively employed all five CAT strategies to engage patients in discussions. Pharmacists’ communication could be improved at the initial agenda‐setting phase by asking open‐ended questions to invite patients’ input and allow patients to identify any medication‐related concerns or issues.

  March 30, 2017   doi: 10.1111/hex.12558   open full text
• Patients’ views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury—A qualitative interview‐based study.
  Anke Scheel‐Sailer, Marcel W. Post, Franz Michel, Tatjana Weidmann‐Hügle, Ruth Baumann Hölzle.
  Health Expectations. March 24, 2017
  Introduction Involving patients in decision making is a legal requirement in many countries, associated with better rehabilitation outcomes, but not easily accomplished during initial inpatient rehabilitation after severe trauma. Providing medical treatment according to the principles of shared decision making is challenging as a point in case for persons with spinal cord injury (SCI). Objectives The aim of this study was to retrospectively explore the patients’ views on their participation in decision making during their first inpatient rehabilitation after onset of SCI, in order to optimize treatment concepts. Methods A total of 22 participants with SCI were interviewed in‐depth using a semi‐structured interview scheme between 6 months and 35 years post‐onset. Interviews were transcribed verbatim and analysed with the Mayring method for qualitative content analysis. Results Participants experienced a substantially reduced ability to participate in decision making during the early phase after SCI. They perceived physical, psychological and environmental factors to have impacted upon this ability. Patients mentioned regaining their ability to make decisions was an important goal during their first rehabilitation. Receiving adequate information in an understandable and personalized way was a prerequisite to achieve this goal. Other important factors included medical and psychological condition, personal engagement, time and dialogue with peers. Conclusion During the initial rehabilitation of patients with SCI, professionals need to deal with the discrepancy between the obligation to respect a patient's autonomy and their diminished ability for decision making.

  March 24, 2017   doi: 10.1111/hex.12559   open full text
• Barriers and enablers of type 2 diabetes self‐management in people with severe mental illness.
  Kathleen Mulligan, Hayley McBain, Frederique Lamontagne‐Godwin, Jacqui Chapman, Mark Haddad, Julia Jones, Chris Flood, David Thomas, Alan Simpson.
  Health Expectations. March 17, 2017
  Background People with diabetes and severe mental illness (SMI) experience poorer outcomes than those with diabetes alone. To improve outcomes, it is necessary to understand the difficulties that people with SMI experience in managing their diabetes. Aims To identify barriers and enablers to effective diabetes self‐management experienced by people with SMI and type 2 diabetes. Method Qualitative methodology using semi‐structured interviews was employed. Development of the interview topic guide and analysis of the transcripts were informed by the Theoretical Domains Framework for behaviour change, which consists of fourteen theoretical domains that have been found to influence behaviour. Results Fourteen people with SMI and type 2 diabetes took part in the study. Participants considered diabetes self‐management to be important, were aware of the risks of poor diabetes control but struggled to follow recommended advice, particularly if their mental health was poor. Support from family and health professionals was considered an important enabler of diabetes self‐management. Conclusions New approaches are required to support diabetes self‐management in people with SMI. This study identified some of the important domains that may be targeted in new interventions.

  March 17, 2017   doi: 10.1111/hex.12543   open full text
• “I have nine specialists. They need to swap notes!” Australian patients’ perspectives of medication‐related problems following discharge from hospital.
  Daniela Eassey, Andrew J. McLachlan, Jo‐anne Brien, Ines Krass, Lorraine Smith.
  Health Expectations. March 17, 2017
  Background Research has shown that patients are most susceptible to medication‐related problems (MRPs) when transitioning from hospital to home. Currently, the literature in this area focuses on interventions, which are mainly orientated around the perspective of the health‐care professional and do not take into account patient perspectives and experiences. Objective To capture the experiences and perceptions of Australian patients regarding MRPs following discharge from hospital. Design A cross‐sectional study was conducted using a questionnaire collecting quantitative and qualitative data. Thematic analysis was conducted of the qualitative data. Setting and participants Survey participants were recruited through The Digital Edge, an online market research company. Five hundred and six participants completed the survey. Results A total of 174 participants self‐reported MRPs. Two concepts and seven subthemes emerged from the analysis. The first concept was types of MRPs and patient experiences. Three themes were identified: unwanted effects from medicines, confusion about medicines and unrecognized medicines. The second concept was patient engagement in medication management, of which four themes emerged: informing patients, patient engagement, communication amongst health‐care professionals and conflicting advice. Discussion and conclusion This study provides an important insight into patients’ experiences and perceptions of MRPs following discharge from hospital. Future direction for practice and research should look into implementing patient‐centred care at the time of hospital discharge to ensure the provision of clear and consistent information, and developing ways to support and empower patients to ensure a smooth transition post‐discharge from hospital.

  March 17, 2017   doi: 10.1111/hex.12556   open full text
• Social and material aspects of life and their impact on the physical health of people diagnosed with mental illness.
  Stephanie B. Ewart, Brenda Happell, Julia Bocking, Chris Platania‐Phung, Robert Stanton, Brett Scholz.
  Health Expectations. March 15, 2017
  Background People diagnosed with mental illness have shorter lives and poorer physical health, compared to the general population. These health inequities are usually viewed at an individual and clinical level, yet there is little research on the views of mental health consumers on clinical factors in broader contexts. Objective To elicit the views of consumers of mental health services regarding their physical health and experiences of accessing physical health‐care services. Design Qualitative exploratory design involving focus groups. Setting and participants The research was conducted in the Australian Capital Territory. Participants were consumers of mental health services. Main outcome measures The Commission on Social Determinants of Health Framework was drawn on to lead deductive analysis of focus group interview transcripts. Results Issues impacting consumers included poverty, the neglect of public services and being treated as second‐class citizens because of diagnosis of mental illness and/or experiencing a psychosocial disability. These factors were connected with significant barriers in accessing physical health care, including the quality and relevance of health provider communication, especially when the broader contexts of mental health consumer's lives are not well understood. Discussion and conclusions These findings suggest the Commission on Social Determinants of Health Framework could be utilized in research and policy, and may provide an effective platform for exploring better health communication with mental health consumers regarding this neglected health inequity.

  March 15, 2017   doi: 10.1111/hex.12539   open full text
• Implementation of a youth‐adult partnership model in youth mental health systems research: Challenges and successes.
  Olivia S. Heffernan, Tyson M. Herzog, Jordana E. Schiralli, Lisa D. Hawke, Gloria Chaim, Joanna L. Henderson.
  Health Expectations. March 14, 2017
  Background By integrating Youth–Adult Partnerships (Y‐APs) in organizational decision making and programming in health‐care settings, youth can be engaged in decisions that affect them in a way that draws on their unique skills and expertise. Despite challenges, Y‐APs can have many benefits for youth and adults alike, as well as for the programmes and initiatives that they undertake together. Objective This article describes the development, implementation and success of a Y‐AP initiative at the McCain Centre at the Centre for Addiction and Mental Health, a large urban hospital. Method The McCain Y‐AP implementation model was developed based on the existing literature, guided by the team's progressive experience. The development and implementation procedure is described, with indicators of the model's success and recommendations for organizations interested integrating youth engagement. Results The McCain Y‐AP has integrated youth into a wide range of mental health and substance use‐related initiatives, including research projects, conferences and educational presentations. The model of youth engagement is flexible to include varying degrees of involvement, allowing youth to contribute in ways that fit their availability, interest and skills. Youth satisfaction has been strong and both the youth and adult partners have learned from the experience. Discussion Through the McCain Y‐AP initiative, youth engagement has helped advance numerous initiatives in a variety of ways. Flexible engagement, multifaceted mentorship, reciprocal learning and authentic decision making have led to a successful partnership that has provided opportunities for growth for all those involved. Health‐care organizations interested in engaging youth can learn from the McCain Y‐AP experience to guide their engagement initiatives and maximize success.

  March 14, 2017   doi: 10.1111/hex.12554   open full text
• Understanding advance care planning within the South Asian community.
  Patricia D. Biondo, Rashika Kalia, Rooh‐Afza Khan, Nadia Asghar, Cyrene Banerjee, Debbie Boulton, Nancy Marlett, Svetlana Shklarov, Jessica E. Simon.
  Health Expectations. March 10, 2017
  Background Advance care planning (ACP) is a process of reflection on and communication of a person's future health‐care preferences. Evidence suggests visible minorities engage less in ACP. The South Asian ethnic group is the largest visible minority group in Canada, and information is needed to understand how ACP is perceived and how best to approach ACP within this diverse community. Objective To explore perspectives of South Asian community members towards ACP. Design Peer‐to‐peer inquiry. South Asian community members who graduated from the Patient and Community Engagement Research programme (PaCER) at the University of Calgary utilized the PaCER method (SET, COLLECT and REFLECT) to conduct a focus group, family interviews and a community forum. Setting and participants Fifty‐seven community‐dwelling men and women (22‐86 years) who self‐identified with the South Asian community in Calgary, Alberta, Canada. Results The concept of ACP was mostly foreign to this community and was often associated with other end‐of‐life issues such as organ donation and estate planning. Cultural aspects (e.g. trust in shared family decision making and taboos related to discussing death), religious beliefs (e.g. fatalism) and immigration challenges (e.g. essential priorities) emerged as barriers to participation in ACP. However, participants were eager to learn about ACP and recommended several engagement strategies (e.g. disseminate information through religious institutions and community centres, include families in ACP discussions, encourage family physicians to initiate discussions and translate materials). Conclusions Use of a patient engagement research model proved highly successful in understanding South Asian community members' participation in ACP.

  March 10, 2017   doi: 10.1111/hex.12531   open full text
• Effectiveness of a decision aid for patients with depression: A randomized controlled trial.
  Lilisbeth Perestelo‐Perez, Amado Rivero‐Santana, Juan Antonio Sanchez‐Afonso, Jeanette Perez‐Ramos, Carmen Luisa Castellano‐Fuentes, Karen Sepucha, Pedro Serrano‐Aguilar.
  Health Expectations. March 10, 2017
  Background Shared decision making is an important component of patient‐centred care and decision aids are tools designed to support patients' decision making and help patients with depression to make informed choices. Objective The study aim was to assess the effectiveness of a web‐based decision aid for patients with unipolar depression. Design Randomized controlled trial. Setting and participants Adults diagnosed with a major depressive disorder and recruited in primary care centres were included and randomized to the decision aid (n=68) or usual care (n=79). Intervention Patients in the decision aid group reviewed the decision aid accompanied by a researcher. Outcome measures Knowledge about treatment options, decisional conflict, treatment intention and preference for participation in decision making. We also developed a pilot measure of concordance between patients' goals and concerns about treatment options and their treatment intention. Results Intervention significantly improved knowledge (P<.001) and decisional conflict (P<.001), and no differences were observed in treatment intention, preferences for participation, or concordance. One of the scales developed to measure goals and concerns showed validity issues. Conclusion The decision aid “Decision making in depression” is effective improving knowledge of treatment options and reducing decisional conflict of patients with unipolar depression. More research is needed to establish a valid and reliable measure of concordance between patients' goals and concerns regarding pharmacological and psychological treatment, and the choice made.

  March 10, 2017   doi: 10.1111/hex.12553   open full text
• Discussing prognosis and treatment goals with patients with advanced cancer: A qualitative analysis of oncologists’ language.
  Wen‐ying Sylvia Chou, Lauren M. Hamel, Chan L. Thai, David Debono, Robert A. Chapman, Terrance L. Albrecht, Louis A. Penner, Susan Eggly.
  Health Expectations. March 05, 2017
  Background The National Academy of Medicine recommends that cancer patients be knowledgeable of their prognosis to enable them to make informed treatment decisions, but research suggests few patients receive this information. Objective This qualitative study describes oncologists’ language during discussions of prognosis and treatment goals in clinical interactions with African American patients diagnosed with cancer. Design We analysed transcripts from video recordings of clinical interactions between patients with Stage III or IV cancer (n=26) and their oncologists (n=9). In‐depth discourse analysis was conducted to describe and interpret oncologists’ communication behaviours and common linguistic features in the interactions. Setting and participants Data were from a larger study of patient‐provider communication between African Americans and oncologists at two cancer hospitals in Detroit. Results Prognosis was discussed in 73.1% (n=19) of the interactions; treatment goals were discussed in 92.3% (n=24). However, analysis revealed that oncologists’ description of prognosis was vague (e.g. “prognosis is a bit worse in your case”) and rarely included a survival estimate. Oncologists often used ambiguous terminology, including euphemisms and jargon, and emphasized uncertainty (e.g. “lesions are suspicious for the disease”). Conversation about prognosis was frequently brief, moving quickly to the urgency and details of treatment. Discussion This study demonstrates how oncologists’ language may obscure discussion of prognosis and treatment goals. The identified behaviours may lead to missed opportunities in eliciting and discussing patients’ knowledge about and preferences for their care. Patient‐, provider‐ and system‐oriented interventions are needed to improve clinical communication, especially among minority patients with advanced cancer.

  March 05, 2017   doi: 10.1111/hex.12549   open full text
• Communication challenges experienced by migrants with cancer: A comparison of migrant and English‐speaking Australian‐born cancer patients.
  Amelia Hyatt, Ruby Lipson‐Smith, Penelope Schofield, Karla Gough, Ming Sze, Lynley Aldridge, David Goldstein, Michael Jefford, Melanie L. Bell, Phyllis Butow.
  Health Expectations. March 05, 2017
  Objectives Understanding the difficulties faced by different migrant groups is vital to address disparities and inform targeted health‐care service delivery. Migrant oncology patients experience increased morbidity, mortality and psychological distress, with this tentatively linked to language and communication difficulties. The objective of this exploratory study was to investigate the communication barriers and challenges experienced by Arabic, Greek and Chinese (Mandarin and Cantonese) speaking oncology patients in Australia. Methods This study employed a cross‐sectional design using patient‐reported outcome survey data from migrant and English‐speaking Australian‐born patients with cancer. Patients were recruited through oncology clinics and Australian state cancer registries. Data were collected regarding patient clinical and demographic characteristics and health‐care and communication experiences. Data from the clinics and registries were combined for analysis. Results Significant differences were found between migrant groups in demographic characteristics, communication and health‐care experiences, and information and care preferences. Chinese patients cited problems with understanding medical information, the Australian health‐care system, and communicating with their health‐care team. Conversely, Arabic‐ and Greek‐speaking patients reported higher understanding of the health‐care system, and less communication difficulties. Conclusions Our study findings suggest that migrant groups differ from each other in their health communication expectations and requirements. Lower education and health literacy of some groups may play a role in poorer health outcomes. Public health interventions and assistance provided to migrants should be tailored to the specific needs and characteristics of that language or cultural group. Future research directions are discussed.

  March 05, 2017   doi: 10.1111/hex.12529   open full text
• Identifying patient‐centred recommendations for improving patient safety in General Practices in England: a qualitative content analysis of free‐text responses using the Patient Reported Experiences and Outcomes of Safety in Primary Care (PREOS‐PC) questionnaire.
  Ignacio Ricci‐Cabello, Lorena Saletti‐Cuesta, Sarah P. Slight, Jose M. Valderas.
  Health Expectations. February 28, 2017
  Background There is a growing interest in identifying strategies to achieve safer primary health‐care provision. However, most of the research conducted so far in this area relies on information supplied by health‐care providers, and limited attention has been paid to patients’ perspectives. Objective To explore patients’ experiences and perceptions of patient safety in English general practices with the aim of eliciting patient‐centred recommendations for improving patient safety. Methods The Patient Reported Experiences and Outcomes of Safety in Primary Care questionnaire was sent to a random sample of 6736 primary care users registered in 45 English practices. We conducted a qualitative content analysis of responses to seven open‐ended items addressing patients’ experiences of safety problems, lessons learnt as a result of such experiences and recommendations for safer health care. Results A total of 1244 (18.4%) participants returned completed questionnaires. Of those, 678 (54.5%) responded to at least one open‐ended question. Two main themes emerged as follows: (i) experiences of safety problems and (ii) good practices and recommendations to improve patient safety in primary care. Most frequent experiences of safety problems were related to appointments, coordination between providers, tests, medication and diagnosis. Patients’ responses to these problems included increased patient activation (eg speaking up about concerns with their health care) and avoidance of unnecessary health care. Recommendations for safer health care included improvements in patient‐centred communication, continuity of care, timely appointments, technical quality of care, active monitoring, teamwork, health records and practice environment. Conclusion This study identified a number of patient‐centred recommendations for improving patient safety in English general practices.

  February 28, 2017   doi: 10.1111/hex.12537   open full text
• Effect on cardiovascular disease risk factors of interventions to alter consultations between practitioners and patients with type 2 diabetes: A systematic review and meta‐analysis of trials in primary care.
  Hajira Dambha‐Miller, Andrew J. M. Cooper, Ann Louise Kinmonth, Simon J. Griffin.
  Health Expectations. February 28, 2017
  Objective To examine the effect on cardiovascular (CVD) risk factors of interventions to alter consultations between practitioners and patients with type 2 diabetes. Search Strategy Electronic and manual citation searching to identify relevant randomized controlled trials (RCTs). Inclusion Criteria RCTs that compared usual care to interventions to alter consultations between practitioners and patients. The population was adults aged over 18 years with type 2 diabetes. Trials were set in primary care. Data extraction and synthesis We recorded if explicit theory‐based interventions were used, how consultations were measured to determine whether interventions had an effect on these and calculated weighted mean differences for CVD risk factors including glycated haemoglobin (HbA1c), systolic blood pressure (SBP), diastolic blood pressure (DBP), total cholesterol (TC), LDL cholesterol (LDL‐C) and HDL cholesterol (HDL‐C). Results We included seven RCTs with a total of 2277 patients with type 2 diabetes. A range of measures of the consultation was reported, and underlying theory to explain intervention processes was generally undeveloped and poorly applied. There were no overall effects on CVD risk factors; however, trials were heterogeneous. Subgroup analysis suggested some benefit among studies in which interventions demonstrated impact on consultations; statistically significant reductions in HbA1c levels (weighted mean difference, −0.53%; 95% CI: [−0.77, −0.28]; P<.0001; I2=46%). Conclusions Evidence of effect on CVD risk factors from interventions to alter consultations between practitioners and patients with type 2 diabetes was heterogeneous and inconclusive. This could be explained by variable impact of interventions on consultations. More research is required that includes robust measures of the consultations and better development of theory to elucidate mechanisms.

  February 28, 2017   doi: 10.1111/hex.12546   open full text
• Closing the patient experience chasm: A two‐level validation of the Consumer Quality Index Inpatient Hospital Care.
  Alina Smirnova, Kiki M. J. M. H. Lombarts, Onyebuchi A. Arah, Cees P. M. Vleuten.
  Health Expectations. February 20, 2017
  Background Evaluation of patients’ health care experiences is central to measuring patient‐centred care. However, different instruments tend to be used at the hospital or departmental level but rarely both, leading to a lack of standardization of patient experience measures. Objective To validate the Consumer Quality Index (CQI) Inpatient Hospital Care for use on both department and hospital levels. Design Using cross‐sectional observational data, we investigated the internal validity of the questionnaire using confirmatory factor analyses (CFA), and the generalizability of the questionnaire for use at the department and hospital levels using generalizability theory. Setting and participants 22924 adults hospitalized for ≥24 hours between 1 January 2013 and 31 December 2014 in 23 Dutch hospitals (515 department evaluations). Main variable CQI Inpatient Hospital Care questionnaire. Results CFA results showed a good fit on individual level (CFI=0.96, TLI=0.95, RMSEA=0.04), which was comparable between specialties. When scores were aggregated to the department level, the fit was less desirable (CFI=0.83, TLI=0.81, RMSEA=0.06), and there was a significant overlap between communication with doctors and explanation of treatment subscales. Departments and hospitals explained ≤5% of total variance in subscale scores. In total, 4‐8 departments and 50 respondents per department are needed to reliably evaluate subscales rated on a 4‐point scale, and 10 departments with 100‐150 respondents per department for binary subscales. Discussion and conclusions The CQI Inpatient Hospital Care is a valid and reliable questionnaire to evaluate inpatient experiences in Dutch hospitals provided sufficient sampling is done. Results can facilitate meaningful comparisons and guide quality improvement activities in individual departments and hospitals.

  February 20, 2017   doi: 10.1111/hex.12545   open full text
• “It goes against the grain”: A qualitative study of the experiences of parents’ administering distressing health‐care procedures for their child at home.
  Gemma Spiers, Bryony Beresford.
  Health Expectations. February 14, 2017
  Background Parents caring for children with complex and long‐term conditions at home take on responsibility for technical health‐care procedures that may cause their child distress. Little evidence exists about parents’ experience of this specific aspect of their caring role. Aims To explore and understand parents’ experiences of administering distressing health‐care procedures as part of caring for their child at home. Design An explorative qualitative study. Methods A purposive sample of parents who were currently carrying out, or had previously carried out, health‐care procedures they thought their child found distressing was recruited. Data were collected using in‐depth interviews and analysed thematically. Findings Administering these procedures was not just a clinical task. That the procedures caused distress for the child meant there were additional issues to consider and address. A major issue for parents was being able to prevent or minimize their child's distress, which in turn was closely linked to parents’ own emotional discomfort in the situation. Parents also had to manage their child's physical and verbal resistance, their own emotional discomfort during the procedure, and the presence and reaction of siblings in the home. The types of support that were valued by parents included advice about managing their child's distress and resistance, occasional assistance with procedures, addressing the emotional aspects of the role, and adequate training and on‐going supervision. Conclusion The “added” challenges of assuming this responsibility have implications for the support of parents caring for ill children at home.

  February 14, 2017   doi: 10.1111/hex.12532   open full text
• Stigmatization among people living with HIV in Hong Kong: A qualitative study.
  Phoenix K. H. Mo, Charlson T. Y. Ng.
  Health Expectations. February 14, 2017
  Background HIV/AIDS is one of the most stigmatized medical conditions across the world. Self‐stigma is prevalent among people living with HIV (PLHIV) and a major obstacle to HIV prevention and care. Objective This study aimed to describe the experiences of stigmatization and explore the possible factors that might be associated with stigmatization among PLHIV in Hong Kong. Design Qualitative in‐depth interviews were conducted. Setting and participants 15 PLHIV were recruited from two local non‐governmental organizations on HIV prevention. Main variables studied Participants were interviewed about their views and feelings towards oneself as a PLHIV and contributing factors, experiences of discriminations, stigmatizing behaviours, issues about disclosure, social relationships and potential impact of HIV. Results and conclusions Thematic analyses revealed three levels of factors which might be associated with stigmatization: (i) intrapersonal level (misconceptions about HIV, attribution of self‐responsibility, severe state of illness, side‐effects of medication), (ii) interpersonal level (discrimination, social rejection) and (iii) social level (mass media, public stereotypes). Findings provide important insights into which interventions to reduce stigmatization of PLHIV could be designed.

  February 14, 2017   doi: 10.1111/hex.12535   open full text
• Women's perspectives on human papillomavirus self‐sampling in the context of the UK cervical screening programme.
  Denitza Williams, Myfanwy Davies, Alison Fiander, Daniel Farewell, Sharon Hillier, Kate Brain.
  Health Expectations. February 10, 2017
  Background Testing for human papillomavirus (HPV) is being incorporated into the cervical screening programme, with the probable future introduction of HPV as a primary test and a possibility of HPV self‐sampling. In anticipation of this development, we sought to inform future policy and practice by identifying potential barriers to HPV self‐sampling. Methods A cross‐sectional survey of 194 women aged 20‐64 years was conducted. Logistic regression analysis was used to identify determinants of self‐sampling intentions. A purposive subsample of 19 women who reported low self‐sampling intentions were interviewed. Interviews were framework‐analysed. Results Most survey participants (N=133, 69.3%) intended to HPV self‐sample. Lower intention was associated with lower self‐efficacy (OR=24.96, P≤.001), lower education (OR=6.06, P≤.05) and lower perceived importance of HPV as a cause of cervical cancer (OR=2.33, P≤.05). Interviews revealed personal and system‐related barriers. Personal barriers included a lack of knowledge about HPV self‐sampling, women's low confidence in their ability to self‐sample correctly and low confidence in the subsequent results. System‐related factors included a lack of confidence in the rationale for modifying the current cervical screening programme, and concerns about sample contamination and identity theft. Conclusions Insights gained from this research can be used to guide further enquiry into the possibility of HPV self‐sampling and to help inform future policy and practice. Personal and system‐related barriers including low confidence in the reasons for changing current cervical screening provision need to be addressed, should HPV self‐sampling be incorporated into the cervical screening programme.

  February 10, 2017   doi: 10.1111/hex.12544   open full text
• Involving Latina/o parents in patient‐centered outcomes research: Contributions to research study design, implementation and outcomes.
  Mónica Pérez Jolles, Maria Martinez, San Juanita Garcia, Gabriela L. Stein, , Kathleen C. Thomas.
  Health Expectations. February 08, 2017
  Background Comparative effectiveness research (CER) is supported by policymakers as a way to provide service providers and patients with evidence‐based information to make better health‐care decisions and ultimately improve services for patients. However, Latina/o patients are rarely involved as study advisors, and there is a lack of documentation on how their voices contribute to the research process when they are included as collaborators. Objectives The purpose of this article was to contribute to the literature by presenting concrete contributions of Latina/o parent involvement to study design, implementation and outcomes in the context of a CER study called Padres Efectivos (Parent Activation). Methods Researchers facilitated a collaborative relationship with parents by establishing a mentor parent group. The contributions of parent involvement in the following stages of the research process are described: (i) proposal development, (ii) implementation of protocols, (iii) analysis plan and (iv) dissemination of results. Results Mentor parents’ contributions helped tailor the content of the intervention to their needs during proposal, increased recruitment, validated the main outcome measure and added two important outcome measures, emphasized the importance of controlling for novice treatment status and developed innovative dissemination strategies. Conclusions Mentor parents’ guidance to the researchers has contributed to reaching recruitment goals, strengthened the study protocol, expanded findings, supported broad ownership of study implications and enriched the overall study data collection efforts. These findings can inform future research efforts seeking an active Latino parent collaboration and the timely incorporation of parent voices in each phase of the research process.

  February 08, 2017   doi: 10.1111/hex.12540   open full text
• Do we all agree what “good health care” looks like? Views from those who are “seldom heard” in health research, policy and service improvement.
  Sara Ryan, Jenny Hislop, Sue Ziebland.
  Health Expectations. February 03, 2017
  Context The aim of this study was to ask whether there are shared ideas about what good health care looks like that apply across different populations and conditions. Do priorities among “seldom heard” groups differ from mainstream views and, if so, how might we understand these differences? Design Focus groups were recruited with the help of our study patient representatives. Participants discussed and prioritized a set of eight “core components” of good care. We recorded and transcribed the data for thematic analysis. Setting and participants We recruited people who are seldom heard in health and policy research for separate focus group discussions (one each with illegal drug users, Irish Travellers, migrant workers, young men and learning disabled people). We also ran a reference group of educated, older adults and an online group with people with long‐term conditions. Results There were few differences in what participants thought was important in health care but considerable differences in their expectations that they might personally receive good care. Differences related to participants' previous experiences. The drug users group reported particularly poor experiences and low expectations of good care. Discussion Differences in what is regarded as an entitlement or privilege in health care underline the persistence of structural and relational differences in how services are experienced. While we can be reassured that core aspects of care are similarly prioritized across different patient groups, including those who are seldom heard, a more intractable challenge remains: how to provide equitable health care for marginalized groups in an unequal society.

  February 03, 2017   doi: 10.1111/hex.12528   open full text
• The complexity of shaping self‐management in daily practice.
  Hester M. Bovenkamp, Jolanda Dwarswaard.
  Health Expectations. February 02, 2017
  Background and context Many countries are giving patients a more active role in health care, on both the individual and collective level. This study focuses on one aspect of the participation agenda on the individual level: self‐management. The study explores self‐management in practice, including the implications of the difficulties encountered. Objective To gain insight into the complexity of self‐management practice. This is crucial for developing both self‐management interventions and the participation policy agenda. Methods Qualitative semi‐structured interviews with experts (n=6) and patients with a chronic condition (n=20). Results In terms of level of involvement and type of activity, shaping self‐management in practice depends on personal and social dynamics, patients’ ideas of the good life and their interactions with care professionals. Clashes can arise when patients and professionals hold differing ideas, based on different values, about the level and type of patient involvement. Discussion The discussion on self‐management should account for the fact that how we define self‐management is very much a normative issue. It depends on the norms and values of patients, professionals and underlying health‐care policies. Differing ideas present professionals with ethical dilemmas which they should reflect on. However, professional reflection alone is not enough to deal with these dilemmas. The participation agenda needs far wider ranging reflection on how participation relates to other values in health care.

  February 02, 2017   doi: 10.1111/hex.12536   open full text
• Beyond the consultation room: Proposals to approach health promotion in primary care according to health‐care users, key community informants and primary care centre workers.
  Anna Berenguera, Mariona Pons‐Vigués, Patricia Moreno‐Peral, Sebastià March, Joana Ripoll, Maria Rubio‐Valera, Haizea Pombo‐Ramos, Angela Asensio‐Martínez, Eva Bolaños‐Gallardo, Catalina Martínez‐Carazo, José Ángel Maderuelo‐Fernández, Maria Martínez‐Andrés, Enriqueta Pujol‐Ribera.
  Health Expectations. January 24, 2017
  Background Primary health care (PHC) is the ideal setting to provide integrated services centred on the person and to implement health promotion (HP) activities. Objective To identify proposals to approach HP in the context of primary care according to health‐care users aged 45‐75 years, key community informants and primary care centre (PCC) workers. Methods Descriptive‐interpretive qualitative research with 276 participants from 14 PCC of seven Spanish regions. A theoretical sampling was used for selection. A total of 25 discussion groups, two triangular groups and 30 semi‐structured interviews were carried out. A thematic interpretive contents analysis was carried out. Results Participants consider that HP is not solely a matter for the health sector and they emphasize intersectoral collaboration. They believe that it is important to strengthen community initiatives and to create a healthy social environment that encourages greater responsibility and participation of health‐care users in decisions regarding their own health and better management of public services and resources. HP, care in the community and demedicalization should be priorities for PHC. Participants propose organizational changes in the PCC to improve HP. PCC workers are aware that HP falls within the scope of their responsibilities and propose to increase their training, motivation, competences and knowledge of the social environment. Informants emphasize that HP should be person‐centred approach and empathic communication. HP activities should be appealing, ludic and of proven effectiveness. Conclusions According to a socio‐ecological and intersectoral model, PHC services must get actively involved in HP together with community and through outreach interventions.

  January 24, 2017   doi: 10.1111/hex.12530   open full text
• A qualitative study exploring medication management in people with dementia living in the community and the potential role of the community pharmacist.
  Ian D. Maidment, Lydia Aston, Tiago Moutela, Chris G. Fox, Andrea Hilton.
  Health Expectations. January 19, 2017
  Background The prevalence of dementia is increasing rapidly. People with dementia may be prescribed complex medication regimens, which may be challenging for them and any carers involved to safely manage. Objective To describe and understand the key challenges, in relation to medication issues, experienced by people with dementia and their informal carers dwelling in the community and the potential role of community pharmacists. Design Qualitative semi‐structured interviews. Participants People with dementia, informal carers and health and social care professionals (HSCPs). Results Thirty‐one participants (eleven informal carers, four people with dementia and sixteen HSCPs) were interviewed. Three key themes were identified: the key challenges, improving medication management and the role of pharmacists. The caring role commonly included responsibility for medication management which created both practical problems and an emotional burden. This burden was worsened by any difficulty in obtaining support and if the person with dementia was on a complex regimen. Participants believed that the process could be improved by coordinated and on‐going support from HSCPs, which should focus on the informal carer. Medication reviews, particularly when conducted in the home environment, could be helpful. Conclusion Medication management for people with dementia living in the community is a complex process, and informal carers have a key role, which they frequently find challenging. Community pharmacists could have an enhanced role in this area, but would need to work within a more multidisciplinary environment outside the pharmacy.

  January 19, 2017   doi: 10.1111/hex.12534   open full text
• How lay people understand and make sense of personalized disease risk information.
  Olga C. Damman, Nina M. M. Bogaerts, Maaike J. Haak, Danielle R. M. Timmermans.
  Health Expectations. January 17, 2017
  Background Disease risk calculators are increasingly web‐based, but previous studies have shown that risk information often poses problems for lay users. Objective To examine how lay people understand the result derived from an online cardiometabolic risk calculator. Design A qualitative study was performed, using the risk calculator in the Dutch National Prevention Program for cardiometabolic diseases. The study consisted of three parts: (i) attention: completion of the risk calculator while an eye tracker registered eye movements; (ii) recall: completion of a recall task; and (iii) interpretation: participation in a semi‐structured interview. Setting and participants We recruited people from the target population through an advertisement in a local newspaper; 16 people participated in the study, which took place in our university laboratory. Results Eye‐tracking data showed that participants looked most extensively at numerical risk information. Percentages were recalled well, whereas natural frequencies and verbal labels were remembered less well. Five qualitative themes were derived from the interview data: (i) numerical information does not really sink in; (ii) the verbal categorical label made no real impact on people; (iii) people relied heavily on existing knowledge and beliefs; (iv) people zoomed in on risk factors, especially family history of diseases; and (v) people often compared their situation to that of their peers. Discussion and conclusion Although people paid attention to and recalled the risk information to a certain extent, they seemed to have difficulty in properly using this information for interpreting their risk.

  January 17, 2017   doi: 10.1111/hex.12538   open full text
• Development and feasibility testing of the Pediatric Emergency Discharge Interaction Coding Scheme.
  Janet A. Curran, Alexandra Taylor, Jill Chorney, Stephen Porter, Andrea Murphy, Shannon MacPhee, Andrea Bishop, Rebecca Haworth.
  Health Expectations. January 12, 2017
  Background Discharge communication is an important aspect of high‐quality emergency care. This study addresses the gap in knowledge on how to describe discharge communication in a paediatric emergency department (ED). Objective The objective of this feasibility study was to develop and test a coding scheme to characterize discharge communication between health‐care providers (HCPs) and caregivers who visit the ED with their children. Design The Pediatric Emergency Discharge Interaction Coding Scheme (PEDICS) and coding manual were developed following a review of the literature and an iterative refinement process involving HCP observations, inter‐rater assessments and team consensus. Setting and participants The coding scheme was pilot‐tested through observations of HCPs across a range of shifts in one urban paediatric ED. Main variables studied Overall, 329 patient observations were carried out across 50 observational shifts. Inter‐rater reliability was evaluated in 16% of the observations. The final version of the PEDICS contained 41 communication elements. Results Kappa scores were greater than .60 for the majority of communication elements. The most frequently observed communication elements were under the Introduction node and the least frequently observed were under the Social Concerns node. HCPs initiated the majority of the communication. Conclusion Pediatric Emergency Discharge Interaction Coding Scheme addresses an important gap in the discharge communication literature. The tool is useful for mapping patterns of discharge communication between HCPs and caregivers. Results from our pilot test identified deficits in specific areas of discharge communication that could impact adherence to discharge instructions. The PEDICS would benefit from further testing with a different sample of HCPs.

  January 12, 2017   doi: 10.1111/hex.12512   open full text
• Attending to power differentials: How NP‐led group medical visits can influence the management of chronic conditions.
  Laura Housden, Annette J. Browne, Sabrina T. Wong, Martin Dawes.
  Health Expectations. January 10, 2017
  Objective In Canada, primary care reform has encouraged innovations, including nurse practitioners (NPs) and group medical visits (GMVs). NP‐led GMVs provide an opportunity to examine barriers and enablers to implementing this innovation in primary care. Design An instrumental case study design (n=3): two cases where NPs were using GMVs and one case where NPs were not using GMVs, was completed. In‐depth interviews with patients and providers (N=24) and 10 hours of direct observation were completed. Interpretive descriptive methods were used to analyse data. Results/Findings Two main themes were identified: (i) acquisition of knowledge and (ii) GMVs help shift relationships between patients and health‐care providers. Participants discussed how patients and providers learn from one another to facilitate self‐management of chronic conditions. They also discussed how the GMV shifts inherent power differentials between providers and between patients and providers. Discussion NP‐led GMVs are a method of care delivery that harness NPs’ professional agency through increased leadership and interprofessional collaboration. GMVs also facilitate an environment that is patient‐centred and interprofessional, providing patients with increased confidence to manage their chronic conditions. The GMV provides the opportunity to meet both team‐based and patient‐centred health‐care objectives and may disrupt inherent power differentials that exist in primary care.

  January 10, 2017   doi: 10.1111/hex.12525   open full text
• Patient expectations for management of chronic non‐cancer pain: A systematic review.
  Jose W. Geurts, Paul C. Willems, Craig Lockwood, Maarten Kleef, Jos Kleijnen, Carmen Dirksen.
  Health Expectations. December 23, 2016
  Background Chronic pain is a major economic and social health problem. Up to 79% of chronic pain patients are unsatisfied with their pain management. Meeting patients’ expectations is likely to produce greater satisfaction with care. The challenge is to explore patients’ genuine expectations and needs. However, the term expectation encompasses several concepts and may concern different aspects of health‐care provision. Objective This review aimed to systematically collect information on types and subject of patients’ expectations for chronic pain management. Search strategy We searched for quantitative and qualitative studies. Because of the multidimensional character of the term “expectations,” the search included subject headings and free text words related to the concept of expectations. Data extraction and synthesis A framework for understanding patients’ expectations was used to map types of expectations within structure, process or outcome of health care. Main results Twenty‐three research papers met the inclusion criteria: 18 quantitative and five qualitative. This review found that assessment of patients’ expectations for treatment is mostly limited to outcome expectations (all 18 quantitative papers and four qualitative papers). Patients generally have high expectations regarding pain reduction after treatment, but expectations were higher when expressed as an ideal expectation (81‐93% relief) than as a predicted expectation (44‐64%). Discussion and conclusions For health‐care providers, for pain management and for pain research purposes, the awareness that patients express different types of expectations is important. For shared decision making in clinical practice, it is important that predicted expectations of the patient are known to the treating physician and discussed. Structure and process expectations are under‐represented in our findings. However, exploring and meeting patients’ expectations regarding structure, process and outcome aspects of pain management may increase patient satisfaction.

  December 23, 2016   doi: 10.1111/hex.12527   open full text
• “Giving us hope”: Parent and neonatal staff views and expectations of a planned family‐centred discharge process (Train‐to‐Home).
  Jenny Ingram, Maggie Redshaw, Sarah Manns, Lucy Beasant, Debbie Johnson, Peter Fleming, David Pontin.
  Health Expectations. December 21, 2016
  Background Preparing families and preterm infants for discharge is relatively unstructured in many UK neonatal units (NNUs). Family‐centred neonatal care and discharge planning are recommended but variable. Design and participants Qualitative interviews with 37 parents of infants in NNUs, and 18 nursing staff and 5 neonatal consultants explored their views of discharge planning and perceptions of a planned family‐centred discharge process (Train‐to‐Home). Train‐to‐Home facilitates communication between staff and parents throughout the neonatal stay, using a laminated train and parent booklets. Results Parents were overwhelmingly positive about Train‐to‐Home. They described being given hope, feeling in control and having something visual to show their baby's progress. They reported positive involvement of fathers and families, how predicted discharge dates helped them prepare for home and ways staff engaged with Train‐to‐Home when communicating with them. Nursing staff reactions were mixed—some were uncertain about when to use it, but found the visual images powerful. Medical staff in all NNUs were positive about the intervention recognizing that it helped in communicating better with parents. Conclusions Using a parent‐centred approach to communication and informing parents about the needs and progress of their preterm infant in hospital is welcomed by parents and many staff. This approach meets the recommended prioritization of family‐centred care for such families. Predicted discharge dates helped parents prepare for home, and the ways staff engaged with Train‐to‐Home when communicating with them helped them feel more confident as well as having something visual to show their baby's progress.

  December 21, 2016   doi: 10.1111/hex.12514   open full text
• A new graphical format to communicate treatment effects to patients—A web‐based randomized controlled trial.
  Jürgen Kasper, Adrian Roemer, Jana Pöttgen, Anne Rahn, Imke Backhus, Yasemin Bay, Sascha Köpke, Christoph Heesen.
  Health Expectations. December 16, 2016
  Objective Patients making treatment decisions require understandable evidence‐based information. However, evidence on graphical presentation of benefits and side‐effects of medical treatments is not conclusive. The study evaluated a new space‐saving format, CLARIFIG (clarifying risk figures), aiming to facilitate accuracy of comprehension. Methods CLARIFIG displays groups of patients with and without treatment benefits as coloured sectors of a proportional bar graph representing in total 100 patients. Supplementary icons indicate the corresponding group's actual condition. The study used an application showing effects of immunotherapy intended to slow disease progression in multiple sclerosis (MS). In a four‐arm web‐based randomized controlled trial, CLARIFIG was compared to the reference standard, multifigure pictographs (MFP), regarding comprehension (primary outcome) and processing time. Both formats were presented as static and animated versions. People with MS were recruited through the website of the German MS society. Results Six hundred and eighty‐two patients were randomized and analysed for the primary end point. There were no differences in comprehension rates (MFPstatic=46%, CLARIFIGstatic=44%; P=.59; MFPanimated=23%, CLARIFIGanimated=30%; P=.134). Processing time for CLARIFIG was shorter only in the animated version (MFPstatic=162 seconds, CLARIFIGstatic=155 seconds; P=.653; MFPanimated=286 seconds, CLARIFIGanimated=189 seconds; P≤.001). However, both animated versions caused more wrong answers and longer processing time than static presentation (MFPstatic vs animated: P≤.001/.001, CLARIFIGstatic vs animated: P=.027/.017). Conclusion Comprehension of the new format is comparable to MFP. CLARIFIG has the potential to simplify presentation in more complex contexts such as comparison of several treatment options in patient decision aids, but further studies are needed.

  December 16, 2016   doi: 10.1111/hex.12522   open full text
• Using a co‐production prioritization exercise involving South Asian children, young people and their families to identify health priorities requiring further research and public awareness.
  Logan Manikam, Rakhee Shah, Kate Reed, Gupreet Santini, Monica Lakhanpaul.
  Health Expectations. December 08, 2016
  Objectives To facilitate South Asian (SA) families and health‐care professionals (HCPs) participation in a prioritization exercise to co‐produce child health research and public awareness agendas. Design A three‐stage process was adopted involving the following: (i) systematic literature review, (ii) HCP scoping survey and (iii) focus groups of SA adolescents and families. A Punjabi‐ and Urdu‐speaking community facilitator moderated focus groups. A British Sign Language interpreter assisted in the hard of hearing group. Concordant and discordant themes between HCPs and SAs were identified. Setting National survey of HCPs. Leicestershire for SA families. Participants A total of 27 HCPs and 35 SAs. SAs varied by descent, age (16‐74), UK stay length (3‐57 years) religion and disability. Results Ranked by submission frequency in the survey, HCPs prioritized (i) public awareness on obesity, mental health, health‐care access, vitamin D and routine health checks and (ii) research on nutrition, diabetes, health education and parenting methods. Discussion South Asians prioritized research into the effectiveness of alternative medicines, a theme not identified by HCPs. Both HCPs and SAs prioritized increased research or public awareness on mental health illness, blood and organ donation, obesity and diet. Whilst HCPs identified diabetes, vitamin D and rickets together with parenting methods were important priorities requiring increased public awareness, and these views were not shared by SAs. Conclusions Minority groups are not always included in priority setting exercises due to concerns about language and perceived difficulty with accessing communities. Through this co‐production exercise, we showed that it is possible and essential.

  December 08, 2016   doi: 10.1111/hex.12524   open full text
• French women's representations and experiences of the post‐treatment management of breast cancer and their perception of the general practitioner's role in follow‐up care: A qualitative study.
  Catherine Laporte, Julie Vaure, Anne Bottet, Bénédicte Eschalier, Clémentine Raineau, Denis Pezet, Philippe Vorilhon.
  Health Expectations. November 29, 2016
  Background In France, the Cancer Plan II 2009‐2013 was launched to improve post‐cancer management and promote greater involvement of general practitioners (GPs) in follow‐up care. Objectives We investigated how women experienced the post‐treatment management of breast cancer and perceived the role of the GP in follow‐up care. Design We conducted a qualitative study based on semi‐structured interviews with women with breast cancer in remission. The interviews were transcribed and analysed in accordance with the principles of thematic analysis. Setting and participants We interviewed 21 patients aged between 30 and 86. Eighteen breast cancer survivors were recruited from GP practices and five from a patients’ association. Results Four themes emerged from the thematic analysis: that breast cancer is a life‐changing event; how patients managed the effects of treatment; how patients viewed the future; and patients’ expectations of their GP. Discussion and conclusion French survivors of breast cancer perceived the physical changes caused by their illness to impact their womanhood, leading to difficulties with sexual relations, a diminished sense of self and fears for the future. They felt abandoned at the end of treatment and desired support. They appreciated the ease of contacting their GP but considered follow‐up care outside their remit. They agreed to be followed up by their GP, provided that they co‐operated closely with a cancer specialist. This is in accordance with the French Cancer Plan II 2009‐2013, which recommends greater involvement of GPs in a monitoring protocol shared with cancer specialists.

  November 29, 2016   doi: 10.1111/hex.12518   open full text
• The power of symbolic capital in patient and public involvement in health research.
  Louise Locock, Anne‐Marie Boylan, Rosamund Snow, Sophie Staniszewska.
  Health Expectations. November 24, 2016
  Background Policy‐makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital. Objective To explore power relations in patient and public involvement (PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship. Methods Narrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically. Findings Symbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbolic capital is unstable and dependent on others for recognition and legitimacy. Nonetheless, participants identify a gradual shift in power relations over time. Discussion and conclusions Research into PPI has been conceptually and theoretically poor, limiting our understanding of its mechanisms and wider contextual elements. Our findings demonstrate the importance of reflecting on the forms of power and capital wielded by the health research community, and of acknowledging the way in which PPI is challenging the status quo. As one of the first papers to conceptualize how different forms of symbolic capital operate and their critical role in challenging the balance of power, our findings may help researchers better plan their PPI activities and reflect on their own power.

  November 24, 2016   doi: 10.1111/hex.12519   open full text
• Communication and patient participation influencing patient recall of treatment discussions.
  Claude Richard, Emma Glaser, Marie‐Thérèse Lussier.
  Health Expectations. November 21, 2016
  Context Patient recall of treatment information is a key variable towards chronic disease (CD) management. It is unclear what communication and patient participation characteristics predict recall. Objectives To assess what aspects of doctor‐patient communication predict patient recall of medication information. To describe lifestyle treatment recall, in CD primary care patients. Design Observational study within a RCT. Setting & participants Community‐based primary care (PC) practices. Family physicians (n=18): practicing >5 years, with a CD patient caseload. Patients (n=159): >40 years old, English speaking, computer literate, off‐target hypertension, type II diabetes and/or dyslipidaemia. Main variables Patient characteristics: age, education, number of CDs. Information characteristics: length of encounter, medication status, medication class. Communication variables: socio‐emotional utterances, physician dominance and communication control scores and PACE (ask, check and express) utterances, measured by RIAS. Number of medication themes, dialogue and initiative measured by MEDICODE. Main outcome measures Recall of CD, lifestyle treatment and medication information. Results Frequency of lifestyle discussions varied by topic. Patients recalled 43% (alcohol), 52% (diet) to 70% (exercise) of discussions. Two and a half of six possible medication themes were broached per medication discussion. Less than one was recalled. Discussing more themes, greater dialogue and patient initiative were significant predictors of improved medication information recall. Discussion Critical treatment information is infrequently exchanged. Active patient engagement and explicit conversations about medications are associated with improved treatment information recall in off‐target CD patients followed in PC. Conclusion Providers cannot take for granted that long‐term off‐target CD patients recall information. They need to encourage patient participation to improve recall of treatment information.

  November 21, 2016   doi: 10.1111/hex.12515   open full text
• The impact of physicians' communication styles on evaluation of physicians and information processing: A randomized study with simulated video consultations on contraception with an intrauterine device.
  Martina Bientzle, Tim Fissler, Ulrike Cress, Joachim Kimmerle.
  Health Expectations. November 18, 2016
  Objective This study aimed at examining the impact of different types of physicians' communication styles on people's subsequent evaluation of physician attributes as well as on their information processing, attitude and decision making. Method In a between‐group experiment, 80 participants watched one of three videos in which a gynaecologist displayed a particular communication style in a consultation situation on contraception with an intrauterine device. We compared doctor‐centred communication (DCC) vs patient‐centred communication (PCC) vs patient‐centred communication with need‐orientation (PCC‐N). Results In the PCC condition, participants perceived the physician to be more empathetic and more competent than in the DCC condition. In the DCC condition, participants showed less attitude change compared to the other conditions. In the PCC‐N condition, the physician was perceived as more empathetic and more socially competent than in the other conditions. However, participants acquired less knowledge in the PCC‐N condition. Conclusion We conclude that appropriate application of particular communication styles depends on specific consultation goals. Our results suggest that patients' needs should be addressed if the main goal is to build a good relationship, whereas a traditional PCC style appears to be more effective in communicating factual information.

  November 18, 2016   doi: 10.1111/hex.12521   open full text
• Easy read and accessible information for people with intellectual disabilities: Is it worth it? A meta‐narrative literature review.
  Deborah Chinn, Claire Homeyard.
  Health Expectations. November 16, 2016
  Background The proliferation of “accessible information” for people with intellectual disabilities in UK health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. However, questions have been raised as to the impact of such resources as a means of enhancing involvement in health care and addressing health inequalities. Objective To review and synthesize the evidence from different approaches used to evaluate the impact of accessible information for people with intellectual disabilities using a meta‐narrative approach. Search strategy Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods. Inclusion criteria Included English language papers published before December 2015 described the design and evaluation of written information adapted for adults with intellectual disabilities. Data extraction and synthesis We organized the papers into five groups according to similarity in authors’ writing styles and presentation, epistemology and theoretical foundations, aims and methodologies, professional and organizational identities. Main results The 42 included papers in the five groupings occupied diverse positions on (i) public communication vs individualized materials, (ii) literacy as decontextualized skills vs social practices and (iii) the expertise of patients vs professionals. There was limited evidence for the impact of accessible health information, notwithstanding the potential benefits associated with their creation. Conclusions Individually tailored information is more likely to meet personalized health information needs for people with intellectual disabilities. The emergence of different social formations in the creation of accessible information has potential for advancing engagement of diverse groups.

  November 16, 2016   doi: 10.1111/hex.12520   open full text
• PReSaFe: A model of barriers and facilitators to patients providing feedback on experiences of safety.
  Aoife De Brún, Emily Heavey, Justin Waring, Pamela Dawson, Jason Scott.
  Health Expectations. November 16, 2016
  Objective The importance of involving patients in reporting on safety is increasingly recognized. Whilst studies have identified barriers to clinician incident reporting, few have explored barriers and facilitators to patient reporting of safety experiences. This paper explores patient perspectives on providing feedback on safety experiences. Design/Participants Patients (n=28) were invited to take part in semi‐structured interviews when given a survey about their experiences of safety following hospital discharge. Transcripts were thematically analysed using NVivo10. Setting Patients were recruited from four hospitals in the UK. Results Three themes were identified as barriers and facilitators to patient involvement in providing feedback on their safety experiences. The first, cognitive‐cultural, found that whilst safety was a priority for most, some felt the term was not relevant to them because safety was the “default” position, and/or because safety could not be disentangled from the overall experience of care. The structural‐procedural theme indicated that reporting was facilitated when patients saw the process as straightforward, but that disinclination or perceived inability to provide feedback was a barrier. Finally, learning and change illustrated that perception of the impact of feedback could facilitate or inhibit reporting. Conclusions When collecting patient feedback on experiences of safety, it is important to consider what may help or hinder this process, beyond the process alone. We present a staged model of prerequisite barriers and facilitators and hypothesize that each stage needs to be achieved for patients to provide feedback on safety experiences. Implications for collecting meaningful data on patients' safety experiences are considered.

  November 16, 2016   doi: 10.1111/hex.12516   open full text
• “What matters to someone who matters to me”: using media campaigns with young people to prevent interpersonal violence and abuse.
  Nicky Stanley, Jane Ellis, Nicola Farrelly, Sandra Hollinghurst, Sue Bailey, Soo Downe.
  Health Expectations. November 03, 2016
  Background While media campaigns are increasingly advocated as a strategy for preventing interpersonal violence and abuse, there is little evidence available regarding their effectiveness. Setting and design Consultation with experts and young people was used as part of a UK scoping review to capture current thinking and practice on the use of media campaigns to address interpersonal violence and abuse among young people. Three focus groups and 16 interviews were undertaken with UK and international experts, and three focus groups were held with young people. Main results Participants argued that, although campaigns initially needed to target whole populations of young people, subsequently, messages should be “granulated” for subgroups including young people already exposed to interpersonal violence and lesbian, gay, bisexual and transgender young people. It was suggested that boys, as the most likely perpetrators of interpersonal violence and abuse, should be the primary target for campaigns. Young people and experts emphasized that drama and narrative could be used to evoke an emotional response that assisted learning. Authenticity emerged as important for young people and could be achieved by delivering messages through familiar characters and relevant stories. Involving young people themselves in creating and delivering campaigns strengthened authenticity. Conclusions Practice is developing rapidly, and robust research is required to identify the key conditions for effective campaigns in this field. The emotional impact of campaigns in this field appears to be as important as the transmission of learning.

  November 03, 2016   doi: 10.1111/hex.12495   open full text
• Patient and nurse preferences for implementation of bedside handover: Do they agree? Findings from a discrete choice experiment.
  Jennifer A. Whitty, Jean Spinks, Tracey Bucknall, Georgia Tobiano, Wendy Chaboyer.
  Health Expectations. November 02, 2016
  Objective To describe and compare patients' and nurses' preferences for the implementation of bedside handover. Design Discrete choice experiment describing handover choices using six characteristics: whether the patient is invited to participate; whether a family member/carer/friend is invited; the number of nurses present; the level of patient involvement; the information content; and privacy. Setting Two Australian hospitals. Participants Adult patients (n=401) and nurses (n=200) recruited from medical wards. Main outcome measures Mean importance scores for handover characteristics estimated using mixed multinomial logit regression of the choice data. Results Both patient and nurse participants preferred handover at the bedside rather than elsewhere (P<.05). Being invited to participate, supporting strong two‐way communication, having a family member/carer/friend present and having two nurses rather than the nursing team present were most important for patients. Patients being invited to participate and supporting strong two‐way communication were most important for nurses. However, contrary to patient preferences, having a family member/carer/friend present was not considered important by nurses. Further, while patients expressed a weak preference to have sensitive information handed over quietly at the bedside, nurses expressed a relatively strong preference for handover of sensitive information verbally away from the bedside. Conclusions All participants strongly support handover at the bedside and want patients to participate although patient and nurse preferences for various aspects of bedside handover differ. An understanding of these preferences is expected to support recommendations for improving the patient hospital experience and the consistent implementation of bedside handover as a safety initiative.

  November 02, 2016   doi: 10.1111/hex.12513   open full text
• Similar perspectives on prostate cancer screening value and new guidelines across patient demographic and PSA level subgroups: A qualitative study.
  Melissa R. Partin, Sarah E. Lillie, Katie M. White, Timothy J. Wilt, Kristin L. Chrouser, Brent C. Taylor, Diana J. Burgess.
  Health Expectations. November 02, 2016
  Background In 2012, the United States Preventive Services Task Force (USPSTF) recommended against prostate‐specific antigen (PSA)‐based prostate cancer screening for all men. Objective To inform educational materials addressing patient questions and concerns about the 2012 USPSTF guidelines, we sought to: (i) characterize patient perceptions about prostate cancer screening benefits, harms and recommendations against screening, and (ii) compare perceptions across race, age and PSA level subgroups. Methods We conducted qualitative interviews with a sample of 26 men from the Minneapolis Veterans Affairs Health Care System, stratified by race (African American, other), age (50‐69, 70‐84) and PSA level (documented PSA level ≥4 in Veterans Health Administration electronic medical records vs no such documentation). We used an inductive approach informed by grounded theory to analyse transcribed interviews. Results Most men in all subgroups expressed misperceptions about the benefits of prostate cancer screening and had difficulty identifying harms associated with screening. In all subgroups, reactions to recommendations against screening ranged from unconditionally receptive to highly resistant. Some men in every subgroup initially resistant to the idea said they would accept a recommendation to discontinue screening from their provider. Conclusions Given the similarity of perceptions and reactions across subgroups, materials targeted by race, age and PSA level may not be necessary. Efforts to inform decision making about prostate cancer screening should address misperceptions about benefits and lack of awareness of harms. Provider perspectives and recommendations may play a pivotal role in shaping patient reactions to new guidelines.

  November 02, 2016   doi: 10.1111/hex.12517   open full text
• Is there a role for patients and their relatives in escalating clinical deterioration in hospital? A systematic review.
  Abigail K. Albutt, Jane K. O'Hara, Mark T. Conner, Stephen J. Fletcher, Rebecca J. Lawton.
  Health Expectations. October 26, 2016
  Background Measures exist to improve early recognition of, and response to, deteriorating patients in hospital. However, deteriorating patients continue to go unrecognized. To address this, interventions have been developed that invite patients and relatives to escalate patient deterioration to a rapid response team (RRT). Objective To systematically review articles that describe these interventions and investigate their effectiveness at reducing preventable deterioration. Search strategy Following PRISMA guidelines, four electronic databases and two web search engines were searched to identify literature investigating patient and relative led escalation. Inclusion criteria Articles investigating the implementation or use of systems involving patients and relatives in the detection of clinical patient deterioration and escalation of patient care to address any clinical or non‐clinical outcomes were included. Articles’ eligibility was validated by a second reviewer (20%). Data extraction Data were extracted according to pre‐defined criteria. Data synthesis Narrative synthesis was applied to included studies. Main results Nine empirical studies and 36 grey literature articles were included in the review. Limited studies were conducted to establish the clinical effectiveness of patient and relative led escalation. Instead, studies investigated the impact of this intervention on health‐care staff and available resources. Although appropriate, this reflects the infancy of research in this area. Patients and relatives did not overwhelm resources by activating the RRT. However, they did activate it to address concerns unrelated to patient deterioration. Conclusions Activating a RRT may not be the most appropriate or cost‐effective method of resolving non‐life‐threatening concerns.

  October 26, 2016   doi: 10.1111/hex.12496   open full text
• Right choice, right time: Evaluation of an online decision aid for youth depression.
  Magenta B. Simmons, Aurora Elmes, Joanne E. McKenzie, Lyndal Trevena, Sarah E. Hetrick.
  Health Expectations. October 17, 2016
  Background Appropriate treatment for youth depression is an important public health priority. Shared decision making has been recommended, yet no decision aids exist to facilitate this. Objectives The main objective of this study was to evaluate an online decision aid for youth depression. Design An uncontrolled cohort study with pre‐decision, immediately post‐decision and follow‐up measurements. Setting and Participants Young people (n=66) aged 12‐25 years with mild, mild‐moderate or moderate‐severe depression were recruited from two enhanced primary care services. Intervention Online decision aid with evidence communication, preference elicitation and decision support components. Main outcome measures The main outcome measures were ability to make a decision; whether the decision was in line with clinical practice guidelines, personal preferences and values; decisional conflict; perceived involvement; satisfaction with decision; adherence; and depression scores at follow‐up. Results After using the decision aid, clients were more likely to make a decision in line with guideline recommendations (93% vs 70%; P=.004), were more able to make a decision (97% vs 79%; P=.022), had significantly reduced decisional conflict (17.8 points lower (95% CI: 13.3‐22.9 points lower) on the Decisional Conflict Scale (range 0‐100)) and felt involved and satisfied with their decision. At follow‐up, clients had significantly reduced depression symptoms (2.7 points lower (95% CI: 1.3‐4.0 points lower) on the Patient Health Questionnaire nine‐item scale (range 0‐27)) and were adherent to 88% (95% CI: 82%‐94%) of treatment courses. Discussion and Conclusions A decision aid for youth depression can help ensure evidence‐based, client‐centred care, promoting collaboration in this often difficult to engage population.

  October 17, 2016   doi: 10.1111/hex.12510   open full text
• Successful participation of patients in interprofessional team meetings: A qualitative study.
  Jerôme Jean Jacques Dongen, Iris Gerarda Josephine Habets, Anna Beurskens, Marloes Amantia Bokhoven.
  Health Expectations. October 07, 2016
  Background The number of people with multiple chronic conditions increases as a result of ageing. To deal with the complex health‐care needs of these patients, it is important that health‐care professionals collaborate in interprofessional teams. To deliver patient‐centred care, it is often recommended to include the patient as a member of the team. Objective To gain more insight into how health‐care professionals and patients, who are used to participate in interprofessional team meetings, experience and organize patient participation in the team meetings. Methods A qualitative study including observations of meetings (n=8), followed by semi‐structured interviews with participating health‐care professionals (n=8), patients and/or relatives (n=11). Professionals and patients were asked about their experiences of patient participation immediately after the team meetings. Results from both observations and interviews were analysed using content analysis. Results The findings show a variety of influencing factors related to patient participation that can be divided into five categories: (i) structure and task distribution, (ii) group composition, (iii) relationship between professionals and patients or relatives, (iv) patients’ characteristics and (v) the purpose of the meeting. Conclusion Patient participation during team meetings was appreciated by professionals and patients. A tailored approach to patient involvement during team meetings is preferable. When considering the presence of patients in team meetings, it is recommended to pay attention to patients’ willingness and ability to participate, and the necessary information shared before the meeting. Participating patients seem to appreciate support and preparation for the meeting.

  October 07, 2016   doi: 10.1111/hex.12511   open full text
• The Partners in Health scale for older adults: design and examination of its psychometric properties in a Dutch population of older adults.
  Karin Veldman, Sijmen A. Reijneveld, Maarten M. H. Lahr, Ronald J. Uittenbroek, Klaske Wynia.
  Health Expectations. October 07, 2016
  Background Self‐management is an important asset in helping older adults remain independent and in control for as long as possible. There is no reliable and valid measurement instrument to evaluate self‐management behaviour of older adults. Objective This study aims to design a measurement instrument, that is the Partners in Health scale for older adults (PIH‐OA), to assess self‐management knowledge and behaviour of community‐living older adults and to examine its psychometric properties in a Dutch context. Methods/design The original PIH scale was translated into Dutch and adapted to the context of community‐living older adults, resulting in the PIH‐OA. Data for 1127 participants (mean age 81.7, SD=4.5) from the Embrace study were used to assess the psychometric properties. Results Data fitted a three‐factor model, covering the constructs Knowledge, Management and Coping, with good internal consistencies (Cronbach's alphas ranging from .77 to .84). Known groups validity was confirmed: no differences were found between gender, age and marital status groups, and differences were found between the education level and health status groups. Discriminant validity was confirmed by weak correlations between PIH‐OA scales and scales evaluating “Perceived integrated care” and “Activities of daily living (ADL)” (r<.30), and a moderate correlation between the PIH‐OA subscale “Coping” and the scale evaluating “ADL” (r=.41). Conclusion The PIH‐OA appears to be a reliable and valid measurement instrument for assessing the self‐management knowledge and behaviour of older adults. This could help professionals provide tailored support to improve the well‐being and independence of older adults.

  October 07, 2016   doi: 10.1111/hex.12488   open full text
• What factors influence successful recruitment of siblings of individuals with first episode psychosis to e‐health interventions? A qualitative study.
  Jacqueline Sin, Claire Henderson, Debbie Spain, Catherine Gamble, Ian Norman.
  Health Expectations. October 06, 2016
  Background Recruitment to clinical research studies can prove complex. This is particularly true of mental health research, given factors such as confidentiality, capacity and consent, or when attempting to recruit family members as opposed to service users themselves. Aim This study investigated the challenges experienced and strategies employed in the recruitment of siblings of people with first episode psychosis using Early Intervention in Psychosis Services (EIPS) in England. Methods As part of a randomized controlled trial (RCT) of an e‐health intervention for siblings, we conducted a process evaluation study whereby semistructured interview was undertaken with clinical and research staff involved in recruitment of siblings. Data were analysed thematically. Results Twelve participants from six EIPS were interviewed. Data analysis revealed seven key themes: (i) limited comprehensive family data available; (ii) data governance and consent issues; (iii) organizational factors; (iv) convoluted recruitment methods; (v) concerns about service users' opinions; (vi) fluidity in siblings' needs and expectations; and (vii) strategies to enhance recruitment. Conclusions Recruitment challenges identified in this study concerned administrative, organizational, process and attitudinal issues. These are similar to other studies recruiting mental health service users as well as family members. Failure to recruit to target implies that studies are underpowered to detect potential statistically or clinically meaningful changes. Future studies should establish how best to enhance family inclusiveness in clinical practice and research.

  October 06, 2016   doi: 10.1111/hex.12508   open full text
• CJCheck Stage 1: development and testing of a checklist for reporting community juries – Delphi process and analysis of studies published in 1996–2015.
  Rae Thomas, Rebecca Sims, Chris Degeling, Jackie M. Street, Stacy M. Carter, Lucie Rychetnik, Jennifer A. Whitty, Andrew Wilson, Paul Ward, Paul Glasziou.
  Health Expectations. October 05, 2016
  Background Opportunities for community members to actively participate in policy development are increasing. Community/citizen's juries (CJs) are a deliberative democratic process aimed to illicit informed community perspectives on difficult topics. But how comprehensive these processes are reported in peer‐reviewed literature is unknown. Adequate reporting of methodology enables others to judge process quality, compare outcomes, facilitate critical reflection and potentially repeat a process. We aimed to identify important elements for reporting CJs, to develop an initial checklist and to review published health and health policy CJs to examine reporting standards. Design Using the literature and expertise from CJ researchers and policy advisors, a list of important CJ reporting items was suggested and further refined. We then reviewed published CJs within the health literature and used the checklist to assess the comprehensiveness of reporting. Results CJCheck was developed and examined reporting of CJ planning, juror information, procedures and scheduling. We screened 1711 studies and extracted data from 38. No studies fully reported the checklist items. The item most consistently reported was juror numbers (92%, 35/38), while least reported was the availability of expert presentations (5%, 2/38). Recruitment strategies were described in 66% of studies (25/38); however, the frequency and timing of deliberations was inadequately described (29%, 11/38). Conclusions Currently CJ publications in health and health policy literature are inadequately reported, hampering their use in policy making. We propose broadening the CJCheck by creating a reporting standards template in collaboration with international CJ researchers, policy advisors and consumer representatives to ensure standardized, systematic and transparent reporting.

  October 05, 2016   doi: 10.1111/hex.12493   open full text
• Content analysis of public opinion on sexual expression and dementia: Implications for nursing home policy development.
  Maggie L. Syme, Erin Yelland, Laci Cornelison, Judith L. Poey, Ryan Krajicek, Gayle Doll.
  Health Expectations. October 05, 2016
  Purpose We examined public opinion of sexual expression and dementia to inform nursing home policy and practice. Design and Methods A content analysis was conducted on public comments (N=1194) posted in response to a New York Times article about a highly publicized legal case involving a husband engaging in sexual acts with his wife who had dementia, living in a nursing home. Researchers utilized constant comparative analysis to code the comments; reliability analysis showed moderately strong agreement at the subcategory level. Data were also coded to indicate whether the commenter thought the couple should or should not have been allowed to be sexual. Results One primary theme was identified: conditions necessary for someone to be sexual. Six categories were identified within this theme, with the public commentary considering factors such as marital relationships, intimacy needs and several sexual consent‐related issues as key conditions necessary to be sexual in a nursing home setting. Overall, the majority of commenters were in support of sexual expression for an individual with dementia in the described situation. Discussion This study revealed sexual expression among individuals with dementia is a contentious issue with strong public opinions about how this should be managed in a nursing home setting. These opinions should be considered as policy related to sexual expression in nursing homes is developed.

  October 05, 2016   doi: 10.1111/hex.12509   open full text
• Decision making about Pap test use among Korean immigrant women: A qualitative study.
  Kyounghae Kim, Soohyun Kim, Joseph J. Gallo, Marie T. Nolan, Hae‐Ra Han.
  Health Expectations. September 30, 2016
  Background Understanding how individuals make decisions about Pap tests concerning their personal values helps health‐care providers offer tailored approaches to guide patients’ decision making. Yet research has largely ignored decision making about Pap tests among immigrant women who experience increased risk of cervical cancer. Objective To explore decision making about Pap tests among Korean immigrant women. Methods We conducted a qualitative descriptive study using 32 semi‐structured, in‐depth interviews with Korean immigrant women residing in a north‐eastern metropolitan area. Data were audio‐recorded, transcribed verbatim and analysed using inductive coding. Results Although most women with positive decisions made their own decisions, some women deferred to their providers, and others made decisions in collaboration with their providers and significant others. While women making positive decisions tended to consider both barriers to and facilitators of having Pap tests, women making negative decisions predominantly discussed the barriers to having Pap tests, such as modesty and differences between the South Korean and US health‐care systems. The women's reflections on their decisions differed regarding their Pap test decisions. Conclusions Women's desired roles in the decision‐making process and reflection on their decision outcome appeared to vary, although most participants with positive decisions made their own decisions and were satisfied with their decisions. Future research should conduct longitudinal, quantitative studies to test our findings regarding decision‐making processes and outcomes about Pap tests. Implications The findings should be incorporated into cervical cancer screening practices to fulfil the unmet needs of immigrant women in patient‐provider communication and to facilitate women's decision making about Pap tests.

  September 30, 2016   doi: 10.1111/hex.12507   open full text
• How best to use and evaluate Patient Information Leaflets given during a consultation: a systematic review of literature reviews.
  Mélanie Sustersic, Aurélie Gauchet, Alison Foote, Jean‐Luc Bosson.
  Health Expectations. September 26, 2016
  Background In the past, several authors have attempted to review randomized clinical trials (RCT) evaluating the impact of Patient Information Leaflets (PILs) used during a consultation and draw some general conclusions. However, this proved difficult because the clinical situations, size and quality of RCTs were too heterogeneous to pool relevant data. Objective To overcome this 30‐year stalemate, we performed a review of reviews and propose general recommendations and suggestions for improving the quality of PILs, how to use them and methods for evaluating them. Methodology We searched five databases for reviews, systematic reviews and meta‐analyses describing PILs. We drew general and condition‐linked conclusions concerning the impact of PILs. Checklists summarize criteria for quality PILs, and ways of using and evaluating them. Results Of 986 articles found, 24 reviews were pertinent; the five oldest considered the impact of PILs irrespective of the condition the patient consulted for; the 19 more recent ones mostly addressed precise clinical situations. Discussion Whatever the clinical situation, PILs improve patients' knowledge and satisfaction. For acute conditions, in the short‐term PILs also improve adherence to treatment. For chronic diseases, invasive procedures or screening situations, their impact on adherence varies depending on the context, how the PILs are given and the invasiveness of the intervention. Conclusion PILs are considered to be very useful, especially for acute conditions where the patient is the first to suffer from lack of information. We propose checklists for writing, designing, using and evaluating PILs in RCTs to enable comparisons between different studies.

  September 26, 2016   doi: 10.1111/hex.12487   open full text
• Keeping all options open: Parents’ approaches to advance care planning.
  Emma Beecham, Linda Oostendorp, Joanna Crocker, Paula Kelly, Andrew Dinsdale, June Hemsley, Jessica Russell, Louise Jones, Myra Bluebond‐Langner.
  Health Expectations. September 26, 2016
  Background Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life‐limiting condition (LLC). However, most families have little knowledge or experience of ACP. Objective To investigate how parents of children and young people with LLCs approach and experience ACP. Methods Open‐ended, semi‐structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made. Results Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so. Discussion This study highlights that parents’ approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents’ approaches to particular decisions rather than to drive to closure prematurely.

  September 26, 2016   doi: 10.1111/hex.12500   open full text
• Examining chronic care patient preferences for involvement in health‐care decision making: the case of Parkinson's disease patients in a patient‐centred clinic.
  Natalie Zizzo, Emily Bell, Anne‐Louise Lafontaine, Eric Racine.
  Health Expectations. September 14, 2016
  Background Patient‐centred care is a recommended model of care for Parkinson's disease (PD). It aims to provide care that is respectful and responsive to patient preferences, values and perspectives. Provision of patient‐centred care should entail considering how patients want to be involved in their care. Objective To understand the participation preferences of patients with PD from a patient‐centred care clinic in health‐care decision‐making processes. Design, setting and participants: Mixed‐methods study with early‐stage Parkinson's disease patients from a patient‐centred care clinic. Study involved a modified Autonomy Preference Index survey (N=65) and qualitative, semi‐structured in‐depth interviews, analysed using thematic qualitative content analysis (N=20, purposefully selected from survey participants). Interviews examined (i) the patient preferences for involvement in health‐care decision making; (ii) patient perspectives on the patient–physician relationship; and (iii) patient preferences for communication of information relevant to decision making. Results Preferences for participation in decision making varied between individuals and also within individuals depending on decision type, relational and contextual factors. Patients had high preferences for communication of information, but with acknowledged limits. The importance of communication in the patient–physician relationship was emphasized. Discussion Patient preferences for involvement in decision making are dynamic and support shared decision making. Relational autonomy corresponds to how patients envision their participation in decision making. Clinicians may need to assess patient preferences on an on‐going basis. Conclusion Our results highlight the complexities of decision‐making processes. Improved understanding of individual preferences could enhance respect for persons and make for patient‐centred care that is truly respectful of individual patients’ wants, needs and values.

  September 14, 2016   doi: 10.1111/hex.12497   open full text
• A digital advocate? Reactions of rural people who experience homelessness to the idea of recording clinical encounters.
  Stuart W. Grande, Mary Ganger Castaldo, Elizabeth Carpenter‐Song, Ida Griesemer, Glyn Elwyn.
  Health Expectations. September 07, 2016
  Background Are the benefits of recording clinical encounters shared across different groups, or do they vary based on social position? Studies show that educated patients record their clinical visits to enhance their experience, but very little is known about recording benefits among “hard‐to‐reach” populations. Objective To examine the reactions of homeless people to the idea of using a smartphone to record their own clinical encounter, either covertly or with permission from their physician. Method We conducted semi‐structured interviews with individuals at a temporary housing shelter in Northern New England. A thematic analysis identified themes that were iteratively refined into representative groups. Results Eighteen (18) interviews were conducted, 12 with women and six with men. Initial reactions to clinical recordings were positive (11 of 18). A majority (17 of 18) were willing to use recordings in future visits. A thematic analysis characterized data in two ways: (i) by providing reliable evidence for review, they functioned as an advocacy measure for patients; (ii) by promoting transparency and levelling social distance, this technology modified clinical relationships. Discussion Recordings permitted the sharing of data with others, providing tangible proof of behaviour and refuting misconceptions. Asking permission to record appeared to modify relationships and level perceived social distance with clinicians. Conclusions We found that while many rural, disadvantaged individuals felt marginalized by the wide social distance between themselves and their clinicians, recording technology may serve as an advocate by holding both patients and doctors accountable and by permitting the burden of clinical proof to be shared.

  September 07, 2016   doi: 10.1111/hex.12492   open full text
• Health information sources for different types of information used by Chinese patients with cancer and their family caregivers.
  Bo Xie, Zhaohui Su, Yihao Liu, Mo Wang, Ming Zhang.
  Health Expectations. September 07, 2016
  Context Little is known about the information sources of Chinese patients with cancer and their family caregivers, yet this knowledge is critical for providing patient‐centred care. Objective To assess and compare the information sources used by Chinese patients with cancer and their family caregivers. Design The validated Health Information Wants Questionnaire (HIWQ) was translated and administered in March 2014. Setting The oncology department of a general hospital in south‐west China. Participants A convenience sample of 198 individuals, including 79 patients with cancer (mean age=55.24, SD=13.80) and 119 family caregivers (mean age=46.83, SD=14.61). Main outcome measures Ratings on the HIWQ items assessing information sources for different types of information. Results The interaction between information source and group was significant (F3,576=6.32, P<.01). Caregivers obtained more information than patients from the Internet. Caregivers and patients did not differ in the amount of information they obtained from doctors/nurses, interpersonal contacts or mass media. The interaction between information type and information source was significant (F18,3456=6.38, P<.01). Participants obtained more information of all types from doctors/nurses than from the other three sources and obtained more information from interpersonal contacts than from mass media or the Internet. Conclusions The information sources of Chinese patients with cancer and their family caregivers were similar, with an important difference that caregivers obtained more online information than patients. These findings have important implications for patient care and education in China where the family typically plays a major role in the care and decision making.

  September 07, 2016   doi: 10.1111/hex.12498   open full text
• Awareness of and reactions to mammography controversy among immigrant women.
  Rebekah H. Nagler, Jennifer A. Lueck, Lauren S. Gray.
  Health Expectations. August 26, 2016
  Background There is substantial expert disagreement about the use of mammography to screen for breast cancer, and this disagreement routinely plays out in the media. Evidence suggests that some women are aware of the controversy over mammography, but less is known about whether immigrant and other underserved women have heard about it and, if so, how they react to it. Objective To explore immigrant women's awareness of and reactions to mammography controversy. Design Community‐engaged qualitative study: we conducted six focus groups with 53 women aged 35–55 from three immigrant communities (Somali, Latina and Hmong) in a major US metropolitan area. A grounded theory approach was used to identify themes; NVivo 10 was used to enhance analyses. Results Several themes emerged: (i) low awareness of mammography controversy across groups, despite self‐reported attention to health information; (ii) high intentions to be screened, even after being told about the controversy; (iii) few reported discussions of mammography's risks and benefits with clinicians; (iv) substantial interest in learning more about mammography and breast cancer, but some low self‐efficacy to obtain such information; and (v) questions about whether health recommendations matter and what qualifies as evidence. Conclusion Given on‐going expert disagreement about mammography screening, it is important for clinicians to help women understand mammography's risks and benefits so they can make an informed choice. This is particularly critical for immigrant and other underserved women, who may be less able to access, attend to, process, retain and act on health information (a phenomenon known as communication inequality).

  August 26, 2016   doi: 10.1111/hex.12494   open full text
• Factors influencing participation in colorectal cancer screening—a qualitative study in an ethnic and socio‐economically diverse inner city population.
  Nimarta Dharni, David Armstrong, Guy Chung‐Faye, Alison J. Wright.
  Health Expectations. August 22, 2016
  Background Ethnic and socio‐economic inequalities have been reported in the uptake of colorectal cancer (CRC) screening. This study aimed to explore the factors affecting CRC screening participation in an ethnically and socio‐economically diverse inner city population. Methods Semi‐structured interviews were undertaken with 50 people aged 55–74 years, recruited from GP practices in south‐east London. Participants were from Black African (n=13), Black Caribbean (n=15), White British (n=17), Black other (n=2) and White other (n=3) backgrounds. Participants' socio‐economic status (SES) was assessed using a combined measure of educational attainment, housing tenure and car ownership. Participants' SES varied although there were more participants from less deprived backgrounds than those from more deprived backgrounds. The interview topic guide was informed by the Theoretical Domains Framework. Interviews were recorded, transcribed and analysed using framework analysis. Findings Lack of awareness of CRC screening was a barrier for all participants. There were also some notable group differences by ethnicity and SES. Cancer fear was a barrier for White British participants of varying SES. Misunderstanding instructions for completing the guaiac faecal occult blood test (gFOBt) was a barrier for people of low SES regardless of ethnicity. For Black African and Black Caribbean participants, of any SES, religious faith and a perceived civic duty to participate in screening encouraged participation. Discussion and conclusions This is the first study to provide detailed information on the separate views of Black African and Black Caribbean participants about screening. Consideration of ethnicity and SES together also allowed us to identify pertinent barriers for particular groups that can be targeted to improve access to screening for those who wish to take part.

  August 22, 2016   doi: 10.1111/hex.12489   open full text
• Supporting public involvement in interview and other panels: a systematic review.
  Susan Baxter, Mark Clowes, Delia Muir, Wendy Baird, Andrea Broadway‐Parkinson, Carole Bennett.
  Health Expectations. August 17, 2016
  Background Members of the public are increasingly being invited to become members of a variety of different panels and boards. Objective This study aimed to systematically search the literature to identify studies relating to support or training provided to members of the public who are asked to be members of an interview panel. Search strategy A systematic search for published and unpublished studies was carried out from June to September 2015. The search methods included electronic database searching, reference list screening, citation searching and scrutinizing online sources. Inclusion criteria We included studies of any design including published and unpublished documents which outlined preparation or guidance relating to public participants who were members of interview panels or representatives on other types of panels or committees. Data synthesis Results were synthesised via narrative methods. Main results Thirty‐six documents were included in the review. Scrutiny of this literature highlighted ten areas which require consideration when including members of the public on interview panels: financial resources; clarity of role; role in the interview process; role in evaluation; training; orientation/induction; information needs; terminology; support; and other public representative needs such as timing, accessibility and support with information technology. Discussion and conclusions The results of the review emphasize a range of elements that need to be fully considered when planning the involvement of public participants on interview panels. It highlights potential issues relating to the degree of involvement of public representatives in evaluating/grading decisions and the need for preparation and on‐going support.

  August 17, 2016   doi: 10.1111/hex.12491   open full text
• How and why should we engage parents as co‐researchers in health research? A scoping review of current practices.
  Shuoqi Shen, Krissy A.R. Doyle‐Thomas, Lori Beesley, Amir Karmali, Laura Williams, Nadia Tanel, Amy C. McPherson.
  Health Expectations. August 12, 2016
  Background The importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature. Methods A scoping literature review was conducted using established methodology. Four research databases and one large grey literature database were searched, in addition to hand‐searching relevant journals. Articles meeting specific inclusion criteria were retrieved and data extracted. Common characteristics were identified and summarized. Results Ten articles were included in the review, assessed as having low‐to‐moderate quality. Parent co‐researchers were engaged in the planning, design, data collection, analysis and dissemination aspects of research. Structural enablers included reimbursement and childcare. Benefits of engaging parent co‐researchers included enhancing the relevance of research to the target population, maximizing research participation and parent empowerment. Challenges included resource usage, wide‐ranging experiences, lack of role clarity and power differences between parent co‐researchers and researchers. Evaluation of parent co‐researcher engagement was heterogeneous and lacked rigour. Conclusions A robust evidence base is currently lacking in how to effectively engage parent co‐researchers. However, the review offers some insights into specific components that may form the basis of future research to inform the development of best practice guidelines.

  August 12, 2016   doi: 10.1111/hex.12490   open full text
• Parents’ concerns about future pregnancy after stillbirth: a qualitative study.
  Sarah Meaney, Claire M. Everard, Stephen Gallagher, Keelin O'Donoghue.
  Health Expectations. August 01, 2016
  Objectives As stillbirth has a devastating impact, it is imperative to understand the importance of clinical and emotional care after stillbirth and how it influences subsequent pregnancies. The aim of the study was to gain insight into the consideration and planning of a subsequent pregnancy by parents in the weeks following stillbirth. Design A qualitative semi‐structured interview format was utilized. Interpretative phenomenological analysis was employed as the analytic strategy. Participants and setting The recruitment strategy focused on couples whereby the parents of ten stillborn babies were contacted; however, five men declined to participate in the study. The final sample of 15 parents were all Irish: ten of whom were female and five of whom were male. Results Findings revealed two superordinate themes relating to a subsequent pregnancy after stillbirth: aspirations for future pregnancy and expectations of future care. Parents disclosed how the prospect of a subsequent pregnancy was daunting with fears about the potential loss of another child. Despite these fears, parents’ aspirations differed in the days following stillbirth; mothers wished to plan a future pregnancy while fathers were reluctant to consider any pregnancies. Parents were unsure of what to expect in terms of the level of care that would be provided to them in a subsequent pregnancy. Additional appointments at the maternity hospital were considered crucial to provide reassurance during a subsequent pregnancy. Conclusions These findings underscore the far‐reaching and contrasting effects of stillbirth on parents. These complex needs highlight the importance of the multidisciplinary team approach.

  August 01, 2016   doi: 10.1111/hex.12480   open full text
• Associations between hospital characteristics and patient satisfaction in Germany.
  Rike Antje Kraska, Marcel Weigand, Max Geraedts.
  Health Expectations. July 22, 2016
  Background The patient perspective is increasingly recognized as a central pillar of quality in hospital care. International evidence suggests that an array of interacting factors may influence patient satisfaction with hospital care, whereas only a few studies have examined the impact of hospital characteristics. Objective To explore which hospital characteristics exert an influence on patient satisfaction with inpatient care. Design Cross‐sectional study using secondary data. Setting and participants A total of 999 hospitals in Germany with 300 200 patient surveys from 2013 formed the study population. Patient satisfaction was surveyed using the Patients’ Experience Questionnaire, and hospital characteristics were extracted from mandatory quality reports. Only hospitals with at least 75 surveys were included in the analysis. Main variables studied and main outcome measures Four dimensions of patient satisfaction (medical care, nursing care, organization and overall impression) were studied as the outcome measures. Region, profit orientation, size, staffing per bed and quality scores were considered possible influencing hospital characteristics. We performed risk‐adjusted multivariate analyses. Results All of the characteristics had a significant influence on the patient satisfaction dimensions (P<.05), and patients in East Germany, in small hospitals or in not‐for‐profit hospitals, were more satisfied. Additionally, more staffing per bed as well as a better process and outcome quality were associated with more satisfied patients. Conclusion Structural and quality characteristics of hospitals have a significant impact on patient satisfaction. This association confirms that patients are sensitive to important hospital quality measures and reinforces the consideration of patient satisfaction as an indicator of the quality of care.

  July 22, 2016   doi: 10.1111/hex.12485   open full text
• Multiple sclerosis patients need and want information on exercise promotion from healthcare providers: a qualitative study.
  Yvonne C. Learmonth, Brynn C. Adamson, Julia M. Balto, Chung‐yi Chiu, Isabel Molina‐Guzman, Marcia Finlayson, Barry J. Riskin, Robert W. Motl.
  Health Expectations. July 20, 2016
  Background There is growing recognition of the benefits and safety of exercise and its importance in the comprehensive care of persons with multiple sclerosis (MS), yet uptake is low. Objective We explored the needs and wants of patients with MS regarding exercise promotion through healthcare providers. Setting and participants Participants were adults with MS who had mild‐or‐moderate disability and a range of exercise levels. All participants lived in the Midwest of the United States. Methods Fifty semi‐structured interviews were conducted and analysed using thematic analysis. Two themes emerged, namely interactions between patients and healthcare providers and needs and wants of patients. Results Analysis of participant accounts illustrate that current exercise promotion by healthcare providers does not meet patient needs and wants. The identified needs and wants of persons with MS involved (i) information and knowledge on the benefits of exercise and exercise prescription, (ii) materials to allow home and community exercise and (iii) tools for initiating and maintaining exercise behaviour. Discussion and conclusion Patients with MS frequently interact with healthcare providers and are generally unsatisfied with exercise promotion during interactions. Healthcare providers can address the low uptake of exercise among persons with MS by acting upon the identified unmet needs involving materials, knowledge and behaviour change strategies for exercise.

  July 20, 2016   doi: 10.1111/hex.12482   open full text
• Understanding of a negative bowel screening result and potential impact on future symptom appraisal and help‐seeking behaviour: a focus group study.
  Karen N. Barnett, David Weller, Steve Smith, Sheina Orbell, Peter Vedsted, Robert J. C. Steele, Jane W. Melia, Sue M. Moss, Julietta Patnick, Christine Campbell.
  Health Expectations. July 14, 2016
  Background Colorectal cancer (CRC) screening using a faecal occult blood test (FOBt) has the potential to reduce cancer‐related mortality. Symptom vigilance remains crucial as a proportion of cancers will be diagnosed between screening rounds. A negative FOBt has the potential to influence how participants respond to future symptoms of CRC. Objective To explore (i) understanding of a negative FOBt and (ii) the potential impact of a negative FOBt upon future symptom appraisal and help‐seeking behaviour. Design Qualitative methodology utilizing focus groups with participants who received a negative FOBt within the National Bowel Cancer Screening Programme in Coventry and Lothian. Topics explored included: experience of screening participation, interpretation and understanding of a negative result, symptom awareness and attitudes towards help‐seeking. Results Four broad themes were identified: (i) emotional response to a negative FOBt, (ii) understanding the limitations of FOBt screening, (iii) symptom knowledge and interpretation and (iv) over‐reassurance from a negative FOBt. Participants were reassured by a negative FOBt, but there was variability in the extent to which the result was interpreted as an “all clear”. Some participants acknowledged the residual risk of cancer and the temporal characteristic of the result, while others were surprised that the result was not a guarantee that they did not have cancer. Discussion and conclusions Participants recognized that reassurance from a negative FOBt could lead to a short‐term delay in help‐seeking if symptoms developed. Screening programmes should seek to emphasize the importance of the temporal nature of FOBt results with key messages about symptom recognition and prompt help‐seeking behaviour.

  July 14, 2016   doi: 10.1111/hex.12484   open full text
• Attitudes towards lung cancer screening in socioeconomically deprived and heavy smoking communities: informing screening communication.
  Samantha L. Quaife, Laura A. V. Marlow, Andy McEwen, Samuel M. Janes, Jane Wardle.
  Health Expectations. July 11, 2016
  Background While discussion continues over the future implementation of lung cancer screening, low participation from higher risk groups could limit the effectiveness of any national screening programme. Objectives To compare smokers’ beliefs about lung cancer screening with those of former and never smokers within a low socioeconomic status (SES) sample, to explore the views of lower SES smokers and ex‐smokers in‐depth, and to provide insights into effective engagement strategies. Design, setting and participants Using proactive, community‐based recruitment methods, we surveyed 175 individuals from socioeconomically deprived communities with high smoking prevalence and subsequently interviewed 21 smokers and ex‐smokers. Participants were approached in community settings or responded to a mail‐out from their housing association. Results Interviewees were supportive of screening in principle, but many were doubtful about its ability to deliver long‐term survival benefit for their generation of “heavy smokers.” Lung cancer was perceived as an uncontrollable disease, and the survey data showed that fatalism, worry and perceived risk of lung cancer were particularly high among smokers compared with non‐smokers. Perceived blame and stigma around lung cancer as a self‐inflicted smokers’ disease were implicated by interviewees as important social deterrents of screening participation. The belief that lungs are not a treatable organ appeared to be a common lay explanation for poor survival and undermined the potential value of screening. Conclusions Attitudes towards screening among this high‐risk group are complex. Invitation strategies need to be carefully devised to achieve equitable participation in screening.

  July 11, 2016   doi: 10.1111/hex.12481   open full text
• The development of service user‐led recommendations for health and social care services on leaving hospital with memory loss or dementia – the SHARED study.
  Carole Mockford, Kate Seers, Matt Murray, Jan Oyebode, Rosemary Clarke, Sophie Staniszewska, Rashida Suleman, Sue Boex, Yvonne Diment, Richard Grant, Jim Leach, Uma Sharma.
  Health Expectations. July 08, 2016
  Background Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services. Objective To develop service user‐led recommendations enabling smooth transition for people living with memory loss from acute hospital to community. Design Lead and co‐researchers conducted semi‐structured interviews with 15 pairs of carers and patients with memory loss at discharge, 6 and 12 weeks post‐discharge and one semi‐structured interview with health and social care professionals and Admiral Nurses. Framework analysis was guided by co‐researchers. Two focus groups of study participants, facilitated by co‐researchers, met to shape and finalize recommendations. Setting and participants Recruitment took place in acute hospitals in two National Health Service (NHS) Trusts in England. Patients were aged 65 and over, with memory loss, an in‐patient for at least 1 week returning to the community, who had a carer consenting to be in the study. Results Poor delivery of services caused considerable stress to some study families living with memory loss. Three key recommendations included a need for a written, mutually agreed discharge plan, a named coordinator of services, and improved domiciliary care services. Discussion and conclusions Vulnerable patients with memory loss find coming out of hospital after an extended period a stressful experience. The SHARED study contributes to understanding the hospital discharge process through the eyes of the patient and carer living with memory loss and has the potential to contribute to more efficient use of resources and to improving health outcomes in communities.

  July 08, 2016   doi: 10.1111/hex.12477   open full text
• Whose voices? Patient and public involvement in clinical commissioning.
  Alison O'Shea, Mary Chambers, Annette Boaz.
  Health Expectations. June 29, 2016
  Aim This paper aims to explore patient and public representation in a NHS clinical commissioning group and how this is experienced by staff and lay members involved. Background Patient and public involvement is believed to foster greater public representativeness in the development and delivery of health care services. However, there is widespread debate about what representation is or what it should be. Questions arise about the different constructions of representation and the representativeness of patients and the public in decision‐making structures and processes. Design Ethnographic, two‐phase study involving twenty‐four observations across two types of clinical commissioning group meetings with patient and public involvement, fourteen follow‐up interviews with NHS staff and lay members, and a focus group with five lay members. Results Perceptions of what constitutes legitimate representativeness varied between respondents, ranging from representing an individual patient experience to reaching large numbers of people. Consistent with previous studies, there was a lack of clarity about the role of lay members in the work of the clinical commissioning group. Conclusions Unlike previous studies, it was lay members, not staff, who raised concerns about their representativeness and legitimacy. Although the clinical commissioning group provides resources to support patient and public involvement, there continues to be a lack of clarity about roles and scope for impact. Lay members are still some way from constituting a powerful voice at the table.

  June 29, 2016   doi: 10.1111/hex.12475   open full text
• Patient involvement in rheumatology outpatient service design and delivery: a case study.
  Savia de Souza, James Galloway, Carol Simpson, Radka Chura, Joanne Dobson, Nicola J. Gullick, Sophia Steer, Heidi Lempp.
  Health Expectations. June 27, 2016
  Background Patient involvement is increasingly recognized as important within the UK National Health Service to ensure that services delivered are relevant to users’ needs. Organizations are encouraged to work with service users to achieve excellence in care. Patient education can improve health outcomes and reduce health‐care costs. Mobile technologies could play a vital role in this. Aim Patient‐centred development of innovative strategies to improve the experience of rheumatology outpatients. Case study The Group Rheumatology Initiative Involving Patients (GRIIP) project was set up in 2013 as a joint venture between patients, clinicians, academics and management at a London hospital. The project saw (i) the formation of an independent patient group which provided suggestions for service improvement – outcomes included clearer signs in the outpatient waiting area, extended phlebotomy opening hours and better access to podiatry; (ii) a rolling patient educational evening programme initiated in 2014 with topics chosen by patient experts – feedback has been positive and attendance continues to grow; and (iii) a mobile application (app) co‐designed with patients launched in 2015 which provides relevant information for outpatient clinic attendees and data capture for clinicians – downloads have steadily increased as users adopt this new technology. Conclusion Patients can effectively contribute to service improvement provided they are supported, respected as equals, and the organization is willing to undergo a cultural change.

  June 27, 2016   doi: 10.1111/hex.12478   open full text
• Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK‐based qualitative interview study.
  Joanna C. Crocker, Anne‐Marie Boylan, Jennifer Bostock, Louise Locock.
  Health Expectations. June 24, 2016
  Background There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals. Objective To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed. Design Qualitative interview study. Setting and participants Thirty‐eight PPI contributors involved in health research across the UK. Results Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the ‘expert in lived experience’, the ‘creative outsider’, the ‘free challenger’, the ‘bridger’, the ‘motivator’ and the ‘passive presence’. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved. Conclusions While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors’ potential impact and their motivation to stay involved.

  June 24, 2016   doi: 10.1111/hex.12479   open full text
• Attitudes to participating in a birth cohort study, views from a multiethnic population: a qualitative study using focus groups.
  Neeru Garg, Thomas P. Round, Gavin Daker‐White, Peter Bower, Chris J. Griffiths.
  Health Expectations. June 17, 2016
  Background Recruitment to birth cohort studies is a challenge. Few studies have addressed the attitudes of women about taking part in birth cohort studies particularly those from ethnic minority groups. Objective To seek the views of people from diverse ethnic backgrounds about participation in a proposed birth cohort examining the impact of infections. Design and setting Eight focus groups of pregnant women and mothers of young children took place in GP surgeries and community centres in an ethnically diverse area of east London. Purposeful sampling and language support ensured representation of people from ethnic minority groups. Audio recordings were taken and transcripts were analysed using the Framework approach. Main outcome measures The views of participants about taking part in the proposed birth cohort study, in particular concerning incentives to taking part, disincentives and attitudes to consenting children. Results There was more convergence of opinion than divergence across groups. Altruism, perceived health gains of participating and financial rewards were motivating factors for most women. Worries about causing harm to their child, inconvenience, time pressure and blood sample taking as well as a perceived lack of health gains were disincentives to most. Mistrust of researchers did not appear to be a significant barrier. The study indicates that ethnicity and other demographic factors influence attitudes to participation. Conclusions To recruit better, birth cohort studies should incorporate financial and health gains as rewards for participation, promote the altruistic goals of research, give assurances regarding the safety of the participating children and sensitive data, avoid discomfort and maximize convenience. Ethnicity influences attitudes to participation in many ways, and researchers should explore these factors in their target population.

  June 17, 2016   doi: 10.1111/hex.12445   open full text
• Ordinary risks and accepted fictions: how contrasting and competing priorities work in risk assessment and mental health care planning.
  Michael Coffey, Rachel Cohen, Alison Faulkner, Ben Hannigan, Alan Simpson, Sally Barlow.
  Health Expectations. June 17, 2016
  Background Communication and information sharing are considered crucial to recovery‐focused mental health services. Effective mental health care planning and coordination includes assessment and management of risk and safety. Objective Using data from our cross‐national mixed‐method study of care planning and coordination, we examined what patients, family members and workers say about risk assessment and management and explored the contents of care plans. Design Thematic analysis of qualitative research interviews (n = 117) with patients, family members and workers, across four English and two Welsh National Health Service sites. Care plans were reviewed (n = 33) using a structured template. Findings Participants have contrasting priorities in relation to risk. Patients see benefit in discussions about risk, but cast the process as a worker priority that may lead to loss of liberty. Relationships with workers are key to family members and patients; however, worker claims of involving people in the care planning process do not extend to risk assessment and management procedures for fear of causing upset. Workers locate risk as coming from the person rather than social or environmental factors, are risk averse and appear to prioritize the procedural aspects of assessment. Conclusions Despite limitations, risk assessment is treated as legitimate work by professionals. Risk assessment practice operates as a type of fiction in which poor predictive ability and fear of consequences are accepted in the interests of normative certainty by all parties. As a consequence, risk adverse options are encouraged by workers and patients steered away from opportunities for ordinary risks thereby hindering the mobilization of their strengths and abilities.

  June 17, 2016   doi: 10.1111/hex.12474   open full text
• Public consultation changes guidance on the use of health‐care interventions. An observational study.
  Bruce Campbell, Jeffrey Tabiri‐Essuman, Helen Gallo, Vassilia Verdiel, Lakshmi Mandava, Mohamed Ansaf Azhar, John Powell.
  Health Expectations. June 17, 2016
  Objectives To investigate the responses to public consultation on draft guidance on interventional procedures (IP) for the UK National Health Services, and the changes made as a result of consultation. Design Retrospective review of responses received during public consultation for 183 pieces of draft guidance, and subsequent changes made. Setting The National Institute for Health and Care Excellence in the UK. Guidance produced December 2009–December 2014. Main outcome measures Numbers (%) of public consultations receiving responses, and resulting changes made to draft guidance. Results Responses were received during 159 (86.9%) periods of public consultation, from a total of 853 people or organizations (median number per consultation 3; range 0–82; interquartile range 1–5). Changes were made to draft guidance following 136 (74.3%) consultations. These changes were to the category (2.7%) or wording (8.7%) of the main recommendation; to other recommendations (about consent, patient selection, training and future research) (31.1%); and to other sections of guidance (description of the procedure and of the evidence on its efficacy and safety) (70.5%). Additional published evidence was proffered for 22.4%. Health‐care professionals or their specialist societies were the most frequent responders to consultation (68.8%), patients or patient organizations accounted for 22.4% and medical device companies accounted for 8.8%. Conclusions This study shows substantial engagement with public consultation and frequent changes made to draft guidance as a result. These findings are likely to be relevant to other areas of health‐care and national policymaking that seek to be responsive to their stakeholders.

  June 17, 2016   doi: 10.1111/hex.12476   open full text
• Necessary but not sufficient? Engaging young people in the development of an avatar‐based online intervention designed to provide psychosocial support to young people affected by their own or a family member's cancer diagnosis.
  Ceri Phelps, Masoumeh Minou, Andrew Baker, Carol Hughes, Helen French, Wayne Hawkins, Andrew Leeuwenberg, Rebecca Crabtree, Paul B. Hutchings.
  Health Expectations. June 12, 2016
  Objective This study discusses the challenges and successes of engaging young people in a project aimed at developing an online counselling intervention for young people affected by cancer. Context For younger people with a diagnosis of cancer or who are caring for someone with cancer, the psychosocial consequences can create significant challenges for their social and educational development. Whilst young people have been shown to be reluctant to make use of traditional face‐to‐face counselling, research is beginning to suggest that effective therapeutic relationships can be formed with young people online. Design The first phase of the study involved working with a ‘Young Persons’ Panel’ of healthy school pupils and university students to develop and pilot an online counselling intervention and study materials in preparation for a pilot evaluation of the intervention. Intervention An avatar‐based virtual reality counselling world was created where young people can create their own avatar and receive counselling over the Internet from a qualified counsellor via an avatar in a virtual reality world. Findings The process of engaging young people in the C:EVOLVE project enabled a unique intervention to be developed and demonstrated positive developmental opportunities. However, despite the rigorous approach to the development of the intervention, initial attempts within the pilot evaluation phase of the study showed difficulties recruiting to the study, and this phase of the study has currently ceased whilst further exploratory work takes place. Conclusion This study has demonstrated the complexities of intervention development and evaluation research targeted at young people and the challenges created when attempting to bring clinical practice and research evaluation together.

  June 12, 2016   doi: 10.1111/hex.12473   open full text
• Attitudes towards poverty, organizations, ethics and morals: Israeli social workers’ shared decision making.
  Lia Levin, Talia Schwartz‐Tayri.
  Health Expectations. June 07, 2016
  Objective Partnerships between service users and social workers are complex in nature and can be driven by both personal and contextual circumstances. This study sought to explore the relationship between social workers’ involvement in shared decision making with service users, their attitudes towards service users in poverty, moral standards and health and social care organizations’ policies towards shared decision making. Methods Based on the responses of 225 licensed social workers from health and social care agencies in the public, private and third sectors in Israel, path analysis was used to test a hypothesized model. Results Structural attributions for poverty contributed to attitudes towards people who live in poverty, which led to shared decision making. Also, organizational support in shared decision making, and professional moral identity, contributed to ethical behaviour which led to shared decision making. Conclusion The results of this analysis revealed that shared decision making may be a scion of branched roots planted in the relationship between ethics, organizations and Stigma.

  June 07, 2016   doi: 10.1111/hex.12472   open full text
• Stakeholders in support systems for self‐care for chronic illness: the gap between expectations and reality regarding their identity, roles and relationships.
  María J. Pumar‐Méndez, Agurtzane Mujika, Elena Regaira, Ivaylo Vassilev, Mari Carmen Portillo, Christina Foss, Elka Todorova, Poli Roukova, Ingrid A. Ruud Knutsen, Manuel Serrano, Christos Lionis, Michel Wensing, Anne Rogers.
  Health Expectations. May 27, 2016
  Background and objective The spread of self‐care holds the promise of containing chronic illness burden. Falling within the framework of a FP7 collaborative research project, this paper reports the views of key informants from six countries regarding who the main stakeholders are at different levels in the support system for self‐care for patients with chronic illness (SSSC) and how they accomplish their role and collaborate. Methods 90 Interviews with purposefully selected key informants from Bulgaria, Greece, the Netherlands, Norway, Spain and United Kingdom were conducted. Interviews involved government and local authorities, politicians, academics, health professionals and private sector representatives. Interviewers followed an expert opinion‐based guide. Analysis involved a cross‐country examination with thematic analysis and framework method techniques. Results Key informants described the ideal SSSC as inclusive, interdependent and patient‐centred. The following main stakeholders in SSSC were identified: patients, governments, health‐care professionals, associations, private companies and the media. In the current SSSCs, collaboration among stakeholders within and across different levels was said to be lacking. Patients were seen as playing a passive subordinate role based on the following: their own attitudes; the paternalistic and medicalized attitudes of the health‐care professionals; their misrepresentation by patient associations; and their exposure to the damaging influences of media and industries. Conclusions Making SSSC patient‐centred constitutes the greatest challenge for European authorities. Strategies must be revised for promoting patient participation. They should undergo changes so as to promote industry and media social responsibility and patient association advocacy capacity.

  May 27, 2016   doi: 10.1111/hex.12471   open full text
• Validation of a new measure of availability and accommodation of health care that is valid for rural and urban contexts.
  Jeannie L. Haggerty, Jean‐Frédéric Levesque.
  Health Expectations. May 18, 2016
  Context Patients are the most valid source for evaluating the accessibility of services, but a previous study observed differential psychometric performance of instruments in rural and urban respondents. Objective To validate a measure of organizational accessibility free of differential rural–urban performance that predicts consequences of difficult access for patient‐initiated care. Design Sequential qualitative–quantitative study. Qualitative findings used to adapt or develop evaluative and reporting items. Quantitative validation study. Setting Primary data by telephone from 750 urban, rural and remote respondents in Quebec, Canada; follow‐up mailed questionnaire to a subset of 316. Main measures and analyses Items were developed for barriers along the care trajectory. We used common factor and confirmatory factor analysis to identify constructs and compare models. We used item response theory analysis to test for differential rural–urban performance; examine individual item performance; adjust response options; and exclude redundant or non‐discriminatory items. We used logistic regression to examine predictive validity of the subscale on access difficulty (outcome). Results Initial factor resolution suggested geographic and organizational dimensions, plus consequences of access difficulty. After second administration, organizational accommodation and geographic indicators were integrated into a 6‐item subscale of Effective Availability and Accommodation, which demonstrates good variability and internal consistency (α = 0.84) and no differential functioning by geographic area. Each unit increase predicts decreased likelihood of consequences of access difficulties (unmet need and problem aggravation). Conclusion The new subscale is a practical, valid and reliable measure for patients to evaluate first‐contact health services accessibility, yielding valid comparisons between urban and rural contexts.

  May 18, 2016   doi: 10.1111/hex.12461   open full text
• Elaboration of the Gothenburg model of person‐centred care.
  Nicky Britten, Lucy Moore, Doris Lydahl, Oncel Naldemirci, Mark Elam, Axel Wolf.
  Health Expectations. May 18, 2016
  Background Person‐centred care (PCC) is increasingly advocated as a new way of delivering health care, but there is little evidence that it is widely practised. The University of Gothenburg Centre for Person‐Centred Care (GPCC) was set up in 2010 to develop and implement person‐centred care in clinical practice on the basis of three routines. These routines are based on eliciting the patient's narrative to initiate a partnership; working the partnership to achieve commonly agreed goals; and using documentation to safeguard the partnership and record the person's narrative and shared goals. Objective In this paper, we aimed to explore professionals' understanding of PCC routines as they implement the GPCC model in a range of different settings. Methods We conducted a qualitative study and interviewed 18 clinician‐researchers from five health‐care professions who were working in seven diverse GPCC projects. Results Interviewees’ accounts of PCC emphasized the ways in which persons are seen as different from patients; the variable emphasis placed on the person's goals; and the role of the person's own resources in building partnerships. Conclusion This study illustrates what is needed for health‐care professionals to implement PCC in everyday practice: the recognition of the person is as important as the specific practical routines. Interviewees described the need to change the clinical mindset and to develop the ways of integrating people's narratives with clinical practice.

  May 18, 2016   doi: 10.1111/hex.12468   open full text
• Process and impact of patient involvement in a systematic review of shared decision making in primary care consultations.
  Catherine Hyde, Kate M. Dunn, Adele Higginbottom, Carolyn A. Chew‐Graham.
  Health Expectations. May 12, 2016
  Background Patient and public involvement and engagement (PPIE) in systematic reviews remains uncommon, despite the policy imperative for patient involvement in research. The aim of this study was to investigate the process and impact of collaborating with members of a patient Research User Group (RUG) on a systematic review about shared decision making around prescribing analgesia in primary care consultations. Methods Five members of an established patient RUG collaborated with researchers undertaking a systematic review with narrative synthesis, through workshops held at three time‐points. These addressed the following: designing the protocol, interpreting the results and planning dissemination. Support from a RUG coordinator and user support worker facilitated collaboration throughout the review process. Researchers reflected on how PPIE modified the review at each time‐point. Results RUG members identified factors important in shared decision making around analgesic prescribing additional to those initially proposed by the research team. Search terms and specific outcomes of interest were amended to reflect these additional factors. Thirty of the 39 patient‐identified factors were absent in the published literature. The categories of factors identified were used as a framework for the narrative synthesis and for reporting results. RUG members prioritized options for disseminating the results. Conclusion PPIE collaboration throughout the systematic review impacted on the scope of the review, highlighting gaps in the literature that were important to patients. Impact on interpretation and dissemination of findings ensured the review directly reflected patient priorities. Challenges and strategies to facilitate PPIE involvement in systematic reviews and suggestions for future researchers are highlighted.

  May 12, 2016   doi: 10.1111/hex.12458   open full text
• Drug breakthrough offers hope to arthritis sufferers: qualitative analysis of medical research in UK newspapers.
  Helen Hanson, Nicola O'Brien, Paul Whybrow, John D Isaacs, Tim Rapley.
  Health Expectations. May 04, 2016
  Background Newspaper stories can impact behaviours, particularly in relation to research participation. It is therefore important to understand the narratives presented and ways in which these are received. Some work to date assumes journalism transmits existing medical knowledge to a passive audience. This study aimed to explore how newspaper articles present stories about medical research and how people interpret and use them. Design Qualitative research methods were employed to analyse two data sets: newspaper articles relating to ‘rheumatoid arthritis’ and ‘research’ from UK local and national news sources; and existing transcripts of interviews with patients with rheumatoid arthritis and their carers. Results Newspapers present a positive account of medical research, through a simple narrative with three essential components: an ‘innovation’ offers ‘hope’ in the context of ‘burden’. Patients frequently feature as passive subjects without attributed opinions. Few articles include patients’ experiences of research involvement. Patients with rheumatoid arthritis and their carers read articles about medical research critically, often with cynicism and drawing on other sources for interpretation. Conclusions An understanding of the simple, positive narrative of medical research found in newspaper articles may enable researchers to gain mass media exposure for their work and challenge this typical style of reporting. The critical and cynical ways patients and carers read stories about medical research suggest that concerns about newspaper articles misinforming the public may be overstated, but any effect on research engagement is unknown. Newspaper articles rarely present patients’ views or their experiences of research, and this can be conceptualized as ‘depersonalization bias’.

  May 04, 2016   doi: 10.1111/hex.12460   open full text
• Communicating with parents of obese children: which channels are most effective?
  Melanie Randle, Anthony D. Okely, Sara Dolnicar.
  Health Expectations. April 28, 2016
  Background One of the strategies proven most successful in curbing rising rates of childhood obesity involves targeting parents as agents of change. Prior studies have focused on what messages to communicate, but few have investigated how they should be communicated. Objective To identify the channels most effective for communicating with parents of overweight and obese children and understand whether their use of parenting information sources differs from others in the community. Design/setting This study utilizes data from the Longitudinal Study of Australian Children (LSAC). Families were included if weight and height information was available for parents and children at three data collection points: Waves 1, 2 and 4 (collected 2004, 2006 and 2010, respectively, n = 5107). Analysis A priori and a posteriori segmentation methods identified groups of parents that were similar in the sources used to obtain information about parenting, and examined whether some segments were more likely to have obese children. Results Four segments were identified that differed in their information source use: the ‘personal networks’, ‘books’, ‘official sources’ and ‘mixed approach’ segments. The ‘official sources’ and ‘mixed approach’ segments were most likely to have obese children, and they used doctors, government/community organizations and friends to obtain information on parenting. These segments were also less educated and had lower employment. Conclusions Messages are most likely to reach families with obese children if communicated through doctors, government publications and community organizations. Further, messages targeting social groupings of parents will leverage the power of advice from friends, which is another valuable information source for this group.

  April 28, 2016   doi: 10.1111/hex.12463   open full text
• Defining ‘quality’ from the patient's perspective: findings from focus groups with Medicaid beneficiaries and implications for public reporting.
  Ryan P. Theis, Jevetta C. Stanford, J. Robyn Goodman, Lisa L. Duke, Elizabeth A. Shenkman.
  Health Expectations. April 28, 2016
  Background With an increased emphasis on patient‐centred outcomes and research, investigators seek to understand aspects of health care that are most important to patients. Such information is essential for developing report cards that present health‐care quality information for consumers, which many states are adopting as a strategy to promote consumer choice. Objective This study examined the processes that women in Medicaid follow for selecting health plans and explored their definitions of ‘good’ and ‘poor’ quality health care. Design We conducted focus groups with Medicaid beneficiaries in four Texas communities, using quota sampling to ensure representation of different racial/ethnic, eligibility and geographic groups. Results We conducted 22 focus groups with 102 participants between October 2012 and January 2013. In a free‐list exercise, ‘doctors’ represented the most important aspect of health care to participants, followed by cost, attention, coverage and respect. Discussions of health‐care quality revealed an even mix of structural factors (e.g. timeliness) and interpersonal factors (e.g. communication), although few differences were observed by beneficiary characteristics. Participants linked themes in their overall framing of ‘quality’ – revealing processes of care that affect health outcomes (e.g. discontinuity of care resulting from poor communication with providers) and which were often mediated by advocate providers who assisted patients experiencing barriers to services. Discussion and conclusions Findings support other studies that highlight the importance of the patient–provider relationship. Patient‐centred definitions of health‐care quality can complement predominant provider‐centred conceptual frameworks and better inform initiatives for public reporting of quality measures in these populations.

  April 28, 2016   doi: 10.1111/hex.12466   open full text
• Exploring the relationship between stigma and help‐seeking for mental illness in African‐descended faith communities in the UK.
  Nadia Mantovani, Micol Pizzolati, Dawn Edge.
  Health Expectations. April 28, 2016
  Background Stigma related to mental illness affects all ethnic groups, contributing to the production and maintenance of mental illness and restricting access to care and support. However, stigma is especially prevalent in minority communities, thus potentially increasing ethnically based disparities. Little is known of the links between stigma and help‐seeking for mental illness in African‐descended populations in the UK. Objective and study design Building on the evidence that faith‐based organizations (FBOs) can aid the development of effective public health strategies, this qualitative study used semi‐structured interviews with faith groups to explore the complex ways in which stigma influences help‐seeking for mental illness in African‐descended communities. A thematic approach to data analysis was applied to the entire data set. Setting and participants Twenty‐six men and women who had varying levels of involvement with Christian FBOs in south London were interviewed (e.g. six faith leaders, thirteen ‘active members’ and seven ‘regular attendees’). Results Key factors influencing help‐seeking behaviour were as follows: beliefs about the causes of mental illness; ‘silencing’ of mental illness resulting from heightened levels of ideological stigma; and stigma (re)production and maintenance at community level. Individuals with a diagnosis of mental illness were likely to experience a triple jeopardy in terms of stigma. Discussion and conclusion ‘One‐size‐fits‐all’ approaches cannot effectively meet the needs of diverse populations. To ensure that services are more congruent with their needs, health and care organizations should enable service users, families and community members to become active creators of interventions to remove barriers to help‐seeking for mental illness.

  April 28, 2016   doi: 10.1111/hex.12464   open full text
• Agreeing the content of a patient‐reported outcome measure for primary care: a Delphi consensus study.
  Mairead Murphy, Sandra Hollinghurst, Chris Salisbury.
  Health Expectations. April 28, 2016
  Background As the first contact for any health‐related need, primary care clinicians often address multiple patient problems, with a range of possible outcomes. There is currently no patient‐reported outcome measure (PROM) which covers this range of outcomes. Therefore, many research studies into primary care services use PROMs that do not capture the full impact of these services. Objective The study aim was to identify outcomes sought by primary care patients which clinicians can influence, thus providing the basis for a new primary care PROM. Methods We used a Delphi process starting with an outcomes list inductively derived in a prior qualitative study. Thirty‐five experts were recruited into patient, clinician and academic panels. Participants rated each outcome on whether it was (i) relevant to health, (ii) influenced by primary care and (iii) detectable by patients. In each round, outcomes which passed/failed preset levels of agreement were accepted/rejected. Remaining outcomes continued to the next round. Results The process resulted in a set of outcomes occupying the domains of health status, health empowerment (internal and external), and health perceptions. Twenty‐six of 36 outcomes were accepted for inclusion in a PROM. Primary care having insufficient influence was the main reason for exclusion. Conclusions To our knowledge, this is the first time PROM outcomes have been agreed through criteria which explicitly exclude outcomes less relevant to health, uninfluenced by primary care or undetected by patients. The PROM in development covers a unique set of outcomes and offers an opportunity for enhanced research into primary care.

  April 28, 2016   doi: 10.1111/hex.12462   open full text
• Patients’ use and views of real‐time feedback technology in general practice.
  Christine Wright, Antoinette Davey, Natasha Elmore, Mary Carter, Luke Mounce, Ed Wilson, Jenni Burt, Martin Roland, John Campbell.
  Health Expectations. April 28, 2016
  Background There is growing interest in real‐time feedback (RTF), which involves collecting and summarizing information about patient experience at the point of care with the aim of informing service improvement. Objective To investigate the feasibility and acceptability of RTF in UK general practice. Design Exploratory randomized trial. Setting/Participants Ten general practices in south‐west England and Cambridgeshire. All patients attending surgeries were eligible to provide RTF. Intervention Touch screens were installed in waiting areas for 12 weeks with practice staff responsible for encouraging patients to provide RTF. All practices received fortnightly feedback summaries. Four teams attended a facilitated reflection session. Outcomes RTF ‘response rates’ among consulting patients were estimated, and the representativeness of touch screen users were assessed. The frequency of staff–patient interactions about RTF (direct observation) and patient views of RTF (exit survey) were summarized. Associated costs were collated. Results About 2.5% consulting patients provided RTF (range 0.7–8.0% across practices), representing a mean of 194 responses per practice. Patients aged above 65 were under‐represented among touch screen users. Receptionists rarely encouraged RTF but, when this did occur, 60% patients participated. Patients were largely positive about RTF but identified some barriers. Costs per practice for the twelve‐week period ranged from £1125 (unfacilitated team‐level feedback) to £1887 (facilitated team ± practitioner‐level feedback). The main cost was the provision of touch screens. Conclusions Response rates for RTF were lower than those of other survey modes, although the numbers of patients providing feedback to each practice were comparable to those achieved in the English national GP patient survey. More patients might engage with RTF if the opportunity were consistently highlighted to them.

  April 28, 2016   doi: 10.1111/hex.12469   open full text
• Doctors’ engagements with patient experience surveys in primary and secondary care: a qualitative study.
  Conor Farrington, Jenni Burt, Olga Boiko, John Campbell, Martin Roland.
  Health Expectations. April 28, 2016
  Background Patient experience surveys are increasingly important in the measurement of, and attempts to improve, health‐care quality. To date, little research has focused upon doctors’ attitudes to surveys which give them personalized feedback. Aim This paper explores doctors’ perceptions of patient experience surveys in primary and secondary care settings in order to deepen understandings of how doctors view the plausibility of such surveys. Design, setting and participants We conducted a qualitative study with doctors in two regions of England, involving in‐depth semi‐structured interviews with doctors working in primary care (n = 21) and secondary care (n = 20) settings. The doctors in both settings had recently received individualized feedback from patient experience surveys. Findings Doctors in both settings express strong personal commitments to incorporating patient feedback in quality improvement efforts. However, they also concurrently express strong negative views about the credibility of survey findings and patients’ motivations and competence in providing feedback. Thus, individual doctors demonstrate contradictory views regarding the plausibility of patient surveys, leading to complex, varied and on balance negative engagements with patient feedback. Discussion Doctors’ contradictory views towards patient experience surveys are likely to limit the impact of such surveys in quality improvement initiatives in primary and secondary care. We highlight the need for ‘sensegiving’ initiatives (i.e. attempts to influence perceptions by communicating particular ideas, narratives and visions) to engage with doctors regarding the plausibility of patient experience surveys. Conclusion This study highlights the importance of engaging with doctors’ views about patient experience surveys when developing quality improvement initiatives.

  April 28, 2016   doi: 10.1111/hex.12465   open full text
• Framework for enhancing clinical practice guidelines through continuous patient engagement.
  Melissa J. Armstrong, Juan‐David Rueda, Gary S. Gronseth, C. Daniel Mullins.
  Health Expectations. April 26, 2016
  Background Patient engagement in clinical practice guideline (CPG) development is recommended by multiple institutions and instruments measuring guideline quality. Approaches to engaging patients, however, vary between oversight organizations, quality tools and guideline developers. Objective We propose a ten‐step framework outlining steps and options for patient engagement in guideline development with the goal of highlighting steps for patient engagement and methods by which this can be achieved. Discussion This framework provides a model for continuous patient engagement in CPGs by outlining ten steps of guideline development occurring at the levels of the developer/committee and the individual guideline project. At the developer level, patients can assist in topic nomination (step 1), topic prioritization (step 2) and guideline development group selection (step 3). Within specific guideline projects, patients’ opinions may be incorporated when framing the question (step 4), creating an analytic framework and research plan (step 5), conducting the systematic review and conclusion formation (step 6), development of recommendations (step 7) and dissemination and implementation (step 8). At the end of process, patients can again be engaged at the developer level by helping determine when guidelines need updating (step 9) and evaluating the developer's approach to patient engagement (step 10). Conclusions Patient engagement at each CPG development step has different purposes, mechanisms, advantages and disadvantages, and implications for resource utilization. This framework can serve as a resource for guideline developers desiring to increase patient engagement and reference for researchers investigating engagement methodology at different steps of the CPG lifecycle.

  April 26, 2016   doi: 10.1111/hex.12467   open full text
• Patient involvement in the development of a handbook for moderate rheumatoid arthritis.
  Louise Prothero, Sofia Georgopoulou, Savia de Souza, Ailsa Bosworth, Lindsay Bearne, Heidi Lempp.
  Health Expectations. April 18, 2016
  Background Self‐management is a key recommendation for people with rheumatoid arthritis (RA). Educational materials may support self‐management, and increasingly patients are becoming involved with the development of these materials. The TITRATE trial compares the effectiveness of intensive management to standard care in patients with moderate RA across England. As part of the intensive management intervention, participants are given a handbook. Aim and objectives The aim of this study was to develop a handbook to support the intensive management. The objectives were to: (i) involve patients in the identification of relevant information for inclusion in the TITRATE handbook; (ii) ensure the content of the handbook is acceptable and accessible. Design We held an audio‐taped workshop with RA patients. The transcript of the workshop was analysed using thematic content analysis. Results Five main themes were identified as follows: ‘rheumatoid arthritis treatment, perceptions of rheumatoid arthritis, the importance of individualized goals, benefits of self‐management and the patient handbook’. Feedback from the workshop was incorporated into the handbook, and patients’ anonymous testimonies were added. Conclusion This study demonstrates that patient contribution to the development of educational material to support intensive management of RA is both feasible and valuable. A qualitative evaluation of the use and impact of the handbook with patients and practitioners is planned on completion of the TITRATE trial.

  April 18, 2016   doi: 10.1111/hex.12457   open full text
• We need to talk about purpose: a critical interpretive synthesis of health and social care professionals’ approaches to self‐management support for people with long‐term conditions.
  Heather May Morgan, Vikki A. Entwistle, Alan Cribb, Simon Christmas, John Owens, Zoë C. Skea, Ian S. Watt.
  Health Expectations. April 14, 2016
  Background Health policies internationally advocate ‘support for self‐management’, but it is not clear how the promise of the concept can be fulfilled. Objective To synthesize research into professional practitioners’ perspectives, practices and experiences to help inform a reconceptualization of support for self‐management. Design Critical interpretive synthesis using systematic searches of literature published 2000–2014. Findings We summarized key insights from 164 relevant papers in an annotated bibliography. The literature illustrates striking variations in approaches to support for self‐management and interpretations of associated concepts. We focused particularly on the somewhat neglected question of the purpose of support. We suggest that this can illuminate and explain important differences between narrower and broader approaches. Narrower approaches support people to manage their condition(s) well in terms of disease control. This purpose can underpin more hierarchical practitioner–patient communication and more limited views of patient empowerment. It is often associated with experiences of failure and frustration. Broader approaches support people to manage well with their condition(s). They can keep work on disease control in perspective as attention focuses on what matters to people and how they can be supported to shape their own lives. Broader approaches are currently less evident in practice. Discussion and conclusion Broader approaches seem necessary to fulfil the promise of support for self‐management, especially for patient empowerment. A commitment to enable people to live well with long‐term conditions could provide a coherent basis for the forms and outcomes of support that policies aspire to. The implications of such a commitment need further attention.

  April 14, 2016   doi: 10.1111/hex.12453   open full text
• Involving self‐help groups in health‐care institutions: the patients’ contribution to and their view of ‘self‐help friendliness’ as an approach to implement quality criteria of sustainable co‐operation.
  Stefan Nickel, Alf Trojan, Christopher Kofahl.
  Health Expectations. March 28, 2016
  Background The importance of patient participation and involvement is now widely acknowledged; in the past, few systematic health‐care institution policies existed to establish sustainable co‐operation. In 2004, in Germany, the initiative ‘Self‐Help Friendliness (SHF) and Patient‐Centeredness in Health Care’ was launched to establish and implement quality criteria related to collaboration with patient groups. Objectives The objective of this study was to describe (i) how patients were involved in the development of SHF by summarizing a number of studies and (ii) a new survey on the importance and feasibility of SHF. Setting and participants In a series of participative studies, SHF was shaped, tested and implemented in 40 health‐care institutions in Germany. Representatives from 157 self‐help groups (SHGs), 50 self‐help organizations and 17 self‐help clearing houses were actively involved. The second objective was reached through a survey of 74 of the 115 member associations of the biggest self‐help umbrella organization at federal level (response rate: 64 %). Results Patient involvement included the following: identification of the needs and wishes of SHGs regarding co‐operation, their involvement in the definition of quality criteria of co‐operation, having a crucial role during the implementation of SHF and accrediting health‐care institutions as self‐help friendly. The ten criteria in total were positively valued and perceived as moderately practicable. Conclusions Through the intensive involvement of self‐help representatives, it was feasible to develop SHF as a systematic approach to closer collaboration of professionals and SHGs. Some challenges have to be taken into account involving patients and the limitations of our empirical study.

  March 28, 2016   doi: 10.1111/hex.12455   open full text
• End‐of‐life care decisions for haemodialysis patients – ‘We only tend to have that discussion with them when they start deteriorating’.
  Sophia Lazenby, Adrian Edwards, Raymond Samuriwo, Stephen Riley, Mary Ann Murray, Andrew Carson‐Stevens.
  Health Expectations. March 10, 2016
  Background Haemodialysis patients receive very little involvement in their end‐of‐life care decisions. Issues relating to death and dying are commonly avoided until late in their illness. This study aimed to explore the experiences and perceptions of doctors and nurses in nephrology for involving haemodialysis patients in end‐of‐life care decisions. Methods A semi‐structured qualitative interview study with 15 doctors and five nurses and thematic analysis of their accounts was conducted. The setting was a large teaching hospital in Wales, UK. Results Prognosis is not routinely discussed with patients, in part due to a difficulty in estimation and the belief that patients do not want or need this information. Advance care planning is rarely carried out, and end‐of‐life care discussions are seldom initiated prior to patient deterioration. There is variability in end‐of‐life practices amongst nephrologists; some patients are felt to be withdrawn from dialysis too late. Furthermore, the possibility and implications of withdrawal are not commonly discussed with well patients. Critical barriers hindering better end‐of‐life care involvement for these patients are outlined. Conclusions The study provides insights into the complexity of end‐of‐life conversations and the barriers to achieving better end‐of‐life communication practices. The results identify opportunities for improving the lives and deaths of haemodialysis patients.

  March 10, 2016   doi: 10.1111/hex.12454   open full text
• Listening to the consumer voice: developing multilingual cancer information resources for people affected by liver cancer.
  Monica C. Robotin, Mamta Porwal, Max Hopwood, Debbie Nguyen, Minglo Sze, Carla Treloar, Jacob George.
  Health Expectations. February 29, 2016
  Background In Australia, liver cancer incidence is rising, particularly among people born in hepatitis B‐endemic countries. We sought to build an understanding of the information needs of people affected by liver cancer, to inform the design of in‐language consumer information resources. Methods We searched the World Wide Web for available in‐language consumer information and conducted a literature search on consumers’ information needs and their preferred means of accessing it. Qualitative data collection involved bilingual researchers conducting focus group discussions (26 participants) and in‐depth interviews (22 participants) with people affected by liver cancer in English, Vietnamese, Cantonese and Mandarin. Sessions were audio‐recorded, transcribed, translated and thematically analysed. The key themes and salient findings informed the development of in‐language multimedia information resources. Results Many consumer resources did not cater for people with low literacy levels. The participants wanted more information on cancer diagnostic and treatment options, nutrition and Chinese Medicine and experienced communication challenges speaking to health professionals. While Vietnamese speakers relied entirely on information provided by their doctors, other participants actively searched for additional treatment information and commonly used the Internet to source it. We developed multilingual, multimedia consumer information resources addressing identified consumer information needs through an iterative process, in collaboration with our multilingual consumer panel. These resources are available in four languages, as separate modules accessible online and in DVD format. Conclusion This process enabled the development of user‐friendly patient resources, which complement health‐care provider information and supports informed patient decision making.

  February 29, 2016   doi: 10.1111/hex.12449   open full text
• ‘Who is on your health‐care team?’ Asking individuals with heart failure about care team membership and roles.
  Kori A. LaDonna, Joanna Bates, Glendon R. Tait, Allan McDougall, Valerie Schulz, Lorelei Lingard,.
  Health Expectations. February 29, 2016
  Background Complex, chronically ill patients require interprofessional teams to address their multiple health needs; heart failure (HF) is an iconic example of this growing problem. While patients are the common denominator in interprofessional care teams, patients have not explicitly informed our understanding of team composition and function. Their perspectives are crucial for improving quality, patient‐centred care. Objectives To explore how individuals with HF conceptualize their care team, and perceive team members' roles. Setting and Participants Individuals with advanced HF were recruited from five cities in three Canadian provinces. Design Individuals were asked to identify their HF care team during semi‐structured interviews. Team members' titles and roles, quotes pertaining to team composition and function, and frailty criteria were extracted and analysed using descriptive statistics and content analysis. Results A total of 62 individuals with HF identified 2–19 team members. Caregivers, nurses, family physicians and cardiologists were frequently identified; teams also included dentists, foot care specialists, drivers, housekeepers and spiritual advisors. Most individuals met frailty criteria and described participating in self‐management. Discussion Individuals with HF perceived being active participants, not passive recipients, of care. They identified teams that were larger and more diverse than traditional biomedical conceptualizations. However, the nature and importance of team members' roles varied according to needs, relationships and context. Patients' degree of agency was negotiated within this context, causing multiple, sometimes conflicting, responses. Conclusion Ignoring the patient's role on the care team may contribute to fragmented care. However, understanding the team through the patient's lens – and collaborating meaningfully among identified team members – may improve health‐care delivery.

  February 29, 2016   doi: 10.1111/hex.12447   open full text
• Why do pregnant women participate in research? A patient participation investigation using Q‐Methodology.
  Riwa Meshaka, Stephen Jeffares, Farah Sadrudin, Nicole Huisman, Ponnusamy Saravanan.
  Health Expectations. February 26, 2016
  Background Patient participation in study design is paramount to design studies that are acceptable to patients. Despite an increase in research involving pregnant women, relatively little is known about the motivational factors that govern their decision to be involved in a clinical trial, compared to other patient groups. Objective To better understand the viewpoints of pregnant women who take part in clinical trials. Method We chose to use Q‐Methodology, a method of exploring the structure of opinions surrounding a topic. We developed a set of 40 statements that encompassed the reasons why pregnant women might want to take part in research and 30 research participants from the PRiDE study (an observational trial investigating the role of micronutrients in gestational diabetes) were asked to rank them in order of agreement. The finished matrices from each participant were compared and analysed to produce capturing viewpoints. Results About 30 women aged 19–40 involved in the PRiDE study completed the questionnaire. There were two overarching motivators that emerged: a willingness to help medical research and improve our knowledge of medical science, and having a personal connection to the disease, therefore a potential fear of being affected by it. A third, less significant viewpoint, was that of a lack of inconvenience being a motivating factor. Conclusion and discussion Understanding what motivates pregnant women to decide to take part in a research study is valuable and helps researchers maximize their uptake and retention rates when designing a trial involving pregnant women.

  February 26, 2016   doi: 10.1111/hex.12446   open full text
• Cancer screening in Portugal: sex differences in prevalence, awareness of organized programmes and perception of benefits and adverse effects.
  Ana Rute Costa, Susana Silva, Pedro Moura‐Ferreira, Manuel Villaverde‐Cabral, Osvaldo Santos, Isabel do Carmo, Henrique Barros, Nuno Lunet.
  Health Expectations. February 23, 2016
  Background Cancer screening has contributed to downward trends in cancer mortality, but is also associated with adverse effects, which highlights the importance of promoting the participation based on informed decisions. Objectives We aimed to describe the use of cancer screening (either in organized programmes or as opportunistic screening), awareness of organized programmes and perception of its potential benefits and adverse effects, depicting possible sex differences. Design and methods We evaluated 1624 Portuguese‐speaking dwellers, aged between 16 and 79 years, through face‐to‐face interviews. To quantify sex differences, adjusted prevalence ratios and respective 95% confidence intervals were computed using Poisson regression. Results Among eligible age groups, the lifetime prevalence of screening for breast and cervical cancers was 89.8 and 71.9%, respectively. The prevalence was 23.7% for colorectal cancer and no significant sex differences were observed. Prostate cancer screening was reported by 63.8% of men. Over half of the participants referred that cancers such as prostate, skin, lung and stomach should be screened for, in addition to those for which organized programmes are recommended. Reassurance by negative results was identified as the main potential benefit of screening by nearly one‐third of men and women. Anxiety while waiting for results was the most mentioned potential adverse effect (60.4%); men refer less often this and financial costs, although statistical significance of these results was borderline. Conclusions This study provides a benchmark to plan and monitor the effects of awareness‐raising interventions, as well as for international comparisons across countries with different cancer prevention and control structures.

  February 23, 2016   doi: 10.1111/hex.12450   open full text
• Sensitivity to scale of willingness‐to‐pay within the context of menorrhagia.
  Sabina Sanghera, Emma Frew, Janesh Kumar Gupta, Joe Kai, Tracy Elizabeth Roberts.
  Health Expectations. February 23, 2016
  Objectives Willingness‐to‐pay (WTP) provides a broad assessment of well‐being, capturing benefits beyond health. However, the validity of the approach has been questioned and the evidence relating to the sensitivity of WTP to changes in health status is mixed. Using menorrhagia (heavy menstrual bleeding) as a case study, this exploratory study assesses the sensitivity to scale of WTP to change in health status as measured by a condition‐specific measure, MMAS, which includes both health and non‐health benefits. The relationship between EQ‐5D and change in health status is also assessed. Methods Baseline EQ‐5D and MMAS values were collected from women taking part in a randomized controlled trial for pharmaceutical treatment of menorrhagia. Following treatment, these measures were administered along with a WTP exercise. The relationship between the measures was assessed using Spearman's correlation analysis, and the sensitivity to scale of WTP was measured by identifying differences in WTP alongside differences in MMAS and EQ5D values. Results Our exploratory findings indicated that WTP, and not EQ‐5D, was significantly positively correlated with change in MMAS, providing some evidence for convergent validity. These findings suggest that WTP is capturing the non‐health benefits within the MMAS measure. Mean WTP also increased with percentage improvements in MMAS, suggesting sensitivity to scale. Conclusion When compared to quality of life measured using the condition‐specific MMAS measure, the convergent validity and sensitivity to scale of WTP is indicated. The findings suggest that WTP is more sensitive to change in MMAS, than with EQ‐5D.

  February 23, 2016   doi: 10.1111/hex.12452   open full text
• Patient engagement in the process of planning and designing outpatient care improvements at the Veterans Administration Health‐care System: findings from an online expert panel.
  Dmitry Khodyakov, Susan E. Stockdale, Nina Smith, Marika Booth, Lisa Altman, Lisa V. Rubenstein.
  Health Expectations. February 23, 2016
  Context There is a strong interest in the Veterans Administration (VA) Health‐care System in promoting patient engagement to improve patient care. Methods We solicited expert opinion using an online expert panel system with a modified Delphi structure called ExpertLens™. Experts reviewed, rated and discussed eight scenarios, representing four patient engagement roles in designing and improving VA outpatient care (consultant, implementation advisor, equal stakeholder and lead stakeholder) and two VA levels (local and regional). Rating criteria included desirability, feasibility, patient ability, physician/staff acceptance and impact on patient‐centredness and care quality. Data were analysed using the RAND/UCLA Appropriateness Method for determining consensus. Findings Experts rated consulting with patients at the local level as the most desirable and feasible patient engagement approach. Engagement at the local level was considered more desirable than engagement at the regional level. Being an equal stakeholder at the local level received the highest ratings on the patient‐centredness and health‐care quality criteria. Conclusions Our findings illustrate expert opinion about different approaches to patient engagement and highlight the benefits and challenges posed by each. Although experts rated local consultations with patients on an as‐needed basis as most desirable and feasible, they rated being an equal stakeholder at the local level as having the highest potential impact on patient‐centredness and care quality. This result highlights a perceived discrepancy between what is most desirable and what is potentially most effective, but suggests that routine local engagement of patients as equal stakeholders may be a desirable first step for promoting high‐quality, patient‐centred care.

  February 23, 2016   doi: 10.1111/hex.12444   open full text
• The use of decision aids on early detection of prostate cancer: views of men and general practitioners.
  Annelies Engelen, Joke Vanderhaegen, Hendrik Van Poppel, Chantal Van Audenhove.
  Health Expectations. February 18, 2016
  Background and objective While decision support tools such as decision aids can contribute to shared decision making, implementing these tools in daily practice is challenging. To identify and address issues around the use of decision support tools in routine care, this study explores the views of men and general practitioners on using a DA for early detection of prostate cancer. Methods, setting and participants Group discussions and semi‐structured interviews were carried out with 43 men and 16 general practitioners familiar with a previously developed decision aid. Data were analysed using qualitative description. Results Views on using the decision support tool could be classified into four categories: no need for decision making, need for support, perceived benefit and practical barriers. For each category, several underlying themes could be identified that reflect the absence or presence of prerequisites to successful decision support delivery. Discussion and conclusion While men and general practitioners generally have positive attitudes to shared decision making, for both parties attitudes such as not agreeing that there is a decision to be made and doubts on the beneficence of using DAs were identified as factors that may hinder the use of a DA in clinical practice. Participants formulated strategies to support the use of DAs, mainly supplementing DAs with short tools and investing in both training programmes and large‐scale awareness raising of the general public.

  February 18, 2016   doi: 10.1111/hex.12451   open full text
• ‘Well, if the kids can do it, I can do it’: older rehabilitation patients' experiences of telerehabilitation.
  Wendy Shulver, Maggie Killington, Claire Morris, Maria Crotty.
  Health Expectations. February 18, 2016
  Background and objective Although trials continue to emerge supporting the role of telerehabilitation, implementation has been slow. Key users include older people living with disabilities who are frequent users of hospital rehabilitation services but whose voices are rarely heard. It is unclear whether the use of technologies and reduced face‐to‐face contact is acceptable to these people. We report on a qualitative study of community dwelling participants who had received a home telerehabilitation programme as an alternative to conventional rehabilitation. Design Thirteen older participants, three spouses and one carer were interviewed. All had participated in an individualized therapy programme, using a combination of face‐to‐face and video consults with therapists. The programme used ‘off‐the‐shelf’ technologies including iPads for videoconferencing and electronic FitBitR devices. Interviews were recorded, transcribed verbatim and analysed using NVivo software. Results Thematic analysis resulted in five emergent themes: (i) telerehabilitation is convenient; (ii) telerehabilitation promotes motivation and self‐awareness; (iii) telerehabilitation fosters positive therapeutic relationships; (iv) mastering technologies used by younger relatives is a valued aspect of telerehabilitation; and (v) Telerehabilitation does not replace traditional face‐to‐face rehabilitation therapies. Conclusions Participants found telerehabilitation convenient and motivating, coped well with the technology and developed positive therapeutic relationships. The learning and practice aspects sat well in the context of a rehabilitation programme. The use of commercially available technologies may have contributed to respondents' high levels of acceptability. The perception of telerehabilitation as complementary to in‐person care and the expectation of technological support have implications for the implementation and delivery of telerehabilitation services to older people.

  February 18, 2016   doi: 10.1111/hex.12443   open full text
• Patient involvement in the development of patient‐reported outcome measures: a scoping review.
  Bianca Wiering, Dolf Boer, Diana Delnoij.
  Health Expectations. February 18, 2016
  Background Patient‐reported outcome measures (PROMs) measure patients’ perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM development Objective This article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time. Search strategy Literature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register. Inclusion criteria Studies were included if they described a new PROM development. Data extraction Basic information and information regarding patient involvement in development phases was recorded. Main results A total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time. Conclusions Although patient involvement in PROM development is essential to develop valid patient‐centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary.

  February 18, 2016   doi: 10.1111/hex.12442   open full text
• ‘She believed in me’. What patients with depression value in their relationship with practitioners. A secondary analysis of multiple qualitative data sets.
  John Percival, Jenny Donovan, David Kessler, Katrina Turner.
  Health Expectations. February 18, 2016
  Background Clinical guidance promotes the practitioner–patient relationship as integral to good quality person‐centred care for patients with depression. However, patients can struggle to engage with practitioners and practitioners have indicated that they want more guidance on how to establish effective relationships with their patients. Objective To identify what practitioner attributes patients with depression particularly value or find problematic. Method A secondary analysis of data collected during four qualitative studies, all of which entailed interviewing patients diagnosed with depression about their treatment experiences. Patients in the four studies had received different treatments. These included antidepressants, cognitive behaviour therapy, facilitated physical activity and listening visits. We thematically analysed 32 patient accounts. Results We identified two complimentary sets of important practitioner attributes: the first based on the practitioner's bearing; the second based on the practitioner's enabling role. We found that patients value practitioners who consider their individual manner, share relevant personal information, show interest and acceptance, communicate clearly and listen carefully, collaborate on manageable goals and sanction greater patient self‐care and self‐compassion. It was also evident that patients receiving different treatments value the same practitioner attributes and that when these key practitioner qualities were not evident, patients were liable not to re‐attend or comply with treatment. Conclusion The practitioner attributes that patients with depression most value have a positive impact on their engagement with treatment. Patients emphasise the importance of a practitioner's demeanour and encouragement, rather than the amount of time or specific treatment a practitioner is able to provide.

  February 18, 2016   doi: 10.1111/hex.12436   open full text
• Group affiliation in self‐management: support or threat to identity?
  Dagmara Bossy, Ingrid Ruud Knutsen, Anne Rogers, Christina Foss.
  Health Expectations. February 12, 2016
  Background Self‐management is considered important in chronic illness, and contemporary health policy recommends participation in support groups for individuals with chronic conditions. Although withdrawal from or non‐participation in support groups is an important problem, there is limited knowledge about individuals' own motivation for participation in or withdrawal from self‐management support groups. Objectives To investigate how individuals with type 2 diabetes perceive participation in group‐based self‐management support. Design This is a qualitative focus group study using a semi‐structured interview guide. Setting and participants Sixteen participants diagnosed with type 2 diabetes were included in the study. Individuals with and without group affiliations were mixed in three focus groups to trigger discussions. In the analysis, reoccurring themes of engagement and discussions between participants were focused within a theoretical frame of institutional logic. The focus groups are seen as social spaces where participants construct identity. Results Both participation and non‐participation in group‐based self‐management support are associated with dealing with the stigma of having type 2 diabetes. Negotiations contribute to constructing an illness dignity as a response to the logic of moral responsibility for the disease. Discussion and conclusion Contemporary policy contributes to societal understandings of individuals with type 2 diabetes as morally inadequate. Our study shows that group‐based self‐management support may counteract blame and contribute in negotiations of identity for individuals with type 2 diabetes. This mechanism makes participation in groups beneficial for some but stigma inducing for others.

  February 12, 2016   doi: 10.1111/hex.12448   open full text
• Health literacy, associated lifestyle and demographic factors in adult population of an English city: a cross‐sectional survey.
  Joanne Protheroe, Rebecca Whittle, Bernadette Bartlam, Emee Vida Estacio, Linda Clark, Judith Kurth.
  Health Expectations. January 15, 2016
  Background Lower health literacy is a public health issue that follows a social gradient, potentially reinforcing existing health inequalities. However, levels of health literacy in particular populations can be unclear and are a key to identifying effective public health interventions. This research examined health literacy levels in Stoke‐on‐Trent, where 31.2% of the population live in areas classified amongst the 10% most deprived in England. Methods A cross‐sectional survey using the Newest Vital Sign examined associations with demographic factors, lifestyle behaviours, Internet use and self‐rated health. The sample (n = 1046) took account of variance in levels of health literacy by age, educational attainment and deprivation. Bivariate logistic regression and multivariate logistic regression were used to estimate associations with health literacy when adjusted for other demographic factors and lifestyle behaviours. Results Nine hundred and seventy‐two respondents completed the health literacy measure (93%): 277 (28.5%) scored low, 228 (23.5%) scored marginal and 467 (48.0%) scored adequate. Associations with higher rates of limited health literacy included older age, lower educational level, lower income, perceived poor health and lack of access to the Internet. Conclusions Given the complexity of factors influencing health literacy interdisciplinary approaches across health and social care and the voluntary sector are essential in identifying and developing appropriate interventions.

  January 15, 2016   doi: 10.1111/hex.12440   open full text
• Trial participation as avoidance strategy: a qualitative study.
  Natalie Armstrong, Elizabeth Shaw, Elaine McColl, Douglas G. Tincello, Paul Hilton.
  Health Expectations. January 05, 2016
  Background Trial participation decisions are often influenced by expectations of potential benefit. Attention has focused on trial participation as a means of securing something seen as desirable, such as experimental treatment. In contrast, we consider a case in which one trial arm involved receiving less than usual care. We explore how this influenced participants’ decisions to participate. Methods Semi‐structured interviews with 29 women participating in a pilot trial comparing invasive urodynamic testing (typically normal care) to basic clinical assessment with non‐invasive tests, prior to surgical treatment for stress urinary incontinence. Analysis was based on the constant comparative method. Results Invasive tests were something many were aware of and worried about. Participants understood that trial participation meant they might avoid having these tests, and for about one‐third, this was the primary factor motivating participation. A further third mentioned they were not looking forward to tests (if allocated to them) or were lucky to have missed them (if allocated to basic clinical assessment). None of the women appeared to have discussed their desire to avoid having invasive tests with their clinicians. Conclusions In contrast to cases in which trial participation is motivated by the wish to secure an intervention not otherwise available, this study reports the opposite – trial participation as an opportunity to avoid having something regarded as undesirable. The option to decline a particular intervention should always be available, and care must be taken to ensure that potential participants are aware that trial participation is not the only possible means of avoidance.

  January 05, 2016   doi: 10.1111/hex.12437   open full text
• How a moderated online discussion forum facilitates support for young people with eating disorders.
  Sarah Kendal, Sue Kirk, Rebecca Elvey, Roger Catchpole, Steven Pryjmachuk.
  Health Expectations. January 03, 2016
  Introduction Young people with eating disorders are at risk of harm to their social, emotional and physical development and life chances. Although they can be reluctant to seek help, they may access social media for information, advice or support. The relationship between social media and youth well‐being is an emotive subject, but not clearly understood. This qualitative study aimed to explore how young people used a youth‐orientated, moderated, online, eating disorders discussion forum, run by an eating disorders charity. Methods We applied a netnographic approach involving downloading and thematically analysing over 400 messages posted August–November 2012. Results Data analysis generated five themes: Taking on the role of mentor; the online discussion forum as a safe space; Friendship within the online forum; Flexible help; and Peer support for recovery and relapse prevention. Forum moderation may have influenced the forum culture. Discussion Our findings are consistent with literature about youth preferences for mental health self‐care support. A young person's decision to use this discussion forum can be construed as pro‐active self‐care. A moderated online discussion forum can make a positive contribution to support for youth with eating disorders, countering negative media perceptions of online groups. Conclusion This study adds to knowledge about how young people access support via social media. Online discussion forums can be safe and acceptable spaces for youth to access help. Further research could provide insights into the impact of forum moderation.

  January 03, 2016   doi: 10.1111/hex.12439   open full text
• Defining continuity of care from the perspectives of mental health service users and professionals: an exploratory, comparative study.
  Angela Sweeney, Jonathon Davies, Susan McLaren, Margaret Whittock, Ferew Lemma, Ruth Belling, Sarah Clement, Tom Burns, Jocelyn Catty, Ian Rees Jones, Diana Rose, Til Wykes.
  Health Expectations. December 29, 2015
  Background Continuity of care (COC) is central to the organization and delivery of mental health services. Traditional definitions have excluded service users, and this lack of involvement has been linked to poor conceptual clarity surrounding the term. Consequently, very little is known about the differences and similarities in the conceptualization of COC by mental health service users and professionals. Objective To explore and compare mental health service users’ and professionals’ definitions of COC. Methods Using an exploratory, qualitative design, five focus groups with 32 service users each met twice. Data were analysed thematically to generate a service user‐defined model of COC. In a cross‐sectional survey, health and social care professionals (n = 184) defined COC; responses were analysed thematically. Service user and professional definitions were conceptually mapped and compared to identify similarities and differences. Results There was crossover between the service user and professional derived models of COC. Both contained temporal, quality, systemic, staff, hospital and needs‐related elements of COC. Service users prioritized access, information, peer support and avoiding services; health professionals most frequently referred to staff, cross‐sectional and temporal COC. Service users alone identified service avoidance, peer support and day centres as COC elements; professionals alone identified cross‐sectional working. Conclusions Important similarities and differences exist in service user and professional conceptualizations of COC. Further research is necessary to explore these differences, prior to integrating service user and professional perspectives in a validated COC framework which could enable the development and evaluation of interventions to improve COC, informing policy and practice.

  December 29, 2015   doi: 10.1111/hex.12435   open full text
• Conflicting health information: a critical research need.
  Delesha M. Carpenter, Lorie L. Geryk, Annie T. Chen, Rebekah H. Nagler, Nathan F. Dieckmann, Paul K. J. Han.
  Health Expectations. December 28, 2015
  Conflicting health information is increasing in amount and visibility, as evidenced most recently by the controversy surrounding the risks and benefits of childhood vaccinations. The mechanisms through which conflicting information affects individuals are poorly understood; thus, we are unprepared to help people process conflicting information when making important health decisions. In this viewpoint article, we describe this problem, summarize insights from the existing literature on the prevalence and effects of conflicting health information, and identify important knowledge gaps. We propose a working definition of conflicting health information and describe a conceptual typology to guide future research in this area. The typology classifies conflicting information according to four fundamental dimensions: the substantive issue under conflict, the number of conflicting sources (multiplicity), the degree of evidence heterogeneity and the degree of temporal inconsistency.

  December 28, 2015   doi: 10.1111/hex.12438   open full text
• Lung cancer screening: what do long‐term smokers know and believe?
  Lisa Carter‐Harris, DuyKhanh Pham Ceppa, Nasser Hanna, Susan M. Rawl.
  Health Expectations. December 23, 2015
  Objective To explore knowledge and beliefs of long‐term smokers about lung cancer, associated risk factors and lung cancer screening. Design Qualitative study theoretically framed by the expanded Health Belief Model based on four focus group discussions. Content analysis was performed to identify themes of knowledge and beliefs about lung cancer, associated risk factors and lung cancer screening among long‐term smokers' who had and had not been screened for lung cancer. Methods Twenty‐six long‐term smokers were recruited; two groups (n = 9; n = 3) had recently been screened and two groups (n = 7; n = 7) had never been screened. Results While most agreed lung cancer is deadly, confusion or inaccurate information exists regarding the causes and associated risk factors. Knowledge related to lung cancer screening and how it is performed was low; awareness of long‐term smoking's association with lung cancer risk remains suboptimal. Perceived benefits of screening identified include: (i) finding lung cancer early; (ii) giving peace of mind; and (iii) motivation to quit smoking. Perceived barriers to screening identified include: (i) inconvenience; (ii) distrust; and (iii) stigma. Conclusions Perceived barriers to lung cancer screening, such as distrust and stigma, must be addressed as lung cancer screening becomes more widely implemented. Heightened levels of health‐care system distrust may impact successful implementation of screening programmes. Perceived smoking‐related stigma may lead to low levels of patient engagement with medical care and decreased cancer screening participation. It is also important to determine modifiable targets for intervention to enhance the shared decision‐making process between health‐care providers and their high‐risk patients.

  December 23, 2015   doi: 10.1111/hex.12433   open full text
• Challenges in shared decision making in advanced cancer care: a qualitative longitudinal observational and interview study.
  Linda Brom, Janine C. De Snoo‐Trimp, Bregje D. Onwuteaka‐Philipsen, Guy A. M. Widdershoven, Anne M. Stiggelbout, H. Roeline W. Pasman.
  Health Expectations. December 16, 2015
  Background Patients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care. Objective To examine whether and how the steps of SDM can be recognized in decision making about second‐ and third‐line chemotherapy. Methods Fourteen advanced cancer patients were followed over time using face‐to‐face in‐depth interviews and observations of the patients' out‐clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding. Results Patients were satisfied with the decision‐making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy. Conclusion To reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. Through this, the difficult process of decision making in the last phase of life can be facilitated and the focus on the best care for the specific patient is strengthened.

  December 16, 2015   doi: 10.1111/hex.12434   open full text
• Young adults' experiences of seeking online information about diabetes and mental health in the age of social media.
  Gillian Fergie, Shona Hilton, Kate Hunt.
  Health Expectations. December 08, 2015
  Background The Internet is a primary source of health information for many. Since the widespread adoption of social media, user‐generated health‐related content has proliferated, particularly around long‐term health issues such as diabetes and common mental health disorders (CMHDs). Objective To explore perceptions and experiences of engaging with health information online in a sample of young adults familiar with social media environments and variously engaged in consuming user‐generated content. Methods Forty semi‐structured interviews were conducted with young adults, aged 18–30, with experience of diabetes or CMHDs. Data were analysed following a thematic networks approach to explore key themes around online information‐seeking and content consumption practices. Results Although participants primarily discussed well‐rehearsed approaches to health information‐seeking online, particularly reliance on search engines, their accounts also reflected active engagement with health‐related content on social media sites. Navigating between professionally produced websites and user‐generated content, many of the young adults seemed to appreciate different forms of health knowledge emanating from varied sources. Participants described negotiating health content based on social media practices and features and assessing content heuristically. Some also discussed habitual consumption of content related to their condition as integrated into their everyday social media use. Conclusion Technologies such as Facebook, Twitter and YouTube offer opportunities to consume and assess content which users deem relevant and useful. As users and organizations continue to colonize social media platforms, opportunities are increasing for health communication and intervention. However, how such innovations are adopted is dependent on their alignment with users' expectations and consumption practices.

  December 08, 2015   doi: 10.1111/hex.12430   open full text
• Public involvement in research within care homes: benefits and challenges in the APPROACH study.
  Katherine Froggatt, Claire Goodman, Hazel Morbey, Sue L. Davies, Helen Masey, Angela Dickinson, Wendy Martin, Christina Victor.
  Health Expectations. December 01, 2015
  Background Public involvement in research (PIR) can improve research design and recruitment. Less is known about how PIR enhances the experience of participation and enriches the data collection process. In a study to evaluate how UK care homes and primary health‐care services achieve integrated working to promote older people's health, PIR was integrated throughout the research processes. Objectives This paper aims to present one way in which PIR has been integrated into the design and delivery of a multisite research study based in care homes. Design A prospective case study design, with an embedded qualitative evaluation of PIR activity. Setting and participants Data collection was undertaken in six care homes in three sites in England. Six PIR members participated: all had prior personal or work experience in care homes. Data collection Qualitative data collection involved discussion groups, and site‐specific meetings to review experiences of participation, benefits and challenges, and completion of structured fieldwork notes after each care home visit. Results PIR members supported recruitment, resident and staff interviews and participated in data interpretation. Benefits of PIR work were resident engagement that minimized distress and made best use of limited research resources. Challenges concerned communication and scheduling. Researcher support for PIR involvement was resource intensive. Discussion and conclusions Clearly defined roles with identified training and support facilitated involvement in different aspects of the data collection process. This can also ensure that vulnerable older people who participate in research have a positive experience that reinforces the value of their views.

  December 01, 2015   doi: 10.1111/hex.12431   open full text
• Development of a patient‐centred conceptual framework of health‐related quality of life in neuromyelitis optica: a qualitative study.
  Abigail M. Methley, Kerry Mutch, Perry Moore, Anu Jacob.
  Health Expectations. November 24, 2015
  Background Neuromyelitis optica (NMO) is an auto‐immune disease that can cause severe visual and mobility impairments. Research on health‐related quality of life (HRQoL) in NMO is scarce, limiting knowledge on factors influencing HRQoL and support needs. Aim This study provides the first qualitative exploration of HRQoL in NMO, conducted to provide a conceptual framework for the development of an NMO patient‐reported outcome measure. Method Fifteen people with NMO (aged 18–74; 11 women, 4 men) participated in semi‐structured interviews; data were analysed using constant comparative analysis. Results HRQoL in NMO is a multifaceted concept incorporating highly subjective perceptions of normality and meaning. Four major themes were identified: impact of physical symptoms on daily living, utilizing support to achieve independence, expectations for life and meaningful roles in life and purpose. Discussion Themes highlighted the importance of perceived normality, and its relationship to attaining life goals comparable to peers, as underpinning evaluations of HRQoL. Many people with severe disability reported a high HRQoL, suggesting the inappropriateness of assuming a negative HRQoL on the basis of an individual's neurological impairment. Conclusions These findings further the conceptual understanding of HRQoL in NMO, informing patient‐care approaches and the development of an NMO‐specific patient‐reported outcome measure.

  November 24, 2015   doi: 10.1111/hex.12432   open full text
• Explaining public satisfaction with health‐care systems: findings from a nationwide survey in China.
  Neil Munro, Jane Duckett.
  Health Expectations. November 23, 2015
  Objective To identify factors associated with health‐care system satisfaction in China. Context Recent research suggests that socio‐demographic characteristics, self‐reported health, income and insurance, ideological beliefs, health‐care utilization, media use and perceptions of services may affect health‐care system satisfaction, but the relative importance of these factors is poorly understood. New data from China offer the opportunity to test theories about the sources of health‐care system satisfaction. Design Stratified nationwide survey sample analysed using multilevel logistic regression. Setting and participants: 3680 Chinese adults residing in family dwellings between 1 November 2012 and 17 January 2013. Main outcome measure Satisfaction with the way the health‐care system in China is run. Results We find only weak associations between satisfaction and socio‐demographic characteristics, self‐reported health and income. We do, however, find that satisfaction is strongly associated with having insurance and belief in personal responsibility for meeting health‐care costs. We also find it is negatively associated with utilization, social media use, perceptions of access as unequal and perceptions of service providers as unethical. Conclusions To improve satisfaction, Chinese policymakers – and their counterparts in countries with similar health‐care system characteristics – should improve insurance coverage and the quality of health services, and tackle unethical medical practices.

  November 23, 2015   doi: 10.1111/hex.12429   open full text
• Knowledge, attitudes and beliefs regarding colorectal cancer screening among ethnic minority groups in the Netherlands – a qualitative study.
  Anke J. Woudstra, Evelien Dekker, Marie‐Louise Essink‐Bot, Jeanine Suurmond.
  Health Expectations. November 17, 2015
  Background Research has shown that ethnic minority groups are less likely to participate in colorectal cancer (CRC) screening than the majority population and hence less likely to be diagnosed at an early stage when treatment is potentially more successful. Objective To explore knowledge, attitudes and beliefs regarding CRC and CRC screening among ethnic minority groups in the Netherlands. Design We conducted qualitative interviews with 30 first‐generation immigrants born in Turkey, Morocco and Surinam. We based the topic guide on the health belief model. Framework analysis was used to analyse our data. Results Although knowledge of CRC and CRC screening was limited, all respondents felt susceptible to CRC. CRC screening was perceived to mainly benefit those individuals with poor health and symptoms. Although most respondents had a positive attitude towards CRC screening, knowledge about its potential harms was limited and self‐efficacy to participate was low. Adult children acted as important mediators in providing access to information. The language barrier and low literacy formed serious barriers to informed participation in CRC screening. Conclusion To ensure that all eligible individuals, including ethnic minority groups, have equal opportunities to informed participation in screening, targeted communication strategies should be developed, such as oral and visual channels, and face‐to‐face communication in the mother tongue. This will help ethnic minority groups to make an informed decision about participation in CRC screening.

  November 17, 2015   doi: 10.1111/hex.12428   open full text
• A devolved model for public involvement in the field of mental health research: case study learning.
  Pam Moule, Rosie Davies.
  Health Expectations. November 16, 2015
  Background Patient and public involvement in all aspects of research is espoused and there is a continued interest in understanding its wider impact. Existing investigations have identified both beneficial outcomes and remaining issues. This paper presents the impact of public involvement in one case study led by a mental health charity conducted as part of a larger research project. The case study used a devolved model of working, contracting with service user‐led organizations to maximize the benefits of local knowledge on the implementation of personalized budgets, support recruitment and local user‐led organizations. Objective To understand the processes and impact of public involvement in a devolved model of working with user‐led organizations. Design Multiple data collection methods were employed throughout 2012. These included interviews with the researchers (n = 10) and research partners (n = 5), observation of two case study meetings and the review of key case study documentation. Analysis was conducted in NVivo10 using a coding framework developed following a literature review. Findings Five key themes emerged from the data; Devolved model, Nature of involvement, Enabling factors, Implementation challenges and Impact. While there were some challenges of implementing the devolved model it is clear that our findings add to the growing understanding of the positive benefits research partners can bring to complex research. Conclusions A devolved model can support the involvement of user‐led organizations in research if there is a clear understanding of the underpinning philosophy and support mechanisms are in place.

  November 16, 2015   doi: 10.1111/hex.12426   open full text
• Facilitating psychosexual adjustment for women undergoing pelvic radiotherapy: pilot of a novel patient psycho‐educational resource.
  Franchelle Lubotzky, Phyllis Butow, Kathryn Nattress, Caroline Hunt, Susan Carroll, Andrew Comensoli, Shannon Philp, Ilona Juraskova.
  Health Expectations. November 09, 2015
  Purpose This pilot study aimed to obtain feedback on the feasibility, safety and acceptability of a psychosexual rehabilitation booklet developed for women undergoing pelvic radiation therapy (PRT) and to explore women's sexual, informational and supportive care needs post‐PRT rehabilitation. Methods Twenty women treated with PRT for gynaecological or anorectal cancer within the last 5 years, who had received vaginal dilators, provided feedback on the format, content and utility of the booklet and discussed their post‐treatment information needs, via a semi‐structured phone interview. Women completed standardized (HADS, IES‐R) and study‐specific scales to characterize psychological status of the sample and to assess participants' booklet knowledge and feedback, respectively. Results The booklet was perceived as very helpful, informative and not distressing, providing additional information to that discussed with clinicians. After reading the booklet, women had good understanding of strategies to reduce the sexual impact of PRT. Many women reported that discussion of sexuality was often avoided during consultations, despite them experiencing distressing sexual experiences and difficulties post‐PRT. Conclusions This novel resource which addresses an important component of post‐pelvic radiation care appears acceptable and highly valued. Findings have highlighted a need for sexual health communication training for clinicians who treat this population so that they can initiate conversations about vaginal health and sexual health in an informed and comfortable manner. The impact of the revised booklet on psychosexual and clinical outcomes is being evaluated in a multicentre RCT.

  November 09, 2015   doi: 10.1111/hex.12424   open full text
• Healthcare providers' experiences screening for intimate partner violence among migrant and seasonal farmworking women: A phenomenological study.
  Jonathan B. Wilson, Damon L. Rappleyea, Jennifer L. Hodgson, Andrew S. Brimhall, Tana L. Hall, Alyssa P. Thompson.
  Health Expectations. November 04, 2015
  Background Migrant and seasonal farmworking (MSFW) women patients experience substantially more intimate partner violence (IPV) than the general population, but few health‐care providers screen patients for IPV. While researchers have examined screening practices in health‐care settings, none have exclusively focused on MSFW women. Objective The aim of this phenomenological study was to explore the experiences of health‐care providers who have screened for and/or addressed IPV with MSFW women patients. Design Researchers utilized descriptive phenomenology to capture the lived experiences of these health‐care providers. Data were analysed using Colaizzi's seven‐stage framework. Setting and participants Interviews were conducted with nine female participants – all of whom: (i) were clinically active health‐care providers within the MSFW community, (ii) were bilingual in English and Spanish or had access to a translator, (iii) had treated MSFW patients who had experienced IPV and (iv) were at least 18 years of age. Results Participants' experiences were reflected in four emergent themes: (i) provider‐centered factors, (ii) patient‐centered factors, (iii) clinic‐centered factors and (iv) community‐centered factors. Participants described barriers to establish routine IPV assessment, decrease patient ambivalence and increase on‐site support and community resources. Discussion and conclusions This study aimed to generate a greater understanding of the experiences of health‐care providers with screening for and addressing IPV with MSFW patients. Implications and recommendations for research, clinical practice and policy are provided.

  November 04, 2015   doi: 10.1111/hex.12421   open full text
• What are the support experiences and needs of patients who have received bariatric surgery?
  Melanie Sharman, Martin Hensher, Stephen Wilkinson, Danielle Williams, Andrew Palmer, Alison Venn, Douglas Ezzy.
  Health Expectations. November 02, 2015
  Objective To explore the support needs and experiences of patients who had received publicly or privately funded bariatric surgery and the importance of this support in mediating outcomes of surgery. Methods Seven semi‐structured focus groups were conducted. A broad interview schedule guided the discussions which were audio‐recorded and transcribed verbatim. Data were analysed thematically. Results Twenty‐six women and 15 men with a mean age of 54 years (range 24–72) participated in the study. Participants described support needs from health professionals, significant others (family and friends), peers (bariatric surgery recipients) and the general community. Peer, dietetic and psychological support were identified as important factors influencing the outcomes (e.g. weight reduction or health improvement) or experience of bariatric surgery but were identified as infrequently received or inadequately provided. Psychological support was proposed as one of the most significant but commonly overlooked components of care. Support needs appeared higher in the first year post‐surgery, when subsequent related or unrelated surgeries were required and following significant life change such as worsening health. For some participants, deficits in support appeared to negatively influence the experience or outcomes of surgery. Conclusion Providers of bariatric surgery should discuss support needs and accessibility regularly with patients especially in the first year post‐surgery and following significant change in a patient's life (e.g. declined health or childbirth). Nutrition, psychological and peer support (e.g. through support groups) may be especially important for some patients.

  November 02, 2015   doi: 10.1111/hex.12423   open full text
• Citizens' preferences on healthcare expenditure allocation: evidence from Greece.
  Sofia Xesfingi, Athanassios Vozikis, Yannis Pollalis.
  Health Expectations. November 02, 2015
  Background of context Priority setting and resource allocation across various healthcare functions are critical issues in health policy and strategic decision making. As health resources are limited while there are so many health challenges to resolve, consumers and payers have to make difficult decisions about expenditure allocation. Objective Our research focus on the (dis)agreement between citizens' preferences and actual public health expenditure across broad healthcare functions, on whether this (dis)agreement is persistent, on whether various demographic factors amplify this (dis)agreement and to derive useful implications for public health policies. Setting and participants Using survey data of 3029 citizens in Greece for the year 2012 and employing logit estimation techniques, we analysed the effect of demographic and other factors in shaping citizens' (dis)agreement with public health expenditure allocation. Results Our results demonstrate the important role of income, family members and residence in shaping citizens' preferences regarding health expenditure priorities in almost all healthcare functions, while other demographic factors such as job, age, gender and marital status do partly associate and play a significant role. Conclusions Government should encourage the citizens' participation in the decision‐making process in order to eliminate the unveiled and significant disagreement between citizens' preferences and actual public health expenditure across all healthcare functions.

  November 02, 2015   doi: 10.1111/hex.12420   open full text
• A population analysis of self‐management and health‐related quality of life for chronic musculoskeletal conditions.
  Elizabeth A. Hoon, Tiffany K. Gill, Clarabelle Pham, Jodi Gray, Justin Beilby.
  Health Expectations. November 02, 2015
  Background There is growing policy emphasis on self‐management as an essential component of musculoskeletal chronic care models. Underpinning this drive is the assumption that with correct ‘informational’ framing people will better manage their condition's progression and thereby maintain quality of life. Objective To assess associations between self‐management behaviours and health‐related quality of life for people with chronic musculoskeletal conditions. Design Using survey data from health census and follow‐up structured telephone interviews, linear regression (cumulatively adjusted for potential confounders) and logistic regression examined associations between use of specific self‐management behaviours and quality of life. Setting and participants A total of 885 respondents (2012) who indicated still having a musculoskeletal condition reported in a 2010 health census (Port Lincoln, South Australia). Variables Specific self‐management activities, age, sex, education, marital status, smoking, comorbidities and pain. Outcome measure EQ‐5D‐5L. Results Exercise (63%) and diet (19%) were the most commonly reported self‐management activities used to manage musculoskeletal conditions. About 24% reported not using any specific self‐management activities. Involvement in self‐management showed no association with quality of life, with and without adjustment for confounders. Diet had a negative association with quality of life as did use of formal support (self‐management course or community group support). Discussion Taking a real‐world perspective, these findings raise important questions about how people currently engage with self‐management activities and the kinds of outcomes that can be expected from undertaking these activities. The timing of people's uptake of self‐management within the musculoskeletal disease continuum is an issue requiring further attention in both research and practice.

  November 02, 2015   doi: 10.1111/hex.12422   open full text
• We are not all coping: a cross‐sectional investigation of resilience in the dementia care workforce.
  Kate‐Ellen J. Elliott, Christine M. Stirling, Angela J. Martin, Andrew L. Robinson, Jennifer L. Scott.
  Health Expectations. October 16, 2015
  Background Research on workforce development for high‐quality dementia care more often focuses on enhancing employee knowledge and skill and less on managing employee stress and coping at work. Objective To review employee stress and coping in response to high job demands in community‐based dementia care organizations in Tasmania, Australia. Methods Stress and coping in response to job roles of 25 community‐based dementia care workers were reviewed using self‐report questionnaire data. Data were analysed for descriptive results and at an individual case level. Individual participant scores were reviewed for clinically significant stress and coping factors to create worker profiles of adjustment. Results Two adjustment profiles were found. The ‘global resilience’ profile, where workers showed positive adjustment and resilience indicating they found their jobs highly rewarding, were very confident in their abilities at work and had a strong match between their personal and organizational values. The second ‘isolated distress’ profile was only found in a minority and included poor opportunities for job advancement, a missmatch in personal and work values or clinically high levels of psychological distress. Conclusion Aged care workplaces that advocate employee well‐being and support employees to cope with their work roles may be more likely to retain motivated and committed staff. Future research should consider employee stress and coping at the workforce level, and how this can influence high‐quality care delivery by applying the measures identified for this study. Comparative research across different care settings using meta‐analytic studies may then be possible.

  October 16, 2015   doi: 10.1111/hex.12419   open full text
• Treatment‐related experiences and preferences of patients with lung cancer: a qualitative analysis.
  Ines Aumann, Kristine Kreis, Kathrin Damm, Heiko Golpon, Tobias Welte, J. Matthias Graf von der Schulenburg.
  Health Expectations. October 15, 2015
  Background Lung cancer is one of the most common types of cancer worldwide, and it causes significant challenges for patients due to the poor survival rate and treatment‐related side‐effects. Because of lung cancer's great burden, identification and use of the patients' preferences can help to improve patients' quality of life. Objective Interviews with patients who have lung cancer were used to ascertain a range of experiences and to make recommendations regarding the improvement of treatment based on these patients' preferences. Because chemotherapy is the common treatment option for lung cancer, we focused on this treatment. The interviews were audio‐taped, verbally transcribed and evaluated via content analysis. Setting and Participants A total of 18 participants (11 men and 7 women) with small or non‐small‐cell lung cancer who were receiving chemotherapy in one clinic were interviewed between June and July 2013. Results Two main aspects with different subthemes were identified during the interviews. One main aspect focused on organizational context, such as the treatment day process, or experiences with different stakeholders, such as with the health insurance company or physicians. The other category referred to experiences that influenced psychosocial factors, including physical and mental experiences. Discussion and Conclusion Patients reported different experiences concerning physical, psychological and organizational areas during chemotherapy. Nevertheless, some potential areas for improving care, and therefore the quality of life of patients with lung cancer, could be identified. These improvement measures highlighted that with small, non‐time‐consuming and inexpensive changes, the treatment for patients with lung cancer can be improved.

  October 15, 2015   doi: 10.1111/hex.12417   open full text
• Let's talk about sex: older people's views on the recognition of sexuality and sexual health in the health‐care setting.
  Michael Bauer, Emily Haesler, Deirdre Fetherstonhaugh.
  Health Expectations. October 08, 2015
  Objective To report on the findings of a systematic review which examined the experiences and views of older people aged 65 years and over on health professionals’ recognition of sexuality and sexual health and whether these aspects of the person are incorporated into care. Review methods The review followed the methods laid out by the Joanna Briggs Institute. Eleven electronic databases were searched using the terms sexual*, aged, ageing/aging, attitudes and care in any health‐care setting. Only quantitative and qualitative research and opinion papers written in English and offering unique commentary published between January 2004 and January 2015 were eligible. Results A total of 999 papers were initially identified and of these, 148 were assessed by two reviewers. Eighteen studies – seven quantitative, eight qualitative and three opinion papers – met the inclusion criteria and were appraised. The importance of sexuality to well‐being, language used, expressing sexuality, discomfort discussing sexuality, inadequate sexuality health education and treatment and deficient communication with health‐care professionals were all identified as significant issues in a range of settings. Fourteen categories and five syntheses summarize the 43 findings. Conclusions Sexuality remains important for many older people; however, embarrassment, dissatisfaction with treatment, negative attitudes and seeming disinterest by health professionals can all inhibit discussions. Professionals and health‐care services need to adopt strategies and demonstrate characteristics which create environments that are more supportive of sexuality. Issues related to sexuality and sexual health should be able to be discussed without anxiety or discomfort so that older people receive optimal care and treatment.

  October 08, 2015   doi: 10.1111/hex.12418   open full text
• Building intentions with the theory of planned behaviour: a qualitative assessment of salient beliefs about pharmacy value added services in Malaysia.
  Christine Liang Hoay Tan, Mohamed Azmi Hassali, Fahad Saleem, Asrul Akmal Shafie, Hisham Aljadhay, Vincent B. Y. Gan.
  Health Expectations. October 01, 2015
  Objective To improve pharmaceutical care delivery in Malaysia, the Ministry of Health (MOH) had introduced the concept of value added services (VAS). Despite its reported convenience and advantages, VAS utilization rate is low in the country. The study aims to explore patients’ understanding, beliefs and expectations towards VAS in Malaysia using the theory of planned behaviour (TPB) as the theoretical model. Methods A qualitative methodology was used whereby face‐to‐face interviews were conducted with 12 patients who collected partial medicine supplies from government pharmacies. Participants were recruited using purposive and snowball sampling method in the state of Negeri Sembilan, Malaysia. Interviews were audio‐recorded. Verbatim transcription and thematic content analysis were performed on the data. Results Thematic content analysis yielded five major themes: (i) attitudes towards using VAS, (ii) subjective norms, (iii) perceived behavioural control, (iv) lack of knowledge and understanding of VAS and (v) expectations towards VAS. Conclusion The interviews explored and informed new information about salient beliefs towards pharmacy VAS. The findings suggest that VAS is still in its infancy and a more robust and effective advertising and marketing campaign is needed to boost the adoption rate. Behavioural attitudes, subjective norms and perceived control elements were discussed and serve as important variables of interest in future study. Expectations towards VAS serve as an important guideline to further improve patient‐oriented services.

  October 01, 2015   doi: 10.1111/hex.12416   open full text
• Do consumer voices in health‐care citizens’ juries matter?
  Rachael Krinks, Elizabeth Kendall, Jennifer A. Whitty, Paul A. Scuffham.
  Health Expectations. September 28, 2015
  Background There is widespread agreement that the public should be engaged in health‐care decision making. One method of engagement that is gaining prominence is the citizens’ jury, which places citizens at the centre of the deliberative process. However, little is known about how the jury process works in a health‐care context. There is even less clarity about how consumer perspectives are heard within citizens’ juries and with what consequences. Objectives This paper focuses on what is known about the role of consumer voices within health‐care citizens’ juries, how these voices are heard by jurors and whether and in what ways the inclusion or exclusion of such voices may matter. Results Consumer voices are not always included in health‐care citizens’ juries. There is a dearth of research on the conditions under which consumer voices emerge (or not), from which sources and why. As a result, little is known about what stories are voiced or silenced, and how such stories are heard by jurors, with what consequences for jurors, deliberation, decision‐makers, policy and practice. Discussion and Conclusion The potential role of consumer voices in influencing deliberations and recommendations of citizens’ juries requires greater attention. Much needed knowledge about the nuances of deliberative processes will contribute to an assessment of the usefulness of citizens’ juries as a public engagement mechanism.

  September 28, 2015   doi: 10.1111/hex.12397   open full text
• End‐user involvement in a systematic review of quantitative and qualitative research of non‐pharmacological interventions for attention deficit hyperactivity disorder delivered in school settings: reflections on the impacts and challenges.
  Jo Thompson Coon, Ruth Gwernan‐Jones, Darren Moore, Michelle Richardson, Catherine Shotton, Will Pritchard, Christopher Morris, Ken Stein, Tamsin Ford.
  Health Expectations. September 21, 2015
  Background The benefits of end‐user involvement in health‐care research are widely recognized by research agencies. There are few published evaluations of end‐user involvement in systematic reviews. Objectives (i) Describe end‐user involvement in a complex mixed‐methods systematic review of ADHD in schools, (ii) reflect on the impact of end‐user involvement, (iii) highlight challenges and benefits experienced and (iv) provide suggestions to inform future involvement. Methods End‐users were involved in all stages of the project, both as authors and as members of an advisory group. In addition, several events were held with groups of relevant end‐users during the project. Results End‐user input (i) guided the direction of the research, (ii) contributed to a typology of interventions and outcomes, (iii) contributed to the direction of data analysis and (iv) contributed to the robustness of the syntheses by demonstrating the alignment of interim findings with lived experiences. Challenges included (i) managing expectations, (ii) managing the intensity of emotion, (iii) ensuring that involvement was fruitful for all not just the researcher, (iv) our capacity to communicate and manage the process and (v) engendering a sense of involvement amongst end‐users. Conclusions End‐user involvement was an important aspect of this project. To minimize challenges in future projects, a recognition by the project management team and the funding provider that end‐user involvement even in evidence synthesis projects is resource intensive is essential to allow appropriate allocation of time and resources for meaningful engagement.

  September 21, 2015   doi: 10.1111/hex.12400   open full text
• Can consumers learn to ask three questions to improve shared decision making? A feasibility study of the ASK (AskShareKnow) Patient–Clinician Communication Model® intervention in a primary health‐care setting.
  Heather L Shepherd, Alexandra Barratt, Anna Jones, Deborah Bateson, Karen Carey, Lyndal J Trevena, Kevin McGeechan, Chris B Del Mar, Phyllis N Butow, Ronald M Epstein, Vikki Entwistle, Edith Weisberg.
  Health Expectations. September 14, 2015
  Objective To test the feasibility and assess the uptake and acceptability of implementing a consumer questions programme, AskShareKnow, to encourage consumers to use the questions ‘1. What are my options; 2. What are the possible benefits and harms of those options; 3. How likely are each of those benefits and harms to happen to me?’ These three questions have previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement. Methods This single‐arm intervention study invited participants attending a reproductive and sexual health‐care clinic to view a 4‐min video‐clip in the waiting room. Participants completed three questionnaires: (T1) prior to viewing the intervention; (T2) immediately after their consultation; and (T3) two weeks later. Results A total of 121 (78%) participants viewed the video‐clip before their consultation. Eighty‐four (69%) participants asked one or more questions, and 35 (29%) participants asked all three questions. For those making a decision, 55 (87%) participants asked one or more questions, while 27 (43%) participants asked all three questions. Eighty‐seven (72%) participants recommended the questions. After two weeks, 47 (49%) of the participants recalled the questions. Conclusions Enabling patients to view a short video‐clip before an appointment to improve information and involvement in health‐care consultations is feasible and led to a high uptake of question asking in consultations. Practice Implications This AskShareKnow programme is a simple and feasible method of training patients to use a brief consumer‐targeted intervention that has previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement and use of evidence‐based questions.

  September 14, 2015   doi: 10.1111/hex.12409   open full text
• An exploration of strategies used by older people to obtain information about health‐ and social care services in the community.
  Margaret Mc Grath, Kathleen Clancy, Anne Kenny.
  Health Expectations. September 08, 2015
  Purpose To explore the strategies used by older people living in Ireland to obtain information about community health and social services. Methods A qualitative exploratory design was used. Focus groups (n = 3) were conducted with community dwelling older people (n = 17). A series of vignettes were used to guide discussion regarding hypothetical situations that approximated real‐life scenarios for older people. Data were transcribed verbatim and analysed using content analysis. Results Obtaining information about community health and social services is an ongoing process that requires continuous commitment by older adults. Key strategies which emerged from the data included (i) taking a proactive stance towards accessing health information, (ii) making use of personal networks in your community and (iii) developing ‘insider’ knowledge. Conclusion Older people in this study had a proactive approach to obtaining health information and identified the importance of taking responsibility for managing their own needs. Despite this, obtaining basic information about community health and social services was a challenging and time‐consuming process. Future research should focus on developing health literacy interventions that build upon and expand the strategies currently used by older people.

  September 08, 2015   doi: 10.1111/hex.12408   open full text
• Patient and family involvement in adult critical and intensive care settings: a scoping review.
  Michelle Olding, Sarah E. McMillan, Scott Reeves, Madeline H. Schmitt, Kathleen Puntillo, Simon Kitto.
  Health Expectations. September 07, 2015
  Background Despite international bodies calling for increased patient and family involvement, these concepts remain poorly defined within literature on critical and intensive care settings. Objective This scoping review investigates the extent and range of literature on patient and family involvement in critical and intensive care settings. Methodological and empirical gaps are identified, and a future agenda for research into optimizing patient and family involvement is outlined. Methods Searches of MEDLINE, CINAHL, Social Work Abstracts and PsycINFO were conducted. English‐language articles published between 2003 and 2014 were retrieved. Articles were included if the studies were undertaken in an intensive care or critical care setting, addressed the topic of patient and family involvement, included a sample of adult critical care patients, their families and/or critical care providers. Two reviewers extracted and charted data and analysed findings using qualitative content analysis. Findings A total of 892 articles were screened, 124 were eligible for analysis, including 61 quantitative, 61 qualitative and 2 mixed‐methods studies. There was a significant gap in research on patient involvement in the intensive care unit. The analysis identified five different components of family and patient involvement: (i) presence, (ii) having needs met/being supported, (iii) communication, (iv) decision making and (v) contributing to care. Conclusion Three research gaps were identified that require addressing: (i) the scope, extent and nature of patient involvement in intensive care settings; (ii) the broader socio‐cultural processes that shape patient and family involvement; and (iii) the bidirectional implications between patient/family involvement and interprofessional teamwork.

  September 07, 2015   doi: 10.1111/hex.12402   open full text
• ‘I should have taken that further’ – missed opportunities during cardiovascular risk assessment in patients with psoriasis in UK primary care settings: a mixed‐methods study.
  Pauline A. Nelson, Karen Kane, Anna Chisholm, Christina J. Pearce, Christopher Keyworth, Martin K. Rutter, Carolyn A. Chew‐Graham, Christopher E.M. Griffiths, Lis Cordingley,.
  Health Expectations. September 04, 2015
  Background Unhealthy lifestyle is common in psoriasis, contributing to worsening disease and increased cardiovascular disease (CVD) risk. CVD risk communication should improve patients’ understanding of risk and risk‐reducing behaviours; however, the effectiveness of risk screening is debated and evaluation currently limited. Objective To examine the process of assessing for and communicating about CVD risk in the context of psoriasis. Design Mixed‐methods study in English general practices to (i) determine proportions of CVD risk factors among patients with psoriasis at risk assessment and (ii) examine patient and practitioner experiences of risk communication to identify salient ‘process’ issues. Audio recordings of consultations informed in‐depth interviews with patients and practitioners using tape‐assisted recall, analysed with framework analysis. Participants Patients with psoriasis (n = 287) undergoing CVD risk assessment; 29 patients and 12 practitioners interviewed. Results A high proportion of patients had risk factor levels apparent at risk assessment above NICE recommendations: very high waist circumference (52%), obesity (35%), raised blood pressure (29%), smoking (18%) and excess alcohol consumption (18%). There was little evidence of personalized discussion about CVD risk and behaviour change support in consultations. Professionals reported a lack of training in behaviour change, while patients wanted to discuss CVD risk/risk reduction and believed practitioners to be influential in supporting lifestyle management. Conclusions Despite high levels of risk factors identified, opportunities may be missed in consultations to support patients with psoriasis to understand CVD risk/risk reduction. Practitioners need training in behaviour change techniques to capitalize on ‘teachable moments’ and increase the effectiveness of risk screening.

  September 04, 2015   doi: 10.1111/hex.12404   open full text
• Public preferences for communicating personal genomic risk information: a focus group study.
  Amelia K. Smit, Louise A. Keogh, Jolyn Hersch, Ainsley J. Newson, Phyllis Butow, Gabrielle Williams, Anne E. Cust.
  Health Expectations. September 01, 2015
  Background Personalized genomic risk information has the potential to motivate behaviour change and promote population health, but the success of this will depend upon effective risk communication strategies. Objective To determine preferences for different graphical and written risk communication formats, and the delivery of genomic risk information including the mode of communication and the role of health professionals. Design Focus groups, transcribed and analysed thematically. Participants Thirty‐four participants from the public. Methods Participants were provided with, and invited to discuss, a hypothetical scenario giving an individual's personalized genomic risk of melanoma displayed in several graphical formats. Results Participants preferred risk formats that were familiar and easy to understand, such as a ‘double pie chart’ and ‘100 person diagram’ (pictograph). The 100 person diagram was considered persuasive because it humanized and personalized the risk information. People described the pie chart format as resembling bank data and food (such as cake and pizza). Participants thought that email, web‐based platforms and postal mail were viable options for communicating genomic risk information. However, they felt that it was important that a health professional (either a genetic counsellor or ‘informed’ general practitioner) be available for discussion at the time of receiving the risk information, to minimize potential negative emotional responses and misunderstanding. Face‐to‐face or telephone delivery was preferred for delivery of high‐risk results. Conclusions These public preferences for communication strategies for genomic risk information will help to guide translation of genome‐based knowledge into improved population health.

  September 01, 2015   doi: 10.1111/hex.12406   open full text
• A concept mapping study evaluating the UK's first NHS generic fatigue clinic.
  Katie L. Hackett, Rebecca L. Lambson, Victoria Strassheim, Zoe Gotts, Vincent Deary, Julia L Newton.
  Health Expectations. September 01, 2015
  Importance Fatigue is a significant and debilitating symptom affecting 25% of the population. It occurs in those with a range of chronic diseases, can be idiopathic and in 0.2–0.4% of the UK population occurs in combination with other symptoms that together constitute chronic fatigue syndrome (CFS). Until recently, NHS clinical services only focussed upon CFS and excluded the majority of fatigued patients who did not meet the CFS diagnostic criteria. The CRESTA Fatigue interdisciplinary clinic was established in 2013 in response to this unmet need. Objective To identify the service needs of the heterogeneous group of patients accessing the CRESTA Fatigue Clinic, to prioritize these needs, to determine whether each is being met and to plan targeted service enhancements. Design Using a group concept mapping approach, we objectively identified the shared understanding of service users accessing this novel clinic. Setting NHS Clinics for Research & Service in Themed Assessment (CRESTA) Fatigue Clinic, Newcastle Upon Tyne, UK. Participants Patients (n = 30) and referrers (n = 10) to the CRESTA Fatigue Clinic contributed towards a statement generation exercise to identify ways the clinic could support service users to improve their quality of life. Patients (n = 46) participated in the sorting and rating task where resulting statements were sorted into groups similar in meaning and rated for ‘importance’ and ‘current success’. Main outcome and measure We mapped the needs of patients attending the CRESTA Fatigue Clinic and identified which high‐priority needs were being successfully met and which were not. Results Multidimensional scaling and hierarchical cluster analysis depicted the following eight themed clusters from the data which related to various service‐user requirements: ‘clinic ethos’, ‘communication’, ‘support to self‐manage’, ‘peer support’, ‘allied health services’, ‘telemedicine’, ‘written information’ and ‘service operation’. Service improvement targets were identified within value bivariate plots of the statements. Conclusion and Relevance Service development concepts were grouped into thematic clusters and prioritized for both importance and current success. The resulting concept maps depict where the CRESTA Fatigue Clinic successfully addresses issues which matter to patients and highlights areas for service enhancement. Unmet needs of patients have been identified in a rigorous service evaluation, and these are currently being addressed in collaboration with a service‐user group.

  September 01, 2015   doi: 10.1111/hex.12405   open full text
• Utilization of community pharmacy space to enhance privacy: a qualitative study.
  H Laetitia Hattingh, Lynne Emmerton, Pascale Ng Cheong Tin, Catherine Green.
  Health Expectations. August 31, 2015
  Background Community pharmacists require access to consumers’ information about their medicines and health‐related conditions to make informed decisions regarding treatment options. Open communication between consumers and pharmacists is ideal although consumers are only likely to disclose relevant information if they feel that their privacy requirements are being acknowledged and adhered to. Objective This study sets out to explore community pharmacy privacy practices, experiences and expectations and the utilization of available space to achieve privacy. Methods Qualitative methods were used, comprising a series of face‐to‐face interviews with 25 pharmacists and 55 pharmacy customers in Perth, Western Australia, between June and August 2013. Results The use of private consultation areas for certain services and sensitive discussions was supported by pharmacists and consumers although there was recognition that workflow processes in some pharmacies may need to change to maximize the use of private areas. Pharmacy staff adopted various strategies to overcome privacy obstacles such as taking consumers to a quieter part of the pharmacy, avoiding exposure of sensitive items through packaging, lowering of voices, interacting during pharmacy quiet times and telephoning consumers. Pharmacy staff and consumers regularly had to apply judgement to achieve the required level of privacy. Discussion Management of privacy can be challenging in the community pharmacy environment, and on‐going work in this area is important. As community pharmacy practice is increasingly becoming more involved in advanced medication and disease state management services with unique privacy requirements, pharmacies’ layouts and systems to address privacy challenges require a proactive approach.

  August 31, 2015   doi: 10.1111/hex.12401   open full text
• Investigating client perception and attitude to decentralization of HIV/AIDS treatment services to primary health centres in three Nigerian states.
  Obinna Onwujekwe, Ifeanyi Chikezie, Chinyere Mbachu, Robert Chiegil, Kwasi Torpey, Benjamin Uzochukwu.
  Health Expectations. August 28, 2015
  Background The opinions of consumers in decentralization provide insights into possible levels of improvement in access and uptake of services. Objectives The study examined clients' perception and attitude towards decentralization of antiretroviral treatment services from central hospitals to primary health centres (PHCs). Methodology A cross‐sectional survey was undertaken in three states in Nigeria. A total of 1265 exit interviews were conducted with HIV/AIDS clients in nine health facilities. Findings About a third of all the respondents were not comfortable with receiving ART services in a PHC facility close to where they live. The reasons given by 385 respondents who would not want their treatment centres near were as follows: fear of disclosure, 299 (80.4%); fear of being discriminated against, 278 (74.3%); and satisfaction with care received at current facility, 278 (74.3%). However, more than 90% of respondents in all three states felt that decentralization of ART services to PHCs would be beneficial in controlling HIV/AIDS in Nigeria; the difference in respondents' perception across the three state was found to be statistically significant (P < 0.001). Conclusion The findings imply that scaling‐up of treatment services to PHCs would be widely accepted, and probably result in increased uptake. However, this must be accompanied by targeted behaviour change interventions for clients who for the fear of disclosure and stigma would still not access care from proximate facilities.

  August 28, 2015   doi: 10.1111/hex.12403   open full text
• Collaborative learning framework for online stakeholder engagement.
  Dmitry Khodyakov, Terrance D. Savitsky, Siddhartha Dalal.
  Health Expectations. August 21, 2015
  Background Public and stakeholder engagement can improve the quality of both research and policy decision making. However, such engagement poses significant methodological challenges in terms of collecting and analysing input from large, diverse groups. Objective To explain how online approaches can facilitate iterative stakeholder engagement, to describe how input from large and diverse stakeholder groups can be analysed and to propose a collaborative learning framework (CLF) to interpret stakeholder engagement results. Methods We use ‘A National Conversation on Reducing the Burden of Suicide in the United States’ as a case study of online stakeholder engagement and employ a Bayesian data modelling approach to develop a CLF. Results Our data modelling results identified six distinct stakeholder clusters that varied in the degree of individual articulation and group agreement and exhibited one of the three learning styles: learning towards consensus, learning by contrast and groupthink. Learning by contrast was the most common, or dominant, learning style in this study. Conclusion Study results were used to develop a CLF, which helps explore multitude of stakeholder perspectives; identifies clusters of participants with similar shifts in beliefs; offers an empirically derived indicator of engagement quality; and helps determine the dominant learning style. The ability to detect learning by contrast helps illustrate differences in stakeholder perspectives, which may help policymakers, including Patient‐Centered Outcomes Research Institute, make better decisions by soliciting and incorporating input from patients, caregivers, health‐care providers and researchers. Study results have important implications for soliciting and incorporating input from stakeholders with different interests and perspectives.

  August 21, 2015   doi: 10.1111/hex.12383   open full text
• Health e‐mavens: identifying active online health information users.
  Ye Sun, Miao Liu, Melinda Krakow.
  Health Expectations. August 21, 2015
  Background Given the rapid increase of Internet use for effective health communication, it is important for health practitioners to be able to identify and mobilize active users of online health information across various web‐based health intervention programmes. We propose the concept ‘health e‐mavens’ to characterize individuals actively engaged in online health information seeking and sharing activities. Objectives This study aimed to address three goals: (i) to test the factor structure of health e‐mavenism, (ii) to assess the reliability and validity of this construct and (iii) to determine what predictors are associated with health e‐mavenism. Methods This study was a secondary analysis of nationally representative data from the 2010 Health Tracking Survey. We assessed the factor structure of health e‐mavenism using confirmatory factor analysis and examined socio‐demographic variables, health‐related factors and use of technology as potential predictors of health e‐mavenism through ordered regression analysis. Results Confirmatory factor analyses showed that a second‐order two‐factor structure best captured the health e‐maven construct. Health e‐mavenism comprised two second‐order factors, each encompassing two first‐order dimensions: information acquisition (consisting of information tracking and consulting) and information transmission (consisting of information posting and sharing). Both first‐order and second‐order factors exhibited good reliabilities. Several factors were found to be significant predictors of health e‐mavenism. Discussion and conclusion This study offers a starting point for further inquiries about health e‐mavens. It is a fruitful construct for health promotion research in the age of new media technologies. We conclude with specific recommendations to further develop the health e‐maven concept through continued empirical research.

  August 21, 2015   doi: 10.1111/hex.12398   open full text
• Medical terminology in online patient–patient communication: evidence of high health literacy?
  Antoinette M. Fage‐Butler, Matilde Nisbeth Jensen.
  Health Expectations. August 19, 2015
  Background Health communication research and guidelines often recommend that medical terminology be avoided when communicating with patients due to their limited understanding of medical terms. However, growing numbers of e‐patients use the Internet to equip themselves with specialized biomedical knowledge that is couched in medical terms, which they then share on participatory media, such as online patient forums. Objective Given possible discrepancies between preconceptions about the kind of language that patients can understand and the terms they may actually know and use, the purpose of this paper was to investigate medical terminology used by patients in online patient forums. Design Using data from online patient–patient communication where patients communicate with each other without expert moderation or intervention, we coded two data samples from two online patient forums dedicated to thyroid issues. Results Previous definitions of medical terms (dichotomized into technical and semi‐technical) proved too rudimentary to encapsulate the types of medical terms the patients used. Therefore, using an inductive approach, we developed an analytical framework consisting of five categories of medical terms: dictionary‐defined medical terms, co‐text‐defined medical terms, medical initialisms, medication brand names and colloquial technical terms. The patients in our data set used many medical terms from all of these categories. Discussion and conclusions Our findings suggest the value of a situated, condition‐specific approach to health literacy that recognizes the vertical kind of knowledge that patients with chronic diseases may have. We make cautious recommendations for clinical practice, arguing for an adaptive approach to medical terminology use with patients.

  August 19, 2015   doi: 10.1111/hex.12395   open full text
• Rights and duties policy implementation in Chile: health‐care professionals’ perceptions.
  Constanza R. Barrera, Camila P. Negrón, R. Mauricio Barría, Claudio A. Méndez.
  Health Expectations. August 18, 2015
  Objective To explore the perceptions of health professionals in an integrated network of public provision of health services regarding the implementation of the Law on Rights and Duties of People in Chile. Method Qualitative descriptive study. A stratified qualitative sample of 53 professionals from five low complexity centres and one from a high complexity centre, all part of the integrated network of health services in Valdivia, Los Rios Region, Chile, were selected according to the criteria of an overall saturation of the explored dimensions. The information was gathered through a semi‐structured, in‐depth interview carried out after signing the informed consent. Data were analysed using an inductive approach of content analysis. Results Three categories emerged from the interviews: conceptualization and knowledge, factors influencing the implementation and recommendations for strengthening the implementation, and seven subcategories. It was highlighted that health professionals in the health‐care network perceived difficulties in implementing the Law on rights and duties of patients. Among them were the lack of knowledge about the Law, poor exposure and a lack of resources for its implementation. They suggested adapting the infrastructure of the institution and offering training as recommendations to improve the implementation of the Law. Conclusions There are hindering factors for the implementation of the Law related to organizational and professional gaps in the institutions providing health care.

  August 18, 2015   doi: 10.1111/hex.12396   open full text
• Evolving ‘self’‐management: exploring the role of social network typologies on individual long‐term condition management.
  Rebecca L. Morris, Anne Kennedy, Caroline Sanders.
  Health Expectations. August 18, 2015
  Background Whilst there has been a focus on the importance of social support for managing long‐term conditions, there has been little specific focus on the characteristics of social networks that shape self‐management. Policy emphasis is placed on individual responsibility for self‐care, and this influences commissioning of health‐care services. Assumptions are often made by policymakers about accessibility and preference for support and the influence of the social context on chronic illness management. Objective To examine the social networks of individuals with long‐term conditions and identify how the characteristics of their composition influences support needs. Design, setting and participants Thirty participants completed initial face‐to‐face in‐depth interviews, telephone follow‐ups and final face‐to‐face interviews in the north‐west of England. A longitudinal qualitative design was used to elicit the subtle changes in relationships over a year. Findings The findings suggest that the relationships which constitute a social network influence perceived support needs and attitudes to self‐management. The amalgamation of relationships was characterized into three network typologies (family focused, friend focused or health‐care professional focused) according to which types of relationships were dominant. In the absence of support, accounts highlighted a small number of substitutes who could provide support at times of critical need. Discussion This study challenges the notion of ‘self’‐management as an individual construct as many of the practices of illness management involved the support and/or negotiation of roles with others. By examining the nuances of relationships, this study has highlighted the tacit boundaries of practical and emotional support provision.

  August 18, 2015   doi: 10.1111/hex.12394   open full text
• Patient‐defined goals for the treatment of severe aortic stenosis: a qualitative analysis.
  Megan Coylewright, Roseanne Palmer, Elizabeth S. O'Neill, John F. Robb, Terri R. Fried.
  Health Expectations. August 14, 2015
  Background Patients with severe aortic stenosis (AS) at high risk for aortic valve replacement are a unique population with multiple treatment options, including medical therapy, surgical aortic valve replacement and transcatheter aortic valve replacement (TAVR). Traditionally, in elderly populations, goals of treatment may favour quality of life over survival. Professional guidelines recommend that clinicians engage patients in shared decision making, a process that may lead to decisions more aligned with patient‐defined goals of care. Goals of care for high‐risk patients with AS are not well defined in the literature, and patient‐reported barriers to shared decision making highlight the need for explicit encouragement from clinicians for patient involvement. Objective The purpose of this study was to elicit and report patient‐defined goals from elderly patients facing treatment decisions for severe AS. Methods This analysis was conducted at Dartmouth‐Hitchcock Medical Center, an academic medical institution. In a retrospective manner, we qualitatively analysed goal statements reported by high‐risk, elderly patients with severe AS evaluated for TAVR between June 2012 and August 2014. Results Forty‐six patients provided treatment goals during consideration of TAVR and defined preferred outcomes as maintaining independence, staying alive, reducing symptoms or, most commonly, increasing their ability to do a specific activity or hobby. Conclusions In the high‐risk patient population considering TAVR, patient‐reported goals may be obtained with a simple question delivered during the clinical encounter. Encouraging patients to define their goals may lead to a greater degree of shared decision making, as advocated in current professional guidelines.

  August 14, 2015   doi: 10.1111/hex.12393   open full text
• Shared decision making for psychiatric medication management: beyond the micro‐social.
  Nicola Morant, Emma Kaminskiy, Shulamit Ramon.
  Health Expectations. August 10, 2015
  Background Mental health care has lagged behind other health‐care domains in developing and applying shared decision making (SDM) for treatment decisions. This is despite compatibilities with ideals of modern mental health care such as self‐management and recovery‐oriented practice, and growing policy‐level interest. Psychiatric medication is a mainstay of mental health treatment, but there are known problems with prescribing practices, and service users report feeling uninvolved in medication decisions and concerned about adverse effects. SDM has potential to produce better tailoring of psychiatric medication to individuals' needs. Objectives This conceptual review argues that several aspects of mental health care that differ from other health‐care contexts (e.g. forms of coercion, questions about service users' insight and disempowerment) may impact on processes and possibilities for SDM. It is therefore problematic to uncritically import models of SDM developed in other health‐care contexts. We argue that decision making for psychiatric medication is better understood in a broader way that moves beyond the micro‐social focus of a medical consultation. Contextualizing specific medication‐related consultations within longer term relationships, and broader service systems enables recognition of the multiple processes, actors and agendas that shape how psychiatric medication is prescribed, managed and used, and which may facilitate or impede SDM. Conclusion A broad conceptualization of decision making for psychiatric medication that moves beyond the micro‐social can account for why SDM in this domain remains a rarity. It has both conceptual and practical utility for evaluating research evidence, identifying future research priorities and highlighting fruitful ways of developing and implementing SDM in mental health care.

  August 10, 2015   doi: 10.1111/hex.12392   open full text
• People with insomnia: experiences with sedative hypnotics and risk perception.
  Janet M. Y. Cheung, Delwyn J. Bartlett, Carol L. Armour, Jason G. Ellis, Bandana Saini.
  Health Expectations. August 03, 2015
  Background Sedative hypnotics form an important part of managing insomnia and are recommended for short‐term use. It is standard practice for clinicians to inform the patient to use medications only ‘when required’, but the use of these medications is often chronic. Little is known about the impact of standard labelling/instructions on promoting appropriate medication use for managing insomnia. Objective To explore patient medication‐taking beliefs, experiences and behavioural practices relating to the use of pharmacological/complementary sleep aids for insomnia. Setting and Participants Specialist sleep/psychology clinics and the general community in Sydney, Australia. Method Semi‐structured interviews were conducted with 51 people with insomnia using a schedule of questions to gauge their experiences, beliefs and current practices relating to insomnia medication use. Interviews were audio‐recorded, transcribed verbatim and subjected to Framework Analysis to identify emergent themes. Results Participants held distinctive views about the safety and efficacy of complementary and pharmacological agents but do not intuitively turn to medications to resolve their sleep complaint. Medication use was affirmed through tangible medication‐taking cues due to the ambivalence in current instructions and labelling. Practices such as dosage modification, medication substitution and delaying medication use might be important drivers for psychological dependence. Conclusion Current labelling and instructions do not necessarily promote the quality use of sedative hypnotics due to the variability in patient interpretations. Clarifying the timing, quantity and frequency of medication administration as well as insomnia symptom recognition would play a significant role in optimizing the role of pharmacotherapy in the management of insomnia.

  August 03, 2015   doi: 10.1111/hex.12388   open full text
• Development and psychometric evaluation of a measure to evaluate the quality of integrated care: the Patient Assessment of Integrated Elderly Care.
  Ronald J. Uittenbroek, Sijmen A. Reijneveld, Roy E. Stewart, Sophie L.W. Spoorenberg, Hubertus P.H. Kremer, Klaske Wynia.
  Health Expectations. July 31, 2015
  Background Novel population‐based integrated care services are being developed to adequately serve the growing number of elderly people. Suitable, reliable and valid measurement instruments are needed to evaluate the quality of care delivered. Objective To develop a measure to evaluate the quality of integrated care from the perspective of elderly people, the Patient Assessment of Integrated Elderly Care (PAIEC), and then to assess its psychometric properties. Methods/Design After the Patient Assessment of Chronic Illness Care was adapted to the PAIEC, a cross‐sectional postal‐survey study was performed among 223 elderly people who received integrated elderly care and support. We assessed the factor structure, internal consistency, known groups and divergent validity using robust nonparametric tests. Results Mean age of participants was 83 years (standard deviation 4.7), and 69% was female. The original five‐factor model was rejected; a good fit was found for a three‐factor model, when excluding the item on patients' satisfaction with care. The PAIEC and its subscales showed good internal consistency (ordinal alphas > 0.90). Known‐groups validity was supported regarding number of medications, prevalence of chronic conditions and home care received. No differences were found between groups based on sociodemographic aspects. Divergent validity was supported by low correlations (Spearman's rank correlation coefficients < 0.30) between PAIEC scales and measures of quality of life, complexity of care needs and frailty. Conclusion The PAIEC seems to have considerable potential as a reliable and valid measurement instrument that evaluates quality of integrated care and support from the perspective of elderly people.

  July 31, 2015   doi: 10.1111/hex.12391   open full text
• ‘It's all there in black and white’ – or is it? Consumer perspectives on the proposed Australian Medicine Information Box over‐the‐counter label format.
  Vivien Tong, David K. Raynor, Parisa Aslani.
  Health Expectations. July 31, 2015
  Background Over‐the‐counter (OTC) labels help support safe medication use by consumers. In 2012, the Australian Therapeutic Goods Administration (TGA) released a consultation paper proposing OTC label standardization to improve label quality via implementation of the Medicine Information Box (MIB) label. However, consumer opinions of the MIB and standardization of OTC labelling remain unexplored. Objective To explore consumer perspectives of OTC label standardization and the proposed MIB. Design Mock MIB labels were developed by the research team, guided by the TGA consultation paper, and used as interview stimulus material. Participants and setting Semi‐structured interviews were conducted with 38 Australian and 39 UK adult participants. Participant perspectives on OTC label standardization, opinions on the MIB and perceived improvements were explored. All interviews were audio‐recorded with permission, transcribed verbatim, and the content thematically analysed. Results Participants expressed a range of opinions towards OTC label standardization, from welcoming standardization to concern that important details may be overlooked. The MIB was generally positively received due to its perceived good information design and ease of navigation. Participants requested reordering of information‐specifically, for the active ingredient to be moved to a less prominent position. Suggested improvements centred on content and design changes, for example colour, pictograms, bolding. Conclusions Participants felt positively towards OTC label standardization and saw the MIB as a feasible standardized format to implement for OTC labels. Although they appreciated its good information design, they felt further improvements to its content and design are required to enhance its quality and usability.

  July 31, 2015   doi: 10.1111/hex.12389   open full text
• Awareness of cervical cancer risk factors and symptoms: cross‐sectional community survey in post‐conflict northern Uganda.
  Amos D. Mwaka, Christopher G. Orach, Edward M. Were, Georgios Lyratzopoulos, Henry Wabinga, Martin Roland.
  Health Expectations. July 23, 2015
  Background Lack of awareness of risk factors and symptoms for cancer may lead to late diagnosis and poor prognosis. Objective We assessed community awareness about cervical cancer risk factors and symptoms and perceptions about prevention and cure of cervical cancer in order to contribute data to inform interventions to improve cervical cancer survival. Design Cross‐sectional population‐based survey. Setting and participants We conducted this study in Gulu, a post‐conflict district in Uganda in 2012. The sample included 448 persons aged 18 years and above, selected through a multi‐stage stratified cluster sampling process. Data collection methods and analysis We collected data using a pretested structured questionnaire. Logistic regressions were used to determine magnitudes of associations between socio‐demographic and outcome variables. Results Most participants (444/448) had heard about cervical cancer. Known risk factors including multiple sexual partners, human papillomavirus infection, and early onset of sexual activity, were recognized by 88%, 82%, and 78% of respondents respectively. 63% of participants believed that prolonged use of family planning pills and injections caused cervical cancer. The majority of participants recognized symptoms of cervical cancer including inter‐menstrual bleeding (85%), post‐menopausal bleeding (84%), and offensive vaginal discharge (83%). 70% of participants believed that cervical cancer is preventable and 92% believed that it could be cured if diagnosed at an early stage. Discussion and conclusions Recognition of cervical cancer risk factors and symptoms was high among study participants. Targeted interventions including increasing availability of HPV vaccination, population‐based cervical screening and diagnostic services can translate high awareness into actual benefits.

  July 23, 2015   doi: 10.1111/hex.12382   open full text
• Disclosure of research results: a randomized study on GENEPSO‐PS cohort participants.
  Julien Mancini, Elodie Le Cozannet, Anne‐Déborah Bouhnik, Noémie Resseguier, Christine Lasset, Emmanuelle Mouret‐Fourme, Catherine Noguès, Claire Julian‐Reynier.
  Health Expectations. July 23, 2015
  Background There exist no recommendations as to how aggregate research results should best be disclosed to long‐term cohort participants. Objective To study the impact of cohort results disclosure documents of various kinds on participants’ satisfaction. Design Randomized study with a 2x2 factorial design. Setting and participants The GENEPSO‐PS cohort is used to study the psychosocial characteristics and preventive behaviour of both BRCA1/2 carriers and non‐carriers; 235 participants wishing to receive ‘information about the survey results’ answered a self‐administered questionnaire. Interventions The impact of providing the following items in addition to a leaflet about aggregate psychosocial research results was investigated (i) an up‐to‐date medical information sheet about BRCA1/2 genetic topics, (ii) a photograph with the names of the researchers. Main outcome measures Satisfaction profiles drawn up using cluster analysis methods. Results Providing additional medical and/or research team information had no significant effect on satisfaction. The patients attributed to the ‘poorly satisfied’ group (n = 60, 25.5%) differed significantly from those in the ‘highly satisfied’ group (n = 51, 21.7%): they were younger [odds ratio (OR) = 0.96, 95% confidence interval (0.92–0.99), P = 0.028], less often had a daughter [OR = 4.87 (1.80–13.20), P = 0.002], had reached a higher educational level [OR = 2.94 (1.24–6.95), P = 0.014] and more frequently carried a BRCA1/2 mutation [OR = 2.73 (1.20–6.23), P = 0.017]. Conclusions This original approach to disclosing research results to cohort participants was welcomed by most of the participants, but less by the more educated and by BRCA1/2 carriers. Although an easily understandable document is necessary, it might also be worth providing some participants with more in‐depth information.

  July 23, 2015   doi: 10.1111/hex.12390   open full text
• Health literacy–listening skill and patient questions following cancer prevention and screening discussions.
  Kathleen M. Mazor, Donald L. Rubin, Douglas W. Roblin, Andrew E. Williams, Paul K. J. Han, Bridget Gaglio, Sarah L. Cutrona, Mary E. Costanza, Joann L. Wagner.
  Health Expectations. July 22, 2015
  Objective Patient question‐asking is essential to shared decision making. We sought to describe patients' questions when faced with cancer prevention and screening decisions, and to explore differences in question‐asking as a function of health literacy with respect to spoken information (health literacy–listening). Methods Four‐hundred and thirty‐three (433) adults listened to simulated physician–patient interactions discussing (i) prophylactic tamoxifen for breast cancer prevention, (ii) PSA testing for prostate cancer and (iii) colorectal cancer screening, and identified questions they would have. Health literacy–listening was assessed using the Cancer Message Literacy Test‐Listening (CMLT‐Listening). Two authors developed a coding scheme, which was applied to all questions. Analyses examined whether participants scoring above or below the median on the CMLT‐Listening asked a similar variety of questions. Results Questions were coded into six major function categories: risks/benefits, procedure details, personalizing information, additional information, decision making and credibility. Participants who scored higher on the CMLT‐Listening asked a greater variety of risks/benefits questions; those who scored lower asked a greater variety of questions seeking to personalize information. This difference persisted after adjusting for education. Conclusion Patients' health literacy–listening is associated with distinctive patterns of question utilization following cancer screening and prevention counselling. Providers should not only be responsive to the question functions the patient favours, but also seek to ensure that the patient is exposed to the full range of information needed for shared decision making.

  July 22, 2015   doi: 10.1111/hex.12387   open full text
• Getting it right! Enhancing youth involvement in mental health research.
  Lauren Mawn, Patrick Welsh, Lauren Kirkpatrick, Lisa A.D. Webster, Helen J. Stain.
  Health Expectations. July 22, 2015
  Background Few studies relating to youth mental health have actively involved young people in the design and conduct of research. Aims This qualitative study explores the perceptions of young people about involving them in mental health research. Method An opportunistic sample of eight young people (aged 14–24 years) from non‐statutory mental health organizations was interviewed. Interviews were transcribed verbatim, and inductive thematic analysis was conducted. Results Six key themes emerged reflecting a desire for young people to have the opportunity to actively contribute to every stage of the research process. Meaningful research involvement was perceived as offering opportunities to develop personal skills, contribute to making a difference and ensuring research projects were more relevant. Conclusions Young people with an active interest in mental health promotion demonstrate a desire to be involved in research with training in research methods likely to facilitate this process. Researchers need training on how best to actively and meaningfully involve young people in mental health research.

  July 22, 2015   doi: 10.1111/hex.12386   open full text
• ‘I just don't want to get bullied anymore, then I can lead a normal life’; Insights into life as an obese adolescent and their views on obesity treatment.
  Lindsey J. Reece, Paul Bissell, Robert J. Copeland.
  Health Expectations. July 17, 2015
  Background Adolescent obesity is a complex condition involving social, emotional, behavioural and cultural issues. Design One‐to‐one interviews and small focus groups with overweight and obese young people were conducted. Qualitative research is an appropriate method to explore the complexity of this issue. Setting and participants Overweight and obese adolescent's attending a community weight management intervention in South Yorkshire. Main variables studied Interviews aimed to explore the experiences of obese adolescents and their perspectives towards obesity treatment. Results Adolescent's provided detailed accounts of their perspectives on weight gain, alluding to disordered patterns of eating and overeating, reported as being triggered by social and emotional factors, and in particular, bullying. Avoidance of bullying and a desire to integrate socially with peers were key drivers to seek treatment. Young people reported what they should do to lose weight, yet responsibility for successful weight loss and lifestyle change was repeatedly attributed to the treatment received, as opposed to viewing this as a combination of self‐motivation coupled with support provided by friends and family. Conclusion Weight loss programmes need to consider the complex experience of obese young people in their design, focusing on how to implement long‐term lifestyle changes.

  July 17, 2015   doi: 10.1111/hex.12385   open full text
• ‘Talk to me’: a mixed methods study on preferred physician behaviours during end‐of‐life communication from the patient perspective.
  Amane Abdul‐Razzak, Diana Sherifali, John You, Jessica Simon, Kevin Brazil.
  Health Expectations. July 14, 2015
  Background Despite the recognized importance of end‐of‐life (EOL) communication between patients and physicians, the extent and quality of such communication is lacking. Objective We sought to understand patient perspectives on physician behaviours during EOL communication. Design In this mixed methods study, we conducted quantitative and qualitative strands and then merged data sets during a mixed methods analysis phase. In the quantitative strand, we used the quality of communication tool (QOC) to measure physician behaviours that predict global rating of satisfaction in EOL communication skills, while in the qualitative strand we conducted semi‐structured interviews. During the mixed methods analysis, we compared and contrasted qualitative and quantitative data. Setting and Participants Seriously ill inpatients at three tertiary care hospitals in Canada. Results We found convergence between qualitative and quantitative strands: patients desire candid information from their physician and a sense of familiarity. The quantitative results (n = 132) suggest a paucity of certain EOL communication behaviours in this seriously ill population with a limited prognosis. The qualitative findings (n = 16) suggest that at times, physicians did not engage in EOL communication despite patient readiness, while sometimes this may represent an appropriate deferral after assessment of a patient's lack of readiness. Conclusions Avoidance of certain EOL topics may not always be a failure if it is a result of an assessment of lack of patient readiness. This has implications for future tool development: a measure could be built in to assess whether physician behaviours align with patient readiness.

  July 14, 2015   doi: 10.1111/hex.12384   open full text
• Patient communication pattern scale: psychometric characteristics.
  Sara Ilan, Sara Carmel.
  Health Expectations. July 14, 2015
  Background In western societies, a shared decision‐making model for doctor–patient relationships calling for open and collaborative communication is recommended. Research focuses mainly on the doctor's communication patterns, while research on patient communication patterns is rare. The purpose of this study was to develop a tool for evaluating patient's communication patterns – the Patient Communication Pattern Scale (PCPS). Methods Interviews based on structured questionnaires were conducted with 251 cancer patients. In addition to the 14‐item PCPS, the questionnaire included questions regarding education, religiosity and desirability of control in general and over one's own health in particular, for validating the scale. Results The PCPS was found to be a valid and reliable tool for evaluating patients' communication patterns. Confirmatory factor analysis supported the PCPS designed structure of five facets: (1) Information, (2) Clarification, (3) Initiation, (4) Preferences and (5) Emotions. Conclusion The PCPS is a reliable scale for evaluating patient communication patterns. The use of this scale can assist in promoting related research and in developing interventions for enhancing open and collaborative doctor–patient communication.

  July 14, 2015   doi: 10.1111/hex.12381   open full text
• Measurement challenges in shared decision making: putting the ‘patient’ in patient‐reported measures.
  Paul J. Barr, Glyn Elwyn.
  Health Expectations. June 25, 2015
  Measuring clinicians' shared decision‐making (SDM) performance is a key requirement given the intensity of policy interest in many developed countries – yet it remains one of the most difficult methodological challenges, which is a concern for many stakeholders. In this Viewpoint Article, we investigate the development of existing patient‐reported measures (PRMs) of SDM identified in a recent review. We find that patients were involved in the development of only four of the 13 measures. This lack of patient involvement in PRM development is associated with two major threats to content validity, common to all 13 PRMs of SDM: (i) an assumption of patient awareness of ‘decision points’ and (ii) an assumption that there is only one decision point in each healthcare consultation. We provide detailed examples of these threats and their impact on accurate assessment of SDM processes and outcomes, which may hamper efforts to introduce incentives for SDM implementation. We propose cognitive interviewing as a recommended method of involving patients in the design of PRMs in the field of SDM and provide a practical example of this approach.

  June 25, 2015   doi: 10.1111/hex.12380   open full text
• ‘I'm a sick person, not a bad person’: patient experiences of treatments for alcohol use disorders.
  Stacey L McCallum, Antonina A Mikocka‐Walus, Matthew D Gaughwin, Jane M Andrews, Deborah A Turnbull.
  Health Expectations. June 25, 2015
  Background Emerging research indicates that standard treatments for alcohol use disorders may not fully meet the needs of patients with co‐occurring severe mental health symptoms. Investigating health quality indicators may provide insight into how current treatment might be improved. Objective To better understand the experiences of patients receiving treatment for alcohol use disorders and compare the experiences of patients with and without co‐occurring severe mental health symptoms. Design Cross‐sectional qualitative research design using semi‐structured interviews methods and framework analysis approach. Setting Inpatient hospital, outpatient service, inpatient detoxification clinic and a residential/ therapeutic community. Participant's Thirty‐four patients receiving treatment for an alcohol use disorder. Main variables studied Themes relating to patients' experiences of continuity of care, treatment need and satisfaction with treatment were studied. The qualitative data were divided into two groups: patients with (n = 15) and without (n = 19) severe mental health symptoms. Results Five themes relating to patient satisfaction with treatment were identified, including: perceived effectiveness of treatment, supportive relationships, specialized but holistic care, patient autonomy and continuity of care. A diverse range of patient treatment needs, staff and service continuity and stigma were also identified as major themes. Five basic themes were identified as more critical to the experiences of patients with severe mental health symptoms. Discussion and conclusions Findings suggest that patients look for supportive relationships with others, to be involved in treatment decisions, effective specialized and holistic approaches to care and a non‐judgemental treatment environment.

  June 25, 2015   doi: 10.1111/hex.12379   open full text
• Supporting quality public and patient engagement in health system organizations: development and usability testing of the Public and Patient Engagement Evaluation Tool.
  Julia Abelson, Kathy Li, Geoff Wilson, Kristin Shields, Colleen Schneider, Sarah Boesveld.
  Health Expectations. June 25, 2015
  Objectives Only rudimentary tools exist to support health system organizations to evaluate their public and patient engagement (PPE) activities. This study responds to this gap by developing a generic evaluation tool for use in a wide range of organizations. Methods The evaluation tool was developed through an iterative, collaborative process informed by a review of published and grey literature and with the input of Canadian PPE researchers and practitioners. Over a 3‐year period, structured e‐mail, telephone and face‐to‐face exchanges, including a modified Delphi process, were used to produce an evaluation tool that includes core principles of high‐quality engagement, expected outcomes for each principle and three unique evaluation questionnaires that were tested and revised with input from 65 end users. Results The tool is structured around four core principles of ‘quality engagement’: (i) integrity of design and process; (ii) influence and impact; (iii) participatory culture; and (iv) collaboration and common purpose. Three unique questionnaires were developed to assess each of these four evaluation domains from the following perspectives: (i) those who participate in PPE activities; (ii) those who plan, execute or sponsor PPE activities within organizations; and (iii) those who provide the leadership and capacity for PPE within their organizations. Conclusions This is the first known collaboration of researchers and practitioners in the co‐design of a comprehensive PPE evaluation tool aimed at three distinct respondent groups and for use in a wide range of health system organization settings.

  June 25, 2015   doi: 10.1111/hex.12378   open full text
• Biosamples as gifts? How participants in biobanking projects talk about donation.
  Louise Locock, Anne‐Marie R. Boylan.
  Health Expectations. June 12, 2015
  Background In the UK, altruism has featured explicitly as an underpinning principle for biobanking. However, conceptualizing donation as altruistic downplays the role of reciprocity and personal or family benefit. Objective To investigate how biosample donors talk about their donation and whether they regard samples as ‘gifts’. Methods In this qualitative study, 21 people, both healthy volunteers and people with health conditions, who had been invited to give biosamples took part in semi‐structured narrative interviews. The data were transcribed verbatim and thematically analysed. Results The term ‘gift’ was considered appropriate by some, but it also evoked puzzlement, especially in relation to ‘waste’ material (e.g. urine or tumour samples). Whilst ‘giving’ or ‘donating’ were commonly mentioned, the noun ‘gift’ signified something more special and deliberate. Analysis suggested biosamples could be interpreted as gifts in several different ways, including unreserved gift; reciprocal gift; collective gift; unwanted/low‐value gift; and gift as an exaggeration. Discussion and conclusions Although people describe a network of exchange consistent with anthropological understandings of gift relationships, lay (and biomedical) understandings of the term ‘gift’ may differ from anthropological definitions. For donors (and researchers), value is attached to the information derived from the sample, rather than the sample itself. Consequently, when asking people for biosamples, we should avoid using the term ‘gift’. Acknowledging the value of participation and the information the sample holds may mean more to potential donors.

  June 12, 2015   doi: 10.1111/hex.12376   open full text
• A structuration framework for bridging the macro–micro divide in health‐care governance.
  Virginia Bodolica, Martin Spraggon, Gabriela Tofan.
  Health Expectations. June 12, 2015
  Background Extant studies demonstrate that macro (hierarchical) and micro (relational) governance initiatives in health‐care settings continue to be developed in isolation rather than interactively. Government‐driven hierarchical governance endeavours that guide health‐care reforms and medical practice are disconnected from micro‐level physician–patient interactions being unable to account for patient preferences in the macro‐level policymaking. Method/Objective We undertake a review of the recent literature to couch our argument for a unified governance framework for bridging the macro–micro divide in medical contexts. Adopting an interdisciplinary approach to health‐care delivery, we maintain that the (strong) structuration theory provides a fruitful opportunity for narrowing the gap between hierarchical and relational governance. Discussion Emphasizing the coexistence of institutional structures and human agency, the (strong) structuration theory elucidates how macro and micro governance devices shape each other's structure via mutually reinforcing cycles of influence. Micro‐level encounters between patients and physicians give rise to social structures that constitute the constraining and enabling forces through which macro‐level health‐care infrastructures are altered and reproduced over time. Permitting to illustrate how patients' agency can effectively emerge from complex networks of clinical trajectories, the advanced structuration framework for macro–micro governance integration avoids the extremes of paternalism and autonomy through a balanced consideration of professional judgement and patient preferences. Conclusion/Implications The macro–micro integration of governance efforts is a critical issue in both high‐income states, where medical institutions attempt to deploy substantial realignment efforts, and developing nations, which are lagging behind due to leadership weaknesses and lower levels of governmental investment. A key priority for regulators is the identification of relevant systems to support this holistic governance by providing clinicians with needed resources for focusing on patient advocacy and installing enabling mechanisms for incorporating patients' inputs in health‐care reforms and policymaking.

  June 12, 2015   doi: 10.1111/hex.12375   open full text
• Lived experiences of breast cancer survivors after diagnosis, treatment and beyond: qualitative study.
  Faustine Williams, Stephen C. Jeanetta.
  Health Expectations. May 07, 2015
  Background The number of breast cancer survivors has increased since 1990 due to advances in biomedical technology that lead to an increase in early diagnosis and treatment. Research on survivorship has focused on the psychological and treatment aspects of the disease. The goal of this study was focused on exploring the lived experiences of breast cancer survivors from diagnosis, treatment and beyond. Objective To understand the lived experiences of women who are breast cancer survivors. Design, Setting and Participants A purposive sampling strategy was used to recruit participants from two Missouri cancer centres. A total of 15 women breast cancer survivors were interviewed. Findings Three major themes emerged that described the lived experiences of the women. These were factors from the diagnosis and treatment management impacting survivorship, relationship and support system and implication of survivorship. Participants noted that coping with the diagnosis and treatment was a stressful journey and required lots of adjustment and changes. Some developed various techniques such as journaling their activities which provided comfort. In addition, support from family was shared as the key which gave them strength and courage through the different stages of treatment. However, they found it difficult to articulate what survivorship meant. Conclusion Using in‐depth interview techniques, this study shed light on the experiences of women who were diagnosed with breast cancer and have completed treatment. They acknowledged frustration with their diagnosis and body changes. Support received from family and friends helped them cope through their treatment. However, they felt abandoned once the treatment phase was over and were uncertain what survivorhood meant to them.

  May 07, 2015   doi: 10.1111/hex.12372   open full text
• Peer support for CKD patients and carers: overcoming barriers and facilitating access.
  Francesca Taylor, Robin Gutteridge, Carol Willis.
  Health Expectations. February 03, 2015
  Background Peer support is valued by its users. Nevertheless, there is initial low take‐up of formal peer support programmes among patients with chronic kidney disease (CKD), with fewer patients participating than expressing an interest. There is little evidence on reasons for low participation levels. Few studies have examined the perspectives of carers. Objective To explore with CKD patients and carers their needs, wants and expectations from formal peer support and examine how barriers to participation may be overcome. Methods Qualitative interviews with a sample of 26 CKD stage five patients and carers. Principles of Grounded Theory were applied to data coding and analysis. Setting Six NHS Hospital Trusts. Results Whilst informal peer support might occur naturally and is welcomed, a range of emotional and practical barriers inhibit take‐up of more formalized support. Receptivity varies across time and the disease trajectory and is associated with emotional readiness; patients and carers needing to overcome complex psychological hurdles such as acknowledging support needs. Practical barriers include limited understanding of peer support. An attractive peer relationship is felt to involve reciprocity based on sharing experiences and both giving and receiving support. Establishing rapport is linked with development of reciprocity. Conclusions There is potential to facilitate active uptake of formal peer support by addressing the identified barriers. Our study suggests several facilitation methods, brought together in a conceptual model, including clinician promotion of peer support as an intervention suitable for anyone with CKD and their carers, and opportunity for choice of peer supporter.

  February 03, 2015   doi: 10.1111/hex.12348   open full text
• Valued life abilities among veteran cancer survivors.
  Michele J. Karel, Elizabeth A. Mulligan, Annette Walder, Lindsey A. Martin, Jennifer Moye, Aanand D. Naik.
  Health Expectations. January 29, 2015
  Background When patients have multiple chronic illnesses, it is not feasible to provide disease‐based care when treatments for one condition adversely affect another. Instead, health‐care delivery requires a broader person‐centred treatment plan based on collaborative, patient‐oriented values and goals. Objective We examined the individual variability, thematic content, and sociodemographic correlates of valued life abilities and activities among multimorbid veterans diagnosed with life‐altering cancer. Setting and participants Participants were 144 veterans in the ‘Vet‐Cares’ study who completed a health‐care values and goals scale 12 months after diagnosis of head and neck, gastro‐oesophageal, or colorectal cancer. They had mean age of 65 years and one quarter identified as Hispanic and/or African American. Design At twelve months post‐diagnosis, participants rated 16 life abilities/activities in their importance to quality of life on a 10‐point Likert scale, during an in‐person interview. Scale themes were validated via exploratory factor analysis and examining associations with sociodemographic variables. Results Participants rated most life abilities/activities as extremely important. Variability in responses was sufficient to identify three underlying values themes in exploratory factor analysis: self‐sufficiency, enjoyment/comfort, and connection to family, friends and spirituality. Veterans with a spouse/partner rated self‐sufficiency as less important. African American veterans rated connection as more important than did White veterans. Conclusions It is feasible yet challenging to ask older, multimorbid patients to rate relative importance of values associated with life abilities/activities. Themes related to self‐sufficiency, enjoyment/comfort in daily life and connection are salient and logically consistent with sociodemographic traits. Future studies should explore their role in goal‐directed health care.

  January 29, 2015   doi: 10.1111/hex.12343   open full text
• Does sharing the electronic health record in the consultation enhance patient involvement? A mixed‐methods study using multichannel video recording and in‐depth interviews in primary care.
  Heather Milne, Guro Huby, Susan Buckingham, James Hayward, Aziz Sheikh, Kathrin Cresswell, Hilary Pinnock.
  Health Expectations. December 18, 2014
  Background Sharing the electronic health‐care record (EHR) during consultations has the potential to facilitate patient involvement in their health care, but research about this practice is limited. Methods We used multichannel video recordings to identify examples and examine the practice of screen‐sharing within 114 primary care consultations. A subset of 16 consultations was viewed by the general practitioner and/or patient in 26 reflexive interviews. Screen‐sharing emerged as a significant theme and was explored further in seven additional patient interviews. Final analysis involved refining themes from interviews and observation of videos to understand how screen‐sharing occurred, and its significance to patients and professionals. Results Eighteen (16%) of 114 videoed consultations involved instances of screen‐sharing. Screen‐sharing occurred in six of the subset of 16 consultations with interviews and was a significant theme in 19 of 26 interviews. The screen was shared in three ways: ‘convincing’ the patient of a diagnosis or treatment; ‘translating’ between medical and lay understandings of disease/medication; and by patients ‘verifying’ the accuracy of the EHR. However, patients and most GPs perceived the screen as the doctor's domain, not to be routinely viewed by the patient. Conclusions Screen‐sharing can facilitate patient involvement in the consultation, depending on the way in which sharing comes about, but the perception that the record belongs to the doctor is a barrier. To exploit the potential of sharing the screen to promote patient involvement, there is a need to reconceptualise and redesign the EHR.

  December 18, 2014   doi: 10.1111/hex.12320   open full text
• Giving patients a starring role in their own care: a bibliometric analysis of the on‐going literature debate.
  Julia Menichetti, Chiara Libreri, Edoardo Lozza, Guendalina Graffigna.
  Health Expectations. November 04, 2014
  Background Patient‐centred care has been advocated as a key component of high‐quality patient care, yet its meanings and related actions have been difficult to ascertain. Objective To map the use of different terms related to the process of giving patients a starring role in their own care and clarify the possible boundaries between terms that are often mixed. Methods A literature search was conducted using different electronic databases. All records containing the search terms ‘patient engagement’, ‘patient activation’, ‘patient empowerment’, ‘patient involvement’, ‘patient adherence’, ‘patient compliance’ and ‘patient participation’ were collected. Identified literature was then analysed using the Statistical Package for Social Science (SPSS). The number of yearly publications, most productive countries, cross‐concepts articles and various scientific fields dealing with the multidisciplinary concepts were identified. Results Overall, 58 987 papers were analysed. Correspondence analysis revealed three temporal trends. The first period (2002–2004) focused on compliance and adherence, the second period (2006–2009) focused on the relationship between participation and involvement, and the third one (2010–2013) emphasized empowerment. Patient activation and patient engagement followed the temporal development trend connected to the ‘immediate future’. Discussion and conclusions The bibliometric trend suggests that the role of patient in the health‐care system is changing. In the last years, the patient was viewed as a passive receptor of medical prescription. To date, the need to consider patients as active partners of health‐care planning and delivery is growing. In particular, the term patient engagement appears promising, not only for its increasing growth of interest in the scholarly debate, but also because it offers a broader and better systemic conceptualization of the patients’ role in the fruition of health care. To build a shared vocabulary of terms and concepts related to the active role of patients in the health‐care process may be envisaged as the first operative step towards a concrete innovation of health‐care organizations and systems.

  November 04, 2014   doi: 10.1111/hex.12299   open full text
• Rethinking the relationship between science and society: Has there been a shift in attitudes to Patient and Public Involvement and Public Engagement in Science in the United Kingdom?
  Annette Boaz, Despina Biri, Christopher McKevitt.
  Health Expectations. October 31, 2014
  Background The policy imperative to engage the public and patients in research can be seen as part of a wider shift in the research environment. This study addresses the question: Has there been a shift in attitudes to Patient and Public Involvement (PPI) and Public Engagement in Science (PES) amongst researchers? Methods Attitudes to PPI and PES within a cluster of three NIHR supported Biomedical Research Centres were explored through in‐depth interviews with 19 researchers. Results Participants distinguished PPI (as an activity involving patients and carers in research projects and programmes) from PES (as an activity that aims to communicate research findings to the public, engage the public with broader issues of science policy or promote a greater understanding of the role of science in society). While participants demonstrated a range of attitudes to these practices, they shared a resistance to sharing power and control of the research process with the public and patients. Conclusion While researchers were prepared to engage with the public and patients and listed the advantages of engagement, the study revealed few differences in their underlying attitudes towards the role of society in science (and science in society) to those reported in previous studies. To the participants science remains the preserve of scientists, with patients and the public invited to ‘tinker at the edges’.

  October 31, 2014   doi: 10.1111/hex.12295   open full text
• A comparison of the quality of care in accident and emergency departments in England and the Netherlands as experienced by patients.
  Nanne Bos, Ian J. Seccombe, Leontien M. Sturms, Rebecca Stellato, Augustinus J.P. Schrijvers, Henk F. Stel.
  Health Expectations. October 09, 2014
  Background Measuring patients’ experiences to determine health‐care performance and quality of care from their perspective can provide valuable evidence for international improvements in the quality of care. We compare patients’ experiences in Accident & Emergency departments (A&E) in England and the Netherlands and discuss the usefulness of this comparison. Methods A cross‐sectional survey was conducted among patients attending A&Es aged 18 years and older. In England, 134 A&Es were surveyed. In the Netherlands, nine hospitals participated in the study. Main outcome measures were patients’ experiences represented by six domain scores aggregated on the country level or on the A&E level. Results In England, 43 892 completed questionnaires were received (40%). In the Netherlands, 1865 completed questionnaires were received (42%). Three of six domain scores were significantly higher for patients in the Netherlands: ‘waiting time’ [mean scores of 73.8 (NL) versus 67.2 (ENG)], ‘doctors and nurses’ [mean scores of 85.7 (NL) versus 80.6 (ENG)] and ‘your care and treatment’ [mean scores of 82.6 (NL) and 80.2 (ENG)]. The variance among the English A&Es was large. The best and worst practices on five domains were English. Conclusions The mean quality of care in the A&E appeared to be better in the Netherlands on three domains, but the best practices were English A&Es. The within‐country differences between A&Es were much larger than differences between countries. Healthcare performance in the A&E can be compared between countries by surveying patients’ experiences, and there seems much to learn across A&Es both within and among countries.

  October 09, 2014   doi: 10.1111/hex.12282   open full text
• Coping with future epidemics: Tai chi practice as an overcoming strategy used by survivors of severe acute respiratory syndrome (SARS) in post‐SARS Hong Kong.
  Judy Yuen‐man Siu.
  Health Expectations. September 15, 2014
  Background Although SARS had been with a controversial topic for a decade at the time of this study, numerous SARS survivors had not yet physically, psychologically or socially recovered from the aftermath of SARS. Among chronically ill patients, the use of complementary and alternative medicine (CAM) is reported to be widespread. However, extremely little is known about the use of CAM by SARS survivors in the post‐SARS period and even less is known about how the use of CAM is related to the unpleasant social and medical‐treatment experiences of SARS survivors, their eagerness to re‐establish social networks, and their awareness to prepare for future epidemics. Objective To investigate the motivations for practising tai chi among SARS survivors in post‐SARS Hong Kong. Design, setting and participants Using a qualitative approach, I conducted individual semi‐structured interviews with 35 SARS survivors, who were purposively sampled from a tai chi class of a SARS‐patient self‐help group in Hong Kong. Results Health concerns and social experiences motivated the participants to practise tai chi in post‐SARS Hong Kong. Experiencing health deterioration in relation to SARS‐associated sequelae, coping with unpleasant experiences during follow‐up biomedical treatments, a desire to regain an active role in recovery and rehabilitation, overcoming SARS‐associated stigmas by establishing a new social network and preparing for potential future stigmatization and discrimination were the key motivators for them. Conclusion The participants practised tai chi not only because they sought to improve their health but also because it provided a crucial social function and meaning to them.

  September 15, 2014   doi: 10.1111/hex.12270   open full text
• Doctors’ perspectives of informed consent for non‐emergency surgical procedures: a qualitative interview study.
  Fiona Wood, Sean Michael Martin, Andrew Carson‐Stevens, Glyn Elwyn, Elizabeth Precious, Paul Kinnersley.
  Health Expectations. September 12, 2014
  Background The need to involve patients more in decisions about their care, the ethical imperative and concerns about ligation and complaints has highlighted the issue of informed consent and how it is obtained. In order for a patient to make an informed decision about their treatment, they need appropriate discussion of the risks and benefits of the treatment. Objectives To explore doctors’ perspectives of gaining informed consent for routine surgical procedures. Design Qualitative study using semi‐structured interviews selected by purposive sampling. Data were analysed thematically. Setting and Participants Twenty doctors in two teaching hospitals in the UK. Results Doctors described that while consent could be taken over a series of consultations, it was common for consent to be taken immediately prior to surgery. Juniors were often taking consent when they were unfamiliar with the procedure. Doctors used a range of communication techniques to inform patients about the procedure and its risks including quantifying risks, personalizing risk, simplification of language and use of drawings. Barriers to effective consent taking were reported to be shortage of time, clinician inexperience and patients’ reluctance to be involved. Discussion and Conclusion Current consent processes do not appear to be ideal for many doctors. In particular, junior doctors are often not confident taking consent for surgical procedures and require more support to undertake this task. This might include written information for junior staff, observation by senior colleagues when undertaking the task and ward‐based communication skills teaching on consent taking.

  September 12, 2014   doi: 10.1111/hex.12258   open full text
• Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health.
  Anneliese J. Synnot, Sophie J. Hill, Kerryn A. Garner, Michael P. Summers, Graziella Filippini, Richard H. Osborne, Sue D.P. Shapland, Cinzia Colombo, Paola Mosconi.
  Health Expectations. August 28, 2014
  Background and objective The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study. Design Sixty participants (51 people with MS; nine family members) took part in a focus group or online forum. They were asked to describe how they find and assess reliable treatment information (particularly online) and how this changes over time. Thematic analysis was underpinned by a coding frame. Results Participants described that there was both too much information online and too little that applied to them. They spoke of wariness and scepticism but also empowerment. The availability of up‐to‐date and unbiased treatment information, including practical and lifestyle‐related information, was important to many. Many participants were keen to engage in a ‘research partnership’ with health professionals and developed a range of strategies to enhance the trustworthiness of online information. We use the term ‘self‐regulation’ to capture the variations in information seeking behaviour that participants described over time, as they responded to their changing information needs, their emotional state and growing expertise about MS. Conclusions People with MS have developed a number of strategies to both find and integrate treatment information from a range of sources. Their reflections informed the development of an evidence‐based consumer web site based on summaries of MS Cochrane reviews.

  August 28, 2014   doi: 10.1111/hex.12253   open full text
• Communicating with disabled children when inpatients: barriers and facilitators identified by parents and professionals in a qualitative study.
  Siobhan Sharkey, Claire Lloyd, Richard Tomlinson, Eleanor Thomas, Alice Martin, Stuart Logan, Christopher Morris.
  Health Expectations. August 24, 2014
  Background Communication is a fundamental part of health care, but can be more difficult with disabled children. Disabled children are more frequently admitted to hospital than other children. Aims To explore experiences of ward staff and families to identify barriers and facilitators to effective communication with disabled children whilst inpatients. Design This was an exploratory qualitative study. Methods We consulted 25 staff working on paediatric wards and 15 parents of disabled children recently admitted to those wards. We had difficulty in recruiting children and evaluating their experiences. Data were collected through interviews and focus groups. A thematic analysis of the data supported by the Framework Approach was used to explore experiences and views about communication. Emerging themes were subsequently synthesised to identify barriers and facilitators to good communication. Results Barriers to communication included time, professionals not prioritising communication in their role and poor information sharing between parents and professionals. Facilitators included professionals building rapport with a child, good relationships between professionals and parents, professionals having a family‐centred approach, and the use of communication aids. Conclusions Communication with disabled children on the ward was perceived as less than optimal. Parents are instrumental in the communication between their children and professionals. Although aware of the importance of communication with disabled children, staff perceived time pressures and lack of priority given to communicating directly with the child as major barriers.

  August 24, 2014   doi: 10.1111/hex.12254   open full text
• Managing clients’ expectations at the outset of online Cognitive Behavioural Therapy (CBT) for depression.
  Stuart Ekberg, Rebecca K. Barnes, David S. Kessler, Alice Malpass, Alison R. G. Shaw.
  Health Expectations. August 02, 2014
  Background Engaging clients in psychotherapy by managing their expectations is important for therapeutic success. Initial moments in first sessions of therapy are thought to afford an opportunity to establish a shared understanding of how therapy will proceed. However, there is little evidence from analysis of actual sessions of therapy to support this. Objective This study utilised recorded session logs to examine how therapists manage clients’ expectations during the first two sessions of online Cognitive Behavioural Therapy (CBT). Methods Expectation management was investigated through conversation analysis of sessions from 176 client‐therapist dyads involved in online CBT. The primary focus of analysis was expectation management during the initial moments of first sessions, with a secondary focus on expectations at subsequent points. Analysis Clients’ expectations for therapy were most commonly managed during the initial moments of first sessions of therapy. At this point, most therapists either produced a description outlining the tasks of the first and subsequent sessions (n = 36) or the first session only (n = 108). On other occasions (n = 32), no attempt was made to manage clients’ expectations by outlining what would happen in therapy. Observations of the interactional consequences of such an absence suggest clients may struggle to engage with the therapeutic process in the absence of appropriate expectation management by therapists. Conclusion Clients may more readily engage from the outset of therapy when provided with an explanation that manages their expectation of what is involved. Therapists can accomplish this by projecting how therapy will proceed, particularly beyond the initial session.

  August 02, 2014   doi: 10.1111/hex.12227   open full text
• Parents' information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study.
  David Rankin, Jeni Harden, Norman Waugh, Kathryn Noyes, Katharine D. Barnard, Julia Lawton.
  Health Expectations. July 29, 2014
  Aim and objective The aim of this study was to describe and explore parents' information and support needs when their child is diagnosed with type 1 diabetes, including their views about the timing and chronology of current support provision. Our objective was to identify ways in which parents could be better supported in the future. Design and participants Semi‐structured interviews were conducted with 54 parents of children with type 1 diabetes in four paediatric diabetes clinics in Scotland. Data were analysed using an inductive, thematic approach. Findings Parents described needing more reassurance after their child was diagnosed before being given complex information about diabetes management, so they would be better placed psychologically and emotionally to absorb this information. Parents also highlighted a need for more emotional and practical support from health professionals when they first began to implement diabetes regimens at home, tailored to their personal and domestic circumstances. However, some felt unable to ask for help or believed that health professionals were unable to offer empathetic support. Whilst some parents highlighted a need for support delivered by peer parents, others who had received peer support conveyed ambivalent views about the input and advice they had received. Conclusions Our findings suggest that professionals should consider the timing and chronology of support provision to ensure that parents' emotional and informational needs are addressed when their child is diagnosed and that practical advice and further emotional support are provided thereafter, which takes account of their day‐to‐day experiences of caring for their child.

  July 29, 2014   doi: 10.1111/hex.12244   open full text
• A critical analysis of the implementation of service user involvement in primary care research and health service development using normalization process theory.
  Edel Tierney, Rachel McEvoy, Mary O'Reilly‐de Brún, Tomas Brún, Ekaterina Okonkwo, Michelle Rooney, Chris Dowrick, Anne Rogers, Anne MacFarlane.
  Health Expectations. July 24, 2014
  Background There have been recent important advances in conceptualizing and operationalizing involvement in health research and health‐care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine – normalized – way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization – definition, enrolment, enactment and appraisal. Method Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. Findings Twenty‐six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co‐governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. Conclusion To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co‐governance and dissemination of research processes and findings.

  July 24, 2014   doi: 10.1111/hex.12237   open full text
• It's the talk: a study of involvement initiatives in secure mental health settings.
  Mick McKeown, Fiona Jones, Karen Wright, Helen Spandler, Joanna Wright, Holly Fletcher, Joy Duxbury, Jolene McVittie, Simon, Wayne Turton.
  Health Expectations. July 07, 2014
  Background A study of involvement initiatives within secure mental health services across one UK region, where these have been organized to reflect alliances between staff and service users. There is little previous relevant international research, but constraints upon effective involvement have been noted. Objective To explore and evaluate involvement initiatives in secure mental health settings. Design A case study design with thematic analysis of qualitative interviews and focus groups. Setting and participants Data collection was carried out between October 2011 and February 2012 with 139 staff and service users drawn from a variety of secure mental health settings. Findings Our analysis offers four broad themes, titled: safety and security first?; bringing it all back home; it picks you up; it's the talk. The quality of dialogue between staff and services users was deemed of prime importance. Features of secure environments could constrain communication, and the best examples of empowerment took place in non‐secure settings. Discussion Key aspects of communication and setting sustain involvement. These features are discussed with reference to Jurgen Habermas's work on communicative action and deliberative democracy. Conclusions Involvement initiatives with service users resident in secure hospitals can be organized to good effect and the active role of commissioners is crucial. Positive outcomes are optimized when care is taken over the social space where involvement takes place and the process of involvement is appreciated by participants. Concerns over risk management are influential in staff support. This is germane to innovative thinking about practice and policy in this field.

  July 07, 2014   doi: 10.1111/hex.12232   open full text
• Why patients may not exercise their choice when referred for hospital care. An exploratory study based on interviews with patients.
  Aafke Victoor, Diana Delnoij, Roland Friele, Jany Rademakers.
  Health Expectations. June 17, 2014
  Background Various north‐western European health‐care systems encourage patients to make an active choice of health‐care provider. This study explores, qualitatively, patients' hospital selection processes and provides insight into the reasons why patients do or do not make active choices. Methods Semi‐structured individual interviews were conducted with 142 patients in two departments of three Dutch hospitals. Interviews were recorded, transcribed and analysed in accordance with the grounded theory approach. Results Three levels of choice activation were identified – passive, semi‐active and active. The majority of the patients, however, visited the default hospital without having used quality information or considered alternatives. Various factors relating to patient, provider and health‐care system characteristics were identified that influenced patients' level of choice activation. On the whole, the patients interviewed could be classified into five types with regard to how they chose, or ‘ended up at’ a hospital. These types varied from patients who did not have a choice to patients who made an active choice. Conclusions A large variation exists in the way patients choose a hospital. However, most patients tend to visit the default without being concerned about choice. Generally, they do not see any reason to choose another hospital. In addition, barriers exist to making choices. The idea of a patient who actively makes a choice originates from neoclassical microeconomic theory. However, policy makers may try in vain to bring principles originating from this theory into health care. Even so, patients do value the opportunity of attending ‘their’ own hospital.

  June 17, 2014   doi: 10.1111/hex.12224   open full text
• Exploring consumer opinions on the presentation of side‐effects information in Australian Consumer Medicine Information leaflets.
  Vivien Tong, David K Raynor, Susan J Blalock, Parisa Aslani.
  Health Expectations. June 06, 2014
  Background Consumer Medicine Information (CMI) is a brand‐specific and standardized source of written medicine information available in Australia for all prescription medicines. Side‐effect information is poorly presented in CMI and may not adequately address consumer information needs. Objective To explore consumer opinions on (i) the presentation of side‐effect information in existing Australian CMI leaflets and alternative study‐designed CMIs and (ii) side‐effect risk information and its impact on treatment decision making. Design Fuzzy trace, affect heuristic, frequency hypothesis and cognitive‐experiential theories were applied when revising existing CMI side‐effects sections. Together with good information design, functional linguistics and medicine information expertise, alternative ramipril and clopidogrel CMI versions were proposed. Focus groups were then conducted to address the study objectives. Participants and setting Three focus groups (n = 18) were conducted in Sydney, Australia. Mean consumer age was 58 years (range 50–65 years), with equal number of males and females. Results All consumers preferred the alternative CMIs developed as part of the study, with unequivocal preference for the side‐effects presented in a simple tabular format, as it allowed quick and easy access to information. Consumer misunderstandings reflected literacy and numeracy issues inherent in consumer risk appraisal. Many preferred no numerical information and a large proportion preferred natural frequencies. Conclusions One single method of risk presentation in CMI is unable to cater for all consumers. Consumer misunderstandings are indicative of possible health literacy and numeracy factors that influence consumer risk appraisal, which should be explored further.

  June 06, 2014   doi: 10.1111/hex.12215   open full text
• Making decisions about chronic disease treatment: a comparison of parents and their adolescent children.
  Ellen A. Lipstein, Cassandra M. Dodds, Daniel J. Lovell, Lee A. Denson, Maria T. Britto.
  Health Expectations. June 03, 2014
  Objective To compare factors considered by parents to those considered by adolescents making decisions about chronic disease treatments. Methods We conducted individual interviews with 15 parent–adolescent dyads in which the adolescent had either juvenile idiopathic arthritis or Crohn's disease. Questions focused on treatment decisions, with an emphasis on the factors that influenced each individual's preferences related to biologic therapies. A multidisciplinary team developed a coding structure. All interviews were coded by two people with disagreements resolved through discussion. We used content analysis and coding matrices to examine decision factors within and between parent–adolescent dyads. Results Parents and adolescents both participated in decisions about treatment with biologic therapies but considered decision factors differently. In only half of cases did parents and adolescents agree on the factor that most influenced their decision. Although their decision factors often fell into similar categories (e.g. treatment risks, quality of life), in many cases the specifics varied between adolescents and their parents. Adolescents were more likely to focus on immediate treatment effects and quality of life while parents took a longer term view of the decision. Agreement within dyads was most consistent when a special circumstance influenced the treatment decision. Conclusions Differences regarding influential decision factors exist within parent–adolescent dyads. Continued research is needed to determine the extent to which such differences are due to individual preferences or to variations in the information available to each person. Future decision support interventions will need to address parents’ and adolescents’ potentially disparate views and information needs.

  June 03, 2014   doi: 10.1111/hex.12210   open full text
• ‘You likes your way, we got our own way’: Gypsies and Travellers’ views on infant feeding and health professional support.
  Louise J Condon, Debra Salmon.
  Health Expectations. June 03, 2014
  Background Gypsies and Travellers are known to have poor health status and access to health services, even in comparison with other ethnic minority groups. People from this stigmatized ethnic group are rarely consulted about their health needs or health service provision. Optimal infant feeding in the first year of life has the potential to improve lifelong health. Objective The aim of this study was to explore mothers and grandmothers’ views on feeding in the first year of life, including the support provided by health professionals. Methods Semi‐structured interviews were conducted with a purposively selected sample of 22 mothers and grandmothers of English Gypsy, Irish Traveller and Romanian Roma ethnicity between November 2011 and February 2012 in a city in south‐west England. Results Few women perceived themselves as requiring help from health professionals in infant feeding, as acceptable and accessible support was available from within their own communities. Roma mothers described a tradition of breast‐feeding and appropriately timed weaning, while English Gypsies and Irish Travellers customarily practised less healthy infant feeding. When mothers requested support, health service provision was often found inadequate. Conclusion Exploring the views of Gypsies and Travellers is important to gain insight into the provision of health services for this marginalized ethnic group. This study has implications for policy and the practice of health professionals, in indicating the customary feeding behaviours of some Gypsy and Travellers, and highlighting areas meriting culturally sensitive health promotion.

  June 03, 2014   doi: 10.1111/hex.12214   open full text
• Influences on individuals’ decisions to take up the offer of a health check: a qualitative study.
  Caroline Burgess, Alison J. Wright, Alice S. Forster, Hiten Dodhia, Jane Miller, Frances Fuller, Eric Cajeat, Martin C. Gulliford.
  Health Expectations. June 03, 2014
  Background Health checks are promoted to evaluate individuals’ risk of developing disease and to initiate health promotion and disease prevention interventions. The NHS Health Check is a cardiovascular risk assessment programme introduced in the UK aimed at preventing cardiovascular disease (CVD). Uptake of health checks is lower than anticipated. This study aimed to explore influences on people's decisions to take up the offer of a health check. Methods Semi‐structured interviews were conducted with people registered at four general practices in South London. The interview schedule was informed by the Theoretical Domains Framework. Data were analysed qualitatively using the Framework method using NVivo for data management. Results Twenty‐seven participants invited for a health check were included in the study. Seventeen received the health check while 10 either did not attend or failed to complete the check. Five themes emerging from the data included a lack of awareness of the health check programme, beliefs about susceptibility to CVD, beliefs about civic responsibility, issues concerning access to appointments, and beliefs about the consequences of having a check. Conclusions Health check programmes need to raise public awareness to ensure that people are informed about the objectives and nature of the programme in order to reach an informed decision about taking up the invitation. Emphasizing the benefits of prevention and early detection might encourage attendance in those who are reluctant to burden the public health‐care systems. Extending outreach initiatives and increasing ‘out of hours’ provision at local community sites could facilitate access.

  June 03, 2014   doi: 10.1111/hex.12212   open full text
• The development and initial validation of a questionnaire to measure help‐seeking behaviour in patients with new onset rheumatoid arthritis.
  Rebecca J. Stack, Christian D. Mallen, Chris Deighton, Patrick Kiely, Karen L. Shaw, Alison Booth, Kanta Kumar, Susan Thomas, Ian Rowan, Rob Horne, Peter Nightingale, Sandy Herron‐Marx, Clare Jinks, , Karim Raza.
  Health Expectations. June 03, 2014
  Background Early treatment for rheumatoid arthritis (RA) is vital. However, people often delay in seeking help at symptom onset. An assessment of the reasons behind patient delay is necessary to develop interventions to promote rapid consultation. Objective Using a mixed methods design, we aimed to develop and test a questionnaire to assess the barriers to help seeking at RA onset. Design Questionnaire items were extracted from previous qualitative studies. Fifteen people with a lived experience of arthritis participated in focus groups to enhance the questionnaire's face validity. The questionnaire was also reviewed by groups of multidisciplinary health‐care professionals. A test–retest survey of 41 patients with newly presenting RA or unclassified arthritis assessed the questionnaire items' intraclass correlations. Results During focus groups, participants rephrased questions, added questions and deleted items not relevant to the questionnaire's aims. Participants organized items into themes: early symptom experience, initial reactions to symptoms, self‐management behaviours, causal beliefs, involvement of significant others, pre‐diagnosis knowledge about RA, direct barriers to seeking help and relationship with GP. The test–retest survey identified seven items (out of 79) with low intraclass correlations which were removed from the final questionnaire. Conclusion The involvement of people with a lived experience of arthritis and multidisciplinary health‐care professionals in the preliminary validation of the DELAY (delays in evaluating arthritis early) questionnaire has enriched its development. Preliminary assessment established its reliability. The DELAY questionnaire provides a tool for researchers to evaluate individual, cultural and health service barriers to help‐seeking behaviour at RA onset.

  June 03, 2014   doi: 10.1111/hex.12203   open full text
• Patient involvement in research programming and implementation.
  Tineke A. Abma, Carina A.C.M. Pittens, Merel Visse, Janneke E. Elberse, Jacqueline E.W. Broerse.
  Health Expectations. May 30, 2014
  Background The Dialogue Model for research agenda‐setting, involving multiple stakeholders including patients, was developed and validated in the Netherlands. However, there is little insight into whether and how patient involvement is sustained during the programming and implementation of research agendas. Aim To understand how the Dialogue Model can be optimised by focusing on programming and implementation, in order to stimulate the inclusion of (the perspectives of) patients in research. Methods A responsive evaluation of the programming and implementation phases of nine agenda‐setting projects that had used the Dialogue Model for agenda‐setting was conducted. Fifty‐four semi‐structured interviews were held with different stakeholders (patients, researchers, funding agencies). Three focus groups with patients, funding agencies and researchers (16 participants) were organized to validate the findings. Results Patient involvement in programming and implementation of the research agendas was limited. This was partly related to poor programming and implementation, partly to pitfalls in earlier phases of the agenda‐setting. Optimization of the Dialogue Model is possible by attending to the nature of the agenda and its intended use in earlier phases. Attention should also be given to the ambassadors and intended users of agenda topics. Support is needed during programming and implementation to organize patient involvement and adapt organizational structures like review procedures. In all phases the attitude to patient involvement, stakeholder participation, especially of researchers, and formal and informal relationships between parties need to be addressed to build a strong relationship with a shared goal. Conclusion Patient involvement in agenda‐setting is not automatically followed by patient involvement in programming and implementation. More attention should be paid, in earlier stages, to the attitude and engagement of researchers and funding agencies.

  May 30, 2014   doi: 10.1111/hex.12213   open full text
• “Maybe they have found something new” participants’ views on returning cohort psychosocial survey results.
  Eve Bureau, Isabelle Pellegrini, Catherine Noguès, Christine Lasset, Claire Julian‐Reynier.
  Health Expectations. May 30, 2014
  Background Although greater attention is currently being paid to participants in research, no studies have dealt so far with the issue of returning aggregate psychosocial results to cohort participants. Objective (i) To explore participants’ views about disclosure of the aggregate results of a French national psychosocial cohort survey on the epidemiology of preventive behaviour in women from families with a hereditary breast cancer risk. (ii) To assess whether it is worth consulting participants before designing the disclosure process. Design A qualitative study using semi‐structured face‐to‐face interviews and a thematic analysis based on Grounded Theory methods. Participants Nineteen interviews were conducted with cancer‐free female BRCA mutation carriers/non‐carriers aged 31–79 who had participated in a cohort survey by answering self‐administered questionnaires. Results Participants showed considerable interest in the issue of result disclosure. The preferences expressed about disclosure were rarely relevant to the topic investigated, however, as they often focused on medical knowledge about BRCA and not on the psychosocial findings obtained. This confusion may have been due to the participants’ experience of the survey procedures, including its longitudinal nature, the occurrence of very few interactions with the investigators and the wide range of topics addressed in the questionnaires. Conclusion Investigators should ascertain participants’ expectations and preferences by consulting them before disclosing the results obtained. Although the disclosure process may not meet participants’ expectations completely, consultation is the key to preventing them from having irrealistic expectations about the information they are going to receive.

  May 30, 2014   doi: 10.1111/hex.12211   open full text
• Heart failure and chronic obstructive pulmonary disease multimorbidity at hospital discharge transition: a study of patient and carer experience.
  Lucy Doos, Eleanor Bradley, Claire A Rushton, Duwarakan Satchithananda, Simon J Davies, Umesh T Kadam.
  Health Expectations. May 16, 2014
  Background Care for patients with multimorbidity represents a major challenge not only for patients and carers but to health‐care systems. Hospital discharge transition is a critical point at which challenges for multimorbidity may amplify. Objectives The main objective of the study was to explore the experiences of heart failure (HF) and chronic obstructive pulmonary disease (COPD) multimorbid patients and their carers on hospital discharge. Secondary objectives included identification of gaps in the health care of multimorbidity and optimal solutions from patients and carers' perspectives. Design Mixed methods were applied to collect data using patient self‐completion questionnaire from an adapted version of the American Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey and in‐depth interviews. Setting Participants were recruited from two cardiology and respiratory wards at a large regional hospital in England, and all had a multimorbidity diagnosis of COPD and HF. Results and conclusions Findings revealed that patients experienced difficulties in their communication with health‐care professionals and there were specific challenges with information about medication. Qualitative descriptions revealed that experiences fell into two main categories: (i) information transfer to patients with multimorbidity in terms of issues with medication and clarity of information on diagnosis and (ii) communication and continuity of care after discharge. Respondents highlighted gaps in the management of patients with multimorbidity of HF and COPD at the critical time of care transition. They suggested the need for a comprehensive, coordinated and integrated approach to incorporate patients, carers and staff preferences for treatment on discharge from hospital.

  May 16, 2014   doi: 10.1111/hex.12208   open full text
• Citizen expectations of ‘academic entrepreneurship’ in health research: public science, practical benefit.
  Fiona A. Miller, Michael Painter‐Main, Renata Axler, Pascale Lehoux, Mita Giacomini, Barbara Slater.
  Health Expectations. May 14, 2014
  Background Responsiveness to citizens as users of technological innovation helps motivate translational research and commercial engagement among academics. Yet, retaining citizen trust and support for research encourages caution in pursuit of commercial science. Objectives We explore citizen expectations of the specifically academic nature of commercial science [i.e. academic entrepreneurship (AE)] and the influence of conflict of interest concerns, hopes about practical benefits and general beliefs. Design, setting and participants We conducted a cross‐sectional national opinion survey of 1002 Canadians online in 2010. Results Approval of AE was moderate (mean 3.2/5, SD 0.84), but varied by entrepreneurial activity. Concern about conflict of interests (COI) was moderate (mean 2.9/5, SD 0.86) and varied by type of concern. An ordinary least‐squares regression showed that expectations of practical benefits informed support for AE, specifically that academic–industry collaboration can better address real‐world problems; conflict of interest concerns were insignificant. Conclusions These findings suggest that citizens support AE for its potential to produce practical benefits, but enthusiasm varies and is reduced for activities that may prioritize private over public interests. Further, support exists despite concern about COI, perhaps due to trust in the academic research context. For user engagement in research priority setting, these findings suggest the need to attend to the commercial nature of translational science. For research policy, they suggest the need for governance arrangements for responsible innovation, which can sustain public trust in academic research, and realize the practical benefits that inform public support for AE.

  May 14, 2014   doi: 10.1111/hex.12205   open full text
• Barriers to patient portal access among veterans receiving home‐based primary care: a qualitative study.
  Rebecca G. Mishuris, Max Stewart, Gemmae M. Fix, Thomas Marcello, D. Keith McInnes, Timothy P. Hogan, Judith B. Boardman, Steven R. Simon.
  Health Expectations. May 12, 2014
  Background Electronic, or web‐based, patient portals can improve patient satisfaction, engagement and health outcomes and are becoming more prevalent with the advent of meaningful use incentives. However, adoption rates are low, particularly among vulnerable patient populations, such as those patients who are home‐bound with multiple comorbidities. Little is known about how these patients view patient portals or their barriers to using them. Objective To identify barriers to and facilitators of using My HealtheVet (MHV), the United States Department of Veterans Affairs (VA) patient portal, among Veterans using home‐based primary care services. Design Qualitative study using in‐depth semi‐structured interviews. We conducted a content analysis informed by grounded theory. Participants Fourteen Veterans receiving home‐based primary care, surrogates of two of these Veterans, and three home‐based primary care (HBPC) staff members. Key Results We identified five themes related to the use of MHV: limited knowledge; satisfaction with current HBPC care; limited computer and Internet access; desire to learn more about MHV and its potential use; and value of surrogates acting as intermediaries between Veterans and MHV. Conclusions Despite their limited knowledge of MHV and computer access, home‐bound Veterans are interested in accessing MHV and using it as an additional point of care. Surrogates are also potential users of MHV on behalf of these Veterans and may have different barriers to and benefits from use.

  May 12, 2014   doi: 10.1111/hex.12199   open full text
• Participation of chronic patients in medical consultations: patients' perceived efficacy, barriers and interest in support.
  Inge Henselmans, Monique Heijmans, Jany Rademakers, Sandra Dulmen.
  Health Expectations. May 12, 2014
  Aims Chronic patients are increasingly expected to participate actively in medical consultations. This study examined (i) patients' perceived efficacy and barriers to participation in consultations, (ii) patients' interest in communication support and (iii) correlates of perceived efficacy and barriers, with an emphasis on differences across providers' disciplines. Methods A representative panel of chronic patients (n = 1314) filled out the short Perceived Efficacy in Patient‐Provider Interaction scale and were questioned about barriers to participation and interest in communication support. Potential correlates included socio‐demographic (age, sex, education, living situation), clinical (discipline care provider, type of illness, comorbidity, illness duration, functional disabilities, health consultations in last year) and personal characteristics (information preference, health literacy, level of general patient activation). Results Most patients felt efficacious in consultations, although 46% reported barriers to participation and 39% had an interest in support. Barriers most frequently recognized were ‘not wanting to be bothersome’, ‘perception there is too little time’ and ‘remembering subjects only afterwards’. Patients most frequently endorsed relatively simple support. Patients perceived the least barriers and were least likely to endorse support when seeing a nurse. In multivariate models, consistent risk factors for low efficacy and perceived barriers were low health literacy and a low general patient activation. Conclusions Many chronically ill patients feel confident in medical interactions. Still, a significant number might benefit from support. Often this concerned more generally vulnerable patients, that is, the low literate and generally less activated. Relatively simple supportive interventions are likely to be endorsed and might overcome frequent barriers.

  May 12, 2014   doi: 10.1111/hex.12206   open full text
• Factors that affect the decision to undergo amniocentesis in women with normal Down syndrome screening results: it is all about the age.
  Julia Grinshpun‐Cohen, Talya Miron‐Shatz, Liat Ries‐Levavi, Elon Pras.
  Health Expectations. May 12, 2014
  Background Risk for foetal Down syndrome (DS) increases as maternal age increases. Non‐invasive screening (maternal serum triple test) for DS is routinely offered to pregnant women to provide risk estimates and suggest invasive amniocentesis for definitive pre‐natal diagnosis to high‐risk women. Objective We examined women's decision process with regard to pre‐natal screening, and specifically, the degree to which they take into account triple serum screening results when considering whether or not to undergo amniocentesis. Design Semi‐structured phone interviews were conducted to assess recall of DS screening results, understanding of risk estimates and their effect on women's decision whether to undergo amniocentesis. The study included 60 pregnant Israeli women (half younger than 35 and half advanced maternal age – AMA), with normal DS screening results and no known ultrasound abnormalities. Results Age appeared to determine the decision process. The vast majority of AMA women had amniocentesis, many of them before receiving their DS screening results. Most AMA participants knew that their risk estimate was ‘normal’, but still considered themselves at high risk due to their age. Procedure‐related risk (miscarriage) and other factors only had a minor effect on their decision. A minority of younger women had amniocentesis. Younger women mentioned procedure‐related risk and having normal screening results as the main factors affecting their decision not to have amniocentesis. Conclusion Age 35 is an anchor for the pre‐determination regarding performing or avoiding amniocentesis. AMA women mention ‘age’ as their main reason to have amniocentesis and considered it an independent risk factor.

  May 12, 2014   doi: 10.1111/hex.12200   open full text
• Patient and public involvement: how much do we spend and what are the benefits?
  Elena Pizzo, Cathal Doyle, Rachel Matthews, James Barlow.
  Health Expectations. May 12, 2014
  Background and objectives Patient and public involvement (PPI) is seen as a way of helping to shape health policy and ensure a patient‐focused health‐care system. While evidence indicates that PPI can improve health‐care decision making, it also consumes monetary and non‐monetary resources. Given the financial climate, it is important to start thinking about the costs and benefits of PPI and how to evaluate it in economic terms. Design We conducted a literature review to assess the potential benefits and costs of involvement and the challenges in carrying out an economic evaluation of PPI. Results The benefits of PPI include effects on the design of new projects or services, on NHS governance, on research design and implementation and on citizenship and equity. Economic evaluation of PPI activities is limited. The lack of an appropriate analytical framework, data recording and understanding of the potential costs and benefits of PPI, especially from participants' perspectives, represent serious constraints on the full evaluation of PPI. Conclusions By recognizing the value of PPI, health‐care providers and commissioners can embed it more effectively within their organizations. Better knowledge of costs may prompt organizations to effectively plan, execute, evaluate and target resources. This should increase the likelihood of more meaningful activity, avoid tokenism and enhance organizational efficiency and reputation.

  May 12, 2014   doi: 10.1111/hex.12204   open full text
• Values and preferences for oral antithrombotic therapy in patients with atrial fibrillation: physician and patient perspectives.
  Pablo Alonso‐Coello, Victor M. Montori, M. Gloria Díaz, Philip J. Devereaux, Gemma Mas, Ana I. Diez, Ivan Solà, Mercè Roura, Juan C. Souto, Sven Oliver, Rafael Ruiz, Blanca Coll‐Vinent, Ignasi Gich, Holger J. Schünemann, Gordon Guyatt.
  Health Expectations. May 12, 2014
  Background Exploration of values and preferences in the context of anticoagulation therapy for atrial fibrillation (AF) remains limited. To better characterize the distribution of patient and physician values and preferences relevant to decisions regarding anticoagulation in patients with AF, we conducted interviews with patients at risk of developing AF and physicians who manage patients with AF. Methods We interviewed 96 outpatients and 96 physicians in a multicenter study and elicited the maximal increased risk of bleeding (threshold risk) that respondents would tolerate with warfarin vs. aspirin to achieve a reduction in three strokes in 100 patients over a 2‐year period. We used the probabilistic version of the threshold technique. Results The median threshold risk for both patients and physicians was 10 additional bleeds (10 P = 0.7). In both groups, we observed large variability in the threshold number of bleeds, with wider variability in patients than clinicians [patient range: 0–100, physician range: 0–50]. We observed one cluster of patients and physicians who would tolerate <10 bleeds and another cluster of patients, but not physicians, who would accept more than 35. Conclusions Our findings suggest wide variability in patient and physician values and preferences regarding the trade‐off between strokes and bleeds. Results suggest that in individual decision making, physician and patient values and preferences will often be discordant; this mandates tailoring treatment to the individual patient's preferences.

  May 12, 2014   doi: 10.1111/hex.12201   open full text
• Measuring the quality of surgical decisions for Latina breast cancer patients.
  Karen Sepucha, Sandra Feibelmann, Yuchiao Chang, Sarah Hewitt, Argyrios Ziogas.
  Health Expectations. May 12, 2014
  Background A high‐quality decision for breast cancer surgery requires that patients are well informed, meaningfully involved in decision making, and receive treatments that match their goals. There is little in the existing literature that examines a comprehensive measure of decision quality for Latina breast cancer patients. Objective To examine the quality of surgical decisions among Latina breast cancer survivors and explore factors associated with decision quality and decision regret. Design Cross‐sectional mailed survey. Main outcome measures English and certified Spanish translations of Breast Cancer Surgery Decision Quality Instrument (BCS‐DQI), Short Acculturation Scale for Hispanics (SASH) and decision regret. Participants and setting Ninety‐seven breast cancer survivors of Hispanic or Spanish descent identified through the cancer registry from Orange or San Diego Counties in California. Results The 97 respondents were on average 55.7 years old, 39.1% had high school diploma or more education, and 62.9% had low acculturation (SASH scores < 2.99). The average knowledge score was 48.2%, the average decision process score was 67.5%, and many (77.3%) received treatments that matched their goals. In multivariable models, there were no significant associations with education, age, acculturation and any aspect of decision quality or decision regret in this sample. Respondents who had higher decision process scores, indicating more involvement in decision making, had significantly lower decision regret. Conclusions The BCS‐DQI may require some adaptation for Latina populations to improve acceptability. The different aspects of decision quality, including knowledge, decision process and concordance, did not vary by level of acculturation.

  May 12, 2014   doi: 10.1111/hex.12207   open full text
• Physicians' perceptions of the value of prognostic models: the benefits and risks of prognostic confidence.
  Sarah A. M. Hallen, Norbert A. M. Hootsmans, Laura Blaisdell, Caitlin M. Gutheil, Paul K. J. Han.
  Health Expectations. May 12, 2014
  Background The communication of prognosis in end‐of‐life (EOL) care is a challenging task that is limited by prognostic uncertainty and physicians' lack of confidence in their prognostic estimates. Clinical prediction models (CPMs) are increasingly common evidence‐based tools that may mitigate these problems and facilitate the communication and use of prognostic information in EOL care; however, little is known about physicians' perceptions of the value of these tools. Objective To explore physicians' perceptions of the value of CPMs in EOL care. Design Qualitative study using semi‐structured individual interviews which were analysed using a constant comparative method. Setting and participants Convenience sample of 17 attending physicians representing five different medical specialties at a single large tertiary care medical centre. Results Physicians perceived CPMs as having three main benefits in EOL care: (i) enhancing their prognostic confidence; (ii) increasing their prognostic authority; and (iii) enabling patient persuasion in circumstances of low prognostic and therapeutic uncertainty. However, physicians also perceived CPMs as having potential risks, which include producing emotional distress in patients and promoting prognostic overconfidence in EOL care. Discussion and conclusions Physicians perceive CPMs as a potentially valuable means of increasing their prognostic confidence, communication and explicit use of prognostic information in EOL care. However, physicians' perceptions of CPMs also indicate a need to establish broad and consistent implementation processes to engage patients in shared decision making in EOL care, to effectively communicate uncertainty in prognostic information and to help both patients and physicians manage uncertainty in EOL care decisions.

  May 12, 2014   doi: 10.1111/hex.12196   open full text
• Utilization and preference of nutrition information sources in Australia.
  Tracee Cash, Ben Desbrow, Michael Leveritt, Lauren Ball.
  Health Expectations. May 06, 2014
  Background The prevalence of chronic disease in Australia is rising, and poor nutrition behaviour is a modifiable risk factor for many chronic diseases. The utilization of appropriate nutrition information has been recommended to promote optimal nutrition behaviour. Objective To investigate individuals’ utilization and preference of nutrition information sources as well as perceptions of trustworthiness, credibility and effectiveness of sources. Design Cross‐sectional online survey. Setting and Participants Ninety‐four residents of the Gold Coast, Australia. Main Outcome Measures Studied Respondents’ demographic variables, previously utilized and preferred nutrition information sources, perceptions of trustworthiness, credibility and effectiveness of nutrition information sources. Results Dietitians, nutritionists and GPs were the three most preferred sources and were perceived to be most trustworthy, credible and effective. However, the most utilized nutrition information sources were the Internet (62.9%), friends (59.8%), family (58.8%) and magazines (57.7%). Over 30% of respondents reported time to attend appointments as a barrier to accessing their most preferred nutrition information sources. Between 32 and 60% of respondents reported neutral perceptions of the most frequently utilized nutrition information sources in relation to trustworthiness, credibility and effectiveness. Conclusion Individuals frequently receive nutrition information from sources that are not their most preferred and sources that they do not perceive as trustworthy, credible or effective. Further research is warranted on the impact of these discrepancies on overall nutrition‐related health literacy and behaviour.

  May 06, 2014   doi: 10.1111/hex.12198   open full text
• Are parents of children hospitalized with severe community‐acquired pneumonia more satisfied with care when physicians allow them to share decisions on the antibiotic route?
  Paola Rosati, Viviana Di Salvo, Stefania Crudo, Roberto D'Amico, Cecilia Carlino, Maria Rosaria Marchili, Michaela Gonfiantini, Vincenzo Di Ciommo.
  Health Expectations. April 27, 2014
  Context and objective Despite convincing evidence that oral and injected amoxicillin have equal efficacy in children with severe community‐acquired pneumonia (CAP), hospitalized children often receive injected antibiotics. To investigate whether shared decision‐making (choosing the antibiotic route) influences parental satisfaction. Design, setting and participants In a one‐year questionnaire‐based study, we enrolled consecutive children hospitalized for CAP. At admission, all children's parents received a leaflet on CAP. Parents arriving during the daytime were assigned to a shared group and could choose the antibiotic route, those admitted at other times were assigned to an unshared group for whom physicians chose the antibiotic route. Shared group parents answered anonymous questionnaire investigating why they chose a specific route. Parents in both groups answered another anonymous questionnaire at discharge assessing perceived satisfaction with care. Main outcome measure Parents' satisfaction with perceived medical information as assessed by data from a questionnaire. Results Of the 95 children enrolled, more children's parents were assigned to the unshared than the shared group (77 vs. 18). Of the 18 children's parents in the shared group, 14 chose the oral antibiotic route mainly to avoid painful injections. Doctors explanations were considered better in the shared than in the unshared group (P = 0.02). Discussion and conclusions The larger number of children's parents assigned to the unshared group reflects paediatricians' reluctance to offer shared‐decision making. Well‐informed parents prefer oral antibiotic therapy for children with severe CAP. Allowing parents choose the antibiotic route respects parents' wishes, reduces children's pain and improves satisfaction.

  April 27, 2014   doi: 10.1111/hex.12197   open full text
• Family–clinician interactions in children's health services: a secondary analysis of occupational therapists' practice descriptions.
  Jennifer McAnuff, Chris Boyes, Niina Kolehmainen.
  Health Expectations. April 27, 2014
  Background Effective family–clinician interactions are important for good health outcomes. Two types of interactions are consistently recommended: relational (e.g. listening, empathy, and respect) and participatory (e.g. shared decision‐making, planning and problem‐solving), but there is little specific guidance on how to implement these interactions in practice. Objective To identify specific, practice‐based examples of relational and participatory family–clinician interactions in children's occupational therapy. Design A qualitative secondary analysis was used. The data consisted of a list of occupational therapists' self‐reported practice actions (n = 217) and direct quotes describing their content and context. The practice actions were categorized into a range of relational and participatory family‐centred interactions using a modified framework analysis. Results Of the 217 practice actions, the majority [121 (55.76%)] did not describe examples of therapists implementing family–clinician interactions. Of the remaining practice actions, 19 (8.76%) described ‘relational’ interactions (e.g. ‘Listen to carer’, ‘Gather perspectives from others’); 47 (21.66%) described ‘participatory’ interactions (e.g. ‘Identify the family's goals and priorities’, ‘Allow the family to choose’); 2 (0.92%) described both (‘Take guidance from carers’); and 28 (12.9%) were excluded from the analysis. Discussion and conclusions A range of relational and participatory interactions were identified. Descriptions of participatory interactions were more frequent than descriptions of relational interactions, and overall the therapists described their family–clinician interactions less frequently than their other practice actions. The specific, real‐life examples of different types of interactions identified in the study can be used as a basis for reflection on practice and developing more specific guidance.

  April 27, 2014   doi: 10.1111/hex.12194   open full text
• User involvement in long‐term care. Towards a relational care‐ethics approach.
  Tineke A. Abma, Vivianne E. Baur.
  Health Expectations. April 27, 2014
  Background User involvement in long‐term care has become official policy in many countries. Procedural and managerial approaches to user involvement have numerous shortcomings in long‐term care. What is needed is a different approach that is beneficial and tuned to the needs of clients and professionals. Aim This article presents a care‐ethics approach to involvement. We illustrate this approach and its practical implementation by examining a case example of user involvement in long‐term elderly care. Methodology This case example is based on an action research project in a residential care home in the Netherlands. Seven female clients participated in the process, as well as diverse groups of professionals from this residential care home. Results The clients were concerned about meals, and collectively they became empowered and came up with ideas for improving meals. Professionals also shared the clients' experiences with meals, first in homogeneous groups and then in heterogeneous meetings with the client group. This process led to the development of partnership relations between clients and professionals. Conclusion Our findings suggest that a care‐ethics approach to user involvement is a means to increase resident empowerment in long‐term care. Clients and professionals start sharing their experiences and values through dialogue, and they develop mutual trust and openness while doing so.

  April 27, 2014   doi: 10.1111/hex.12202   open full text
• Patients' valuation of the prescribing nurse in primary care: a discrete choice experiment.
  Karen Gerard, Michela Tinelli, Sue Latter, Alesha Smith, Alison Blenkinsopp.
  Health Expectations. April 11, 2014
  Background Recently, primary care in the United Kingdom has undergone substantial changes in skill mix. Non‐medical prescribing was introduced to improve patient access to medicines, make better use of different health practitioners' skills and increase patient choice. There is little evidence about value‐based patient preferences for ‘prescribing nurse’ in a general practice setting. Objective To quantify value‐based patient preferences for the profession of prescriber and other factors that influence choice of consultation for managing a minor illness. Design Discrete choice experiment patient survey. Setting and participants Five general practices in England with non‐medical prescribing services, questionnaires completed by 451 patients. Main outcome measure Stated choice of consultation. Main results There was a strong general preference for consulting ‘own doctor’ for minor illness. However, a consultation with a nurse prescriber with positive patient‐focused attributes can be more acceptable to patients than a consultation provided by a doctor. Attributes ‘professional's attention to Patients' views’ and extent of ‘help offered’ were pivotal. Past experience influenced preference. Discussion and conclusion Respondents demonstrated valid preferences. Preferences for consulting a doctor remained strong, but many were happy to consult with a nurse if other aspects of the consultation were improved. Findings show who to consult is not the only valued factor in choice of consultation for minor illness. The ‘prescribing nurse’ role has potential to offer consultation styles that patients value. Within the study's limitations, these findings can inform delivery of primary care to enhance patient experience and substitute appropriate nurse prescribing consultations for medical prescribing consultations.

  April 11, 2014   doi: 10.1111/hex.12193   open full text
• Children's mental health policies in the United States: perspectives from advocates and state leaders.
  Janice L. Cooper, Yumiko Aratani.
  Health Expectations. April 03, 2014
  Background Previous research suggests a disconnect on both policy and practice between advocates and state leaders in child mental health. Aim To compare advocates' and state leader's perspectives and understanding on the three main themes in children's mental health policies: (i) state's initiatives to empower and engage families and youth in policy and practice; (ii) state's fiscal support for family and youth driven services; and (iii) policy challenges to improving children's mental health services and outcomes. Study design This study draws on data from national surveys of State Children's Mental Health Directors (2006) and of state affiliates of Mental Health America (2007). Results The findings from 38 responses representing 19 states suggest differences between state leaders and advocates on their understanding of family and youth engagement, service access, quality and fiscal supports. While state directors and advocates seem to have similar understanding on the existence of states' efforts related to evidence‐based practices, many advocates are unaware of the specifics of the strategies that states undertook or funded. Advocates also did not know which types of settings were eligible for reimbursement for children's services. Conclusions Advocates lack some information that is vital to fulfilling their role. Policymakers seem unaware of key challenges that families face and therefore appear to be without critical information that fuels the agenda for advocates. The challenge for both set of actors is how to get beyond this information asymmetry to advance efforts to improve mental health.

  April 03, 2014   doi: 10.1111/hex.12191   open full text
• ‘I'm happy that I can still walk’ – Participation of the elderly in home care as a specific group with specific needs and wishes.
  Charlotte Bagchus, Christine Dedding, Joske F. G. Bunders.
  Health Expectations. March 28, 2014
  Background Taking the needs, wishes and experiential knowledge of clients into account is considered to result in a better fit between the supply and demand of modern health care, contributing to the improvement of individual care, organizations, institutions and policy. However, the current generation of the elderly have had little experience of consumer‐oriented public services. They are said to be less likely to discuss their needs and wishes with individual caregivers and health‐care organisations. As a result, they might not receive care matching their needs and wishes. Aim To examine how the elderly themselves refer to their age and their needs and wishes for individual and collective participation in home‐based care to get a better understanding of their participation in their own health care. Methods Content analysis of 20 semi‐structured in‐depth interviews with elderly recipients of care in the Netherlands. Results The need and ability of the elderly to discuss their experiences are strongly affected by physical and mental limitations, social cultural characteristics and their experiences of life. As a result, the elderly encounter many limitations in discussing their experiences with their individual caregivers and their home‐care organisation. However, this does not mean that the elderly do not have needs and wishes that they want taken into account. Conclusion The challenge is to create a more responsive environment and to find new, creative ways of facilitating the expression of the needs and wishes of the elderly, according to the specific values and norms of their generation.

  March 28, 2014   doi: 10.1111/hex.12188   open full text
• The use of publicly available quality information when choosing a hospital or health‐care provider: the role of the GP.
  Nora Doering, Hans Maarse.
  Health Expectations. March 26, 2014
  Background Patients barely use publicly available quality information for making a decision concerning secondary health care, but instead rely on information coming from their general practitioner (GP). An intermediate role of GPs has been suggested concerning the use of publicly available quality information. The aim of the study is to quantify and explore GPs' use of publicly available quality information when referring patients or suggesting secondary health‐care provider to them. Methods In this cross‐sectional study, an invitation to an electronic questionnaire was sent to 858 GPs in the south of the Netherlands. GPs were asked about their use of and perception towards publicly available quality information through closed‐ended and open‐ended questions. Differences among subgroups were tested for significance using Pearson's chi‐square tests. Results The majority of respondents (89.5%) never or rarely use publicly available quality information. They perceive them as invalid and unreliable. Distance to the hospital, prior experiences and personal contacts with specialists guide them when advising and referring. Almost 90% of respondents never or rarely suggest quality information as support for decision making to their patients. No significant differences between subgroups were observed. Conclusion This study is among the firsts exploring and quantifying GPs' use of publicly available quality information. The results suggest that publicly available quality information appears in its current format and application not useful for GPs. GPs have to be aware of their influential role in patients' decision making and possibly have to take more responsibility in guiding them through the jungle of quality information.

  March 26, 2014   doi: 10.1111/hex.12187   open full text
• The health and service needs of older veterans: a qualitative analysis.
  Susan Feldman, Marissa L. Dickins, Colette J. Browning, Tiasha S. DeSoysa.
  Health Expectations. March 24, 2014
  Background With substantial numbers of older people within the Australian veteran population continuing to age well within the community, appropriate planning of community support and health services is important for this ageing population. Objective The purpose of this research study was to investigate the health and service usage of a group of older Australian war veterans who receive Australian Government support for their health‐care needs and conditions. Design This paper reports on qualitative data gathered from the longitudinal MELSHA study. Utilizing thematic analysis and the theoretical framework of locus of control, this article reports on 25 qualitative interviews of veterans and their widows about their DVA‐related health and service usage. Results Participants within this study were determined to maintain a sense of control and independence in relation to their living circumstances and service usage. In doing so, they attempted to maintain their current community living circumstances and independence while minimizing their utilization of services and perceived ‘burden’ on family members and friends. Participants accepted that a decline in health status was inevitable, but engaged in a number of different strategies to maintain their current way of life for as long as possible. Discussion & Conclusion Participants, while valuing an internal locus of control, generally engaged in an integrative locus of control to maintain a sense of control and independence in their daily lives. In addition, participants were very grateful of the services provided by the DVA and acknowledged their role in maintaining their independence within the community.

  March 24, 2014   doi: 10.1111/hex.12190   open full text
• Patients' preferences for post‐treatment breast cancer follow‐up in primary care vs. secondary care: a qualitative study.
  Carriene Roorda, Geertruida H. Bock, Christian Scholing, Klaas Meer, Marjolein Y. Berger, Marlieke Fouw, Annette J. Berendsen.
  Health Expectations. March 24, 2014
  Objective To explore patients' preferences for follow‐up in primary care vs. secondary care. Methods A cross‐sectional design was employed, involving semi‐structured interviews with 70 female patients with a history of early‐stage breast cancer. Using descriptive content analysis, interview transcripts were analysed independently and thematically by two researchers. Findings Patients expressed the strongest preference for annual visits (31/68), a schedule with a decreasing frequency over time (27/68), and follow‐up > 10 years, including lifelong follow‐up (20/64). The majority (56/61) preferred to receive follow‐up care from the same care provider over time, for reasons related to a personal doctor–patient relationship and the physician's knowledge of the patient's history. About 75% (43/56) preferred specialist follow‐up to other follow‐up models. However, primary care‐based follow‐up would be accepted by 57% (39/68) provided that there is good communication between GPs and specialists, and sufficient knowledge among GPs about follow‐up. Perceived benefits of primary care‐based follow‐up referred to the personal nature of the GP–patient relationship and the easy access to primary care. Perceived barriers included limited oncology knowledge and skills, time available, motivation among GPs to provide follow‐up care and patients' confidence with the present specialist follow‐up. Conclusions More than half of the patients were open to primary care‐based follow‐up. Patients' confidence with this follow‐up model may increase by using survivorship care plans to facilitate communication across the primary/secondary interface and with patients. Training GPs to improve their oncology knowledge and skills might also increase patients' confidence.

  March 24, 2014   doi: 10.1111/hex.12189   open full text
• Personal health communities: a phenomenological study of a new health‐care concept.
  Johanna Wilhelmina Maria Aarts, Femke Vennik, Willianne L. D. M. Nelen, Martijn Eijk, Bastiaan R. Bloem, Marjan J. Faber, Jan A. M. Kremer.
  Health Expectations. March 19, 2014
  Context Fragmentation of care, complexity of diseases and the need to involve patients actively in their individual health care led to the development of the personal health community (PHC). In a PHC, patients can –regardless of the nature of their condition– invite all professionals that are involved in their health care process. Once gathered, the patient and health care team can exchange information about the patient's health and communicate through several functionalities, in a secured environment. Objectives Exploring the use, first experiences and potential consequences of using PHCs in health care. Design Qualitative phenomenological study. Participants Eighteen respondents, consisting of women experiencing infertility (n = 5), persons with Parkinson's disease (n = 6), a gynaecologist, a fertility doctor, a fertility nurse, three Parkinson's specialist nurses and a neurologist. Results First experiences with PHCs showed that patients use their PHC differently, dependending on their condition and people involved. Various (potential) advantages for future health care were mentioned relating to both organizational aspects of care (e.g. continuity of care) and the human side of care (e.g. personal care). Patient involvement in care was facilitated. Disadvantages were the amount of work that it took and technological issues. Conclusions Using PHCs leads to promising improvements in both the organization of care and care experience, according to the participants in this study. They indicate that patients with different diseases and in different circumstances can benefit from these improvements. The PHC seem to be an online tool that can be applied in a personalized way. When (technically) well facilitated, it could stimulate active involvement of patients in their own health and health care. It warrants further research to study its effect on concrete health outcomes.

  March 19, 2014   doi: 10.1111/hex.12177   open full text
• Patients’ views of teamwork in the emergency department offer insights about team performance.
  Beverly W. Henry, Danielle M. McCarthy, Anna P. Nannicelli, Nicholas P. Seivert, John A. Vozenilek.
  Health Expectations. October 07, 2013
  Background Research into efforts to engage patients in the assessment of health‐care teams is limited. Objective To explore, through qualitative methods, patient awareness of teamwork‐related behaviours observed during an emergency department (ED) visit. Design Researchers used semi‐structured question guides for audio‐recorded interviews and analysed their verbatim transcripts. Setting and participants Researchers conducted individual phone interviews with 6 teamwork subject matter experts (SMEs) and held 5 face‐to‐face group interviews with patients and caregivers (n = 25) about 2 weeks after discharge from the emergency department (ED). Results SMEs suggested that a range of factors influence patient perspectives of teams. Many patients perceived the health‐care team within the context of their expectations of an ED visit and their treatment plan. Four themes emerged: (i) patient‐centred views highlight gaps in coordination and communication; (ii) team processes do concern patients; (iii) patients are critical observers of ways that team members present their team roles; (iv) patients’ observations of team members relate to patients’ views of team effectiveness. Analysis also indicated that patients viewed health‐care team members’ interactions with each other as proxy for how team members actually felt about patients. Discussion Results from both sets of interviews (SME and patient) indicated that patient observations of teamwork could add to assessment of team processes/frameworks. Patients’ understanding about teamwork organization seemed helpful and witnessed interteam communication appeared to influence patient confidence in the team. Conclusion Patients perspectives are an important part of assessment in health care and suggest potential areas for improvement through team training.

  October 07, 2013   doi: 10.1111/hex.12148   open full text
• Involving patients in clinical research: the Telescot Patient Panel.
  Peter Fairbrother, Lucy McCloughan, Geraldine Adam, Richard Brand, Cecil Brown, Mary Watson, Nicola Cotter, Juliet Mackellaig, Brian McKinstry.
  Health Expectations. September 30, 2013
  Background To date, patient involvement in the development of clinical research work has been limited. In 2011, the Telescot research team commenced work on a feasibility trial to investigate home telemonitoring of blood pressure for people who have experienced stroke or transient ischaemic attack (TIA). The team decided to involve patients in the development of the research. Objectives To improve research design through patient involvement. Method of patient involvement A modified form of the ‘Scrutiny Panel’ approach was used to involve people who had stroke in the research project. Results The Patient Panel supported the research in three key ways: it informed patient communication; it presented patient perspectives on the applicability and usability of the intervention; and it guided the development of the qualitative study. Discussion The initiative was considered a positive experience for all. However, challenges were identified in terms of the time and cost implications of undertaking patient involvement. Implication for research practice Importance is attached to adequate project planning and development, partnership working with community‐based organizations and the necessity for clear role delineation between patients and professionals to enable effective collaborative working. Conclusions The Telescot Patient Panel was beneficial in supporting the development of the feasibility trial. The Panel approach was considered transferable to other clinical research contexts.

  September 30, 2013   doi: 10.1111/hex.12132   open full text
• Ethical implications of home telecare for older people: a framework derived from a multisited participative study.
  Maggie Mort, Celia Roberts, Jeannette Pols, Miquel Domenech, Ingunn Moser,.
  Health Expectations. August 06, 2013
  Context Telecare and telehealth developments have recently attracted much attention in research and service development contexts, where their evaluation has predominantly concerned effectiveness and efficiency. Their social and ethical implications, in contrast, have received little scrutiny. Objective To develop an ethical framework for telecare systems based on analysis of observations of telecare‐in‐use and citizens’ panel deliberations. Design Ethnographic study (observation, work shadowing), interviews, older citizens’ panels and a participative conference. Setting Participants’ homes, workplaces and familiar community venues in England, Spain, the Netherlands and Norway 2008–2011. Results Older respondents expressed concerns that telecare might be used to replace face‐to‐face/hands‐on care to cut costs. Citizens’ panels strongly advocated ethical and social questions being considered in tandem with technical and policy developments. Older people are too often excluded from telecare system design, and installation is often wrongly seen as a one‐off event. Some systems enhance self‐care by increasing self‐awareness, while others shift agency away from the older person, introducing new forms of dependency. Conclusions Telecare has care limitations; it is not a solution, but a shift in networks of relations and responsibilities. Telecare cannot be meaningfully evaluated as an entity, but rather in the situated relations people and technologies create together. Characteristics of ethical telecare include on‐going user/carer engagement in decision making about systems: in‐home system evolution with feedback opportunities built into implementation. System design should be horizontal, ‘two‐way’/interactive rather than vertical or ‘one‐way’. An ethical framework for telecare has been developed from these conclusions (Table 1).

  August 06, 2013   doi: 10.1111/hex.12109   open full text
• Are parents and professionals making shared decisions about a child's care on presentation of a suspected shunt malfunction: a mixed method study?
  Joanna Smith, Francine Cheater, Hilary Bekker, John Chatwin.
  Health Expectations. August 05, 2013
  Background Shunts, the main treatment for hydrocephalus, are problematic as they frequently malfunction. Identifying shunt malfunction requires parents to recognize its symptoms and health professionals to integrate parents' information about the child's symptoms within the clinical assessment to reach a diagnosis. Aim To investigate parent–professional shared decision making during the diagnosis of suspected shunt malfunction in acute hospital admissions. Design and methods A mixed method study involving audio recordings of admission consultations, a shared decision making questionnaire and interviews 1‐week post‐consultation, was undertaken. Twenty‐eight family members and fourteen health professionals participated. The interactions were analysed using conversational analysis, framework approach for the interview data and descriptive statistics for questionnaire responses. Findings Both parents and professionals focussed on establishing a diagnosis and ruling out shunt malfunction when a child with hydrocephalus was ill. Participants' perceived effective collaboration as central to this task: parents wanted to contribute to the process of diagnosis by providing information about the likely cause of symptoms. Professionals were satisfied with the level of involvement by parents, although parent satisfaction was more variable. The challenge for professionals was to integrate parents' expertise of their child's presenting symptoms within clinical decision making processes. Conclusion In this context, both parents' and professionals' perceived their interactions to be about problem‐solving, rather than making decisions about treatments. Although the shared decision‐making model can help patients to make better decisions between treatment options, it is unclear how best to support collaboration between professionals and parents to ensure a good problem‐solving process.

  August 05, 2013   doi: 10.1111/hex.12106   open full text
• How do people interpret information about colorectal cancer screening: observations from a think‐aloud study.
  Samuel G. Smith, Gemma Vart, Michael S. Wolf, Austin Obichere, Helen J. Baker, Rosalind Raine, Jane Wardle, Christian Wagner.
  Health Expectations. August 05, 2013
  Background The English NHS Bowel Cancer Screening Programme biennially invites individuals aged 60–74 to participate in screening. The booklet, ‘Bowel Cancer Screening: The Facts' accompanies this invitation. Its primary aim is to inform potential participants about the aims, advantages and disadvantages of colorectal cancer screening. Objective To provide detailed commentary on how individuals process the information contained within ‘The Facts’ booklet. Design, setting and participants This study comprised of 18 interviews with individuals aged 45–60 and used a ‘think‐aloud’ paradigm in which participants read aloud the booklet. Participant utterances (verbal statements made in response to researcher‐led prompts) were transcribed and analysed using a combination of content and thematic analysis. Results A total of 776 coded utterances were analysed (mean = 43.1 per person; range = 8–95). While overall comprehension was satisfactory, several problem areas were identified such as the use of complex unfamiliar terminology and the presentation of numerical information. Specific sections such as colonoscopy risk information evoked negative emotional responses. Participants made several suggestions for ways in which comprehension might be improved. Conclusion Public perceptions of the NHS Bowel Cancer Screening Programme information materials indicated that specific aspects of the booklet were difficult to process. These materials may be an appropriate target to improve public understanding of the aims, benefits and disadvantages of colorectal cancer screening. These findings will contribute to a broader NIHR‐funded project that aims to design a supplementary ‘gist‐based’ information leaflet suitable for low literacy populations.

  August 05, 2013   doi: 10.1111/hex.12117   open full text
• Presenting life with cystic fibrosis: a Q‐methodological approach to developing balanced, experience‐based prenatal screening information.
  Katherine F. Wright, Louise D. Bryant, Stephen Morley, Jenny Hewison, Alistair J.A. Duff, Daniel Peckham.
  Health Expectations. August 02, 2013
  Background Cystic fibrosis (CF) is one of the most common life‐threatening genetically inherited conditions and prenatal screening for CF is available in many countries. Genetic counsellors and other health professionals are expected to provide information about the condition in a way that facilitates personal decision making. Knowing what information to deliver about complex genetic conditions to support informed screening decisions can be challenging for health professionals. Objective To solicit views from those with personal experience with CF on which aspects of the condition they consider most important to include in prenatal screening materials. Methods Q‐methodology; an approach to systematically explore variations in viewpoint that combines factor analytic techniques with qualitative approaches to pattern interpretation. Setting and Participants: Twelve adults with CF and 18 parents of affected children were recruited from a regional centre in the UK. Results Five distinct viewpoints on the items most and least important to include in screening information were identified: Factor 1 the normality of life with CF and increasing life expectancy; Factor 2 the hardships and reduced lifespan. Factor 3 medical interventions and the importance of societal support. Factor 4 longer‐term consequences of CF. Factor 5 the ability to adjust to the condition. Discussion The identification of five different views on what represented the most and least important information to include about CF highlights the challenge of portraying a complex genetic condition in a balanced and accurate manner. Novel ways in which Q‐methodology findings can be used to meet this challenge are presented.

  August 02, 2013   doi: 10.1111/hex.12113   open full text
• A disparity of words: racial differences in oncologist–patient communication about clinical trials.
  Susan Eggly, Ellen Barton, Andrew Winckles, Louis A. Penner, Terrance L. Albrecht.
  Health Expectations. August 02, 2013
  Background African Americans are consistently underrepresented in cancer clinical trials. Minority under‐enrolment may be, in part, due to differences in the way clinical trials are discussed in oncology visits with African American vs. White patients. Objective To investigate differences in oncologist–patient communication during offers to participate in clinical trials in oncology visits with African American and White patients. Methods From an archive of video‐recorded oncology visits, we selected all visits with African American patients that included a trial offer (n = 11) and a matched sample of visits with demographically/medically comparable White patients (n = 11). Using mixed qualitative–quantitative methods, we assessed differences by patient race in (i) word count of entire visits and (ii) frequency of mentions and word count of discussions of clinical trials and key elements of consent. Results Visits with African American patients, compared to visits with White patients, were shorter overall and included fewer mentions of and less discussion of clinical trials. Also, visits with African Americans included less discussion of the purpose and risks of trials offered, but more discussion of voluntary participation. Discussion and conclusions African American patients may make decisions about clinical trial participation based on less discussion with oncologists than do White patients. Possible explanations include a less active communication style of African Americans in medical visits, oncologists' concerns about patient mistrust, and/or oncologist racial bias. Findings suggest oncologists should pay more conscious attention to developing the topic of clinical trials with African American patients, particularly purpose and risks.

  August 02, 2013   doi: 10.1111/hex.12108   open full text
• Towards generic online multicriteria decision support in patient‐centred health care.
  Jack Dowie, Mette Kjer Kaltoft, Glenn Salkeld, Michelle Cunich.
  Health Expectations. August 02, 2013
  Objective To introduce a new online generic decision support system based on multicriteria decision analysis (MCDA), implemented in practical and user‐friendly software (Annalisa©). Background All parties in health care lack a simple and generic way to picture and process the decisions to be made in pursuit of improved decision making and more informed choice within an overall philosophy of person‐ and patient‐centred care. Methods The MCDA‐based system generates patient‐specific clinical guidance in the form of an opinion as to the merits of the alternative options in a decision, which are all scored and ranked. The scores for each option combine, in a simple expected value calculation, the best estimates available now for the performance of those options on patient‐determined criteria, with the individual patient's preferences, expressed as importance weightings for those criteria. The survey software within which the Annalisa file is embedded (Elicia©) customizes and personalizes the presentation and inputs. Principles relevant to the development of such decision‐specific MCDA‐based aids are noted and comparisons with alternative implementations presented. The necessity to trade‐off practicality (including resource constraints) with normative rigour and empirical complexity, in both their development and delivery, is emphasized. Conclusion The MCDA‐/Annalisa‐based decision support system represents a prescriptive addition to the portfolio of decision‐aiding tools available online to individuals and clinicians interested in pursuing shared decision making and informed choice within a commitment to transparency in relation to both the evidence and preference bases of decisions. Some empirical data establishing its usability are provided.

  August 02, 2013   doi: 10.1111/hex.12111   open full text
• Patients' perspective on self‐management in the recovery from depression.
  Roos A. Grieken, Anneloes C.E. Kirkenier, Maarten W.J. Koeter, Udo W. Nabitz, Aart H. Schene.
  Health Expectations. August 02, 2013
  Background Self‐management appears to be a promising approach in the case of depression, which helps to stimulate patients' autonomy. However, a good and systematic description of the concept self‐management from the patients' perspective, to our knowledge, has not yet been performed. Objective To determine: (i) what strategies patients think they can use themselves to recover from depression, (ii) which main themes of self‐management strategies can be detected, and (iii) which of these strategies patients perceive as being most helpful. Methods We used concept mapping to explore the experiences of patients who recently recovered from a depressive episode. Patients generated self‐management strategies in focus group discussions. The strategies were clustered on a two‐dimensional concept map by a hierarchical cluster analysis. Results Patients generated 50 strategies that formed eight clusters: (i) proactive attitude towards depression and treatment, (ii) daily life strategies and rules, (iii) explanation of disease to others, (iv) remaining socially engaged, (v) engaging in activities, (vi) structured attention to oneself, (vii) contact with fellow sufferers, and (viii) other. Behavioural and cognitive strategies and a proactive attitude towards treatment were considered as the most helpful. Discussion and conclusion From the patients' perspective, there is a wide range of self‐management strategies that they can use – and perceive as helpful‐ to contribute to their own recovery. Professionals could encourage patients to take an active role in achieving recovery. Further research could open new roads to improve patients' active contributions to current treatments for depression.

  August 02, 2013   doi: 10.1111/hex.12112   open full text
• Risk assessment and clinical decision making for colorectal cancer screening.
  Paul C. Schroy, Sarah E. Caron, Bonnie J. Sherman, Timothy C. Heeren, Tracy A. Battaglia.
  Health Expectations. July 30, 2013
  Background Shared decision making (SDM) related to test preference has been advocated as a potentially effective strategy for increasing adherence to colorectal cancer (CRC) screening, yet primary care providers (PCPs) are often reluctant to comply with patient preferences if they differ from their own. Risk stratification advanced colorectal neoplasia (ACN) provides a rational strategy for reconciling these differences. Objective To assess the importance of risk stratification in PCP decision making related to test preference for average‐risk patients and receptivity to use of an electronic risk assessment tool for ACN to facilitate SDM. Design Mixed methods, including qualitative key informant interviews and a cross‐sectional survey. Participants PCPs at an urban, academic safety‐net institution. Main Measures Screening preferences, factors influencing patient recommendations and receptivity to use of a risk stratification tool. Key Results Nine PCPs participated in interviews and 57 completed the survey. Despite an overwhelming preference for colonoscopy by 95% of respondents, patient risk (67%) and patient preferences (63%) were more influential in their decision making than patient comorbidities (31%; P < 0.001). Age was the single most influential risk factor (excluding family history), with <20% of respondents choosing factors other than age. Most respondents reported that they would be likely to use a risk stratification tool in their practice either ‘often’ (43%) or sometimes (53%). Conclusions Risk stratification was perceived to be important in clinical decision making, yet few providers considered risk factors other than age for average‐risk patients. Providers were receptive to the use of a risk assessment tool for ACN when recommending an appropriate screening test for select patients.

  July 30, 2013   doi: 10.1111/hex.12110   open full text
• Exploring the boundary of a specialist service for adults with intellectual disabilities using a Delphi study: a quantification of stakeholder participation.
  Eva‐Maria Hempe, Cecily Morrison, Anthony Holland.
  Health Expectations. July 22, 2013
  Background There are arguments that a specialist service for adults with intellectual disabilities is needed to address the health inequalities that this group experiences. The boundary of such a specialist service however is unclear, and definition is difficult, given the varying experiences of the multiple stakeholder groups. Objectives The study reported here quantitatively investigates divergence in stakeholders’ views of what constitutes a good specialist service for people with intellectual disabilities. It is the first step of a larger project that aims to investigate the purpose, function and design of such a specialist service. The results are intended to support policy and service development. Study design A Delphi study was carried out to elicit the requirements of this new specialist service from stakeholder groups. It consisted of three panels (carers, frontline health professionals, researchers and policymakers) and had three rounds. The quantification of stakeholder participation covers the number of unique ideas per panel, the value of these ideas as determined by the other panels and the level of agreement within and between panels. Findings There is some overlap of ideas about of what should constitute this specialist service, but both carers and frontline health professionals contributed unique ideas. Many of these were valued by the researchers and policymakers. Interestingly, carers generated more ideas regarding how to deliver services than what services to deliver. Regarding whether ideas are considered appropriate, the variation both within and between groups is small. On the other hand, the feasibility of solutions is much more contested, with large variations among carers. Conclusions This study provides a quantified representation of the diversity of ideas among stakeholder groups regarding where the boundary of a specialist service for adults with learning disabilities should sit. The results can be used as a starting point for the design process. The study also offers one way to measure the impact of participation for those interested in participation as a mechanism for service improvement.

  July 22, 2013   doi: 10.1111/hex.12107   open full text
• An experiment using hypothetical patient scenarios in healthy subjects to evaluate the treatment satisfaction and medication adherence intention relationship.
  Suzan N. Kucukarslan, Kristin S. Lee, Tejal D. Patel, Beejal Ruparelia.
  Health Expectations. July 11, 2013
  Background Treatment beliefs and illness consequence have been shown to impact medication adherence in patients with years of asthma experience. These relationships are unknown in patients with early experience. Objective The purpose was to test the relationship between illness consequence, treatment beliefs, treatment satisfaction and medication adherence intentions in healthy subjects exposed to an asthma scenario. Methods A 2×2×2 factorial design experiment was conducted in 91 healthy University student subjects. Each student was randomized to receive one scenario with varying levels of illness consequence (high/low), treatment concerns (high/low) and treatment necessity (high/low). After reading the scenarios the students responded to questions about treatment satisfaction and likelihood of using the medication as directed by the physician. A multiple regression model was used to test the impact of factors on treatment satisfaction and medication adherence at the 0.05 level of significance. Results Treatment satisfaction was significantly predicted by treatment necessity with a moderating effect by illness consequence. Medication adherence intentions were significantly predicted by treatment satisfaction. Conclusion Patients with early diagnosis of asthma are likely to form treatment satisfaction as a result of illness consequence and treatment necessity. Patients' perceptions of illness consequence are likely to influence (moderate) the impact of treatment necessity on treatment satisfaction; and their intentions to take medication as directed are likely to be influenced by treatment satisfaction rather than treatment beliefs or illness consequence early in the patient illness experience. These results are from an experiment that should be tested in a patient population.

  July 11, 2013   doi: 10.1111/hex.12103   open full text
• Does implementing a development plan for user participation in a mental hospital change patients' experience? A non‐randomized controlled study.
  Marit B. Rise, Aslak Steinsbekk.
  Health Expectations. July 09, 2013
  Background Governments in several countries attempt to strengthen user participation through instructing health‐care organizations to implement user participation initiatives. There is, however, little knowledge on the effect on patients' experience from comprehensive plans for enhancing user participation in whole health service organizations. Objective To investigate whether implementing a development plan intending to enhance user participation in a mental hospital had any effect on the patients' experience of user participation. Design, setting and participants A non‐randomized controlled study including patients in three mental hospitals in Central Norway, one intervention hospital and two control hospitals. Interventions A development plan intended to enhance user participation was implemented in the intervention hospital as a part of a larger reorganizational process. The plan included establishment of a patient education centre and a user office, purchase of user expertise, appointment of contact professionals for next of kin and improvement of the centre's information and the professional culture. Main outcome measures Perceptions of Care, Inpatient Treatment Alliance Scale and questions made for this study. Results A total of 1651 patients participated. Implementing a development plan in a mental hospital intending to enhance user participation had no significant effect on the patients' experience of user participation. Discussions and conclusions The lack of effect can be due to inappropriate initiatives or challenges in implementation processes. Further research should ensure that initiatives and implementation processes are appropriate to impact the patients' experience.

  July 09, 2013   doi: 10.1111/hex.12105   open full text
• Assessing patient preferences for the delivery of different community‐based models of care using a discrete choice experiment.
  Simon Dixon, Susan A. Nancarrow, Pamela M. Enderby, Anna M. Moran, Stuart G. Parker.
  Health Expectations. June 30, 2013
  Objectives To assess patient preferences for different models of care defined by location of care, frequency of care and principal carer within community‐based health‐care services for older people. Design Discrete choice experiment administered within a face‐to‐face interview. Setting An intermediate care service in a large city within the United Kingdom. Participants The projected sample size was calculated to be 200; however, 77 patients were recruited to the study. The subjects had recently been discharged from hospital and were living at home and were receiving short‐term care by a publicly funded intermediate care service. Interventions Not applicable. Main Outcome Measure The degree of preference, measured using single utility score, for individual service characteristics presented within a series of potential care packages. Results Location of care was the dominant service characteristics with care at home being the strongly stated preference when compared with outpatient care (0.003), hospital care (<0.001) and nursing home care (<0.001) relative to home care, although this was less pronounced among less sick patients. Additionally, the respondents indicated a dislike for very frequent care contacts. No particular type of professional carer background was universally preferred but, unsurprisingly, there was evidence that sick patients showed a preference for nurse‐led care. Conclusions Patients have clear preferences for the location for their care and were able to state preferences between different care packages when their ideal service was not available. Service providers can use this information to assess which models of care are most preferred within resource constraints.

  June 30, 2013   doi: 10.1111/hex.12096   open full text
• Families and health‐care professionals' perspectives and expectations of family‐centred care: hidden expectations and unclear roles.
  Imelda Coyne.
  Health Expectations. June 26, 2013
  Background and objective Family‐centred care (FCC) is viewed as a pivotal concept in the provision of high‐quality nursing care for children and their families, yet implementation continues to be problematic worldwide. This research investigated how FCC was enacted from families and nurses' perspectives. Design Descriptive qualitative approach using elements of analysis from grounded theory method. Data were collected though individual interviews with 18 children aged 7–16 years, their parents (n = 18) and 18 nurses from two children's hospital and one children's unit in a large general hospital in Ireland. Results Four key themes were identified: expectations; relying on parents' help; working out roles; and barriers to FCC. Nurses wholeheartedly endorsed FCC because of the benefits for families and their reliance on parents' contribution to the workload. There was minimal evidence of collaboration or negotiation of roles which resulted in parents feeling stressed or abandoned. Nurses cited busy workload, under‐staffing and inappropriate documentation as key factors which resulted in over‐reliance on parents and hindered their efforts to negotiate and work alongside parents. Conclusions Families are willing to help in their child's care but they require clear guidance, information and support from nurses. Hidden expectations and unclear roles are stressful for families. Nurses need skills training, adequate resources and managerial support to meet families' needs appropriately, to establish true collaboration and to deliver optimal family‐centred care.

  June 26, 2013   doi: 10.1111/hex.12104   open full text
• What do people appreciate in physicians' communication? An international study with focus groups using videotaped medical consultations.
  Maria A. Mazzi, Michela Rimondini, Myriam Deveugele, Christa Zimmermann, Francesca Moretti, Liesbeth van Vliet, Giuseppe Deledda, Ian Fletcher, Jozien Bensing.
  Health Expectations. June 25, 2013
  Background The literature shows that the quality of communication is usually determined from a professional perspective. Patients or lay people are seldom involved in the development of quality indicators or communication. Objective To give voice to the lay people perspective on what constitutes ‘good communication’ by evoking their reactions to variations in physician communication. Design Lay people from four different countries watched the same videotaped standardized medical encounters and discussed their preferences in gender‐specific focus groups who were balanced in age groups. Setting and participants Two hundred and fifty‐nine lay people (64 NL, 72 IT, 75 UK and 48 BE) distributed over 35 focus groups of 6–8 persons each. Main variables studied Comments on doctors' behaviours were classified by the GULiVer framework in terms of contents and preferences. Results Participants prevalently discussed ‘task‐oriented expressions’ (39%: competency, self‐confident, providing solutions), ‘affective oriented/emotional expressions' (25%: empathy, listening, reassuring) and ‘process‐oriented expressions' (23%: flexibility, summarizing, verifying). ‘Showing an affective attitude’ was most appreciated (positive percentage within category: 93%, particularly facilitations and inviting attitude), followed by ‘providing solution’ (85%). Among disfavoured behaviour, repetitions (88%), ‘writing and reading’ (54%) and asking permission (42%) were found. Conclusions Although an affective attitude is appreciated by nearly everybody, people may vary widely in their communication needs and preferences: what is ‘good communication’ for one person may be disliked or even a source of irritation for another. A physician should be flexible and capable of adapting the consultation to the different needs of different patients. This challenges the idea of general communication guidelines.

  June 25, 2013   doi: 10.1111/hex.12097   open full text
• Parents' decision making and access to preventive healthcare for young children: applying Andersen's Model.
  Karyn E. Alexander, Bianca Brijnath, Danielle Mazza.
  Health Expectations. June 25, 2013
  Background and objective Implementing preventive health care for young children provides the best chance of improving health and changing a child's life course. In Australia, despite government support for preventive health care, uptake of preventive services for young children is low. Using Andersen's behavioural model of health‐care utilization, we aimed to understand how parents conceptualized their children's preventive health care and how this impacted on access to preventive health‐care services. Design Semi‐structured telephone interviews conducted between May and July 2011. Setting and participants Twenty‐eight parents of children aged 3–5 years from three diverse socio‐economic areas of Melbourne, Australia. Results Thematic analysis showed parents' access to child preventive health care was determined by birth order of their child, cultural health beliefs, personal health practices, relationship with the health provider and the costs associated with health services. Parents with more than one child placed their own experience ahead of professional expertise, and their younger children were less likely to complete routine preventive health checks. Concerns around developmental delays required validation through family, friends and childcare organizations before presentation to health services. Conclusions To improve child preventive health requires increased flexibility of services, strengthening of inter‐professional relationships and enhancement of parents' knowledge about the importance of preventive health in early childhood. Policies that encourage continuity of care and remove point of service costs will further reduce barriers to preventive care for young children. Recent reforms in Australia's primary health care and the expansion of child preventive health checks into general practice present a timely opportunity for this to occur.

  June 25, 2013   doi: 10.1111/hex.12100   open full text
• What aspects of rehabilitation provision contribute to self‐reported met needs for rehabilitation one year after stroke – amount, place, operator or timing?
  Malin Tistad, Lena Koch, Christina Sjöstrand, Kerstin Tham, Charlotte Ytterberg.
  Health Expectations. June 25, 2013
  Background and Objective To a large extent, people who have suffered a stroke report unmet needs for rehabilitation. The purpose of this study was to explore aspects of rehabilitation provision that potentially contribute to self‐reported met needs for rehabilitation 12 months after stroke with consideration also to severity of stroke. Methods The participants (n = 173) received care at the stroke units at the Karolinska University Hospital, Sweden. Using a questionnaire, the dependent variable, self‐reported met needs for rehabilitation, was collected at 12 months after stroke. The independent variables were four aspects of rehabilitation provision based on data retrieved from registers and structured according to four aspects: amount of rehabilitation, service level (day care rehabilitation, primary care rehabilitation and home‐based rehabilitation), operator level (physiotherapist, occupational therapist, speech therapist) and time after stroke onset. Multivariate logistic regression analyses regarding the aspects of rehabilitation were performed for the participants who were divided into three groups based on stroke severity at onset. Results Participants with moderate/severe stroke who had seen a physiotherapist at least once during each of the 1st, 2nd and 3rd–4th quarters of the first year (OR 8.36, CI 1.40–49.88 P = 0.020) were more likely to report met rehabilitation needs. Conclusion For people with moderate/severe stroke, continuity in rehabilitation (preferably physiotherapy) during the first year after stroke seems to be associated with self‐reported met needs for rehabilitation.

  June 25, 2013   doi: 10.1111/hex.12095   open full text
• Survey of patients' experiences and perceptions of care provided by nurse and pharmacist independent prescribers in primary care.
  Michela Tinelli, Alison Blenkinsopp, Sue Latter, Alesha Smith, Stephen R Chapman.
  Health Expectations. June 24, 2013
  Background In the United Kingdom, nurses and pharmacists who have undertaken additional post‐registration training can prescribe medicines for any medical condition within their competence (non‐medical prescribers, NMPs), but little is known about patients' experiences and perceptions of this service. Objective to obtain feedback from primary care patients on the impact of prescribing by nurse independent prescribers (NIPs) and pharmacist independent prescribers (PIPs) on experiences of the consultation, the patient–professional relationship, access to medicines, quality of care, choice, knowledge, patient‐reported adherence and control of their condition. Design Two cross‐sectional postal surveys. Setting and participants Patients prescribed for by either NIPs or PIPs in six general practices from different regions in England. Results 30% of patients responded (294/975; 149/525 NIPs; 145/450 PIPs). Most said they were very satisfied with their last visit (94%; 87%), they were told as much as they wanted to know about their medicines (88%; 80%), and felt the independent prescriber really understood their point of view (87%; 75%). They had a good relationship with (89%; 79%) and confidence in (84%; 77%) their NMP. When comparing NMP and doctor prescribing services, most patients reported no difference in their experience of care provided, including access to it, control of condition, support for adherence, quality and safety of care. Discussion and conclusions Patients had positive perceptions and experience from their NMP visit. NMPs were well received, and patients' responses indicated the establishment of rapport. They did not express a strong preference for care provided by either their non‐medical or medical prescriber.

  June 24, 2013   doi: 10.1111/hex.12099   open full text
• The attitude of Czech dental patients to the use of rubber dam.
  Martin Kapitan, Lenka Hodacova, Julie Jagelska, Jiri Kaplan, Romana Ivancakova, Zdenka Sustova.
  Health Expectations. June 24, 2013
  Background The most frequent arguments against rubber dam are that patients generally do not like it and the prolonged time of treatment. However, according to several studies, the attitude of patients towards rubber dam is rather positive. Objective To find out the attitudes of patients to treatment with rubber dam; to determine influence of the circumstances of treatment or factors about patients; and to establish a mean time needed for rubber dam placement. Design A questionnaire survey. Setting and participants Patients of general dental practitioners, university clinical specialists and undergraduate dental students. Results A total of 179 questionnaires were distributed, from which 150 were returned. The mean time needed for rubber dam placement was 4 min for students and < 2 min for dentists. For 56% of patients, this had been their first experience with rubber dam. A total of 77% of patients indicated a higher level of comfort during treatment with rubber dam. A preference to the future rubber dam usage was indicated by 86% of patients. The preference to the further rubber dam usage was statistically significantly affected by the level of comfort during the treatment with rubber dam (P < 0.001) and by the sufficiency of explanation of reasons for rubber dam usage (P < 0.05). The other factors presented no statistically significant influence on patients' attitude to rubber dam usage. Conclusions The attitude of patients to rubber dam was rather positive in our study. The time needed for rubber dam application was rather short.

  June 24, 2013   doi: 10.1111/hex.12102   open full text
• Pharmacist intervention in improving hypertension‐related knowledge, treatment medication adherence and health‐related quality of life: a non‐clinical randomized controlled trial.
  Fahad Saleem, Mohamed A. Hassali, Asrul A. Shafie, Noman Haq, Maryam Farooqui, Hisham Aljadhay, Fiaz Ud Din Ahmad.
  Health Expectations. June 20, 2013
  Objective The study evaluated whether a pharmaceutical care intervention can result in better understanding about hypertension, increase medication adherence to antihypertensive therapy and improve overall health‐related quality of life. Methods A non‐clinical randomized control trial was conducted whereby participants received an educational intervention through hospital pharmacists. Hypertension knowledge, medication adherence and health‐related quality of life were measured by means of self‐administered questionnaires. Descriptive statistics were used to describe the demographic and disease characteristics of the patients. Inferential statistics were used for inter‐ and intragroup comparisons. SPSS 17 was used for data analysis. Results Three hundred and eighty‐five hypertensive patients were randomly assigned (192 in the control group and 193 in the intervention group) to the study. No significant differences were observed in either group for age, gender, income, locality, education, occupation or duration of disease. There was, however, a significant increase in the participants' levels of knowledge about hypertension and medication adherence among the interventional group after completing the intervention. Significantly lower systolic and diastolic blood pressure levels were also observed among the interventional group after completion of the intervention. The interventional group, however, reported decreased yet significant health‐related quality of life at the end of the interventional programme. Conclusion Pharmacist intervention can significantly increase disease‐related knowledge, blood pressure control and medication adherence in patients with hypertension. However, further research is needed to address the decreased health‐related quality of life after completion of the study.

  June 20, 2013   doi: 10.1111/hex.12101   open full text
• ‘Distributed health literacy’: longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long‐term health condition.
  Michelle Edwards, Fiona Wood, Myfanwy Davies, Adrian Edwards.
  Health Expectations. June 17, 2013
  Background The role of one's social network in the process of becoming health literate is not well understood. We aim to explain the ‘distributed’ nature of health literacy and how people living with a long‐term condition draw on their social network for support with health literacy‐related tasks such as managing their condition, interacting with health professionals and making decisions about their health. Design This paper reports a longitudinal qualitative interview and observation study of the development and practice of health literacy in people with long‐term health conditions, living in South Wales, UK. Participants were recruited from health education groups (n = 14) and community education venues (n = 4). The 44 interview transcripts were analysed using the ‘Framework’ approach. Results Health literacy was distributed through family and social networks, and participants often drew on the health literacy skills of others to seek, understand and use health information. Those who passed on their health literacy skills acted as health literacy mediators and supported participants in becoming more health literate about their condition. The distribution of health literacy supported participants to manage their health, become more active in health‐care decision‐making processes, communicate with health professionals and come to terms with living with a long‐term condition. Participants accessed health literacy mediators through personal and community networks. Conclusion Distributed health literacy is a potential resource for managing one's health, communicating with health professionals and making health decisions.

  June 17, 2013   doi: 10.1111/hex.12093   open full text
• Choosing vs. allocating: discrete choice experiments and constant‐sum paired comparisons for the elicitation of societal preferences.
  Chris D. Skedgel, Allan J. Wailoo, Ron L. Akehurst.
  Health Expectations. June 12, 2013
  Background There is growing evidence of a reluctance to allocate health care solely on the basis of maximizing quality‐adjusted life years (QALYs). Stated preference methods can be used to elicit preferences for efficiency vs. equity in the allocation of health‐care resources. Objective To compare discrete choice experiment (DCE) and constant‐sum paired comparison (CSPC) methods for eliciting societal preferences. Methods Over a series of choice pairs, DCE respondents allocated a fixed budget to one preferred group and CSPC respondents allocated budget percentages between the groups. Questionnaires were compared in terms of completion rates, preference consistency, dominant preferences and derived attribute importance. Results There was no significant difference in the proportions that rated the questionnaires somewhat or extremely difficult, but a significantly greater proportion completed the DCE compared to the CSPC. Preference consistency was also higher in the DCE. The incidence of dominant preferences, including for aggregate QALYs, was low and not significantly different between questionnaires. Similarly, no CSCP respondents equalized budgets or outcomes in every task. Final health state was the most important attribute in both questionnaires, but the rankings diverged for the other attributes. Notably, the total patients' treated attribute was important in the CSPC but insignificant in the DCE, perhaps reflecting a ‘prominence effect’. Conclusions Despite lower completion rates and preference consistency, CSPC may offer advantages over DCE in eliciting preferences over the distribution of resources and/or outcomes as well as attribute levels, avoiding extreme ‘all‐or‐nothing’ distributions and possibly aligning respondent attention more closely with a societal perspective.

  June 12, 2013   doi: 10.1111/hex.12098   open full text
• Laypersons' views of material incentives for enhancing colorectal cancer screening.
  Lea Hagoel, Gad Rennert, Paula Feder‐Bubis.
  Health Expectations. June 09, 2013
  Background Colorectal cancer (CRC) early detection improves health outcomes; screening programmes invest efforts in initiating invitations to target populations to be tested. Enhanced adherence is essential for reduction of morbidity and mortality. Participation rates in Israel are still relatively low. Objective To explore lay views regarding the concept of receiving material incentives in exchange for enhanced adherence to CRC screening. Research design Qualitative study. Between November 2009 and February 2010 six focus group discussions were carried out in two urban, middle and low socio‐economic status primary care clinics in a Northern city in Israel. Participants were eligible individuals for CRC screening, aged 50–68 (N = 24). Data analysis followed the principles of grounded theory, supported by qualitative software. Results Participants found administering incentives in exchange for CRC screening inappropriate on rational and moral grounds. They valued their relations with the medical team and the health system more than the potential gain expected. Individuals eligible for CRC screening perceived themselves as responsible for their health, admitting difficulties in realizing this responsibility. Incentives were reported unsuitable for solving reported screening difficulties and a potential harm to the doctor–patient relationship. Conclusions Focus group participants expressed an unconventional voice towards the use of material incentives. They pointed to the need for focused support of health behaviour change and valued their autonomy. While a proportion of the invitees in the target population see the importance of screening and appreciate the HMO's initiative to invite them for testing, they also expressed their need for support from the HMO in realizing the recommended health behaviour.

  June 09, 2013   doi: 10.1111/hex.12094   open full text
• The willingness of informal caregivers to assist their care‐recipient to use Home Medicines Review.
  Stephen R. Carter, Rebekah Moles, Lesley White, Timothy F. Chen.
  Health Expectations. June 06, 2013
  Objectives Informal caregivers experience daily hassles – a form of persistent stress, as a consequence of caregiving. This study aimed to develop and test a new theoretical model of health information‐seeking behaviour, the Knowledge Hassles Information Seeking Model (KHISM). KHISM hypothesized that the knowledge hassles of caregivers – daily stressors experienced while dealing with tasks which require knowledge about the safety and effectiveness of the care‐recipients' medicines – would influence caregivers' willingness to assist their care‐recipient to use an Australian medication management service, Home Medicines Review (HMR). Methods A cross‐sectional postal survey was conducted among 2350 members of Carers (NSW, Australia). Respondents were included in the study if they were involved in medication‐related tasks for their care‐recipient and were not paid as caregivers. Also, their care‐recipient needed to be taking more than five medicines daily or more than 12 doses daily and had not yet experienced HMR. Structural equation modelling was used to test the model. Results A total of 324 useable surveys were returned yielding a response rate of 14%. Respondents were quite willing to assist their care‐recipient to use HMR (willingness). The model predicted 51% of the variation in willingness. Knowledge hassles increased positive outcome expectancy (β = 0.40, P < 0.05) and indirectly increased willingness. Conclusions The more caregivers experience hassles with medication knowledge, the more they perceive HMR to be a helpful information source and the more willing they are to use it. Targeted marketing centred on HMR as an information source may increase caregivers' demand for HMR. Further exploration of the phenomenon of knowledge hassles is warranted.

  June 06, 2013   doi: 10.1111/hex.12092   open full text
• Patient and service user engagement in research: a systematic review and synthesized framework.
  Nathan D. Shippee, Juan Pablo Domecq Garces, Gabriela J. Prutsky Lopez, Zhen Wang, Tarig A. Elraiyah, Mohammed Nabhan, Juan P. Brito, Kasey Boehmer, Rim Hasan, Belal Firwana, Patricia J. Erwin, Victor M. Montori, M Hassan Murad.
  Health Expectations. June 03, 2013
  Background There is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices. Objective This paper utilizes a systematic review and environmental scan to derive an evidence‐based framework for PSUE. Design A metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group (PAG). Eligible sources English‐language studies, commentaries, grey literature and other sources (including systematic and non‐systematic reviews) pertaining to patient and public involvement in biomedical and health services research. Data extracted Study description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE‐related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions. Results Overall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE. Sources were synthesized into a two‐part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re‐assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational. Discussion and Conclusions Efforts at developing a solid evidence base on PSUE are limited by the non‐standard and non‐empirical nature of much of the literature. Our proposed two‐part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE.

  June 03, 2013   doi: 10.1111/hex.12090   open full text
• Linking people with long‐term health conditions to healthy community activities: development of Patient‐Led Assessment for Network Support (PLANS).
  Christian Blickem, Anne Kennedy, Ivaylo Vassilev, Rebecca Morris, Helen Brooks, Praksha Jariwala, Tom Blakeman, Anne Rogers.
  Health Expectations. June 03, 2013
  Objective To combine insights from service users with long‐term conditions (LTCs) to assist the development of a community referral intervention designed to promote engagement and improve access to health‐relevant resources. Background Social deprivation and reduced access to resources have been causally linked with social isolation and the ability to manage LTCs. Participation in meaningful activity has been associated with positive health benefits, and strategies to promote access to community activities have shown some potential to improve outcomes for people with LTCs. This suggests the need to develop an engagement and referral intervention in partnership with service users and community groups as part of mainstream self‐care support. Method A series of focus groups and interviews with members of community groups in Greater Manchester designed as an iterative and collaborative approach to elicit the role of personal and community networks that support long‐term condition management (LTCM) to develop a community referral tool. Results Participants reported a broad range of resources relevant to LTCM that often went beyond the usual concerns associated with self‐care. This helped to inform a tool (PLANS) to tailor access to types of community‐based resources which can support LTCM. Conclusions Understanding the everyday challenges of living with a LTC highlighted the importance of connecting and engaging with localized support for people. In response to this, we developed an intervention (PLANS) which tailors access to local resources based on personal preferences, needs and acceptability to encourage service users to engage with sustainable health choices.

  June 03, 2013   doi: 10.1111/hex.12088   open full text
• Drivers of overall satisfaction with primary care: evidence from the English General Practice Patient Survey.
  Charlotte A. M. Paddison, Gary A. Abel, Martin O. Roland, Marc N. Elliott, Georgios Lyratzopoulos, John L. Campbell.
  Health Expectations. May 30, 2013
  Background/objectives To determine which aspects of primary care matter most to patients, we aim to identify those aspects of patient experience that show the strongest relationship with overall satisfaction and examine the extent to which these relationships vary by socio‐demographic and health characteristics. Design/setting Data from the 2009/10 English General Practice Patient Survey including 2 169 718 respondents registered with 8362 primary care practices. Measures/analyses Linear mixed‐effects regression models (fixed effects adjusting for age, gender, ethnicity, deprivation, self‐reported health, self‐reported mental health condition and random practice effect) predicting overall satisfaction from six items covering four domains of care: access, helpfulness of receptionists, doctor communication and nurse communication. Additional models using interactions tested whether associations between patient experience and satisfaction varied by socio‐demographic group. Results Doctor communication showed the strongest relationship with overall satisfaction (standardized coefficient 0.48, 95% CI = 0.48, 0.48), followed by the helpfulness of reception staff (standardized coefficient 0.22, 95% CI = 0.22, 0.22). Among six measures of patient experience, obtaining appointments in advance showed the weakest relationship with overall satisfaction (standardized coefficient 0.06, 95% CI = 0.05, 0.06). Interactions showed statistically significant but small variation in the importance of drivers across different patient groups. Conclusions For all patient groups, communication with the doctor is the most important driver of overall satisfaction with primary care in England, along with the helpfulness of receptionists. In contrast, and despite being a policy priority for government, measures of access, including the ability to obtain appointments, were poorly related to overall satisfaction.

  May 30, 2013   doi: 10.1111/hex.12081   open full text
• Conceptualizing the outcomes of involving people who use mental health services in policy development.
  Gayle Restall.
  Health Expectations. May 29, 2013
  Context Inclusion of people who use mental health services in policymaking is a goal of many mental health systems. However, the outcomes of such involvement have not been well articulated or researched. Objectives The objectives of this research were to explore how the social and personal outcomes of citizen‐user involvement in mental health policymaking were conceptualized by policy actors and to create a conceptual framework to guide the development and evaluation of citizen‐user involvement. Design This qualitative instrumental case study explored the phenomenon of citizen‐user involvement using the policy field of mental health and social housing policy in the Province of Manitoba, Canada, as the focal case. Participants A total of 21 informants from four policy actor groups, citizen‐users, representatives of advocacy organizations, government officials and service providers, participated in key informant interviews. Data also included policy documents relevant to the policy field. Analysis Data collected from interviews and policy documents were analysed using an inductive qualitative paradigm. Results Participants identified multiple outcomes of citizen‐user involvement in policymaking. The resulting conceptual framework illustrated how outcomes in personal, substantive, instrumental and normative dimensions influence micro‐, meso‐ and macrosocial structures. The results also provided a cautionary tale by suggesting how attention needs to be paid to managing the risks as well as optimizing the rewards of involvement. Conclusions The framework has application in guiding the development and evaluation of mechanisms that aim to involve citizen‐users in policymaking. The framework encourages an approach that takes into account the complexity and multidimensional nature of engaging citizen‐users.

  May 29, 2013   doi: 10.1111/hex.12091   open full text
• Patients' expectations of osteopathic care: a qualitative study.
  Vinette Cross, C. M. Janine Leach, Carol A. Fawkes, Ann P. Moore.
  Health Expectations. May 29, 2013
  Background Research has shown that patients' expectations of health care and health‐care practitioners are complex and may have a significant impact on outcomes of care. Little is known about the expectations of osteopathic patients. Objectives To explore osteopathic patients' expectations of private sector care. Design Focus groups and individual interviews with purposively selected patients; this was the qualitative phase of a mixed methods study, the final phase being a patient survey. Setting and participants A total of 34 adult patients currently attending for treatment at private osteopathic practices across the United Kingdom. Intervention Focus group discussions and individual interviews around expectations before, during and after osteopathic care. Outcome measures Thematic analysis of text data to identify topics raised by patients and to group these into broad themes. Results Many components of expectation were identified. A preliminary conceptual framework describing the way the therapeutic encounter is approached in osteopathy comprised five themes: individual agency, professional expertise, customer experience, therapeutic process and interpersonal relationship. Discussion and Conclusion The components of expectation identified in this phase of the study provided potential question topics for the survey questionnaire in the subsequent phase of the investigation. The model developed in this study may add a new perspective to existing evidence on expectations. Further research is recommended to test the findings both within private practice and the National Health Service.

  May 29, 2013   doi: 10.1111/hex.12084   open full text
• Do patients’ information requirements for choice in health care vary with their socio‐demographic characteristics?
  Anthony A. Laverty, Anna Dixon, Christopher Millett.
  Health Expectations. May 28, 2013
  Objectives This study examines whether the information used to inform hospital choice, and the sources of that information, varies with patients’ socio‐demographic characteristics. It also examines whether information used by patients to inform choice is associated with attending their local hospital. Methods A survey of 1033 patients who were offered a choice of hospital provider for elective treatment in England. Logistic regression was used to examine associations between patient characteristics and information used to inform choice of a hospital provider and sources of information used. Results Factors most important to patients in choosing a hospital were quality of care, cleanliness, standard of facilities and reputation. While quality of care and related factors are important to the majority of patients, those with lower levels of education were more likely to report that location and appointment times were important. Those who thought quality important were more likely to attend their local hospital provider. The main sources of information used to inform choice of hospital were own experience, family and friends and the general practitioner (GP). Patients who sought advice from their GP or booking advisors were less likely to attend their local hospitals. Conclusions Differences among patients as to what factors are important when choosing a hospital provider and what information and support they access suggest there needs to be a variety of information sources and support available to promote choice. Greater shared decision making through active involvement and support by GPs or booking advisors may be required if they are to make choices in line with their preferences.

  May 28, 2013   doi: 10.1111/hex.12086   open full text
• How technology is empowering patients? A literature review.
  Jorge Calvillo, Isabel Román, Laura M. Roa.
  Health Expectations. May 28, 2013
  Background The term ‘Patient Empowerment’ (PE) is a growing concept – so in popularity as in application – covering situations where citizens are encouraged to take an active role in the management of their own health. This concept is serving as engine power for increasing the quality of health systems, but a question is still unanswered, ‘how PE will be effectively achieved?’ Beyond psychological implications, empowerment of patients in daily practice relies on technology and the way it is used. Unfortunately, the heterogeneity of approaches and technologies makes difficult to have a global vision of how PE is being performed. Objective To clarify how technology is being applied for enhancing patient empowerment as well as to identify current (and future) trends and milestones in this issue. Search strategy Searches for relevant English language articles using Medline, Scopus, ACM Digital Library, Springer Link, EBSCO host and ScienceDirect databases from the year 2000 until October 2012 were conducted. Among others, a selection criterion was to review articles including terms ‘patient’ and ‘empowerment’ in title, abstract or as keywords. Main results and conclusions Results state that practical approaches to empower patients vary in scope, aim and technology. Health literacy of patients, remote access to health services, and self‐care mechanisms are the most valued ways to accomplish PE. Current technology already allows establishing the first steps in the road ahead, but a change of attitude by all stakeholders (i.e. professionals, patients, policy makers, etc.) is required.

  May 28, 2013   doi: 10.1111/hex.12089   open full text
• The care delivery experience of hospitalized patients with complex chronic disease.
  Kerry Kuluski, Sylvia N. Hoang, Alexis K. Schaink, Celeste Alvaro, Renee F. Lyons, Roy Tobias, Cécile M. Bensimon.
  Health Expectations. May 27, 2013
  Objective This study investigated what is important in care delivery from the perspective of hospital inpatients with complex chronic disease, a currently understudied population. Participants and Setting One‐on‐one semi‐structured interviews were conducted with inpatients at a continuing care/rehabilitation hospital (n = 116) in Canada between February and July 2011. Design The study design was mixed methods and reports on patient characteristics and care delivery experiences. Basic descriptive statistics were run using SPSS version 17, and thematic analysis on the transcripts was conducted using NVivo9 software. Results Patients had an average of 5 morbidities and several illness symptoms including activity of daily living impairments, physical pain and emotional disturbance. Three broad themes (each with one or more subthemes) were generated from the data representing important components of care delivery: components of the care plan (a comprehensive assessment, supported transitions and a bio‐psycho‐social care package); care capacity and quality (optimal staff to patient ratios, quicker response times, better patient–provider communication and consistency between providers) and the patient–provider relationships (characterized by respect and dignity). Conclusions As health systems throughout the industrialized world move to sustain health budgets while optimizing quality of care, it is critical to better understand this population, so that appropriate metrics, services and policies can be developed. The study has generated a body of evidence on the important components of care delivery from the perspectives of a diverse group of chronically ill individuals who have spent a considerable amount of time in the health‐care system. Moving forward, exploration around the appropriate funding models and skill mix is needed to move the evidence into changed practice.

  May 27, 2013   doi: 10.1111/hex.12085   open full text
• Aiming for inclusion: a case study of motivations for involvement in mental health‐care governance by ethnic minority users.
  Cláudia de Freitas.
  Health Expectations. May 27, 2013
  Objective To examine the motivations for involvement in mental health‐care governance by socially disadvantaged ethnic minority users. Design and setting A qualitative case study approach was employed to investigate the involvement of minority north‐eastern users in mental health‐care governance at CAPS Pedro Pellegrino in Rio de Janeiro, Brazil. Semi‐structured interviews with minority Northeasterners (n = 12) and institutional stakeholders (n = 26) were complemented by participant observation of user assembly and user movement meetings. Findings Minority Northeasterners express both individual and collective motivations for involvement in mental health‐care governance. Individual motivations include the desire to increase social interaction, acquire meaningful social roles and overcome the stigma attached to mental illness. Collective motivations include the intent to improve the responsiveness of mental health care and achieve social justice for people with mental problems. Taken together, these motivations demonstrate a strong aspiration by users to promote their social inclusion and the inclusion of others who also experience marginalization. Results also reveal that the involvement of long‐term participants is driven mostly by collective goals while early‐stage participants focus predominantly in dealing with individual concerns. This is at odds with the mutual incentives theory, which postulates that collective motivations prevail over individual motivations in explaining user involvement. Conclusion Groups historically excluded from decision‐making processes may identify social inclusion as the core goal of their involvement. Initiatives aiming to increase user participation in health‐care governance must address the range of motivations driving the involvement of users, instead of focusing solely on issues related to health‐care management and provision.

  May 27, 2013   doi: 10.1111/hex.12082   open full text
• Self‐management and skills acquisition in boys with haemophilia.
  Kate Khair, Liz Meerabeau, Faith Gibson.
  Health Expectations. May 27, 2013
  Background There is an increasing prevalence of children/young people with long‐term conditions (LTC) in the UK due to improvements in health‐care management and delivery. These children are often involved, from an early age, in their own care and management; yet, there are little data to support how or when they develop the necessary skills and knowledge to become competent at this care. Objective This study aimed to understand self‐management of haemophilia, from a child's perspective, in the 21st century in the UK where intensive prophylactic therapy is given from early childhood. Design A qualitative study using grounded theory to evaluate life‐experiences of children and young people with haemophilia. Setting and participants Thirty boys aged 4–16 with severe haemophilia treated at a single paediatric haemophilia care centre were interviewed at home or in a focus group. Intervention/variables Multimethod qualitative research including age‐appropriate research tools (draw and write, photo‐elicitation and interviews) to facilitate data collection from children. Results Boys develop self‐management skills over time. They learn from health‐care professionals, their parents and other family members with haemophilia. Discussion Self‐management skills (bleed recognition, self‐infusion, self and medicines management, pain and risk management and conceptualizing preventative therapy) are developed through experiential learning and individualized education, and not through formalized expert patient programmes. Conclusion The boys in this study have benefited from early prophylactic factor replacement therapy. They develop skills in haemophilia and self‐management at a relatively young age and are experts in their own haemophilia care.

  May 27, 2013   doi: 10.1111/hex.12083   open full text
• Health literacy among consumers in community pharmacy: perceptions of pharmacy staff.
  Therese E. Kairuz, Kim M. Bellamy, Elisabeth Lord, Remo Ostini, Lynne M. Emmerton.
  Health Expectations. May 26, 2013
  Background Low health literacy has important consequences for health status, medication adherence and use of health services. There is little insight from the perspective of pharmacy staff into how they identify the information needs of consumers and particularly the signals and risk factors of limited health literacy that they encounter in their day‐to‐day communication with consumers. Objective To investigate factors impacting on consumer health literacy, from the perspective of pharmacy staff. Methods The research comprised semi‐structured interviews conducted in a convenience sample of pharmacies in the south‐east region of Queensland, Australia. Eleven pharmacists and nine pharmacy assistants agreed to participate. Interviews were audio‐recorded and transcribed verbatim. Initial coding of the anonymized transcripts was performed using NVivo®. Codes were analysed into overarching themes and subthemes, which were then re‐named and refined through consensus discussion. Results Three overarching themes were identified from the coding process: complexity of the health system, clarity of information, and dialogue among consumers and health‐care professionals. Two of the themes were system related, namely the health system and pharmacy labels; the health literacy issues included lack of clarity, complexity and misunderstanding. The third theme was related to communication. Conclusions Complexity of the health system, clarity of information and dialogue among consumers and health‐care professionals were identified as factors associated with consumers' health literacy. We call for increased engagement between pharmacy staff and consumers with improved focus on areas of potential confusion, such as medicine labels and navigation of the health system, aiming to minimize negative consequences of limited health literacy and optimize patient health outcomes.

  May 26, 2013   doi: 10.1111/hex.12077   open full text
• A systematic review of research into black and ethnic minority patients' views on self‐management of type 2 diabetes.
  Rabiya Majeed‐Ariss, Cath Jackson, Peter Knapp, Francine M. Cheater.
  Health Expectations. May 26, 2013
  Context Eliciting patients' views of type 2 diabetes self‐management provides insights on how policy and services might better support the needs of this population. Objective To synthesize black and ethnic minority patients' views on the barriers and facilitators influencing the self‐management of type 2 diabetes. Search strategy A systematic search of international literature published in nine electronic databases was undertaken in 2008. Search strategies used both MeSH and free‐text terms. Two relevant journals were also hand searched. Inclusion criteria Any primary empirical study published in the English language since 1986 that reported black and ethnic minority patients' views on type 2 diabetes self‐management. Data extraction and synthesis Data were extracted and study quality was formally assessed. Data were analysed using thematic synthesis. Main results Fifty‐seven studies were included, of qualitative (n = 54), mixed‐method (n = 2) or quantitative (n = 1) design. Studies were from North America (n = 41), Europe (n = 14) and Australia (n = 2), including 1735 participants in total. Three analytical themes emerged: ‘Importance of identity’; ‘Being understood by others’ and ‘Making sense of condition’, all linked conceptually under the overarching theme ‘Sense of self’. The quality of the studies varied. Discussion and conclusions The findings provide insight into what black and minority ethnic people regard as the barriers to, and facilitators of self‐management, as opposed to what health professionals, policy makers and trial researchers may have assumed. Recognition of the views of people with diabetes is essential for the design and delivery of patient‐centred care and policies.

  May 26, 2013   doi: 10.1111/hex.12080   open full text
• The politics of patient‐centred care.
  Sara A. Kreindler.
  Health Expectations. May 22, 2013
  Background Despite widespread belief in the importance of patient‐centred care, it remains difficult to create a system in which all groups work together for the good of the patient. Part of the problem may be that the issue of patient‐centred care itself can be used to prosecute intergroup conflict. Objective This qualitative study of texts examined the presence and nature of intergroup language within the discourse on patient‐centred care. Methods A systematic SCOPUS and Google search identified 85 peer‐reviewed and grey literature reports that engaged with the concept of patient‐centred care. Discourse analysis, informed by the social identity approach, examined how writers defined and portrayed various groups. Results Managers, physicians and nurses all used the discourse of patient‐centred care to imply that their own group was patient centred while other group(s) were not. Patient organizations tended to downplay or even deny the role of managers and providers in promoting patient centredness, and some used the concept to advocate for controversial health policies. Intergroup themes were even more obvious in the rhetoric of political groups across the ideological spectrum. In contrast to accounts that juxtaposed in‐groups and out‐groups, those from reportedly patient‐centred organizations defined a ‘mosaic’ in‐group that encompassed managers, providers and patients. Conclusion The seemingly benign concept of patient‐centred care can easily become a weapon on an intergroup battlefield. Understanding this dimension may help organizations resolve the intergroup tensions that prevent collective achievement of a patient‐centred system.

  May 22, 2013   doi: 10.1111/hex.12087   open full text
• Family meetings for older adults in intermediate care settings: the impact of patient cognitive impairment and other characteristics on shared decision making.
  Catherine M. Milte, Julie Ratcliffe, Owen Davies, Craig Whitehead, Stacey Masters, Maria Crotty.
  Health Expectations. May 20, 2013
  Background Clinicians, older adults and caregivers frequently meet to make decisions around treatment and lifestyle during an acute hospital admission. Patient age, psychological status and health locus of control (HLC) influence patient preference for consultation involvement and information but overall, a shared‐decision‐making (SDM) approach is favoured. However, it is not known whether these characteristics and the presence of cognitive impairment influence SDM competency during family meetings. Objective To describe meetings between older adults, caregivers and geriatricians in intermediate care and explore patient and meeting characteristics associated with a SDM communication style. Methods Fifty‐nine family meetings involving geriatricians, patients in an intermediate care setting following an acute hospital admission and their caregivers were rated using the OPTION system for measuring clinician SDM behaviour. The geriatric depression scale and multidimensional HLC scale were completed by patients. The mini‐mental state exam (MMSE) assessed patient's level of cognitive impairment. Results Meetings lasted 38 min (SD 13) and scored 41 (SD 17) of 100 on the OPTION scale. Nine (SD 2.2) topics were discussed during each meeting, and most were initiated by the geriatrician. Meeting length was an important determinant of OPTION score, with higher SDM competency displayed in longer meetings. Patient characteristics, including MMSE, HLC and depression did not explain SDM competency. Conclusion Whilst SDM can be achieved during consultations frail older patients and their caregivers, an increased consultation time is a consequence of this approach.

  May 20, 2013   doi: 10.1111/hex.12076   open full text
• Problems and hopes perceived by mothers, fathers and physicians of children receiving palliative care.
  Douglas L. Hill, Victoria A. Miller, Kari R. Hexem, Karen W. Carroll, Jennifer A. Faerber, Tammy Kang, Chris Feudtner.
  Health Expectations. May 20, 2013
  Background The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. Objective (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left ‘hopeless’. Method Seventy‐one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians. Results The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65–66%) and hope domains (59–63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively). Conclusion Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.

  May 20, 2013   doi: 10.1111/hex.12078   open full text
• How oncologists communicate information to women with recurrent ovarian cancer in the context of treatment decision making in the medical encounter.
  Lorraine M. Elit, Cathy Charles, Amiram Gafni, Jennifer Ranford, Sara Tedford‐Gold, Irving Gold.
  Health Expectations. May 13, 2013
  Background Women with recurrent ovarian cancer depend on their physicians to provide them with information about their diagnosis and available treatment options if they wish to participate in the process of choosing the treatment. There is no information on how oncologists give information to women during the physician–patient encounter at the time the disease recurs. Objectives To explore from the oncologists' perspective (i) the extent to which oncologists provide their own patients who are experiencing their first recurrence of ovarian cancer with the same information about management options, and (ii) any explicit or implicit criteria they use to decide whether and how to tailor the information to individual patients. Methods We adopted a qualitative, exploratory descriptive approach to begin to understand oncologists' perspectives on how they gave information to patients within the context of their clinical practice. Individual interviews were used to identify themes related to the study objectives. Results Fifteen gynaecologic and five medical oncologists participated. Theme 1 describes the extent to which oncologists give information to their patients in the same way or in different ways. This section describes how the same oncologist may modify the depth of information transfer based on several factors. Theme 2 focuses on the factors that influence what information is given. For example, the amount and type of information given is based on the oncologist's on‐going assessment of how the patient is assimilating the information shared during the medical encounter, the oncologists' perception of their relationship with the patient and the oncologist's assessment of what role they should take in decision making. Theme 3 involves the factors that influenced how information is given. For example, the information shared may vary based on the oncologist's perception of the patient's vitality, the patient's comprehension of the information, the patient's emotional well‐being. In addition, the oncologist may make the information relevant for the patient by using analogies. Different types of information may be shared based on the oncologist's perception of patient‐ or family‐initiated question. The information relay may be curtailed based on competing demands for the oncologist. Discussion and Conclusions Oncologists provide women with information on their disease status, their treatment options and the side effects of treatment. The oncologists use perceptions to determine what information and how to provide information. The question this paper raises is whether the oncologist's perceptions reflect the individual patient's information and decision‐making needs.

  May 13, 2013   doi: 10.1111/hex.12079   open full text
• Inpatients' expectations and experiences of hospital pharmacy services: qualitative study.
  Charles W. Morecroft, David Thornton, Neil A. Caldwell.
  Health Expectations. May 05, 2013
  Introduction Hospital pharmacists' have traditionally focused on the manufacture and supply of medicines. However, the increasing complexity and range of medicines and a greater awareness of medication errors has facilitated a change towards a patient‐centred role. Given this movement, it is surprising that a search of the published literature shows very little research that evaluated patients' views of hospital‐based pharmacy services. Objective To explore inpatients' expectations and experiences of hospital‐based pharmacy services. Study setting and design Face‐to‐face semi‐structured interviews with inpatients admitted to acute medical wards of three NHS general hospitals. Principal findings Seventy‐four inpatients were interviewed: 37 were male with average age 73 years (age range of 19 –86 years). The predominate number of participants (62/74, 84%) being in the 65–80 years of age group. Thematic analysis of the data was driven by three themes; patients' expectations of the pharmacist's involvement in their treatment and care, the patients' experiences of any interaction that may have taken place and the patients' evaluation of their interaction with the pharmacist. Conclusions There was a dichotomy of expectations and opinions from patients about the role of hospital pharmacists and the services being provided. As pharmacists' roles are developing towards a patient‐orientated model in which pharmacists have direct contact with patients and their care, it is important to ensure that patients are aware of these developments to help them maximize the benefit they derive from their country's health‐care system.

  May 05, 2013   doi: 10.1111/hex.12074   open full text
• Women's experiences with information provision and deciding about fertility preservation in the Netherlands: ‘satisfaction in general, but unmet needs’.
  Mirjam M. Garvelink, Moniek M. ter Kuile, Rinske M. Bakker, Willemijn J. Geense, Esther Jenninga, Leoni A. Louwé, Carina G. J. M. Hilders, Anne M. Stiggelbout.
  Health Expectations. May 05, 2013
  Objective It is not well‐known how women receiving counselling consultation about fertility preservation (FP) in the Netherlands perceive the information provision about and referral for FP in the oncology setting. The aim of this study was to qualitatively explore women's experiences with the (process of) information provision about the gonadotoxic effects of cancer treatment and about FP and the decision‐making process and to obtain their recommendation for improvements. Methods Semi‐structured interviews with female patients with cancer who had received a counselling consultation on FP (at 18–40 years of age). Results Thirty‐four interviews were held (response rate 64%). Information provision was considered to be important. Overall, women were satisfied with the timing and the content of the information, but women were less positive about the need to be assertive to get information, and the multiplicity of decisions and actions to be carried out in a very short time frame. Conclusions Information provision on gonadotoxic effects of cancer treatment and about FP was overall deemed sufficient, timely and important. Women recommended standardization of the information provision, improvement of communication among clinicians and medical centres, and availability of FP‐specific patient information materials to improve future information provision processes.

  May 05, 2013   doi: 10.1111/hex.12068   open full text
• Opting out of dialysis – Exploring patients' decisions to forego dialysis in favour of conservative non‐dialytic management for end‐stage renal disease.
  Angeline S. T. Seah, Fiona Tan, Subramaniam Srinivas, Huei Yei Wu, Konstadina Griva.
  Health Expectations. May 05, 2013
  Background Dialysis prolongs the life of people with end‐stage renal disease (ESRD), but for patients who are elderly and suffer multiple comorbid illnesses the benefits of dialysis may be outweighed by its negative consequences. Non‐dialytic conservative management has therefore become an alternative treatment route, yet little is known on patients' experience with choosing end‐of‐life treatment. Aims To gain insight into the decision‐making process leading to opting out of dialysis and the experience with conservative non‐dialytic management from the patients' perspective. Design Qualitative study using semi‐structured interviews. Interpretative phenomenological analysis was undertaken as the framework for data analysis. Setting/Participants N = 9 ESRD participants who have taken the decision to forego dialysis were recruited from the advanced care programme under the National Healthcare Group, Singapore. Results Participants discussed life since ESRD diagnosis, and the personal and contextual factors that led them to choose conservative management. The perceived physical and financial burden of dialysis both for the individual but most importantly for their family, uncertainty over likely gains over risks which were fuelled by communication of negative dialysis stories of others, coupled with sense of life completion and achievement led them to refuse dialysis. All participants took ownership of their decision despite contrary advice by doctors and were content with their decision and current management. Conclusions Study highlights the factors driving patients' decisions for conservative non‐dialytic management over dialysis to allow medical professionals to offer appropriate support to patients through their decision‐making process and in caring them for the rest of their lives.

  May 05, 2013   doi: 10.1111/hex.12075   open full text
• An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence‐based epistemic settings.
  Hester M. van de Bovenkamp, Teun Zuiderent‐Jerak.
  Health Expectations. May 02, 2013
  Background Patient participation on both the individual and the collective level attracts broad attention from policy makers and researchers. Participation is expected to make decision making more democratic and increase the quality of decisions, but empirical evidence for this remains wanting. Objective To study why problems arise in participation practice and to think critically about the consequence for future participation practices. We contribute to this discussion by looking at patient participation in guideline development. Methods Dutch guidelines (n = 62) were analysed using an extended version of the AGREE instrument. In addition, semi‐structured interviews were conducted with actors involved in guideline development (n = 25). Results The guidelines analysed generally scored low on the item of patient participation. The interviews provided us with important information on why this is the case. Although some respondents point out the added value of participation, many report on difficulties in the participation practice. Patient experiences sit uncomfortably with the EBM structure of guideline development. Moreover, patients who develop epistemic credibility needed to participate in evidence‐based guideline development lose credibility as representatives for ‘true’ patients. Discussion and conclusions We conclude that other options may increase the quality of care for patients by paying attention to their (individual) experiences. It will mean that patients are not present at every decision‐making table in health care, which may produce a more elegant version of democratic patienthood; a version that neither produces tokenistic practices of direct participation nor that denies patients the chance to contribute to matters where this may be truly meaningful.

  May 02, 2013   doi: 10.1111/hex.12067   open full text
• The use of haematopoietic stem cell transplantation in Fanconi anaemia patients: a survey of decision making among families in the US and Canada.
  Sadie P. Hutson, Paul K. J. Han, Jada G. Hamilton, Sean C. Rife, Mohamad M. Al‐Rahawan, Richard P. Moser, Seth P. Duty, Sheeba Anand, Blanche P. Alter.
  Health Expectations. April 29, 2013
  Background Fanconi anaemia (FA) is a rare genetic disorder associated with bone marrow failure (BMF), congenital anomalies and cancer susceptibility. Stem cell transplantation (SCT) offers a potential cure for BMF or leukaemia, but incurs substantial risks. Little is known about factors influencing SCT decision making. Objective The study objective was to explore factors influencing patients' with FA and family members' decision making about SCT. Design Using a mixed‐methods exploratory design, we surveyed US and Canadian patients with FA and family members who were offered SCT. Main variables studied Closed‐ended survey items measured respondents' beliefs about the necessity, risks and concerns regarding SCT; multivariable logistic regression was used to examine the association between these factors and the decision to undergo SCT. Open‐ended survey items measured respondents' perceptions of factors important to the SCT decision; qualitative analysis was used to identify emergent themes. Results The decision to undergo SCT was significantly associated with greater perceived necessity (OR = 2.81, P = 0.004) and lower concern about harms of SCT (OR = 0.31, P = 0.03). Qualitative analysis revealed a perceived lack of choice among respondents regarding the use of SCT, which was related to physician influence and respondent concerns about patients' quality of life. Conclusions Overall, study results emphasize the importance of the delicate interplay between provider recommendation of a medical procedure and patient/parental perceptions and decision making. Findings can help providers understand the need to acknowledge family members' perceptions of SCT decision making and offer a comprehensive discussion of the necessity, risks, benefits and potential outcomes.

  April 29, 2013   doi: 10.1111/hex.12066   open full text
• Women's perspectives are required to inform the development of maternal obesity services: a qualitative study of obese pregnant women's experiences.
  Nicola Heslehurst, Sarah Russell, Helene Brandon, Camilla Johnston, Carolyn Summerbell, Judith Rankin.
  Health Expectations. April 26, 2013
  Background Increasing maternal obesity trends and accompanying risks have led to the development of guidelines internationally. However, the evidence‐base is poor for effective intervention, and there is a lack of representation from the perspective of obese pregnant women in guidelines. Women's engagement with weight management support services is low. Objective To explore obese pregnant women's experiences to better understand factors which need to be considered when developing services that women will find acceptable and utilize. Population Obese women referred to an antenatal dietetic service in the Northeast of England, UK. Methods Low‐structured depth‐interviews allowed women to freely discuss their own experiences. Discussion prompts were included; however, issues that women raised were explored thoroughly. Women summarized what they considered most important to ensure the analyses placed appropriate emphasis on factors women perceived as important. Thematic analysis identified common themes. Saturation was confirmed after 15 interviews. Results Key issues included: women's weight; families; experience of negativity; and priorities and desired outcomes. These combined represented women's perspectives of issues which they considered important and integral to their lived experience of being obese and pregnant. The theme incorporates women's pregnancy‐related experiences, as well as life experiences which contributed to how they felt about their weight during pregnancy. Conclusions There are strong associations with women's lived experiences and engagement with antenatal weight management services. Incorporating women's perspectives in the development of these services could encourage engagement by focussing on women's priorities and motivations, while taking into consideration their socially related experiences in addition to their clinical health needs.

  April 26, 2013   doi: 10.1111/hex.12070   open full text
• Expectations of new treatment in rheumatoid arthritis: developing a patient‐generated questionnaire.
  Darija Hofmann, Fowzia Ibrahim, Diana Rose, David L. Scott, Andrew Cope, Til Wykes, Heidi Lempp.
  Health Expectations. April 25, 2013
  Background Service‐user partnerships in research exist in mental health, but there have been few advances in other disciplines, apart from cancer. Objectives To develop a patient‐generated expectancy measure for new treatments in rheumatoid arthritis (RA), using a participatory method. Method Stage 1: three repeated focus groups and two expert panels with patients with RA conducted by a patient researcher to generate items for the draft questionnaire. Stage 2: feasibility study of draft scale with consecutive outpatient attendees. Results Patients identified 21 dimensions of new treatment expectations, grouped into (i) physical, (ii) psycho‐social and (iii) expectations relating to the impact of treatment. This resulted in a draft instrument assessed in a feasibility study. Discussion and Conclusion The participatory research method was useful in involving patients actively in research and to produce collaboratively a feasible, valid and acceptable measure in RA. The scale will be included in a longitudinal observational study, with newly diagnosed patients, to assess (i) whether the new scale demonstrates sensitivity to change for expectations when receiving new treatment and (ii) participants' completion rate of the new scale compared with five instruments included in the future study.

  April 25, 2013   doi: 10.1111/hex.12073   open full text
• Lost in hospital: a qualitative interview study that explores the perceptions of NHS inpatients who spent time on clinically inappropriate hospital wards.
  Lucy Goulding, Joy Adamson, Ian Watt, John Wright.
  Health Expectations. April 24, 2013
  Background Prior research suggests that the placement of patients on clinically inappropriate hospital wards may increase the risk of experiencing patient safety issues. Objective To explore patients' perspectives of the quality and safety of the care received during their inpatient stay on a clinically inappropriate hospital ward. Design Qualitative study using semi‐structured interviews. Participants and setting Nineteen patients who had spent time on at least one clinically inappropriate ward during their hospital stay at a large NHS teaching hospital in England. Results Patients would prefer to be treated on the correct specialty ward, but it is generally accepted that this may not be possible. When patients are placed on inappropriate wards, they may lack a sense of belonging. Participants commented on potential failings in communication, medical staff availability, nurses' knowledge and the resources available, each of which may contribute to unsafe care. Conclusions Patients generally acknowledge the need for placement on inappropriate wards due to demand for inpatient beds, but may report dissatisfaction in terms of preference and belonging. Importantly, patients recount issues resulting from this placement that may compromise their safety. Hospital managers should be encouraged to appreciate this insight and potential threat to safe practice and where possible avoid inappropriate ward transfers and admissions. Where such admissions are unavoidable, staff should take action to address the gaps in safety of care that have been identified.

  April 24, 2013   doi: 10.1111/hex.12071   open full text
• Expect the unexpected: patients’ and families’ expectations and experiences of new clinical procedures.
  Kathryn Ehrich, Luke Cowie, Jane Sandall.
  Health Expectations. April 24, 2013
  Background Early stage clinical innovation often occurs ‘under the radar’ of governance systems for established procedures. Previously impossible or unavailable techniques still being developed involve additional uncertainty and unknown risks and benefits compared with standard procedures. Patient and family expectations, perceptions and experiences of these new procedures and their possible impacts on aspects of patient safety are under‐researched. Objective To explore patient and family expectations and experiences of undergoing new clinical procedures. Setting A large UK Hospital NHS Foundation Trust with a range of clinically innovative specialties. Methods We interviewed 15 patients who received new clinical procedures in a variety of medical and surgical specialties. Qualitative interviews were used to facilitate in‐depth exploration of patient and family views and experiences. Topics included patient and family access to and expectations of the procedure, informed decision making regarding acceptance of new procedures and post‐procedure experiences. Results Some patients sought out specific interventions, while others accepted new treatment options that clinicians proposed. Most participants reported that explanations about the procedure and risks were clear, and there were opportunities to ask questions prior to the procedure. Most participants also regarded their procedures as successful. However, post‐procedure information follow‐up was often reported as lacking and some outcomes were considerably problematic and raised patient safety issues. Discussion The importance of patients’ and family views in evaluating health care are increasingly recognized. We discuss the implications of our findings for informed decision making and post‐intervention follow‐up.

  April 24, 2013   doi: 10.1111/hex.12065   open full text
• Care planning for long‐term conditions – a concept mapping.
  Monique Lhussier, Simon Eaton, Natalie Forster, Mathew Thomas, Sue Roberts, Susan M Carr.
  Health Expectations. April 09, 2013
  Objective This article focuses on approaches within clinical practice that seek to actively involve patients with long‐term conditions (LTCs) and how professionals may understand and implement them. Personalized care planning is one such approach, but its current lack of conceptual clarity might have impeded its widespread implementation to date. A variety of overlapping concepts coexist in the literature, which have the potential to impair both clinical and research agendas. The aim of this article is therefore to explore the meaning of the concept of care planning in relation to other overlapping concepts and how this translates into clinical practice implementation. Methods Searches were conducted in the Cochrane database for systematic reviews, CINHAL and MEDLINE. A staged approach to conducting the concept mapping was undertaken, by (i) an examination of the literature on care planning in LTCs; (ii) identification of related terms; (iii) locating reviews of those terms. Retrieved articles were subjected to a content analysis, which formed the basis of our concept maps. (iv) We then appraised these against knowledge and experience of the implementation of care planning in clinical practice. Results and Conclusions Thirteen articles were retrieved, in which the core importance of patient‐centredness, shared decision making and self‐management was highlighted. Literature searches on these terms retrieved a further 24 articles. Our concept mapping exercise shows that whilst there are common themes across the concepts, the differences between them reflect the context and intended outcomes within clinical practice. We argue that this clarification exercise will allow for further development of both research and clinical implementation agendas.

  April 09, 2013   doi: 10.1111/hex.12063   open full text
• The public's priorities in health services.
  Giora Kaplan, Orna Baron‐Epel.
  Health Expectations. April 03, 2013
  Background Rationing in health services cannot be solved only by cost‐effective analysis because social values play a central role in the difficult trade‐off dilemma of prioritizing some service over others. Objective To examine the relative importance ascribed by the public to selected components of health services, in the national allocation of resources as well as in their personal insurance. Methods A telephone survey of a representative sample of the Israeli adult population (N = 1225). Two versions of the questionnaire were used. At the national level, interviewees were asked to assume they were the Minister of Health. At the personal level, interviewees were asked to choose items to be included in their personal complementary health insurance. Results Check‐ups for early disease detection and nursing care for the frail elderly got the highest support for extra budget as well as to be included in personal insurance. Other items presented were fertility treatments, cardiac rehabilitation, mental health, dental health, programmes for preventive medicine and health promotion, subsidizing supplemental insurance for the poor, additional staff for primary clinics and building a new hospital. The lowest support was for alternative medicine and for cosmetic surgery. No subgroup in the Israeli society presented a different first priority. Conclusion The Israeli public does not give high priority to ‘nice to have’ services but their selections are ‘mature’ and responsible. Rationing in health care requires listening to the public even if there are still many methodological limitations on how to reflect the public's opinion.

  April 03, 2013   doi: 10.1111/hex.12064   open full text
• Preferences for a third‐trimester ultrasound scan in a low‐risk obstetric population: a discrete choice experiment.
  Fiona A. Lynn, Grainne E. Crealey, Fiona A. Alderdice, James C. McElnay.
  Health Expectations. March 26, 2013
  Objective Establish maternal preferences for a third‐trimester ultrasound scan in a healthy, low‐risk pregnant population. Design Cross‐sectional study incorporating a discrete choice experiment. Setting A large, urban maternity hospital in Northern Ireland. Participants One hundred and forty‐six women in their second trimester of pregnancy. Methods A discrete choice experiment was designed to elicit preferences for four attributes of a third‐trimester ultrasound scan: health‐care professional conducting the scan, detection rate for abnormal foetal growth, provision of non‐medical information, cost. Additional data collected included age, marital status, socio‐economic status, obstetric history, pregnancy‐specific stress levels, perceived health and whether pregnancy was planned. Analysis was undertaken using a mixed logit model with interaction effects. Main outcome measures Women's preferences for, and trade‐offs between, the attributes of a hypothetical scan and indirect willingness‐to‐pay estimates. Results Women had significant positive preference for higher rate of detection, lower cost and provision of non‐medical information, with no significant value placed on scan operator. Interaction effects revealed subgroups that valued the scan most: women experiencing their first pregnancy, women reporting higher levels of stress, an adverse obstetric history and older women. Conclusions Women were able to trade on aspects of care and place relative importance on clinical, non‐clinical outcomes and processes of service delivery, thus highlighting the potential of using health utilities in the development of services from a clinical, economic and social perspective. Specifically, maternal preferences exhibited provide valuable information for designing a randomized trial of effectiveness and insight for clinical and policy decision makers to inform woman‐centred care.

  March 26, 2013   doi: 10.1111/hex.12062   open full text
• Women's views and experiences of antenatal enquiry for domestic abuse during pregnancy.
  Debra Salmon, Kathleen M. Baird, Paul White.
  Health Expectations. March 25, 2013
  Objective The aim of this study was to explore the acceptability of antenatal enquiry for domestic abuse from the perspective of women using maternity services. It also sought to understand the experiences of referral and support offered to women who had positively disclosed abuse. Methods A multimethod approach was adopted including quantitative and qualitative elements. The survey assessed women's views of the acceptability and impact of routine enquiry for domestic abuse. Interviews aimed, to understand the views and experiences of women who had positively disclosed abuse during their contact with maternity services. Results 94.4% of those surveyed felt comfortable with a midwife asking about abuse. 96.6% of the participants also believed it was appropriate for a midwife to ask and that midwives should be able to respond to positive disclosure. Interviewees subject to abuse during pregnancy were happy to be questioned, even though they did not always feel able to disclose immediately. Conclusion Women had a positive view of antenatal enquiry for domestic abuse in healthcare settings and support its continuation. Women expect to be asked and that midwives can respond appropriately. Raising the issue creates a culture in which women are made aware of the impact of abuse and understand there are avenues of support even if she decides not to leave the relationship. Women may choose not to disclose about the abuse at the initial time of asking, for fear of their own safety but asking signifies that she can disclose about at a later contact.

  March 25, 2013   doi: 10.1111/hex.12060   open full text
• ‘The onus is on me’: primary care patient views of Medicare‐funded team care in chronic disease management in Australia.
  Michele M. Foster, Geoffrey K. Mitchell.
  Health Expectations. March 21, 2013
  Background and objective This study investigated the views of primary care patients in receipt of Medicare‐funded team care for chronic disease management (CDM) in Australia. Design A qualitative study using a repeat in‐depth interview design. Participants and setting Twenty‐three patients (17 female), aged 32–89, were recruited over a six‐month period from two purposively selected general practices: one urban and one regional practice in Queensland, Australia. Data collection procedure Semi‐structured interviews were conducted with participants 6 months apart. An interview guide was used to ensure consistency of topics explored. Interviews were recorded and transcribed, and a thematic analysis was conducted. Results Patients in this study viewed the combined contributions of a GP and other health professionals in team care as thorough and reassuring. In this case of Medicare‐funded team care, patients also saw obligations within the structured care routine which cultivated a personal ethics of CDM. This was further influenced by how patients viewed their role in the health‐care relationship. Aside from personal obligations, Medicare funding got patients engaged in team care by providing financial incentives. Indeed, this was a defining factor in seeing allied health professionals. However, team care was also preferential due to patients' valuations of costs and benefits. Conclusion Patients are likely to engage with a structured team care approach to CDM if there is a sense of personal obligation and sufficient financial incentive. The level of engagement in team care is likely to be optimized if patient expectations and preferences are considered in decisions.

  March 21, 2013   doi: 10.1111/hex.12061   open full text
• Assessments of the extent to which health‐care providers involve patients in decision making: a systematic review of studies using the OPTION instrument.
  Nicolas Couët, Sophie Desroches, Hubert Robitaille, Hugues Vaillancourt, Annie Leblanc, Stéphane Turcotte, Glyn Elwyn, France Légaré.
  Health Expectations. March 04, 2013
  Background We have no clear overview of the extent to which health‐care providers involve patients in the decision‐making process during consultations. The Observing Patient Involvement in Decision Making instrument (OPTION) was designed to assess this. Objective To systematically review studies that used the OPTION instrument to observe the extent to which health‐care providers involve patients in decision making across a range of clinical contexts, including different health professions and lengths of consultation. Search strategy We conducted online literature searches in multiple databases (2001–12) and gathered further data through networking. Inclusion criteria (i) OPTION scores as reported outcomes and (ii) health‐care providers and patients as study participants. For analysis, we only included studies using the revised scale. Data extraction Extracted data included: (i) study and participant characteristics and (ii) OPTION outcomes (scores, statistical associations and reported psychometric results). We also assessed the quality of OPTION outcomes reporting. Main results We found 33 eligible studies, 29 of which used the revised scale. Overall, we found low levels of patient‐involving behaviours: in cases where no intervention was used to implement shared decision making (SDM), the mean OPTION score was 23 ± 14 (0–100 scale). When assessed, the variables most consistently associated with higher OPTION scores were interventions to implement SDM (n = 8/9) and duration of consultations (n = 8/15). Conclusions Whatever the clinical context, few health‐care providers consistently attempt to facilitate patient involvement, and even fewer adjust care to patient preferences. However, both SDM interventions and longer consultations could improve this.

  March 04, 2013   doi: 10.1111/hex.12054   open full text
• Assessing knowledge and attitudes towards screening among users of faecal immunochemical test.
  Maaike J. Denters, Marije Deutekom, Marie‐Louise Essink‐Bot, Patrick M. Bossuyt, Paul Fockens, Evelien Dekker.
  Health Expectations. February 25, 2013
  Background Informed decision making is recognized as important in screening. Invitees should be provided with relevant information, enabling them to make an informed decision. This may be more difficult in ethnic minority and low socio‐economic status groups. We aimed to assess the proportion of informed decisions to participate in a faecal immunochemical test (FIT)‐based colorectal cancer (CRC) screening pilot and to explore differences in knowledge and attitude across various subgroups. Methods Asymptomatic persons aged 50–74 were invited to a second round of a Dutch FIT‐based pilot screening programme for CRC. An information leaflet containing all information relevant to enable informed decision making accompanied the invitation. Informed choice was assessed by a mailed questionnaire. Knowledge was elicited through 18 items and attitude towards screening through four items. Main outcome measure was the proportion of informed decision makers among participants. Differences between subgroups were evaluated using logistic regression. Results Of 5367 screening participants, 2774 (52%) completed the questionnaire. Knowledge was adequate in 2554 (92%); 2736 (99%) showed a positive attitude towards screening. A total of 2525 persons had made an informed choice (91%); male gender, low education level, non‐Dutch ethnicity and not speaking Dutch at home were negatively associated with having adequate knowledge in multivariable analysis. Conclusion In FIT‐based screening for CRC, the majority of responders made an informed decision to participate. However, we did not succeed in equally providing all population subgroups with sufficient information. Future initiatives should be aimed at reaching these groups to further enable informed decision making.

  February 25, 2013   doi: 10.1111/hex.12056   open full text
• Do patients have a voice? The social stratification of health center governing boards.
  Brad Wright.
  Health Expectations. February 25, 2013
  Context To ensure community responsiveness, federally qualified health centres (FQHCs) in the United States are required to be governed by a patient majority. However, to the extent that these patient trustees resemble the typical low‐income patients served by FQHCs, status generalization theory suggests that they will be passed over for leadership positions within the board in favour of more prestigious individuals. Methods Using 4 years of data on health centre governing boards obtained from the Health Resources and Services Administration via a Freedom of Information Act Request, the likelihood of holding executive committee office is modelled as a function of trustee characteristics using Chamberlain's conditional logistic regressions. Results The results indicate that representative patient trustees are significantly less likely than other trustees to hold a position on the executive committee or serve as board chair. Conclusions Given the power of the board leadership to set the agenda, the reduced likelihood of representative patient trustees serving in leadership positions may ultimately limit the representative voice given to patients, making FQHCs potentially less responsive to their communities. These findings also have important implications for other settings where engaging and empowering patients is sought.

  February 25, 2013   doi: 10.1111/hex.12059   open full text
• Is perceived patient involvement in mental health care associated with satisfaction and empowerment?
  Else Tambuyzer, Chantal Audenhove.
  Health Expectations. February 21, 2013
  Background Patients increasingly assume active roles in their mental health care. While there is a growing interest in patient involvement and patient‐reported outcomes, there is insufficient research on the outcomes of patient involvement. Objective The research questions in this study are as follows: ‘To what extent is perceived patient involvement associated with satisfaction and empowerment?’; ‘What is the nature of the relationship between satisfaction and empowerment?’; and ‘To what extent are background variables associated with satisfaction and empowerment?’. We assumed that a higher degree of patient involvement is associated with higher satisfaction and empowerment scores and that satisfaction and empowerment are positively associated. Design, setting and participants Data were gathered using surveys of 111 patients of 36 multidisciplinary care networks for persons with serious and persistent mental illness. Main variables studied and main outcome measures Demographic characteristics, patient involvement and satisfaction were measured using a new questionnaire. Empowerment was assessed using the Dutch Empowerment Scale. Descriptive, univariate (Pearson's r and independent‐samples t‐tests), multivariate (hierarchical forced entry regression) and mixed‐model analyses were conducted. Results The hypotheses of positive associations between patient involvement, satisfaction and empowerment are confirmed. The demographics are not significantly related to satisfaction or empowerment, except for gender. Men reported higher empowerment scores than did women. Discussion and conclusions Making patient involvement a reality is more than just an ethical imperative. It provides an opportunity to enhance patient‐reported outcomes such as satisfaction and empowerment. Future research should focus on the nature of the association between satisfaction and empowerment.

  February 21, 2013   doi: 10.1111/hex.12052   open full text
• Consumer views on a new holistic screening tool for supportive and palliative‐care needs: Sheffield Profile for Assessment and Referral for Care (SPARC): a survey of self‐help support groups in health care.
  Philippa Hughes, Nisar Ahmed, Michelle Winslow, Stephen J Walters, Karen Collins, Bill Noble.
  Health Expectations. February 18, 2013
  Background Sheffield Profile for Assessment and Referral for Care (SPARC) was developed in response to concerns that palliative care may not be reaching all people who could benefit from it. Acceptability of the tool is an important step in developing its future use. Aims To elicit the views of a wide variety of members of consumer and self‐help support groups concerned with health care on the relevance, acceptability and the overall perception of using SPARC as an early holistic needs assessment tool in supportive and palliative care. Methods This study was conducted in South Yorkshire and North Derbyshire (UK). Ninety‐nine consumer and self‐help groups were identified from information in the public domain. Thirty‐eight groups participated. Packs containing study information and self‐complete postal questionnaires were distributed to groups, and they were asked to circulate these to their members. Completed questionnaires were returned in pre‐paid envelopes to the research team. Results 135 questionnaires and feedback forms were returned. The majority of respondents found SPARC easy to understand (93% (120/129; 95% Confidence Interval 87% to 96%) and complete (94% (125/133; 95% CI: 88% to 97%). A minority, 12.2% (16/131), of respondents found questions on SPARC ‘too sensitive’. Conclusions Overall, respondents considered SPARC an acceptable and relevant tool for clinical assessment of supportive and palliative‐care needs. Whilst a small minority of people found SPARC difficult to understand (i.e. patients with cognitive impairments), most categories of service user found it relevant. Clinical studies are necessary to establish the clinical utility of SPARC.

  February 18, 2013   doi: 10.1111/hex.12058   open full text
• ‘Calling executives and clinicians to account’: user involvement in commissioning cancer services.
  David H Evans, Roger J Bacon, Elizabeth Greer, Angela M Stagg, Pat Turton.
  Health Expectations. February 18, 2013
  Background English NHS guidance emphasizes the importance of involving users in commissioning cancer services. There has been considerable previous research on involving users in service improvement, but not on involvement in commissioning cancer services. Objective To identify how users were involved as local cancer service commissioning projects sought to implement good practice and what has been learned. Design Participatory evaluation with four qualitative case studies based on semi‐structured interviews with project stakeholders, observation and documentary analysis. Users were involved in every stage from design to analysis and reporting. Setting and participants Four English cancer network user involvement in commissioning projects, with 22 stakeholders interviewed. Results Thematic analysis identified nine themes: initial involvement, preparation for the role, ability to exercise voice, consistency and continuity, where decisions are made, closing the feedback loop, assessing impact, value of experience and diversity. Discussion Our findings on the impact of user involvement in commissioning cancer services are consistent with other findings on user involvement in service improvement, but highlight the specific issues for involvement in commissioning. Key points include the different perspectives users and professionals may have on the impact of user involvement in commissioning, the time necessary for meaningful involvement, the importance of involving users from the beginning and the value of senior management and PPI facilitator support and training. Conclusions Users can play an important role in commissioning cancer services, but their ability to do so is contingent on resources being available to support them.

  February 18, 2013   doi: 10.1111/hex.12051   open full text
• Patients' perceptions and experiences of venous leg ulceration and their attitudes to larval therapy: an in‐depth qualitative study.
  Dorothy McCaughan, Nicky Cullum, Joanne Dumville,.
  Health Expectations. February 15, 2013
  Background Venous leg ulcers are a common and distressing condition that can impair quality of life. Larval therapy has been widely promoted for the treatment of different types of chronic wounds, yet little is known about its acceptability to patients. Objectives To explore patients' experiences of venous leg ulceration and of the acceptability of larval therapy as a treatment. Design Qualitative study, using semi‐structured interviews alongside a randomized controlled trial. Interview data were transcribed and analysed for thematic content. Data were collected from April 2007 to July 2007. Setting and participants Eighteen people (12 men, 6 women), aged between 29 and 93 years (median age 64 years), with at least one venous leg ulcer, took part in the study. Fourteen people were recruited from two vascular clinics (one attached to a hospital and the other located in a community setting). A further four people were recruited through referral from a team of community nurses. Findings Participants portrayed lives blighted by the presence of one or more leg ulcers. The majority were willing to try ‘maggots’ (larvae) and able to overcome feelings of squeamishness because of their strong desire to heal their ulcers. Five people treated with larvae were included in the study. Initial improvements in the condition of their ulcers were not sustained, and two participants experienced severe pain. Discussion and conclusions Patients may hold unrealistic expectations that larval therapy will effect a longed‐for cure for their leg ulcer(s) but an absence of healing may lead to feelings of disappointment or despair.

  February 15, 2013   doi: 10.1111/hex.12053   open full text
• Communication relating to family members' involvement and understandings about patients' medication management in hospital.
  Elizabeth Manias.
  Health Expectations. February 14, 2013
  Background Many patients with complex health‐care needs are prescribed several medications on a daily basis. With admission to hospital, patients are often placed in a vulnerable position. Family members can therefore play an important role in supporting patients in decision making about managing medications and negotiating communication exchange with health professionals. Objectives From the perspective of family members, to explore family members' involvement with health professionals and patients about how patients' medications are managed in hospital. Design Using an ethnographic design, interviews were conducted with family members of patients admitted to hospital who had at least five medications prescribed in hospital. A purposive sampling approach was used for recruitment. A thematic framework process was used for analysis. Setting Interviews took place in four surgical and four medical wards in each of two Australian hospitals. Results Forty interviews were conducted with family members in relation to their respective relative's medications. Family members tended to participate in passive, rather than active or shared decision‐making activities. Those who demonstrated active or shared decision making were extensively involved in managing medications and in addressing problems relating to continuity of care. Communication with health professionals was generally insufficient, despite family members' keenness to speak with them. Conclusions Improved communication is needed between family members, health professionals and patients in hospitals. Greater attention should be played by health professionals in initiating communication proactively. Family members possessed valuable, unique information about patients' medications that can be utilized to facilitate patient safety.

  February 14, 2013   doi: 10.1111/hex.12057   open full text
• Values and risks of second opinion in Japan's universal health‐care system.
  Sawako Okamoto, Kazuo Kawahara, Atsushi Okawa, Yujiro Tanaka.
  Health Expectations. February 14, 2013
  Background Second opinion (SO) is widely recognized in Japan, but we do not know how patients view and use SO. Objectives To investigate optimum seeking of SO in Japan's universal health‐care system. Design, participants, and methods Survey of patients at Tokyo Medical and Dental University Hospital. Of 365 responses, 67 had experienced SO with standardized protocol at SO Clinic; 82 had obtained SO elsewhere without instruction; 216 had never sought SO. Main outcome measures Views of values and risks of SO. Results Second opinion patients with standardized protocol better understood their illness, treatment options, individualized plan, and uncertainty in medicine, and also reported improved decision making compared with SO patients without the protocol (P < 0.05). However, more than half of respondents misunderstood SO as a way to change doctors or treatment. Second opinion respondents (n = 149) had a propensity to request treatment changes (P < 0.1) and more than one‐third (n = 82) did not tell SO doctor they were being treated by another doctor. The absolute majority of non‐SO patients would seek SO for a serious illness but would hesitate to tell their doctors. Discussion and conclusion Respondents recognized value of SO to improve understanding and decision making. This study also found risks in SO misuse which may be reinforced by Japan's cultural tendencies and universal health‐care system. Our findings suggest steps to increase the benefit of SO: ensure involvement of original doctor, instruct patients about SO and help them organize their thinking before SO and facilitate patients' return to the treating doctor for discussion and decision making.

  February 14, 2013   doi: 10.1111/hex.12055   open full text
• Optimizing patient involvement in quality improvement.
  Natalie Armstrong, Georgia Herbert, Emma‐Louise Aveling, Mary Dixon‐Woods, Graham Martin.
  Health Expectations. February 03, 2013
  Introduction Patient and public involvement in healthcare planning, service development and health‐related research has received significant attention. However, evidence about the role of patient involvement in quality improvement work is more limited. We aimed to characterize patient involvement in three improvement projects and to identify strengths and weaknesses of contrasting approaches. Methods Three case study quality improvement projects were purposively sampled from a broader programme. We used an ethnographic approach involving 126 in‐depth interviews, 12 weeks of non‐participant observations and documentary analysis. Data analysis was based on the constant comparative method. Results The three projects differed in the ways they involved patients in their quality improvement work, including their rationales for including patients. We characterized three very different models of patient involvement, which were each influenced by project context. Patients played distinctive roles across the three projects, acting in some cases as intermediaries between the wider patient community and clinicians, and sometimes undertaking persuasive work to convince clinicians of the need for change. We identified specific strategies that can be used to help ensure that patient involvement works most effectively and that the enthusiasm of patients to make a difference is not dissipated. Conclusion Patient involvement in quality improvement work needs careful management to realize its full potential.

  February 03, 2013   doi: 10.1111/hex.12039   open full text
• Expectations and values about expanded newborn screening: a public engagement study.
  Robin Z. Hayeems, Fiona A. Miller, Yvonne Bombard, Denise Avard, June Carroll, Brenda Wilson, Julian Little, Pranesh Chakraborty, Jessica Bytautas, Yves Giguere, Judith Allanson, Renata Axler.
  Health Expectations. February 01, 2013
  Objectives Newborn bloodspot screening (NBS) panels have expanded to include conditions for which treatment effects are less certain, creating debate about population‐based screening criteria. We investigated Canadian public expectations and values regarding the types of conditions that should be included in NBS and whether parents should provide consent. Methods Eight focus groups (FG; n = 60) included education, deliberative discussion and pre‐/post‐questionnaires. Data were analysed quantitatively and qualitatively. Results Quantitatively, the majority supported NBS for serious disorders for which treatment is not available (95–98, 82%). A majority endorsed screening without explicit consent (77–88%) for treatable disorders, but 62% supported unpressured choice for screening for untreatable disorders. Qualitatively, participants valued treatment‐related benefits for infants and informational benefits for families. Concern for anxiety, stigma and unwanted knowledge depended upon disease context and strength of countervailing benefits. Conclusions Anticipated benefits of expanded infant screening were prioritized over harms, with information provision perceived as a mechanism for mitigating harms and enabling choice. However, we urge caution around the potential for public enthusiasm to foster unlimited uptake of infant screening technologies.

  February 01, 2013   doi: 10.1111/hex.12047   open full text
• Burden of treatment for chronic illness: a concept analysis and review of the literature.
  Adem Sav, Michelle A. King, Jennifer A. Whitty, Elizabeth Kendall, Sara S. McMillan, Fiona Kelly, Beth Hunter, Amanda J. Wheeler.
  Health Expectations. January 31, 2013
  Context Treatment burden, the burden associated with the treatment and management of chronic illness, has not yet been well articulated. Objective Using Rodgers' (1989, Journal of Advanced Nursing, 14, 330–335) method of concept analysis, this review describes the ways in which treatment burden has been conceptualized to define the concept and to develop a framework for understanding its attributes, antecedents and consequences. Methods Leading databases were searched electronically between the years 2002 and 2011. To ensure the review focused on actual observations of the concept of interest, articles that did not measure treatment burden (either qualitatively or quantitatively) were excluded. An inductive approach was used to identify themes related to the concept of treatment burden. Main results Thirty articles, identified from 1557 abstracts, were included in the review. The attributes of treatment burden include burden as a dynamic process, as a multidimensional concept, and comprising of both subjective and objective elements. Prominent predisposing factors (antecedents) include the person's age and gender, their family circumstances, possible comorbidity, high use of medications, characteristics of treatment and their relationship with their health‐care provider. The most dominant consequences are poor health and well‐being, non‐adherence to treatment, ineffective resource use and burden on significant others. Furthermore, many of these consequences can also become antecedents, reflecting the cyclic and dynamic nature of treatment burden. Conclusion The findings underscore the need for researchers and health‐care professionals to engage in collaborative discussions and make cooperative efforts to help alleviate treatment burden and tailor treatment regimens to the realities of people's daily lives.

  January 31, 2013   doi: 10.1111/hex.12046   open full text
• Do not forget the professional – the value of the FIRST model for guiding the structural involvement of patients in rheumatology research.
  Maarten P. T. Wit, Janneke E. Elberse, Jacqueline E. W. Broerse, Tineke A. Abma.
  Health Expectations. January 31, 2013
  Background The FIRST model describes five practical components that enable equal collaboration between patients and professionals in clinical rheumatology research: Facilitate, identify, respect, support and training. Objective To assess the value of this model as a framework for setting up and guiding the structural involvement of people with arthritis in health research. Method The FIRST model was used as a framework during the guidance of a network of patient research partners and clinical rheumatology departments in the Netherlands. A ‘monitoring and evaluation’ approach was used to study the network over a period of 2 years. Data were collected using mixed methods and subjected to a directed content analysis. The FIRST components structured the data analysis. During monitoring meetings, refined and additional descriptors for each component were formulated and added if new items were found. Results The FIRST model helps to guide and foster structural partnerships between patients and professionals in health research projects. However, it should be broadened to emphasize the pivotal role of the principal investigator regarding the facilitation and support of patient research partners, to recognize the requirements of professionals for training and coaching and to capture the dynamics of collaboration, mutual learning processes and continuous reflection. Conclusion FIRST is a good model to implement sustainable relationships between patients and researchers. It will benefit from further refinement by acknowledging the dynamics of collaboration and including the concept of reflection and relational empowerment. The reciprocal character of the five components, including training and support of researchers, should be incorporated.

  January 31, 2013   doi: 10.1111/hex.12048   open full text
• Cancer patient and clinician acceptability and feasibility of a supportive care screening and referral process.
  Eli Ristevski, Melanie Regan, Rebecca Jones, Sibilah Breen, Angela Batson, Matthew R. McGrail.
  Health Expectations. January 31, 2013
  Background Incorporating supportive care into routine cancer care is an increasing priority for the multi‐disciplinary team with growing evidence of its importance to patient‐centred care. How to design and deliver a process which is appropriate for patients, clinicians and health services in rural areas needs further investigation. Objective To (i) examine the patient and clinician acceptability and feasibility of incorporating a supportive care screening and referral process into routine cancer care in a rural setting, and (ii) explore any potential influences of patient variables on the acceptability of the process. Methods A total of 154 cancer patients and 36 cancer clinicians across two rural areas of Victoria, Australia participated. During treatment visits, patients and clinicians participated in a supportive care process involving screening, discussion of problems, and provision of information and referrals. Structured questionnaires with open and closed questions were used to measure patient and clinician acceptability and feasibility. Results Patients and clinicians found the supportive care process highly acceptable. Screening identified relevant patient problems (90%) and problems that may not have otherwise been identified (83%). The patient–clinician discussion helped patients realize help was available (87%) and enhanced clinician–patient rapport (72%). Patients received useful referrals to services (76%). Feasibility issues included timing of screening for newly diagnosed patients, privacy in discussing problems, clinician time and availability of referral options. No patient demographic or disease factors influenced acceptability or feasibility. Conclusions Patients and clinicians reported high acceptability for the supportive care process, although mechanisms for incorporating the process into health care need to be further developed.

  January 31, 2013   doi: 10.1111/hex.12045   open full text
• The role of patients and their relatives in ‘speaking up’ about their own safety – a qualitative study of acute illness.
  Helen Rainey, Kathryn Ehrich, Nicola Mackintosh, Jane Sandall.
  Health Expectations. January 20, 2013
  Background Poor recognition of and response to acute illness in hospitalized patients continues to cause significant harm despite the implementation of safety strategies such as early warning scores. Patients and their relatives may be able to contribute to their own safety by speaking up about changes in condition, but little is known about the factors that influence this. This study examined the experiences and views of patients and their relatives to determine the potential for involvement in promoting their own safety. Methods This data set is drawn from a wider ethnographic study of the management of the acutely ill patient in hospital. Thirteen patients and seven relatives from two medical settings in two UK NHS Trusts were interviewed. Thematic analysis identified factors likely to influence patients' and their relatives' ability to contribute to the management of deterioration. Results All patients interviewed had experienced their acute illness within the context of a long‐term health problem. Speaking up was influenced by the ability to recognize changes in clinical condition, self‐monitoring, confidence and trust, and culture and system of health care. When patients or relatives did raise concerns, health‐care staff had a mediating effect on their comfort with and the effectiveness of speaking up. Implications Safety strategies based on patient involvement must take account of the complexities of acute illness. Those that promote partnership may be more acceptable to patients, their families and staff than those that promote challenging behaviour and may ultimately prove to be most safe and effective.

  January 20, 2013   doi: 10.1111/hex.12044   open full text
• Designing a placebo device: involving service users in clinical trial design.
  Rachael Gooberman‐Hill, Clare Jinks, Sofia Barbosa Boucsas, Kelly Hislop, Krysia S. Dziedzic, Carol Rhodes, Amanda Burston, Jo Adams.
  Health Expectations. January 14, 2013
  Background Service users are increasingly involved in the design of clinical trials and in product and device development. Service user involvement in placebo development is crucial to a credible and acceptable placebo for clinical trials, but such involvement has not yet been reported. Aims To enhance the design of a future clinical trial of hand splints for thumb‐base osteoarthritis (OA), service users were involved in splint selection and design of a placebo splint. This article describes and reflects on this process. Design Two fora of service users were convened in 2011. Service users who had been prescribed a thumb splint for thumb‐base OA were approached about involvement by Occupational Therapy (OT) practitioners. Content of the fora A total of eight service users took part in the fora. Service users discussed their experience of OA and their own splints and then tried a variety of alternative splints. Through this they identified the active features of splints alongside acceptable and unacceptable design features. Service users focused on wearability and support with or without immobilization. Fora discussed whether a placebo group (‘arm’) was an acceptable feature of a future trial, and service users developed a potential design for a placebo splint. Conclusion and discussion This is the first project that to involve service users in placebo design. Service users are increasingly involved in product and device design and are ideally placed to identify features to make a placebo credible yet lacking key active ingredients. The future trial will include research into its acceptability.

  January 14, 2013   doi: 10.1111/hex.12043   open full text
• Self‐care support in paediatric patients with type 1 diabetes: bridging the gap between patient education and health promotion? A review.
  Julie Pelicand, Cécile Fournier, Anne Le Rhun, Isabelle Aujoulat.
  Health Expectations. January 14, 2013
  Background This study examines how the term ‘self‐care’ imported from health promotion has been used in the context of patient education interventions for paediatric patients with type 1 diabetes. Methods Thirty articles over the last decade were analysed, using a qualitative method of thematic coding and categorizing. Results The term ‘self‐care’ has been mainly used as a synonym for self‐management of one's condition and treatment. Indeed, the activities performed by paediatric patients independently or with the help of their parents under the term ‘self‐care’ fail to explicitly take into account the general health and life dimensions of self‐care, as defined in health promotion. Although such dimensions are implicitly present when it comes to define the parents' and health‐care providers' roles in supporting the children's emerging self‐care capacity, their importance is acknowledged as a way of strengthening the children's and their families' capacity to respond to illness demands, rather than in relation to their general well‐being. Conclusion The discourse on self‐care in the field of paediatric diabetes therefore appears to be oriented more towards disease and prevention, rather than health promotion. The psychosocial dimension of self‐care should be particularly investigated, as young patients need to be supported in their efforts to gain autonomy not only in relation to the management of their condition, but in their lives in general.

  January 14, 2013   doi: 10.1111/hex.12041   open full text
• Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature.
  Joanna Smith, Francine Cheater, Hilary Bekker.
  Health Expectations. January 14, 2013
  Background Living with a child with a long‐term condition can result in challenges above usual parenting because of illness‐specific demands. A critical evaluation of research exploring parents' experiences of living with a child with a long‐term condition is timely because international health policy advocates that patients with long‐term conditions become active collaborators in care decisions. Methods A rapid structured review was undertaken (January 1999–December 2009) in accordance with the United Kingdom Centre for Reviews and Dissemination guidance. Three data bases (MEDLINE, CINAHL, PSYCINFO) were searched and also hand searching of the Journal of Advanced Nursing and Child: Care, Health and Development. Primary research studies written in English language describing parents' experiences of living with a child with a long‐term condition were included. Thematic analysis underpinned data synthesis. Quality appraisal involved assessing each study against predetermined criteria. Results Thirty‐four studies met the inclusion criteria. The impact of living with a child with a long‐term condition related to dealing with immediate concerns following the child's diagnosis and responding to the challenges of integrating the child's needs into family life. Parents' perceived they are not always supported in their quest for information and forming effective relationships with health‐care professionals can be stressful. Although having ultimate responsibility for their child's health can be overwhelming, parents developed considerable expertise in managing their child's condition. Conclusion Parents' accounts suggest they not always supported in their role as manager for their child's long‐term condition and their expertise, and contribution to care is not always valued.

  January 14, 2013   doi: 10.1111/hex.12040   open full text
• Do patients use decision and communication aids as prompted when meeting with breast cancer specialists?
  Shelley Volz, Dan H. Moore, Jeffrey K. Belkora.
  Health Expectations. January 07, 2013
  Background Our breast cancer clinic promotes patient use of decision and communication aids (DAs/CAs) through two mechanisms: coaching and prompting. From January through September 2010, we provided services to 462 of 1106 new visitors (42%). Of those 462 visitors, 267 (58%) received coaching. For the remainder (195 or 42%), the best we could do was prompt them to self‐administer the DA and CAs. Objective We wanted to learn whether patients prompted to use DAs/CAs did so. Methods We surveyed prompted patients after their visits. We asked how much of each DA they reviewed, whether they listed questions, made notes and audio‐recorded their consultations. We tallied frequencies and explored associations using logistic regression. Results Of the 195 prompted patients, 82 responded to surveys (42%). Nearly all (66/73 or 90%) reported reviewing some or all of the booklets and 52/73 (71%) reported viewing some or all of the DVDs. While 63/78 (81%) responded that they wrote a question list, only 14/61 (23%) said they showed it to their doctor. Two‐thirds (51/77 or 66%) said someone took notes, but only 16/79 (20%) reported making audio recordings. Discussion More patients reported following prompts to use DAs than CAs. Few reported showing question lists to physicians or recording their visits. Our exploratory analyses surfaced associations between using CAs and race/ethnicity or education that merit further investigation. Conclusion Prompting patients assures better use of decision than communication aids. Clinicians may need to take a more active role to ensure patients receive adequate notes and recordings.

  January 07, 2013   doi: 10.1111/hex.12042   open full text
• Towards a stakeholders' consensus on patient payment policy: the views of health‐care consumers, providers, insurers and policy makers in six Central and Eastern European countries.
  Marzena Tambor, Milena Pavlova, Stanisława Golinowska, Christoph Sowada, Wim Groot.
  Health Expectations. December 28, 2012
  Background Although patient charges for health‐care services may contribute to a more sustainable health‐care financing, they often raise public opposition, which impedes their introduction. Thus, a consensus among the main stakeholders on the presence and role of patient charges should be worked out to assure their successful implementation. Aim To analyse the acceptability of formal patient charges for health‐care services in a basic package among different health‐care system stakeholders in six Central and Eastern European countries (Bulgaria, Hungary, Lithuania, Poland, Romania and Ukraine). Methods Qualitative data were collected in 2009 via focus group discussions and in‐depth interviews with health‐care consumers, providers, policy makers and insurers. The same participants were asked to fill in a self‐administrative questionnaire. Qualitative and quantitative data are analysed separately to outline similarities and differences in the opinions between the stakeholder groups and across countries. Results There is a rather weak consensus on patient charges in the countries. Health policy makers and insurers strongly advocate patient charges. Health‐care providers overall support charges but their financial profits from the system strongly affects their approval. Consumers are against paying for services, mostly due to poor quality and access to health‐care services and inability to pay. Conclusions To build consensus on patient charges, the payment policy should be responsive to consumers' needs with regard to quality and equity. Transparency and accountability in the health‐care system should be improved to enhance public trust and acceptance of patient payments.

  December 28, 2012   doi: 10.1111/hex.12035   open full text
• ‘Someone should oversee it’: patient perspectives on the ethical issues arising with the regulation of probiotics.
  Krista L. Harrison, Ruth M. Farrell, Margaret A. Brinich, Janelle Highland, MaryBeth Mercer, Jennifer B. McCormick, Jon Tilburt, Gail Geller, Patricia Marshall, Richard R. Sharp.
  Health Expectations. December 28, 2012
  Background Although many probiotic products are currently available in yogurt or pill form in the United States (US), there is uncertainty surrounding the structure of regulation of these products. As more therapeutic probiotics are developed, changes to existing regulatory process in the United States may be required to meet the needs of patients and users in the population. Objective This study examined how patients with chronic gastrointestinal (GI) diseases view the regulation of probiotics. Design We conducted a multi‐site qualitative study consisting of focus groups of patients with chronic gastrointestinal diseases at three tertiary hospitals: at [institutions removed for blinded review]. Results We conducted 22 focus groups with 136 patients with major gastrointestinal (GI) diseases between March and August 2009. Participants were not familiar with the existing regulation of probiotic products but wanted assurances of accurate labelling of strain as well as safety. Participants raised concerns that regulation of probiotics might be accompanied by greater costs, reduced access and increased involvement of pharmaceutical companies. Although participants voiced significant doubt of government regulators, they felt that products containing genetically modified probiotic strains should have oversight comparable to that of pharmaceutical drugs. Discussion and conclusion If GI patient perspectives are indicative of public perceptions of therapeutic probiotics in the United States, consumers may expect more rigorous regulation in the future while simultaneously wanting low costs, easy access and low involvement of pharmaceutical companies. Manufacturers, translational scientists, clinicians and regulators should be sensitive to consumer attitudes when designing, testing and regulating new therapeutic probiotics.

  December 28, 2012   doi: 10.1111/hex.12027   open full text
• Patients' and clinicians' views of comparing the performance of providers of surgery: a qualitative study.
  Zoe Hildon, Dominique Allwood, Nick Black.
  Health Expectations. December 20, 2012
  Objectives Comparison of providers' outcomes is intended to encourage patient choice and stimulate clinicians to improve the quality of their services. Given that success will depend on how patients and clinicians respond, our aim was to explore their views of using outcome data to compare providers. Method Qualitative data from six focus groups with patients (n = 45) and seven meetings with surgical clinicians (n = 107) were collected during autumn 2010. Discussions audio‐taped, transcribed and a thematic analysis carried out. Results Patients and clinicians confirmed the value of making comparisons of the outcomes of providers publicly available. However, both groups harboured three principal concerns: the validity of the data; fears that the data would be misinterpreted by the media, politicians and commissioners, and the focus should not just be on providers but also on the performance of individual surgeons. In addition, patients felt that information on providers' outcomes would only ever have a limited impact on their choice because there were other important factors to be taken into account: accessibility, waiting time, the size of the provider and the quality of other aspects such as cleanliness and nursing. Also patients acknowledged the importance of friends' and relatives' experiences and that they would seek their GP's advice. Conclusions While comparisons of providers' outcomes should be available to patients to stimulate improvements in performance, information should be directed principally to hospital clinicians and to GPs. Impact may be enhanced by providing data on individual clinicians rather than providers. The extent to which these findings are generalizable to other areas of health care is uncertain.

  December 20, 2012   doi: 10.1111/hex.12037   open full text
• What is the evidence base for public involvement in health‐care policy?: results of a systematic scoping review.
  Annalijn Conklin, Zoë Morris, Ellen Nolte.
  Health Expectations. December 18, 2012
  Background Public involvement in health‐care policy has been advocated as a means to enhance health system responsiveness, yet evidence for its impact has been difficult to ascertain. Objectives To review the peer‐reviewed empirical evidence on outcomes of public involvement in health‐care policy. Methods We systematically searched PsychINFO and PubMed from November 2000 to April 2010 for empirical studies that reported on original research only; studies in languages other than English, German or French were excluded. Data were extracted using a standardized evidence table with a priori determined headings. Main results Nineteen studies were identified as eligible for inclusion in our review. We found that sound empirical evidence of the outcomes of public involvement activities in health care remains underdeveloped. The concept and the indicators used to examine and determine outcomes remain poorly specified and inconsistent, as does the reporting of the evidence. There was some evidence for the developmental role of public involvement, such as enhancing awareness, understanding and competencies among lay participants. Evidence for instrumental benefits of public involvement initiatives was less well documented. Conclusions Despite the growing body of work on public involvement in health‐care policy, evidence of its impact remains scarce; thus, firm conclusions about involvement activities that are appropriate and effective for policy development are difficult to draw. However, focus on outcomes risks missing the normative argument that involving the public in the health‐care policy process may be seen to be of intrinsic value.

  December 18, 2012   doi: 10.1111/hex.12038   open full text
• Immigrant women's experiences and views on the prevention of cervical cancer: a qualitative study.
  Maria Grandahl, Tanja Tydén, Maria Gottvall, Ragnar Westerling, Marie Oscarsson.
  Health Expectations. December 16, 2012
  Background Many Western countries have cervical cancer screening programmes and have implemented nation‐wide human papillomavirus (HPV) vaccination programmes for preventing cervical cancer. Objective To explore immigrant women's experiences and views on the prevention of cervical cancer, screening, HPV vaccination and condom use. Design An exploratory qualitative study. The Health Belief Model (HBM) was used as a theoretical framework. Setting and participants Eight focus group interviews, 5–8 women in each group (average number 6,5), were conducted with 50 women aged 18–54, who studied Swedish for immigrants. Data were analysed by latent content analysis. Results Four themes emerged: (i) deprioritization of women's health in home countries, (ii) positive attitude towards the availability of women's health care in Sweden, (iii) positive and negative attitudes towards HPV vaccination, and (iv) communication barriers limit health care access. Even though the women were positive to the prevention of cervical cancer, several barriers were identified: difficulties in contacting health care due to language problems, limited knowledge regarding the relation between sexual transmission of HPV and cervical cancer, culturally determined gender roles and the fact that many of the women were not used to regular health check‐ups. Conclusion The women wanted to participate in cervical cancer prevention programmes and would accept HPV vaccination for their daughters, but expressed difficulties in understanding information from health‐care providers. Therefore, information needs to be in different languages and provided through different sources. Health‐care professionals should also consider immigrant women's difficulties concerning cultural norms and pay attention to their experiences.

  December 16, 2012   doi: 10.1111/hex.12034   open full text
• Critical appraisal training increases understanding and confidence and enhances the use of evidence in diverse categories of learners.
  Donna H. Odierna, Jenny White, Susan Forsyth, Lisa A. Bero.
  Health Expectations. December 16, 2012
  Background Training in evidence‐based medicine is most commonly offered to physicians, medical students and health‐care decision‐makers. Setting and participants We partnered with community organizations to recruit participants and develop trainings for consumers, non‐physician health‐care providers and journalists in California. Intervention We conducted half‐day and one‐day workshops in critical appraisal of health evidence. Workshops consisted of didactic presentations, small‐group practice sessions and class discussions. Outcome measures We measured knowledge and confidence immediately before and after the workshops and at follow‐up 6 months later. We also asked participants to describe their use of health evidence before the workshops and at follow‐up. Results At baseline, 41% of the consumers, 45% of the providers and 57% of the journalists correctly answered questions about health evidence. Scores increased by about 20% (P < 0.05) in all groups at the end of the workshops and remained significantly over baseline at follow‐up. At baseline, 26% of the participants were confident in their understanding of critical appraisal concepts, significantly increasing to 54% after the workshops and sustained (53%) at follow‐up. During discussions, participants’ comments often focused on funding and the potential effects of financial conflicts of interest on study findings. Participants did not use evidence more frequently at follow‐up but said that they applied workshop skills in evaluating research, communicating with others and making decisions about health care. Conclusion It is possible to successfully conduct critical appraisal workshops to aid health‐related decision making for groups who have previously not had access to this kind of training.

  December 16, 2012   doi: 10.1111/hex.12030   open full text
• ‘The thing is not knowing’: patients' perspectives on surveillance of an indeterminate pulmonary nodule.
  Renda Soylemez Wiener, Michael K. Gould, Steven Woloshin, Lisa M. Schwartz, Jack A. Clark.
  Health Expectations. December 16, 2012
  Background The hundreds of thousands of patients found to have a potentially malignant pulmonary nodule each year are faced with tremendous uncertainty regarding what the nodule is and how it should be evaluated. Objective To explore patients’ responses to the detection and evaluation of a pulmonary nodule. Design Qualitative study based on four focus‐group discussions. We performed inductive analysis using principles of grounded theory to identify themes relating to responses to the nodule and strategies to manage uncertainty. Setting and participants Twenty‐two patients from two medical centres who were undergoing surveillance for an indeterminate pulmonary nodule. Results Patient responses to an indeterminate pulmonary nodule were varied and evolved over time. Although almost all patients reported an initial fear about cancer, subsequent depictions of the nodule diverged into four types defined on two dimensions: cognitive (‘it's cancer’ vs. ‘I don't know what it is’ vs. ‘it's nothing serious’) and emotional (anxiety vs. equanimity). Most eventually accepted that the nodule was unlikely to be malignant; however, some remained anxious, convinced the nodule could turn into cancer at any time and should be aggressively monitored for life. Patients used results of surveillance tests as well as their own strategies (e.g. vigilance for symptoms, information‐seeking, contemplating and controlling modifiable risk factors, avoidance, faith) to manage uncertainty. Conclusions Surveillance for a pulmonary nodule can weigh heavily on some patients for months or years. Our findings may help clinicians prepare patients with a newly detected pulmonary nodule for the burden of the prolonged uncertainty of surveillance.

  December 16, 2012   doi: 10.1111/hex.12036   open full text
• Perceptions and attitudes towards exercise among Chinese elders – the implications of culturally based self‐management strategies for effective health‐related help seeking and person‐centred care.
  Zhenmi Liu, Shaun Speed, Kinta Beaver.
  Health Expectations. December 16, 2012
  Background Encouraging the uptake of physical activity among a culturally diverse elderly population presents a challenge for health‐care providers across the world. Little is known about the health‐care needs of these populations, for example the increasingly ageing group of Chinese elders in many parts of the world who are now facing later life and increasing challenges to their health. Objective This study aimed to explore behaviours and attitudes towards exercise among older Chinese immigrants in the UK to provide insights into the health of Chinese populations in the UK and elsewhere. Design A Grounded Theory approach using purposive and theoretical sampling with in‐depth semi‐structured interviews. Setting and participants Chinese elders were recruited from Chinese communities in the North West of England. Thirty‐three participants were interviewed face‐to‐face and audio‐recorded. Results Participants self‐managed exercise based on cultural perceptions of health and ingrained Chinese values. Professional support and information was lacking and relied on folk norms rather than person‐centred recommendations for healthy living. Inappropriate exercise regimes could act as a substitute for seeking health‐related advice when exercise was often used as a self‐monitored barometer to assess their perceived health status. Discussion and conclusion Chinese elders may undertake inappropriate exercise, leading to high‐risk situations, if appropriate professional information is not provided. Health‐care practitioners should devote attention to understanding Chinese elders' attitudes towards exercise, as this may ultimately lead to successful health promotion activities. A person‐centred approach that acknowledges and works with self‐management practices is advocated.

  December 16, 2012   doi: 10.1111/hex.12028   open full text
• High deductible health plans: does cost sharing stimulate increased consumer sophistication?
  Neal Gupta, Daniel Polsky.
  Health Expectations. December 12, 2012
  Objective To determine whether increased cost sharing in health insurance plans induces higher levels of consumer sophistication in a non‐elderly population. Study design This analysis is based on the collection of survey and demographic data collected from enrollees in the RAND health insurance experiment (HIE). During the RAND HIE, enrollees were randomly assigned to different levels of cost sharing (0, 25, 50 and 95%). Methods The study population compromises about 2000 people enrolled in the RAND HIE, between the years 1974 and 1982. Effects on health‐care decision making were measured using the results of a standardized questionnaire, administered at the beginning and end of the experiment. Points of enquiry included whether or not enrollees' (i) recognized the need for second opinions (ii) questioned the effectiveness of certain therapies and (iii) researched the background/skill of their medical providers. Consumer sophistication was also measured for regular health‐care consumers, as indicated by the presence of a chronic disease. Principal findings We found no statically significant changes (P < 0.05) in the health‐care decision‐making strategies between individuals randomized to high cost sharing plans and low cost sharing plans. Furthermore, we did not find a stronger effect for patients with a chronic disease. Conclusions The evidence from the RAND HIE does not support the hypothesis that a higher level of cost sharing incentivizes the development of consumer sophistication. As a result, cost sharing alone will not promote individuals to become more selective in their health‐care decision‐making.

  December 12, 2012   doi: 10.1111/hex.12031   open full text
• Quality of life and attitudes to ageing in Turkish older adults at old people's homes.
  Mehmet Top, Elif Dikmetaş.
  Health Expectations. December 12, 2012
  Objectives The purpose of this study was to investigate quality of life (QOL) and attitudes to ageing in Turkish older adults at two old people's homes (nursing homes) and to explain relationship between QOL and attitudes to ageing. Methods This study is a quantitative and descriptive exploratory study of QOL and attitudes to ageing of older adults in nursing homes in a developing country. Instruments Two international data measurement tools were used for data collection. Data measurement instruments in this study are The World Health Organization Quality of Life Instrument–Older Adults Module (WHOQOL‐OLD) and the WHO – Attitudes to Ageing Questionnaire (AAQ). The WHOQOL‐OLD module consists of 24 items assigned to six facets (sensory abilities, autonomy, past, present and future activities, social participation, death and dying and intimacy) AAQ consists of 24 items classified in three domains (psychosocial loss, physical change and psychological growth) with eight items each. Participants The Turkish version of the WHOQOL‐OLD and AAQ was administered to 120 older (>65 years) adults living in two old people's homes in Samsun Province, Turkey. This study was conducted and planned between on 1 November 2011 and on 31 November, 2011. Results The results indicated that there was significant relationship between QOL and attitudes to ageing of older adults. In this study, the highest significant relationship is between psychological growth subscale of attitudes to ageing and sensory abilities subscale of QOL (r = 0.579; P < 0.01). Overall QOL and overall attitudes to ageing had a significant and positive relationship (r = 0.408; P < 0.01). The dimensions of attitudes to ageing (psychosocial loss, physical change and psychological growth) were significant predictors for QOL in older adults in Turkey. It was found that the gender does not affect overall QOL in older adults. However, happiness is significant variable for overall QOL in this study. Conclusion The results suggest that QOL is a complex, multidimensional concept that should be studied at different levels of analysis in Turkey and other developing countries. The results of this study emphasize the importance of QOL in older adults in older people's homes in Turkey and attitudes to ageing of nursing home residents in Turkey.

  December 12, 2012   doi: 10.1111/hex.12032   open full text
• Referral and management options for patients with chronic kidney disease: perspectives of patients, generalists and specialists.
  Charlotte Wilson, Stephen M. Campbell, Karen A. Luker, Ann‐Louise Caress.
  Health Expectations. December 10, 2012
  Background Chronic Kidney Disease (CKD) is increasing in prevalence and significance as a global public health issue. Appropriate management of CKD stages 3–4 in either generalist or specialist care is essential in order to slow disease progression. As various consulting options between services may be used, it is important to understand how patients and practitioners view these options. Objective To elicit patient and practitioner views and preferences on the acceptability and appropriateness of referral practices and consulting options for CKD stage 3–4. Design A mixed methods approach involving a semi‐structured interview and structured rating exercise administered by telephone. Setting & participants Adult (18+) patients with CKD stage 3–‐4 were recruited via their General Practitioner (GP). Practitioners were recruited from both general and specialist services. Results Sixteen patients and twenty‐two practitioners participated in the study between July and September, 2011. Both patients and practitioners preferred ‘GP with access to a specialist’ and least preferred ‘Specialist Review’. Computer review and telephone review were acceptable to participants under certain conditions. Practitioners favoured generalist management of patients with CKD 3. Specialists recommended active discharge of patients with stabilised stage 4 back to generalist care. Both generalists and specialists strongly supported sharing patients' medical records via electronic consultation systems. Conclusion Participants tended to prefer the current model of CKD management. Suggested improvements included; increasing the involvement of patients in referral and discharge decisions; improving the adequacy of information given to specialists on referral and encouraging further use of clinical guidelines in practice.

  December 10, 2012   doi: 10.1111/hex.12025   open full text
• Establishing local priorities for a health research agenda.
  Rebecca Whear, Jo Thompson‐Coon, Kate Boddy, Helen Papworth, Julie Frier, Ken Stein.
  Health Expectations. December 06, 2012
  Aim/Background To describe the two‐stage prioritization process being used by the UK National Institute for Health Research's Collaboration for Leadership in Applied Health Research and Care for the South‐West Peninsula (or PenCLAHRC) – a joint health service and university partnership and reflect on implications for the wider context of priority setting in health‐care research. Method PenCLAHRC's process establishes the priorities of Stakeholders including service users across a regional health system for locally relevant health services research and implementation. Health research questions are collected from clinicians, academics and service users in Devon and Cornwall (UK) using a web‐based question formulation tool. There is a two‐stage prioritization process which uses explicit criteria and a wide Stakeholder group, including service users to identify important research questions relevant to the south‐west peninsula locality. Results To date, a wide variety of health research topics have been prioritized by the PenCLAHRC Stakeholders. The research agenda reflects the interests of academics, clinicians and service users in the local area. Potential challenges to implementation of the process include time constraints, variable quality of questions (including the language of research) and initiating and maintaining engagement in the process. Shared prioritization of local health research needs can be achieved between Stakeholders from a wide range of perspectives. Conclusions The processes developed have been successful and, with minor changes, will continue to be used during subsequent rounds of prioritization. Engagement of Stakeholders in establishing a research agenda encourages the most relevant health questions to be asked and may improve implementation of research findings and take up by service users.

  December 06, 2012   doi: 10.1111/hex.12029   open full text
• Carer involvement with drug services: a qualitative study.
  Linda C. Orr, Rosaline S. Barbour, Lawrie Elliott.
  Health Expectations. December 06, 2012
  Background Empirical research suggests that involving carers brings benefits to families and services. Consequently, drug‐related policy and guidance has increasingly encouraged drug services to involve carers at all levels of service provision. Objective To explore the purpose and scope of carer involvement with adult drug services in North‐east Scotland. Design, Setting and Participants A total of 82 participants (20 informal carers, 43 service providers and 19 policy makers) were purposively selected to take part in a qualitative study. Eight focus groups and 32 interviews were conducted between 2007 and 2008. Findings Three themes were identified through thematic coding: ‘Current levels of involvement’, ‘Use of the term carer’ and ‘Opportunities for change?’ Carer involvement was described as limited, unplanned and unstructured, and consisted largely of information and advice, practical and emotional support, and signposting of services. Although use of the term ‘carer’ was contested within and across the groups, caring in a drug context was considered the ‘same but different’ from caring in other contexts. Carers remained sceptical that services actually wanted to involve them in supporting their relative or to offer carers support in their own right. Many service providers and policy makers regarded carer involvement as an aspiration. Conclusion Encouraging carers, service providers and policy makers to reach a shared understanding of caring in a drug context may help translation of policy into practice. However, there is also a fundamental need for drug services to widen the level and type of involvement activities on offer to carers.

  December 06, 2012   doi: 10.1111/hex.12033   open full text
• Why do hospitalized older adults take risks that may lead to falls?
  Terry P Haines, Den‐Ching Angel Lee, Beverly O'Connell, Fiona McDermott, Tammy Hoffmann.
  Health Expectations. November 29, 2012
  Background The behaviour of hospitalized older adults can contribute to falls, a common adverse event during and after hospitalization. Objective To understand why older adults take risks that may lead to falls in the hospital setting and in the transition period following discharge home. Design Qualitative research. Setting and participants Hospital patients from inpatient medical and rehabilitation wards (n = 16), their informal caregivers (n = 8), and health professionals (n = 33) recruited from Southern Health hospital facilities, Victoria, Australia. Main variables studied Perceived motivations for, and factors contributing to risk taking that may lead to falls. Main outcome measures Semi‐structured, in depth interviews and focus groups were used to generate qualitative data. Interviews were conducted both 2 weeks post‐hospitalization and 3 months post‐hospitalization. Results Risk taking was classified as; (i) enforced (ii) voluntary and informed and (iii) voluntary and mal informed. Five key factors that influence risk taking behaviour were (i) risk compensation ability of the older adult, (ii) willingness to ask for help, (iii) older adult desire to test their physical boundaries, (iv) communication failure between and within older adults, informal care givers and health professionals and (v) delayed provision of help. Discussion and Conclusion Tension exists between taking risks as a part of rehabilitation and the effect it has on likelihood of falling. Health professionals and caregivers played a central role in mitigating unnecessary risk taking, though some older adults appear more likely to take risks than others by virtue of their attitudes.

  November 29, 2012   doi: 10.1111/hex.12026   open full text
• ‘No one wants to be the face of Herpes London’: a qualitative study of the challenges of engaging patients and the public in sexual and reproductive health and HIV/AIDS services.
  Nicola Robinson, Ava Lorenc.
  Health Expectations. November 29, 2012
  Objectives To explore barriers, challenges and best practice within patient and public engagement (PPE) in sexual and reproductive health and HIV (SRHH) services in London. Methods Consultation exercise using qualitative interviews with 27 stakeholders including commissioners, managers, voluntary/community organizations (VCOs) clinicians and patients, analysed using Framework Analysis and Atlas.ti software. ResultsParticipants recognized PPE's importance, echoing recent political and NHS drives, and highlighted the need for meaningful, empowering PPE, including user‐designed methods, peer research and participatory approaches. Although challenging in SRHH and requiring training and support, PPE may help tackle stigma, and promote self‐management and patient‐centred‐care, including peer education and role modelling. Expertise may come from experienced VCOs. Themes in priority order were: organizational commitment (including lack of dedicated staff, time and money); motivating patients; changing NHS philosophy; informing patients/public; using public awareness/education campaigns; overcoming stigma; working with VCOs. ‘Reaching out’ to engage underrepresented groups in this sensitive area was emphasized through community outreach, incentivization and linking with existing organizations. Making engagement easy and addressing issues of public value were also important. Stigma was less hindering than anticipated, except for ethnic minorities. PPE was seen to improve patient satisfaction, increase service uptake and reduce inequalities, key priorities in SRHH, and identify innovative service delivery ideas. Conclusions PPE is crucial in creating a patient‐led NHS and responsible society. If organizations, including the NHS, commit to implementing meaningful PPE which actively targets those at risk of poor SRHH, services can be truly patient‐led and patients and communities empowered to tackle the stigma of SRHH.

  November 29, 2012   doi: 10.1111/hex.12024   open full text
• Patient perceptions of patient‐centred care: empirical test of a theoretical model.
  Cheryl Rathert, Eric S. Williams, Deirdre McCaughey, Ghadir Ishqaidef.
  Health Expectations. November 26, 2012
  Aim Patient perception measures are gaining increasing interest among scholars and practitioners. The aim of this study was to empirically examine a conceptual model of patient‐centred care using patient perception survey data. Background Patient‐centred care is one of the Institute of Medicine's objectives for improving health care in the 21st century. Patient interviews conducted by the Picker Institute/Commonwealth Fund in the 1980s resulted in a theoretical model and survey questions with dimensions and attributes patients defined as patient‐centered. Method The present study used survey data from patients with overnight visits at 142 U.S. hospitals. Results Regression analysis found significant support for the theoretical model. Perceptions of emotional support had the strongest relationship with overall care ratings. Coordination of care, and physical comfort were strongly related as well. Conclusion Understanding how patients experience their care can help improve understanding of what patients believe is patient‐centred, and of how care processes relate to important patient outcomes.

  November 26, 2012   doi: 10.1111/hex.12020   open full text
• Comparing the nine‐item Shared Decision‐Making Questionnaire to the OPTION Scale – an attempt to establish convergent validity.
  Isabelle Scholl, Levente Kriston, Jörg Dirmaier, Martin Härter.
  Health Expectations. November 26, 2012
  Background While there has been a clear move towards shared decision‐making (SDM) in the last few years, the measurement of SDM‐related constructs remains challenging. There has been a call for further psychometric testing of known scales, especially regarding validity aspects. Objective To test convergent validity of the nine‐item Shared Decision‐Making Questionnaire (SDM‐Q‐9) by comparing it to the OPTION Scale. Design Cross‐sectional study. Setting and participants Data were collected in outpatient care practices. Patients suffering from chronic diseases and facing a medical decision were included in the study. Methods Consultations were evaluated using the OPTION Scale. Patients completed the SDM‐Q‐9 after the consultation. First, the internal consistency of both scales and the inter‐rater reliability of the OPTION Scale were calculated. To analyse the convergent validity of the SDM‐Q‐9, correlation between the patient (SDM‐Q‐9) and expert ratings (OPTION Scale) was calculated. Results A total of 21 physicians provided analysable data of consultations with 63 patients. Analyses revealed good internal consistency of the SDM‐Q‐9 and limited internal consistency of the OPTION Scale. Inter‐rater reliability of the latter was less than optimal. Association between the total scores of both instruments was weak with a Spearman correlation of r = 0.19 and did not reach statistical significance. Discussion By the use of the OPTION Scale convergent validity of the SDM‐Q‐9 could not be established. Several possible explanations for this result are discussed. Conclusion This study shows that the measurement of SDM remains challenging.

  November 26, 2012   doi: 10.1111/hex.12022   open full text
• Psychometric assessment of the Chinese version of the decisional conflict scale in Chinese women making decision for breast cancer surgery.
  Wendy W. T. Lam, Marie Kwok, Qiuyan Liao, Miranda Chan, Amy Or, Ava Kwong, Dacita Suen, Richard Fielding.
  Health Expectations. November 21, 2012
  Objective The decisional conflict scale (DCS) measures the perception of uncertainty in choosing options, factors contributing to decision conflict and effective decision making. This study examined the validity and reliability of the Chinese version of the DCS in Hong Kong Chinese women deciding breast cancer (BC) surgery. Method A Chinese version of the 16‐item DCS was administered to 471 women awaiting initial consultation for BC diagnosis. Confirmatory factor analysis (CFA) assessed the factor structure. Internal consistency, and convergent and discriminant validities of the factor structure were assessed. Results CFA revealed the original factor structure of the DCS showed poor fit to this sample. Exploratory factor analysis revealed an alternative three‐factor structure, Informed and Values Clarity, Uncertainty and Effective Decision and Support, was optimal. Cronbach's alpha ranged from 0.51 to 0.87. Correlations between decision‐making difficulties and satisfaction with medical consultation demonstrated acceptable convergent validity. Construct validity was supported by correlations between decision regret and psychological distress. Discriminant validity was supported by differentiation between delaying and non‐delaying decision‐makers. Conclusions The three‐factor DCS‐14 is a valid and practical measure for assessing decisional conflict in deciding BC surgery. It shows good potential for use in assessing decision satisfaction for women diagnosed with BC.

  November 21, 2012   doi: 10.1111/hex.12021   open full text
• ‘You just change the channel if you don't like what you're going to hear’: gamblers’ attitudes towards, and interactions with, social marketing campaigns.
  Samantha L. Thomas, Sophie Lewis, Kate Westberg.
  Health Expectations. November 08, 2012
  Objectives To investigate how gamblers interact with, and respond to, downstream social marketing campaigns that focus on the risks and harms of problem gambling and/or encourage help seeking. Methods Qualitative study of 100 gamblers with a range of gambling behaviours (from non‐problem to problem gambling). We used a Social Constructivist approach. Our constant comparative method of data interpretation focused on how participants' experiences and interactions with gambling influenced their opinions towards, and interactions with social marketing campaigns. Results Three key themes emerged from the narratives. (i) Participants felt that campaigns were heavily skewed towards encouraging individuals to take personal responsibility for their gambling behaviours or were targeted towards those with severe gambling problems. (ii) Participants described the difficulty for campaigns to achieve ‘cut through’ because of the overwhelming volume of positive messages about the benefits of gambling that were given by the gambling industry. (iii) Some participants described that dominant discourses about personal responsibility prevented them from seeking help and reinforced perceptions of stigma. Conclusions and implications Social marketing campaigns have an important role to play in the prevention of gambling risk behaviours and the promotion of help seeking. Social marketers should explore how to more effectively target campaigns to different audience segments, understand the role of environmental factors in undermining the uptake of social marketing strategies and anticipate the potential unforeseen consequences of social marketing strategies.

  November 08, 2012   doi: 10.1111/hex.12018   open full text
• Convergences and divergences of diabetic patients' and healthcare professionals' opinions of care: a qualitative study.
  Stéphanie Lauvergeon, Désirée Mettler, Bernard Burnand, Isabelle Peytremann‐Bridevaux.
  Health Expectations. November 05, 2012
  Objectives To investigate opinions' convergences and divergences of diabetic patients and health‐care professionals on diabetes care and the development of a regional diabetes programme. Background Development and implementation of a regional diabetes programme. Research design Qualitative study using focus groups to elicit diabetic patients' and health‐care professionals' opinions, followed by content analysis. Setting and participants Eight focus groups: four focus groups with diabetic patients (n = 39) and four focus groups with various health‐care professionals (n = 34) residing or practicing in the canton of Vaud, Switzerland, respectively. Results Perceived quality of diabetes care varied between individuals and types of participants. To improve quality, patients favoured a comprehensive follow‐up while professionals suggested considering existing structures and trained professionals. All participants mentioned communication difficulties between professionals and were favouring teamwork. In addition, they described the role that patients should have in care and self‐management. Financial difficulties were also mentioned by both groups of participants. Finally, they were in favour of the development of a regional diabetes programme adapted to actors' needs. For patients indeed, such a programme would represent an opportunity to improve information and to have access to comprehensive care. For professionals, it would help the development of local networks and the reinforcement of existing tools and structures. Discussion and conclusions Acknowledging convergences and divergences of opinions of both diabetic patients and health‐care professionals should help the further development of a programme adapted to users' needs, taking all stakeholders interests and priorities into consideration.

  November 05, 2012   doi: 10.1111/hex.12013   open full text
• ‘The missing links’: understanding how context and mechanism influence the impact of public involvement in research.
  Kristina Staley, Sarah A. Buckland, Helen Hayes, Maryrose Tarpey.
  Health Expectations. October 29, 2012
  Introduction It is now more widely recognized that public involvement in research increases the quality and relevance of the research. However, there are also more questions as to exactly how and when involvement brings added value. The nature of the current evidence of impact Based on the findings of recent literature reviews, most reports of public involvement that discuss impact are based on observational evaluations. These usefully describe the context, the type of involvement and the impact. However, the links between these factors are rarely considered. The findings are therefore limited to identifying the range of impacts and general lessons for good practice. Reflecting on the links between context, mechanism and outcome in these observational evaluations identifies which aspects of the context and mechanism could be significant to the outcome. Studies that are more in line with the principles of realistic evaluation can test these links more rigorously. Building on the evidence from observational evaluations to design research that explores the ‘missing links’ will help to address the question ‘what works best, for whom and when’. Conclusions We conclude that a more intentional and explicit exploration of the links between context, mechanism and outcome, applying the principles of realistic evaluation to public involvement in research, should lead to a more sophisticated understanding of the factors that increase or decrease the likelihood of positive outcomes. This will support the development of more strategic approaches to involvement maximizing the benefits for all involved.

  October 29, 2012   doi: 10.1111/hex.12017   open full text
• An exploration of patient and family engagement in routine primary care visits.
  Jennifer L. Wolff, Marla L. Clayman, Peter Rabins, Mary Ann Cook, Debra L. Roter.
  Health Expectations. October 29, 2012
  Background Older adults are commonly accompanied to routine medical visits. Whether and how family companion behaviours relate to visit processes is poorly understood. Objective To examine family companion behaviours in relation to older adults' medical visit processes. Design and participants Observational study of 78 accompanied primary care patients ages 65 and older. Main outcome measures Medical visit communication (coded using RIAS), patient verbal activity (as a proportion of visit statements) and visit duration (in min), from audio recordings. Results Companions' facilitation of patient involvement was associated with greater patient question asking (P = 0.017) and orienting statements, less passive agreement (P = 0.004) and social talk (P = 0.013) and visits that were 3.4 min longer (P = 0.025). Facilitation of patient understanding was associated with less physician question asking (P = 0.004), visits that were 3.0 min longer (P = 0.031), and lower patient verbal activity (30.3% vs. 36.9% of visit statements; P = 0.028). Facilitation of doctor understanding was associated with greater patient biomedical information giving (P = 0.049). Autonomy detracting behaviours were not associated with visit duration but were associated with lower levels of patient verbal activity (36.3% vs. 29.1% of visit statements; P = 0.041). When companions assumed more behaviours, medical visits were incrementally longer (16.1, 19.5, 21.7 min, corresponding to 0–1, 2–4 and 5+ behaviours; P < 0.001 both contrasts), and patients were less verbally active (35.6%, 33.9%, 27.1% of visit statements; P = 0.09 and P = 0.009, respectively). Discussion Behaviours assumed by patients' companions were associated with visit communication, patient verbal activity and visit duration. Conclusions Interventions to capitalize on family companions' presence may benefit medical visit processes.

  October 29, 2012   doi: 10.1111/hex.12019   open full text
• ‘You don't get told anything, they don't do anything and nothing changes’. Medicine as a resource and constraint in progressive ataxia.
  Gavin Daker‐White, Helen Kingston, Katherine Payne, Julie Greenfield, John Ealing, Caroline Sanders.
  Health Expectations. October 24, 2012
  Background Progressive ataxias are neurological disorders affecting balance, co‐ordination of movement and speech. Objective A qualitative study was undertaken to discover patients' experiences of ataxia and its symptoms. Participants Thirty‐eight people with ataxia recruited from patient support groups and two hospital outpatients departments. Design Cross‐sectional qualitative study with thematic analysis. Results These accounts highlight the limits of medicine in the context of a rare, incurable and disabling disorder, and the embodied uncertainties brought by slowly progressive diseases that lie at the boundaries of mainstream medical knowledge. The existential crises faced by people with ataxia are seemingly magnified by sometimes idiopathic aetiologies and the limited number of inherited conditions identifiable by the available genetic tests. Interviewees were drawn into a medical system that was focused mainly on the diagnosis process, with widely varying results. However, when asked, most had rather valued the provision of disability aids and physical therapies. Only one informant reported overcoming the myriad uncertainties of progressive ataxia, and their account supported the notion of ‘biographical repair’ in chronic illness. Conclusions Clinical uncertainties in ataxia constrained people's attempts to deal with their condition. The construction of the proactive, informed, medical consumer who is assumed to be a partner in care is problematic in the context of a rare and difficult‐to‐diagnose disease for which there is usually no cure. Service providers should be mindful of the need to manage patient expectations in relation to diagnosis and cure. More focus might usefully be placed on the provision of physical therapies and disability aids.

  October 24, 2012   doi: 10.1111/hex.12016   open full text
• Building an online community to promote communication and collaborative learning between health professionals and young people who self‐harm: an exploratory study.
  Christabel Owens, Siobhan Sharkey, Janet Smithson, Elaine Hewis, Tobit Emmens, Tamsin Ford, Ray Jones.
  Health Expectations. October 17, 2012
  Background Online communities are known to break down barriers between supposed experts and non‐experts and to promote collaborative learning and ‘radical trust’ among members. Young people who self‐harm report difficulties in communicating with health professionals, and vice versa. Aim We sought to bring these two groups together online to see how well they could communicate with each other about self‐harm and its management, and whether they could agree on what constituted safe and relevant advice. Methods We allocated 77 young people aged 16–25 with experience of self‐harm and 18 recently/nearly qualified professionals in relevant health‐care disciplines to three separate Internet discussion forums. The forums contained different proportions of professionals to young people (none; 25%; 50% respectively) to allow us to observe the effect of the professionals on online interaction. Results The young people were keen to share their lived experience of self‐harm and its management with health professionals. They engaged in lively discussion and supported one another during emotional crises. Despite registering to take part, health professionals did not actively participate in the forums. Reported barriers included lack of confidence and concerns relating to workload, private–professional boundaries, role clarity, duty of care and accountability. In their absence, the young people built a vibrant lay community, supported by site moderators. Conclusions Health professionals may not yet be ready to engage with young people who self‐harm and to exchange knowledge and experience in an anonymous online setting. Further work is needed to understand and overcome their insecurities.

  October 17, 2012   doi: 10.1111/hex.12011   open full text
• Involving service users in the development of the Support at Home: Interventions to Enhance Life in Dementia Carer Supporter Programme for family carers of people with dementia.
  Karen J. Burnell, Amber Selwood, Theresa Sullivan, Georgina M. Charlesworth, Fiona Poland, Martin Orrell.
  Health Expectations. October 17, 2012
  Background Involving service users in research can be an effective way of improving the practicalities and acceptability of interventions for target end users. Objectives The current paper presented two consensus methods, not commonly used in consultation with service users, to develop a peer support intervention for family carers of people with dementia (SHIELD Carer Supporter Programme). Design Study 1 was a modified Delphi process combined with a consensus conference to explore details of the intervention from the carer and volunteer perspective. Study 2 was an anonymous reader consultation to develop informed consent documents for the intervention trial. Median scores were used to measure and establish consensus. Open‐ended responses were thematically analysed. Setting and participants Study 1: twenty‐five delegates participated (eight were current/former carers) in the first round Delphi questionnaire, with 21 attending the conference. Five completed the Round 2 questionnaire. Study 2: six family carers and 11 people with dementia took part in the consultation. Results Study 1: the role of the peer supporters was developed in terms of relational and practical aspects of the intervention. Study 2: changes were made to the documents, reflecting service user input, but the effectiveness of this less discursive type of service user involvement was unclear. Discussion and conclusions Study 1 methods allowed for service users to contribute significantly and meaningfully, but maybe limiting some design innovation. Study 2 took a more traditional and less collaborative approach. This has implications for balancing the needs of the research with meaningful service user involvement in research.

  October 17, 2012   doi: 10.1111/hex.12012   open full text
• A patient perspective of pharmacist prescribing: ‘crossing the specialisms‐crossing the illnesses’.
  Laura M. McCann, Sharon L. Haughey, Carole Parsons, Fran Lloyd, Grainne Crealey, Gerard J. Gormley, Carmel M. Hughes.
  Health Expectations. October 15, 2012
  Background The drive for non‐medical prescribing has progressed quickly since the late 1990s and involves a range of healthcare professionals including pharmacists. As part of a commissioned research project, this qualitative element of a larger case study focused on the views of patients of pharmacist prescribers. Objective The aim of this study was to explore patients' perspectives of pharmacists as prescribers. Methods Three pharmacists working as independent prescribers in the clinical areas of (i) hypertension, (ii) cardiovascular/diabetes management, (iii) anticoagulation were recruited to three case studies of pharmacist prescribing in Northern Ireland. One hundred and five patients were invited to participate in focus groups after they had been prescribed for by the pharmacist. Focus groups took place between November 2010 and March 2011 (ethical/governance approvals granted) were audio taped, transcribed verbatim, read independently by two authors and analysed using constant comparative analysis. Results Thirty‐four patients agreed to participate across seven focus groups. Analysis revealed the emergence of one overarching theme: team approach to patient care. A number of subthemes related to the role of the pharmacist, the role of the doctor and patient benefits. There was an overwhelming lack of awareness of pharmacist prescribing. Patients discussed the importance of a multidisciplinary approach to their care and recognized limitations of the current model of prescribing. Conclusion Patients were positive about pharmacist prescribing and felt that a team approach to their care was the ideal model especially when treating those with more complex conditions. Despite positive attitudes, there was a general lack of awareness of this new mode of practice.

  October 15, 2012   doi: 10.1111/hex.12008   open full text
• Development of a fragile X syndrome (FXS) knowledge scale: towards a modified multidimensional measure of informed choice for FXS population carrier screening.
  Alice G. Ames, Alice Jaques, Obioha C. Ukoumunne, Alison D. Archibald, Rony E. Duncan, Jon Emery, Sylvia A. Metcalfe.
  Health Expectations. October 15, 2012
  Background Genetic carrier screening is increasingly possible for many conditions, but it is important to ensure decisions are informed. The multidimensional measure of informed choice (MMIC) is a quantitative instrument developed to evaluate informed choice in prenatal screening for Down syndrome, measuring knowledge, attitudes and uptake. To apply the MMIC in other screening settings, the knowledge scale must be modified. Objective To develop and validate a modified MMIC knowledge scale for use with women undergoing carrier screening for fragile X syndrome (FXS). Setting and participants Responses to MMIC items were collected through questionnaires as part of a FXS carrier screening pilot study in a preconception setting in Melbourne, Australia. Design Ten knowledge scale items were developed using a modified Delphi technique. Cronbach's alpha and factor analysis were used to validate the new FXS knowledge scale. We summarized the knowledge, attitudes and informed choice status based on the modified MMIC. Results Two hundred and eighty‐five women were recruited, 241 eligible questionnaires were complete for analysis. The FXS knowledge scale items measured one salient construct and were internally consistent (alpha = 0.70). 71% (172/241) of participants were classified as having good knowledge, 70% (169/241) had positive attitudes and 27% (65/241) made an informed choice to accept or decline screening. Discussion and conclusions We present the development of a knowledge scale as part of a MMIC to evaluate informed choice in population carrier screening for FXS. This can be used as a template by other researchers to develop knowledge scales for other conditions for use in the MMIC.

  October 15, 2012   doi: 10.1111/hex.12009   open full text
• Patient involvement in mental health care: culture, communication and caution.
  Samson Tse, Jessica Tang, Alice Kan.
  Health Expectations. October 15, 2012
  Background Patient or service user involvement in mental health services (MHS) is a hallmark of the recovery approach. Objective In this viewpoint article, we review Tambuyzer et al. paper ‘Patient involvement in mental health care: One size does not fit all’ in order to express our opinion of their work. We also suggest specific actions that may enhance the implementation of patient involvement in MHS. Discussion We make three main points about Tambuyzer et al. model. First, the cultural dimension of patient involvement seems underemphasized in the model. Second, the model might be improved if the increasing role of communications technology in patient involvement is taken into consideration. Third, it is important to acknowledge that the process of patient involvement is not linear, and participation is not a homogeneous experience. Conclusions We suggest that the model be expanded and that further work be carried out on the implementation of patient involvement in MHS.

  October 15, 2012   doi: 10.1111/hex.12014   open full text
• Multiple conditions: exploring literature from the consumer perspective in Australia.
  Christine Walker.
  Health Expectations. October 11, 2012
  Background Following a workshop with people with multiple conditions, the Chronic Illness Alliance undertook a literature review to explore current literature about multiple conditions. Methods The literature search was performed using Medline, CINAHL, Google Scholar and Cochrane Library employing an extensive list of search terms and limited to English language journals between 1999 and 2009. Inclusion criteria for articles were those articles focussing on issues identified by consumers with more than one chronic illness and the health services working with them. Results The results reported in this article are definitions of multiple conditions, safety and quality of services, risks and benefits of treatments for multiple and rare conditions and coordination of services. Discussion The impact of multiple conditions or multimorbidities on health services has been researched internationally and identifies the barriers to good health care when multiple conditions are not recognized. While the issues for consumers with more than one condition are not well recognized, the barriers identified by the literature are of great importance to consumers. Conclusions This review demonstrates that services and policies in Australia require specific reforms to better meet the needs of people with multiple conditions.

  October 11, 2012   doi: 10.1111/hex.12015   open full text
• Introducing the patient's perspective in hospital health technology assessment (HTA): the views of HTA producers, hospital managers and patients.
  Marie‐Pierre Gagnon, Marie Desmartis, Johanne Gagnon, Michèle St‐Pierre, François‐Pierre Gauvin, Marc Rhainds, Dolorès Lepage‐Savary, Martin Coulombe, Mylène Tantchou Dipankui, France Légaré.
  Health Expectations. October 10, 2012
  Background The recent establishment of health technology assessment (HTA) units in University hospitals in the Province of Quebec (Canada) provides a unique opportunity to foster increased participation of patients in decisions regarding health technologies and interventions at the local level. However, little is known about factors that influence whether the patient's perspective is taken into consideration when such decisions are made. Objective To explore the practices, perceptions and views of the various HTA stakeholders concerning patient involvement in HTA at the local level. Method Data were collected using semi‐structured interviews with 24 HTA producers and hospital managers and two focus groups with a total of 13 patient representatives. Results Patient representatives generally showed considerable interest in being involved in HTA. Our findings support the hypothesis that the patient perspective contributes to a more accurate and contextualized assessment of health technologies and produces HTA reports that are more useful for decision makers. They also suggest that participation throughout the assessment process could empower patients and improve their knowledge. Barriers to patient involvement in HTA at the local level are also discussed as well as potential strategies to overcome them. Discussion and conclusion This study contributes to knowledge that could guide interventions in favour of patient participation in HTA activities at the local level. Experimenting with different patient involvement strategies and assessing their impact is needed to provide evidence that will inform future interventions of this kind.

  October 10, 2012   doi: 10.1111/hex.12010   open full text
• ‘Talking the talk or walking the walk?’ A bibliometric review of the literature on public involvement in health research published between 1995 and 2009.
  Jonathan Boote, Ruth Wong, Andrew Booth.
  Health Expectations. October 04, 2012
  Objectives To characterise the literature on public involvement in health research published between 1995 and 2009. Methods Papers were identified from three systematic reviews, one narrative review and two bibliographies. The analysis identified journals where papers were published; countries of lead authors; types of public involved; health topic areas; and stages of research involving the public. Papers were also classified as to whether they were literature reviews or empirical studies; focused on participatory/action research; were qualitative, quantitative or mixed‐method. The number of papers published per year was also examined. Findings Of the 683 papers identified, 297 were of USA origin and 223 were of UK origin. Of the 417 empirical papers: (i) participatory/action research approach was dominant, together with qualitative data collection methods; (ii) the stage of research the public was most involved was question identification; (iii) indigenous groups were most commonly involved; (iv) mental health was the most common health topic. Published studies peaked in 2006. Conclusions The present study identifies publication patterns in public involvement in health research and provides evidence to suggest that researchers increasingly are ‘walking the walk’ with respect to public involvement, with empirical studies consistently out‐numbering literature reviews from 1998.

  October 04, 2012   doi: 10.1111/hex.12007   open full text
• A design process for using normative models in shared decision making: a case study in the context of prenatal testing.
  Sivan Rapaport, Moshe Leshno, Lior Fink.
  Health Expectations. October 04, 2012
  Background Shared decision making (SDM) encourages the patient to play a more active role in the process of medical consultation and its primary objective is to find the best treatment for a specific patient. Recent findings, however, show that patient preferences cannot be easily or accurately judged on the basis of communicative exchange during routine office visits, even for patients who seek to expand their role in medical decision making (MDM). Objective The objective of this study is to improve the quality of patient–physician communication by developing a novel design process for SDM and then demonstrating, through a case study, the applicability of this process in enabling the use of a normative model for a specific medical situation. Design Our design process goes through the following stages: definition of medical situation and decision problem, development/identification of normative model, adaptation of normative model, empirical analysis and development of decision support systems (DSS) tools that facilitate the SDM process in the specific medical situation. Case study This study demonstrates the applicability of the process through the implementation of the general normative theory of MDM under uncertainty for the medical–financial dilemma of choosing a physician to perform amniocentesis. Discussion The use of normative models in SDM raises several issues, such as the goal of the normative model, the relation between the goals of prediction and recommendation, and the general question of whether it is valid to use a normative model for people who do not behave according to the model's assumptions.

  October 04, 2012   doi: 10.1111/hex.12004   open full text
• Patients’ engagement in primary care: powerlessness and compounding jeopardy. A qualitative study.
  Nicolette F Sheridan, Timothy W Kenealy, Jacquie D Kidd, Jacqueline I G Schmidt‐Busby, Jennifer E Hand, Deborah L Raphael, Ann M McKillop, Harold H Rea.
  Health Expectations. October 04, 2012
  Background Primary health care does not adequately respond to populations known to have high needs such as those with compounding jeopardy from chronic conditions, poverty, minority status and age; as such populations report powerlessness. Objective To explore what poor older adults with chronic conditions who mostly belong to ethnic minority groups say they want from clinicians. Setting and Participants Participants were older adults whose chronic conditions were severe enough to require hospital admission more than twice in the previous 12 months. All participants lived in poor localities in Auckland, New Zealand's largest city. Methods Forty‐two in‐depth interviews were conducted and analysed using qualitative description. Results An outward acceptance of health care belied an underlying dissatisfaction with low engagement. Participants did not feel heard and wanted information conveyed in a way that indicated clinicians understood them in the context of their lives. Powerlessness, anger, frustration and non‐concordance were frequent responses. Discussion and Conclusions Despite socio‐cultural and disease‐related complexity, patients pursue the (unrealised) ideal of an engaged therapeutic relationship with an understanding clinician. Powerlessness means that the onus is upon the health system and the clinician to engage. Engagement means building a relationship on the basis of social, cultural and clinical knowledge and demonstrating a shift in the way clinicians choose to think and interact in patient care. Respectful listening and questioning can deepen clinicians' awareness of patients' most important concerns. Enabling patients to direct the consultation is a way to integrate clinician expertise with what patients need and value.

  October 04, 2012   doi: 10.1111/hex.12006   open full text
• Customer interest in and experience with various types of pharmacy counselling – a qualitative study.
  Susanne Kaae, Janine M Traulsen, Lotte S Nørgaard.
  Health Expectations. October 01, 2012
  Background Despite pharmacists' extensive knowledge in the optimization of patients' medical treatments, community pharmacies are still fighting to earn patients' trust with respect to medicinal counselling at the counter. Objective The aim was to investigate how patients perceive pharmacy counselling at the present time, in order to develop the patient–pharmacy relationship for the benefit of both patients and pharmacies. Design Short semi‐structured interviews were carried out with pharmacy customers by pharmacy internship students. Setting and participants One hundred and eight customers in 35 independent pharmacies across Denmark were interviewed during the spring of 2011. Main variables studied Customers were interviewed about their expectations of pharmacies in general and their experiences with medical counselling in particular. Results Customers perceive community pharmacies very differently in terms of both expectations of and positive experiences with counselling. They appear to be in favour of pharmacy counselling with respect to over‐the‐counter medicine and first‐time prescription medicine in contrast to refills. Customers find it difficult to express the health‐care role of pharmacies even when experiencing and appreciating it. Discussion Lack of appreciation of pharmacy counselling for refill prescription medicine and the difficulty in defining the role of pharmacies might stem from the difficulties that customers have in understanding medicine and thus the role of counselling services with respect to medicine. The pharmacy staff does not seem to realize these barriers. Conclusions For pharmacies to encourage customer interest in pharmacy counselling, the staff should start taking the identified barriers into account when planning communication strategies.

  October 01, 2012   doi: 10.1111/hex.12003   open full text
• Lay people's interpretation of ethical values related to mass vaccination; the case of A(H1N1) vaccination campaign in the province of Quebec (French Canada).
  Raymond Massé, Michel Désy.
  Health Expectations. September 28, 2012
  Background Pandemic influenza ethics frameworks are based on respect of values and principles such as regard for autonomy, responsibility, transparency, solidarity and social justice. However, very few studies have addressed the way in which the general population views these moral norms. Objectives (i) To analyse the receptiveness of the population of French‐speaking Quebecers to certain ethical principles promoted by public health authorities during the AH1N1 vaccination campaign. (ii) To add to the limited number of empirical studies that examine the population's perception of ethical values. Design Eight months after the end of the AH1N1 vaccination campaign in the Province of Quebec (Canada), 100 French‐speaking Quebecers were assembled in ten focus groups. Discussions focussed on the level of respect shown by public health authorities for individual autonomy, the limits of appeals for solidarity, the balance between vaccination efficiency and social justice towards non‐prioritized subpopulations, vaccination as a demonstration of civic duty and social responsibility. Results The population acknowledged a high level of individual responsibility towards family members and agreed to vaccination to protect children and ageing parents. However, the concepts of civic duty and solidarity did not elucidate unanimous support, despite the fact that social justice stood out as a dominant value of public morals. Conclusion The ethical principles promoted in influenza pandemic ethics frameworks are subject to reinterpretation by the population. An ethic of public health must consider their understanding of the fundamental values that legitimize mass vaccination.

  September 28, 2012   doi: 10.1111/hex.12005   open full text
• Elderly patients' experiences using adaptive conjoint analysis software as a decision aid for osteoarthritis of the knee.
  Donna Rochon, Jan M. Eberth, Liana Fraenkel, Robert J. Volk, Simon N. Whitney.
  Health Expectations. September 20, 2012
  Background Decision making in knee osteoarthritis, with many treatment options, challenges patients and physicians alike. Unfortunately, physicians cannot describe in detail each treatment's benefits and risks. One promising adjunct to decision making in osteoarthritis is adaptive conjoint analysis (ACA). Objective To obtain insight into the experiences of elderly patients who use adaptive conjoint analysis to explore treatment options for their osteoarthritis. Design Participants, all 65 and older, completed an ACA decision aid exploring their preferences with regard to the underlying attributes of osteoarthritis interventions. We used focus groups to obtain insight into their experiences using this software. Results Content analysis distributed our participants' concerns into five areas. The predicted preferred treatment usually agreed with the individual's preference, but our participants experienced difficulty in four other domains: the choices presented by the software were sometimes confusing, the treatments presented were not the treatments of most interest, the researchers' claims about treatment characteristics were unpersuasive and cumulative overload sometimes developed. Conclusion Adaptive conjoint analysis presented special challenges to our elderly participants; we believe that their relatively low level of computer comfort was a significant contributor to these problems. We suggest that other researchers choose the software's treatments and present the treatment attributes with care. The next and equally vital step is to educate participants about what to expect, including the limitations in choice and apparent arbitrariness of the trade‐offs presented by the software. Providing participants with a sample ACA task before undertaking the study task may further improve participant understanding and engagement.

  September 20, 2012   doi: 10.1111/j.1369-7625.2012.00811.x   open full text
• Hearing the voices of service user researchers in collaborative qualitative data analysis: the case for multiple coding.
  Angela Sweeney, Kathryn E Greenwood, Sally Williams, Til Wykes, Diana S Rose.
  Health Expectations. September 07, 2012
  Background Health research is frequently conducted in multi‐disciplinary teams, with these teams increasingly including service user researchers. Whilst it is common for service user researchers to be involved in data collection – most typically interviewing other service users – it is less common for service user researchers to be involved in data analysis and interpretation. This means that a unique and significant perspective on the data is absent. Aim This study aims to use an empirical report of a study on Cognitive Behavioural Therapy for psychosis (CBTp) to demonstrate the value of multiple coding in enabling service users voices to be heard in team‐based qualitative data analysis. Design The CBTp study employed multiple coding to analyse service users’ discussions of CBT for psychosis (CBTp) from the perspectives of a service user researcher, clinical researcher and psychology assistant. Multiple coding was selected to enable multiple perspectives to analyse and interpret data, to understand and explore differences and to build multi‐disciplinary consensus. Results Multiple coding enabled the team to understand where our views were commensurate and incommensurate and to discuss and debate differences. Through the process of multiple coding, we were able to build strong consensus about the data from multiple perspectives, including that of the service user researcher. Discussion Multiple coding is an important method for understanding and exploring multiple perspectives on data and building team consensus. This can be contrasted with inter‐rater reliability which is only appropriate in limited circumstances. Conclusion We conclude that multiple coding is an appropriate and important means of hearing service users’ voices in qualitative data analysis.

  September 07, 2012   doi: 10.1111/j.1369-7625.2012.00810.x   open full text
• Creating an impersonal NHS? Personalization, choice and the erosion of intimacy.
  John Owens.
  Health Expectations. September 04, 2012
  Background Personalization – most often understood in terms of granting patients greater opportunity to participate in, and make choices about, the services they receive – has become a key principle guiding reform of the English NHS. Objective This study sets out to explore the relationship between two senses of the term ‘personal’ within the context of personalization. Firstly, much of the policy literature equates a ‘personal’ service with one that is responsive to the choices of individual patients. Secondly, the term ‘personal’ can be thought to refer to the intimate relationships between patients and medical professionals that have typified traditional models of good practice. Methodology and Discussion I combine a review of the relevant academic and policy literature on personalization with a process of conceptual analysis to uncover three arguments, which suggest that personalization based on choice may adversely affect standards of care by eroding the qualities of intimacy at the heart of the care process. Thus, an unintended consequence of the drive for personalization may be the creation of an NHS that is, in an important sense, less personal than it once was. Conclusion Whilst personalization may deliver many potential benefits, the tension between promoting patient choice and retaining intimate professional‐patient relationships ought to be taken seriously. Thus, the task of promoting choice whilst retaining intimacy represents a key policy challenge for advocates of personalization.

  September 04, 2012   doi: 10.1111/hex.12000   open full text
• Barriers for an effective communication around clinical decision making: an analysis of the gaps between doctors' and patients' point of view.
  José Joaquín Mira, Mercedes Guilabert, Virtudes Pérez‐Jover, Susana Lorenzo.
  Health Expectations. August 17, 2012
  Background There are doubts on whether patients feel that they have sufficient information for actively participating in clinical decisions. Objective To describe the type of information that patients receive. To determine whether patients consider this information sufficient, and whether it contributes or not to improve clinical safety. To identify the barriers for patient participation in clinical decision making. Study Design Cross‐sectional study with 764 patients and 327 physicians. Study Setting and participants Fourteen health centres belonging to three primary care districts and three hospitals in Spain. Principal Findings Just 35.1% (268) (95% CI 32.2, 39.1%) of patients preferred to have the last word in clinical decisions. Age (39 vs. 62%, P < 0.001) and severity of illness (38 vs. 46%, P = 0.002) increased the tendency to take a passive role. In 85.1% (650) (95% CI 83.3, 88.3%) of the cases, patients reported having received sufficient information. Lack of consultation time (29.6%, 95% CI 25.8, 32.5%) and patients' use of Internet or other sources (19.2%, 95% CI 16.4, 22.2%) were identified as new obstacles to doctor–patient communication by the patients. Only 19.6% (64) (95% CI 15.4, 24.2%) of doctors considered that they could intervene to involve patients in the decisions. Discussions and Conclusions The majority of patients prefer the decisions to be made by their doctor, especially those with more severe illnesses, and older patients. Patients are not normally informed about medication interactions, precautions and foreseeable complications. The information provided by general practitioners does not seem to contribute enough to the patient involvement in clinical safety.

  August 17, 2012   doi: 10.1111/j.1369-7625.2012.00809.x   open full text
• Do people really know what makes a family history of cancer?
  Jennifer N. W. Lim, Jenny Hewison.
  Health Expectations. August 13, 2012
  Background Family history is often referred to as a family tree in casual everyday conservations, but it carries a different connotation in medicine. This study is the first to investigate people's understanding of ‘family medical history’ and the concept of ‘family’ in the context of inherited cancer. Methods Three hundred and nine staff at the Faculty of Medicine and Health, University of Leeds completed an online web survey. Results Not all respondents understood or knew what makes a family history of cancer. Only 54% knew exactly the type of information required to make a family history. Apart from blood relatives, adopted and step‐siblings, step parents, in‐laws, spouses, friends and colleagues were also named as ‘family’ for family history taking. Personal experience of living with cancer and academic qualification were not significant in influencing knowledge of family history. Conclusions There is misunderstanding and poor knowledge of family history of cancer and the type of information required to make a family history even in a sample of people teaching and researching medicine and health issues. Public understanding of the value of family medical history in cancer prevention and management is important if informed clinical decisions and appropriate health care are to be delivered.

  August 13, 2012   doi: 10.1111/j.1369-7625.2012.00808.x   open full text
• Understanding why patients with immune thrombocytopenia are deeply divided on splenectomy.
  Karen K. W. Wang, Cathy Charles, Nancy M. Heddle, Emmy Arnold, Laura Molnar, Donald M. Arnold.
  Health Expectations. August 07, 2012
  Background Splenectomy is an effective treatment for chronic immune thrombocytopenia (ITP); however, patients' willingness to accept splenectomy is variable. Objective To explore why some ITP patients accepted splenectomy when recommended by their physician while others refused. Design Qualitative descriptive study using one‐to‐one, in‐depth patient interviews and a team‐based approach to thematic analysis. Results Of 25 patients interviewed, 15 refused splenectomy and 10 accepted and were awaiting surgery. Themes about the influences on splenectomy decision making that emerged from patient interviews were (i) the perceived impact of ITP on quality of life, (ii) patients' view of splenectomy as a last resort treatment, (iii) patients' interpretations of the rates of treatment success and failure and (iv) a perceived lack of familiarity about ITP. Patients who accepted splenectomy perceived their disease as having a negative impact on their quality of life, whereas patients who refused felt their situation was not severe enough to warrant surgery. Patients developed their own experiential interpretations of the success rates of splenectomy quoted to them. A general lack of awareness of the clinical impact of ITP and its cause was identified by patients as barriers to choosing splenectomy. Conclusions Patients' disease experience, perceptions of the lack of treatment alternatives, interpretations of treatment success and failure rates and a general lack of awareness about ITP influenced treatment choice. This study represents a first step towards contextualizing treatment decision making in ITP, focusing on patient preferences and values.

  August 07, 2012   doi: 10.1111/j.1369-7625.2012.00806.x   open full text
• Effect of intervention on decision making of treatment for disease progression, prostate‐specific antigen biochemical failure and prostate cancer death.
  Rex C.‐C. Huang, Anssi Auvinen, Matti Hakama, Teuvo L. J. Tammela, Martti Ala‐Opas, Mikael Leppilahti, Timo Vornanen, Hsiu‐Hsi Chen.
  Health Expectations. July 19, 2012
  BackgroundPatient preference for the choice of treatment modality for prostate cancer has increasingly gained attention.ObjectiveTo assess the impact of client‐oriented decision on long‐term mortality, disease progression and biochemical failure compared with standard treatment protocol (TP).MethodsWith data from a Finnish multicentre, randomized controlled trial with two arms [104 in the enhanced patient participation (EPP) arm and 106 in the TP arm], disease‐specific and disease‐free survival, biochemical failure with elevated prostate‐specific antigen (PSA) level and disease progression were compared between the two arms using Wilcoxon test and also Cox proportional hazards regression model.ResultsPatients in the EPP arm had a higher risk of death by 37% [HR, 1.37 (0.87–2.17)] compared with those in the TP arm. Patients in the EPP arm were at increased risk of having biochemical failure by 14% [HR, 1.14 (0.72–1.79)] and for having disease progression by 2% [HR, 1.02 (0.61–1.70)] compared with those in the TP arm. All the differences were non‐significant.ConclusionsPatients actively involved in the choice of treatment had higher risk of prostate cancer death but only slightly increased risk of biochemical failure and clinical disease progression. These findings would provide a good reference when patient autonomy for the choice of treatment modality is addressed.

  July 19, 2012   doi: 10.1111/j.1369-7625.2012.00802.x   open full text
• Trust in government and support for governmental regulation: the case of electronic health records.
  Mitchel N. Herian, Nancy C. Shank, Tarik L. Abdel‐Monem.
  Health Expectations. July 19, 2012
  BackgroundThis paper presents results from a public engagement effort in Nebraska, USA, which measured public opinions about governmental involvement in encouraging the use of electronic health records (EHRs).ObjectiveWe examine the role of trust in government in contributing to public support for government involvement in the development of EHR technologies. We hypothesize that trust in government will lead to support for federal and state governmental encouragement of the use of EHRs among doctors and insurance companies. Further, because individual experiences with health‐care professionals will reduce perceptions of risk, we expect that support for governmental involvement will be tempered by greater personal experience with the health‐care industry.Design and ResultsExamining a small survey of individuals on the issue, we find general support for both of our hypotheses. The findings suggest that trust in government does have a positive relationship with support for government involvement in the policy domain, but that the frequency of personal experiences with health‐care providers reduces the extent to which the public supports governmental involvement in the development of EHR technology.Discussion and ConclusionThis inquiry contributes to our understanding of public attitudes towards government involvement in EHRs in the United States specifically and contributes to social science examining links between trust in government and support for governmental activity in the emerging policy domain regarding electronic health records systems.

  July 19, 2012   doi: 10.1111/j.1369-7625.2012.00803.x   open full text
• Mapping the impact of patient and public involvement on health and social care research: a systematic review.
  Jo Brett, Sophie Staniszewska, Carole Mockford, Sandra Herron‐Marx, John Hughes, Colin Tysall, Rashida Suleman.
  Health Expectations. July 19, 2012
  Background There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. Objective To identify the impact of patient and public involvement on health and social care research. Design A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon‐Woods et al. (2005) checklist. Inclusion criteria All study types that reported the impact PPI had on the health and/or social care research study. Main results A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. Conclusion This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.

  July 19, 2012   doi: 10.1111/j.1369-7625.2012.00795.x   open full text
• Quality and use of consumer information provided with home test kits: room for improvement.
  Janaica E. J. Grispen, Martine H. P. Ickenroth, Nanne K. Vries, Trudy Weijden, Gaby Ronda.
  Health Expectations. July 19, 2012
  Background Diagnostic self‐tests (tests on body materials that are initiated by consumers with the aim of diagnosing a disorder or risk factor) are becoming increasingly available. Although the pros and cons of self‐testing are currently not clear, it is an existing phenomenon that is likely to gain further popularity. Objective To examine consumers' use of and needs for information about self‐testing, and to assess the quality of consumer information provided with home test kits, as perceived by consumers and as assessed using a checklist of quality criteria. Methods A cross‐sectional Internet survey among 305 self‐testers assessed their use of and needs for information and their perception of the quality of consumer information provided with self‐test kits. A meta‐search engine was used to identify Dutch and English consumer information for home diagnostic tests available online at the time of the study. The quality of this consumer information was evaluated using a checklist of quality criteria. Results The consumers' information needs were in line with the most frequently used information, and the information was perceived as being of moderate to good quality. The information was mostly in agreement with clinical practice guidelines, although information on reliability and follow‐up behaviour was limited. Approximately half of the instruction leaflets did not include information on the target group of the test. Conclusions Although generally of moderate to good quality, some aspects of the information provided were in many cases insufficient. European legislation concerning self‐tests and accompanying information needs to be adapted and adhered to more closely.

  July 19, 2012   doi: 10.1111/j.1369-7625.2012.00805.x   open full text
• Impact of clinical and patient‐reported outcomes on patient satisfaction with cataract extraction.
  Susana Garcia‐Gutierrez, Jose M. Quintana, Urko Aguire, Irantzu Barrio, Carlota Las Hayas, Nerea Gonzalez,.
  Health Expectations. July 11, 2012
  BackgroundTo date, factors that influence satisfaction with cataract surgery have not been broadly explored.ObjectiveTo identify variables related to patient satisfaction after cataract extraction by phacoemulsification and to determine the relationship between satisfaction and visual acuity (VA) and visual function (VF).DesignProspective cohort study.SettingFive hospitals belonging to the Basque Health Care Service.Participants4335 consecutive patients undergoing cataract extraction.InterventionsClinical data on vision were collected before the intervention and 6 weeks afterwards. Before cataract extraction, patients answered a global question about their expectations for the procedure, answered three questions related to specific activities (reading, going out and recognizing people, and doing housework) and completed the Visual Function‐14 (VF‐14) and Short‐Form‐36 (SF‐36) instruments. Three months after cataract extraction, they again completed the VF‐14 and SF‐36 along with questions about global satisfaction with the procedure and satisfaction with the three specific activities.Main outcome measuresThree months after cataract extraction, they again completed the VF‐14 and SF‐36 along with questions about global satisfaction with the procedure and satisfaction with the three specific activities.ResultsPre‐intervention VA and VF‐14 scores and their post‐intervention changes were associated with both global satisfaction and satisfaction with the ability to perform specific activities. Unresolved ocular complications were related to global satisfaction with cataract extraction (OR 95% = 0.39(0.27, 0.55), P < 0.001). Both the mental and physical component scales of the SF‐36 were related to global satisfaction. A group of patients were not satisfied with the intervention in spite of achieving similar vision‐related improvements as patients who were quite satisfied with the procedure.ConclusionSatisfaction with cataract extraction is related to clinical outcomes and is also associated with patients' expectations of their improvement in visual function.

  July 11, 2012   doi: 10.1111/j.1369-7625.2012.00801.x   open full text
• Exploring older and younger adults' preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ).
  Bo Xie, Mo Wang, Robert Feldman, Le Zhou.
  Health Expectations. July 11, 2012
  ContextExisting measurements of patient preferences cover only a limited range of health information and participation in decision making. A broader approach is necessary to understand the breadth and variations in patient preferences.ObjectiveTo explore the breadth and variances in patient preferences for health information and participation in decision making and to understand the relationship between age and each type of preference.DesignThe Health Information Wants Questionnaire (HIWQ) was administered during May–December 2010 to gather data about the information and corresponding decision‐making autonomy participants would want in seven areas: diagnosis, treatment, laboratory tests, self‐care, complementary and alternative medicine (CAM), psychosocial factors and health‐care providers.SettingA large state university, public libraries and senior centres in Maryland, USA.ParticipantsA convenience sample of 438 individuals, including 226 undergraduates (mean age = 20; SD = 2.15) and 212 community‐dwelling older adults (mean age = 72; SD = 9.00).Main Outcome MeasuresRatings on the information and decision‐making items of the HIWQ.ResultsParticipants expressed higher levels of preference for information than for participation in decision making on six of seven subscales. On the psychosocial subscale, they expressed stronger desire for participation in decision making than for information. Age had no predictive effect on the overall preferences or specific preferences for information and participation in decision making about standard treatments and CAM. The predictive effect of age on the other types of preferences varied significantly.ConclusionsPhysicians should take into account the breadth and variations in patient preferences. The predictive effect of age on patient preferences varied depending on the specific area of preferences.

  July 11, 2012   doi: 10.1111/j.1369-7625.2012.00804.x   open full text
• What primary health‐care services are Australian consumers willing to accept from nurse practitioners? A National Survey.
  Rhian Parker, Laura Forrest, James McCracken, Ian McRae, Darlene Cox.
  Health Expectations. July 11, 2012
  BackgroundNurses are becoming increasingly important as providers of primary health care in Australia. In November 2010, Medicare provider rights and Pharmaceutical Benefits Scheme rights for nurse practitioners, working in private practice and in collaboration with a medical practitioner, were introduced in Australia. Although international evidence suggests that nurse practitioners would be appropriate and acceptable providers of care at the first point of contact, such as primary health care, there is little Australian evidence about what care consumers are willing to accept from nurse practitioners.ObjectivesTo ascertain what care Australian health‐care consumers would accept from nurse practitioners in this setting.ParticipantsAustralian adults over 18 years of age.MethodsNational Survey delivered online. Information about the survey was disseminated through a media campaign, stakeholder engagement and through the health‐care consumer networks nationally.ResultsThe total number of respondents that started the survey was n = 1883. Ninety‐five percentage (n = 1784) of respondents completed the survey. The majority of respondents were women, aged 25–54 years, had completed tertiary education and had an annual household income of more than A$80 000. The majority of the respondents (n = 1562, 87%) said they would be prepared to see a nurse practitioner for some of their primary health‐care needs.ConclusionsThe findings of this study suggest consumers are accepting of a range of activities undertaken by nurse practitioners in primary health care and this has relevance for primary health‐care workforce mix and organization, particularly for areas that are underserved by medical practitioners.

  July 11, 2012   doi: 10.1111/j.1369-7625.2012.00800.x   open full text
• Choosing dialysis modality: decision making in a chronic illness context.
  Anna Winterbottom, Hilary L Bekker, Mark Conner, Andrew Mooney.
  Health Expectations. July 02, 2012
  BackgroundPatients with chronic kidney disease (CKD) are encouraged to make an informed decision about dialysis. Survival rates for dialysis are equivalent yet there is wide variation in peritoneal dialysis uptake in the adult UK population. It is unclear how much is attributable to variations in patients' preferences. Kidney function usually declines over months and years; few studies have addressed how a chronic illness context affects choice. This study describes patients' decision making about dialysis and understands how the experience of CKD is associated with treatment choice.MethodSurvey employing interview methods explored 20 patients' views and experiences of making their dialysis choice. Data were analysed using thematic framework analysis to provide descriptive accounts of how patients experienced their illness and made treatment decisions.ResultsPatients talked about challenges of living with CKD. Patients were provided with lots of information about treatment options in different formats. Patients did not distinguish between different types of dialysis and/or have an in‐depth knowledge about options. Patients did not talk about dialysis options as a choice but rather as a treatment they were going to have.ConclusionMost patients perceived their choice as between ‘dialysis’ and ‘no dialysis’. They did not perceive themselves to be making an active choice. Possibly, patients feel they do not need to engage with the decision until symptomatic. Despite lots of patient information, there were more opportunities to encounter positive information about haemodialysis. A more proactive approach is required to enable patients to engage fully with the dialysis treatment options.

  July 02, 2012   doi: 10.1111/j.1369-7625.2012.00798.x   open full text
• Evidence‐based disparities: examining the gap between health expectations and experiences.
  Dana R. Vashdi, Yair Zalmanovitch.
  Health Expectations. June 28, 2012
  Context  In a time of economic austerity, one of the most daunting questions is who decides on healthcare rationing? In the current study, we sought to examine if the public can in fact provide meaningful information regarding healthcare policy issues. Based on theories of public policy, this paper tries to find out if patients behave akin to ‘responsible citizens’ and can provide differentiated expectations between three healthcare dimensions.Methods  One thousand two‐hundred eleven individuals participated in a telephone interview. Participants were asked two series of questions, one regarding their views on the primary care, prevention and promotion practices they experience with their healthcare provider and one regarding the importance of these practices to them. We calculated a difference score representing the gap in each healthcare dimension.Findings  In all three healthcare dimensions, the mean gap is in the positive side of the axis indicating that the public does not receive what it expects to receive, or in policy terms there is ‘a responsiveness deficit’. The mean gap in relation to primary care is significantly lower than the mean gap in both preventive care and health promotion.Conclusions  The public can provide meaningful information even in areas of endless demand and can provide an addition point of view to be considered by policy makers in complicated healthcare rationing decisions.

  June 28, 2012   doi: 10.1111/j.1369-7625.2012.00790.x   open full text
• Subjective expectations regarding length and health‐related quality of life in Hungary: results from an empirical investigation.
  Márta Péntek, Valentin Brodszky, Ádám László Gulácsi, Ottó Hajdú, Job Exel, Werner Brouwer, László Gulácsi.
  Health Expectations. June 28, 2012
  BackgroundSubjective expectations regarding future health are rarely studied, yet may have implications for medical decision making, health behaviour and health economic analysis.ObjectiveTo study people's subjective expectations regarding length and future quality of life in Hungary and compare these with previous findings from the Netherlands.MethodsA cross‐sectional survey was performed, using a questionnaire that was put on a highly frequented web journal during 1 day. Main socio‐demographic variables and health status of the voluntary participants were registered using the EQ‐5D questionnaire. People were asked about the age they expected to live and the health status they expected to have at ages 60, 70, 80 and 90, using the EQ‐5D descriptive system. Responses were matched and compared to age‐ and gender‐specific life expectancy data from the Hungarian National Statistics and to age‐ and gender‐specific EQ‐5D scores from a prior nationally representative survey in Hungary.ResultsIn total, 9407 people were included in the analysis with mean age of 36.1 (SD 10.6) years, mainly qualified (degree 74.0%), employed (86.0%) men (67.1%). People overestimated their life expectancy (women, 1.6; men, 8.2 years) and expected a sharp deterioration in health at the age 70. Age, current health status, perception of a healthy lifestyle and kins' age at death were important explanatory factors for subjective expectations. Subjective life expectancy correlates strongly with expected future health status.ConclusionsThe striking similarities between two surveys from distinct nations suggest that people's (mis)expectations regarding length and future quality of life are probably rather generalizable between jurisdictions within Europe.

  June 28, 2012   doi: 10.1111/j.1369-7625.2012.00797.x   open full text
• The urban underserved: attitudes towards gaining full access to electronic medical records.
  Shireesha Dhanireddy, Jan Walker, Lisa Reisch, Natalia Oster, Thomas Delbanco, Joann G. Elmore.
  Health Expectations. June 28, 2012
  BackgroundAs the use of electronic medical records (EMRs) spreads, health‐care organizations are increasingly offering patients online access to their medical records. Studies evaluating patient attitudes towards viewing elements of their records through secure, electronic patient portals have generally not included medically underserved patients or those with HIV/AIDS. The goal of this study was to gain insight into such patients' attitudes towards online access to their medical records, including their doctors' visit notes.MethodsQualitative study of four focus groups with adult patients in general adult medicine and HIV clinics at a large county hospital. Transcripts were analysed for themes using an immersion/crystallization approach.ResultsPatients' baseline understanding of the health record was limited. Perceived benefits of online access were improved patient understanding of health and disease, convenience, empowerment and a stronger relationship with their provider. Concerns included threats to privacy, worries about being unable to understand their record, fear that the computer would replace direct provider contact and hesitancy about potential demands on a provider's time. Patients also recommended providing online visit reminders, links to credible health information and assistance for paying bills.ConclusionDespite their initial lack of knowledge of the health record, focus group participants were overwhelmingly positive about the prospect of online access to medical records. However, they worried about potential loss of privacy and interference with the patient–provider relationship. As EMRs increasingly offer patients open access to their medical records, vulnerable patient groups will likely join others in desiring and adopting such change, but may need targeted support during times of transition.

  June 28, 2012   doi: 10.1111/j.1369-7625.2012.00799.x   open full text
• Decision influences and aftermath: parents, stillbirth and autopsy.
  Dell Horey, Vicki Flenady, Liz Conway, Emma McLeod, Teck Yee Khong.
  Health Expectations. June 19, 2012
  Background  Stillbirth, among the most distressing experiences an adult may face, is also a time when parents must decide whether an autopsy or other post‐mortem examinations will be performed on their infant. Autopsies can reveal information that might help explain stillbirth, yet little is known about how people make this difficult decision.Objectives  This study examines the influences on decisions about autopsy after stillbirth among Australian parents.Design  The study involved secondary analysis of transcripts of three focus groups using qualitative content analysis.Participants and setting  Seventeen parents of 14 stillborn babies participated in consultations around the revision of a perinatal mortality audit guideline.Results  Parents shared the decision making. Four decision drivers were identified: parents’ preparedness or readiness to make decisions; parental responsibility; concern for possible consequences of an autopsy and the role of health professionals. Each decision driver involved reasons both for and against autopsy. Two decision aftermath were also present: some parents who agreed to an autopsy were dissatisfied with the way the autopsy results were given to them and some parents who did not have an autopsy for their infant expressed some form of regret or uncertainty about the choice they made.Conclusions  To make decisions about autopsy after stillbirth, parents need factual information about autopsy procedures, recognition that there might be fear of blame, an environment of trust, and health services and professionals prepared and skilled for difficult conversations.

  June 19, 2012   doi: 10.1111/j.1369-7625.2012.00782.x   open full text
• Chronic Disease Management Programmes: an adequate response to patients’ needs?
  Mieke Rijken, Nienke Bekkema, Pauline Boeckxstaens, François G. Schellevis, Jan M. De Maeseneer, Peter P. Groenewegen.
  Health Expectations. June 19, 2012
  Background  Inspired by American examples, several European countries are now developing disease management programmes (DMPs) to improve the quality of care for patients with chronic diseases. Recently, questions have been raised whether the disease management approach is appropriate to respond to patient‐defined needs.Objective  In this article we consider the responsiveness of current European DMPs to patients’ needs defined in terms of multimorbidity, functional and participation problems, and self‐management.Method  Information about existing DMPs was derived from a survey among country‐experts. In addition, we made use of international scientific literature.Results  Most European DMPs do not have a solid answer yet to the problem of multimorbidity. Methods of linking DMPs, building extra modules to deal with the most prevalent comorbidities and integration of case management principles are introduced. Rehabilitation, psychosocial and reintegration support are not included in all DMPs, and the involvement of the social environment of the patient is uncommon. Interventions tailored to the needs of specific social or cultural patient groups are mostly not available. Few DMPs provide access to individualized patient information to strengthen self‐management, including active engagement in decision making.Conclusion  To further improve the responsiveness of DMPs to patients’ needs, we suggest to monitor ‘patient relevant outcomes’ that might be based on the ICF‐model. To address the needs of patients with multimorbidity, we propose a generic comprehensive model, embedded in primary care. A goal‐oriented approach provides the opportunity to prioritize goals that really matter to patients.

  June 19, 2012   doi: 10.1111/j.1369-7625.2012.00786.x   open full text
• Patient advocacy and patient centredness in participant recruitment to randomized‐controlled trials: implications for informed consent.
  Zelda Tomlin, Isabel deSalis, Merran Toerien, Jenny L. Donovan.
  Health Expectations. June 19, 2012
  Context  With the routinization of evidence‐based medicine and of the randomized‐controlled trial (RCT), more patients are becoming ‘sites of evidence production’ yet, little is known about how they are recruited as participants; there is some evidence that ‘substantively valid consent’ is difficult to achieve.Objective  To explore the views and experiences of nurses recruiting patients to randomized‐controlled trials and to examine the extent to which their recruitment practices were patient‐centred and patient empowering.Design  Semi‐structured in‐depth interviews; audio recording of recruitment appointments; thematic interactional analysis (drawing on discourse and conversation analysis).Setting and participants  Nurses recruiting patients to five publicly funded RCTs and patients consenting to the recording of their recruitment sessions.Main outcome measures  The views of recruiting nurses about their recruitment role; the extent to which nurse–patient interactions were patient‐centred; the nature of the nurses’ interactional strategies and the nature and extent of patient participation in the discussion.Results  The nurses had a keen sense of themselves as clinicians and patient advocates and their perceptions of the trial and its interventions were inextricably linked to those of the patients. However, many of their recruitment practices made it difficult for patients to play an active and informed part in the discussion about trial participation, raising questions over the quality of consent decisions.Conclusion  Nurses working in patient recruitment to RCTs need to reconcile two different worlds with different demands and ethics. Evidence production, a central task in evidence‐based medicine, poses a challenge to patient‐centred practice and more research and relevant training are needed.

  June 19, 2012   doi: 10.1111/j.1369-7625.2012.00792.x   open full text
• ‘But is it a question worth asking?’ A reflective case study describing how public involvement can lead to researchers’ ideas being abandoned.
  Jonathan D. Boote, Mary Dalgleish, Janet Freeman, Zena Jones, Marianne Miles, Helen Rodgers.
  Health Expectations. May 31, 2012
  Background  It is good practice for the public to be involved in developing research ideas into grant applications. Some positive accounts of this process have been published, but little is known about when their reactions are negative and when researchers’ ideas are abandoned. Objective  To present a case study account of when an academic‐led idea for funding was not supported by stroke survivors and carers who were asked to contribute to its development, together with a reflection on the implications of the case from all the stakeholders involved. Design  A reflective case study of a research idea, developed by an academic researcher, on which stakeholders were consulted. Participants  University researchers, clinicians, public involvement managers, and stroke survivors and carers from the NIHR’s Stroke Research Network. Findings  Although the idea met with the approval of health professionals, who were keen to develop it into a funding bid, the stroke survivors and carers did not think the idea worth pursuing. This lack of patient and carer support led to the idea being abandoned. Reflecting on this, those involved in the consultation believed that the savings accrued from abandoning the idea, in terms of ensuring that public money is not wasted, should be seen as an important benefit of public involvement in the research process. Conclusion  Little is known about the role of the public in the abandonment of research ideas. We recommend that further research is undertaken into this important contribution that patients and the public can make to health research.

  May 31, 2012   doi: 10.1111/j.1369-7625.2012.00771.x   open full text
• Avoiding piecemeal research on participation in cervical cancer screening: the advantages of a social identity framework.
  Candice Tribe, Janine Webb.
  Health Expectations. May 31, 2012
  Background  Cervical cancer screening research has predominantly focused on one type of participation, namely compliance with medical recommendations, and has largely ignored other types of participation. While there is some research that has taken a different approach, findings in this research area are not well integrated under a theoretical framework.Objective  The aim of this study is to show how consideration of a broader definition of participation and better integration of the theoretical conceptualization of participation in cervical cancer screening are both possible and desirable to enable a better understanding of women’s experiences of cervical cancer screening specifically and to improve women’s health generally.Main Conclusion  It is suggested that alternative types of participation in cervical cancer screening warrant further investigation and that a social identity theoretical approach offers one way of integrating such conceptualizations of participation. The paper also argues for more explicit consideration of the role of social processes and of the variables, such as power, social identity and relational justice, which are involved in participation in cervical cancer screening.

  May 31, 2012   doi: 10.1111/j.1369-7625.2012.00779.x   open full text
• Views on traditional Chinese medicine amongst Chinese population: a systematic review of qualitative and quantitative studies.
  Vincent C. H. Chung, Polly H. X. Ma, Chun Hong Lau, Samuel Y. S. Wong, Eng Kiong Yeoh, Sian M. Griffiths.
  Health Expectations. May 31, 2012
  BackgroundHealth‐care professionals worldwide have started to appreciate patients' perspectives on the use of complementary and alternative medicine (CAM) particularly given its popularity. However, cultural perspectives may vary and it may not be possible to apply research findings on the use of CAM from the west to the east.ObjectiveThis systematic review aims to synthesize usage patterns of traditional Chinese medicine (TCM) amongst Chinese populations in different parts of the world and explore potential geographical variations.Search strategySix international and four Chinese databases were searched, and manual searches of relevant monographs and government publications were carried out.Inclusion criteriaQuantitative, qualitative or mixed‐method research that aimed to investigate Chinese patients' perception of, and perspectives on, TCM was included.Data extraction and synthesisFor each study included, texts under the headings of ‘results’ or ‘findings’ were extracted and subjected to analysis. A thematic synthesis approach was adopted for synthesizing qualitative and quantitative studies.Main resultsAmongst the 28 studies included, twenty were quantitative surveys, six were qualitative studies and two were mixed‐method studies. The overall methodological quality was mediocre. Data synthesis suggested that patients from all regions share a common cultural affinity to TCM and consider it to be an effective complement to western medicine (WM) for treating chronic or serious diseases. However, heterogeneous views on (i) disclosing TCM use to WM doctors and (ii) the potential harm of herbs emerged across different study locations.Discussion and conclusionsFuture research should explore how variation in health systems may influence patients' perception of CAM in different countries.

  May 31, 2012   doi: 10.1111/j.1369-7625.2012.00794.x   open full text
• Consumer perspectives about weight management services in a community pharmacy setting in NSW, Australia.
  Irene S. Um, Carol Armour, Ines Krass, Timothy Gill, Betty B. Chaar.
  Health Expectations. May 31, 2012
  Background  Obesity is a public health challenge faced worldwide. Community pharmacists may be well placed to manage Australia’s obesity problem owing to their training, accessibility and trustworthiness. However, determining consumers’ needs is vital to the development of any new services or the evaluation of existing services.Objective  To explore Australian consumers’ perspectives regarding weight management services in the community pharmacy setting, including their past experiences and willingness to pay for a specific pharmacy‐based service.Design  An online cross‐sectional consumer survey was distributed through a marketing research company. The survey instrument comprised open‐ended and closed questions exploring consumers’ experiences of and preferences for weight management services in pharmacy. It also included an attitudinal measure, the Consumer Attitude to Pharmacy Weight Management Services (CAPWMS) scale.Setting and participants  A total of 403 consumers from New South Wales, Australia, completed the survey.Results  The majority of respondents had previously not sought a pharmacist’s advice regarding weight management. Those who had previously consulted a pharmacist were more willing to pay for and support pharmacy‐based services in the future. Most consumers considered pharmacists’ motivations to provide advice related to gaining profit from selling a product and expressed concerns about the perceived conflicts of interest. Participants also perceived pharmacists as lacking expertise and time.Conclusion  Although Australian consumers were willing to seek pharmacists’ advice about weight management, they perceived several barriers to the provision of weight management services in community pharmacy. If barriers are addressed, community pharmacies could be a viable and accessible setting to manage obesity.

  May 31, 2012   doi: 10.1111/j.1369-7625.2012.00788.x   open full text
• On defensive decision making: how doctors make decisions for their patients.
  Rocio Garcia‐Retamero, Mirta Galesic.
  Health Expectations. May 31, 2012
  Background  In the past decade, the number of lawsuits for medical malpractice has risen significantly. This could affect the way doctors make decisions for their patients.Objective  To investigate whether and why doctors practice defensive medicine with their patients.Design  A questionnaire study was conducted in general practice departments of eight metropolitan hospitals in Spain, between January and February 2010.Setting and participants  Eighty general practitioners (48% men; mean age 52 years) with an average of 15.3 years of experience and their 80 adult patients (42% men; mean age 56 years) participated in the study.Main outcome measurements  Participants completed a self‐administered questionnaire involving choices between a risky and a conservative treatment. One group of doctors made decisions for their patients. Another group of doctors predicted what their patients would decide for themselves. Finally, all doctors and patients made decisions for themselves and described the factors they thought influenced their decisions.Results  Doctors selected much more conservative medical treatments for their patients than for themselves. Most notably, they did so even when they accurately predicted that the patients would select riskier treatments. When asked about the reasons for their decisions, most doctors (93%) reported fear of legal consequences.Discussion and conclusions  Doctors’ decisions for their patients are strongly influenced by concerns of possible legal consequences. Patients therefore cannot blindly follow their doctor’s advice. Our study, however, suggests a plausible method that patients could use to get around this problem: They could simply ask their doctor what he or she would do in the patient’s situation.

  May 31, 2012   doi: 10.1111/j.1369-7625.2012.00791.x   open full text
• Patient participation in the discussions of options in Spanish primary care consultations.
  Roger Ruiz Moral, Lucía Peralta Munguía, Luis Ángel Pérula de Torres, Maria Teresa Carrión, Jorge Olloqui Mundet, Mariana Martínez.
  Health Expectations. May 31, 2012
  ObjectivesTo determine patients' participation in the discussion of options in primary care consultations. Identify the patients' wish to participate and their perceptions of their participation and explore the potential factors that may influence these.DesignCross‐sectional study. Setting. Ninety‐seven general practices. Participants. six hundred and fifty‐eight patients who went to their doctors for unselected reasons. Measurements. All the encounters were videoed, patient participation in decision making (DM) was assessed with two tools. After the consultation, GPs completed a questionnaire about biomedical and relational information. Patients' preferences and perception of participation was explored with different type of questions.ResultsEncounters successfully videoed: 638. Of these, only 90 interviews clearly showed patient participation. In 161 other interviews, patient participation was considered possible. Questionnaires collected: 645. In 60% of the situations (390 encounters), patients wished they could have stated their views about the proposed option(s), but they perceived this did not happen. The degree of participation at the consultation did not relate significantly with the physician's ideas about the type of problem, evolution and treatment. Neither did any of the considered variables influence either the patients' wish to participate in the discussion of the suggested option or their perception of this.ConclusionsGPs ask patients for their opinion and promote discussion about the suggested plan in few encounters. Patients perceive this, including many patients that previously had declared not to be interested in being involved in decisions. These results revealed an important mismatch between what patients wish and what they perceive.

  May 31, 2012   doi: 10.1111/j.1369-7625.2012.00793.x   open full text
• Community perceptions of infectious diseases, antibiotic use and antibiotic resistance in context of environmental changes: a study in Odisha, India.
  Krushna Chandra Sahoo, Ashok J. Tamhankar, Eva Johansson, Cecilia Stålsby Lundborg.
  Health Expectations. May 14, 2012
  Background  The public health impact of environmental changes and the faceless threat of antibiotic resistance are currently among the top global health challenges. Community understanding of health, diseases and medicines in relation to the changing environment is necessary to mitigate the impact of these changes on health and for prudent use of antibiotics.Objective  The objective is to explore community perceptions of infectious diseases, antibiotic use and antibiotic resistance in the context of environmental changes.Methods  A qualitative study was conducted among community members with various backgrounds in education, gender, age and occupation of two districts of Odisha, India. Eight focus groups discussions and ten individual interviews were conducted. Data were analysed using content analysis.Results  Two themes emerged: ‘Interpretation of infectious diseases and health hazards in the context of environmental changes’, and ‘Understanding of antibiotic use and its consequences for resistance development and the environment’. The participants perceived that nowadays there is irregularity in the occurrence of seasons, particularly an increase in average temperature, which is influencing health. Participants’ perceptions of infectious diseases, antibiotic use and resistance varied according to their social environment. Furthermore, they perceived that improved sanitation, choice of alternative medicine and awareness and education on prudent use of antibiotics are probably some ways to prevent antibiotic resistance.Conclusions  The participants perceived that climate variability is increasing and that this has health consequences for the community. They also hypothesized an interrelationship between the environment, infectious diseases and medicine use, particularly antibiotics. This is helpful for further empirical studies.

  May 14, 2012   doi: 10.1111/j.1369-7625.2012.00789.x   open full text
• Consequences, control and appraisal: cues and barriers to engaging in self‐management among people affected by colorectal cancer – a secondary analysis of qualitative data.
  Lisa A. Kidd.
  Health Expectations. May 11, 2012
  Background  Little is known about peoples’ self‐management experiences and their desires or expectations to engage in self‐management. As such, there is little understanding about individuals’ perceived cues and barriers to engagement in self‐management, particularly in people affected by cancer.Objective  To understand cues and barriers to people’s engagement in self‐management during chemotherapy treatment for colorectal cancer.Design  Secondary analysis of qualitative data from mixed methods, longitudinal study.Setting and participants  Eleven participants undergoing treatment for colorectal cancer. Semi‐structured interviews were conducted twice with each participant, at the start and end of a 6‐month course of chemotherapy treatment in a Scottish cancer centre.Results  Cues and barriers to engagement in self‐management appeared to stem from perceptions of the impact and associated severity of side effects experiences as well as the perceptions about the efficacy of chosen self‐management activities and perceptions of control in minimizing the consequences of cancer treatment. Severe, episodic or unexpected side effects coupled with perceptions of uncertainty, lack of control and lack of adequate preparation to engage in self‐management were identified as key barriers to engagement.Discussion and conclusion  Participants’ reflection on, or appraisal of, their treatment‐related experiences and personal abilities, confidence and preferences to manage the impact of these shaped their subsequent engagement in self‐management. The findings highlight the importance of understanding individual’s self‐management experiences, perceptions, preferences, priorities and needs to help support, prepare and enable them to feel capable and confident to engage actively and effectively in self‐management.

  May 11, 2012   doi: 10.1111/j.1369-7625.2012.00785.x   open full text
• If patient‐reported outcome measures are considered key health‐care quality indicators, who is excluded from participation?
  Thilo Kroll, Sally Wyke, Deepa Jahagirdar, Karen Ritchie.
  Health Expectations. April 19, 2012
  Patient‐reported outcome measures have received increasing attention with regard to ensuring quality improvement across the health service. However, there is a risk that people with disabilities and low literacy are systematically excluded from the development of these measures as well as their application in clinical practice. This editorial highlights some of these risks and the potential consequences of exclusion for these groups.

  April 19, 2012   doi: 10.1111/j.1369-7625.2012.00772.x   open full text
• Parents’ views on how health professionals should work with them now to get the best for their child in the future.
  Joyce L. Marshall, Josephine M. Green, Helen Spiby.
  Health Expectations. April 19, 2012
  Background  Pregnancy and the first years of life are important times for future child well‐being. Early identification of families and children who might be likely to experience poorer outcomes could enable health professionals and parents to work together to promote each child’s well‐being. Little is known about the acceptability and feasibility of such an approach to parents.Objective  To investigate parents’ views about how health professionals should identify and work with families who may benefit from additional input to maximize their children’s future health and well‐being.Design  A qualitative study using focus groups.Setting and participants  Eleven focus groups were conducted with a total of 54 parents; 42 mothers and 12 fathers living in the north of England.Results  Parents welcomed the idea of preventive services. They strongly believed that everyone should have access to services to enhance child well‐being whilst recognizing that some families need additional support. Making judgements about who should receive additional services based on specific criteria evoked powerful emotions because of the implication of failure. Parents projected a belief in themselves as ‘good parents’ even in adverse circumstances.Conclusions  Targeted additional preventive services can be acceptable and welcome if health professionals introduce them sensitively, in the context of an existing relationship, providing parents are active participants.

  April 19, 2012   doi: 10.1111/j.1369-7625.2012.00774.x   open full text
• Citizens’ participation in the Italian health‐care system: the experience of the Mixed Advisory Committees.
  Mauro Serapioni, Nancy Duxbury.
  Health Expectations. April 19, 2012
  Background  In 1994, the region of Emilia‐Romagna recognized the importance of citizens’ participation in the regional health‐care system and recommended the institution of Mixed Advisory Committees in the health districts and hospitals with the objective of monitoring and assessing health‐care quality from the users’ perspective.Design  This paper reports findings from a qualitatively based evaluation involving direct observations of the committees and 39 semi‐structured interviews: 20 with representatives of patients and users’ associations and 19 with health professionals and managers involved in the activities of the committees.Results  The Mixed Advisory Committees introduced for the first time in the Italian health system an ongoing deliberative approach that gave patients and users’ representatives the opportunity to be involved in health service governance. The committees enabled the creation of a method of collective participation that overcame the reductive individualistic ‘approach’ to health‐care participation. MAC participants evaluated the committees positively for their mixed composition, which integrated different cultures, experiences and professional profiles with the potential to contribute to solving health‐care problems, in a consultative role. Although patients and users’ representatives were able to exert some form of influence, their expectations were greater than the results obtained. The study illuminated some weak points of public consultation, such as a decline in participation by citizen representatives and a weak influence on decision making.Discussion and conclusions  MACs developed a mechanism of participation that provides health‐care users’ representatives with the opportunity to contribute to the identification and analysis of critical points of the health‐care system. A strength of the MACs is their level of institutionalization within the health system in the region of Emilia‐Romagna. However, they contain a problem of representativeness, lacking a formal system of determining a representative composition from among patients and users’ associations. The case study also illustrates that participation without the cooperation of the health service, and financial and organizational support, will result in a decline in citizen participation, given the resources required of these volunteer citizens in return for limited results.

  April 19, 2012   doi: 10.1111/j.1369-7625.2012.00775.x   open full text
• Involving patients in treatment decisions – a delicate balancing act for Swedish dentists.
  Marta Röing, Inger Knutsson Holmström.
  Health Expectations. April 19, 2012
  Background  This study focuses on patients’ participation in treatment decisions related to the delivery of oral health care in the social welfare state of Sweden. In 1985, the National Dental Service Act gave dental patients the right to take an active role in decisions regarding their treatment and, in doing so, strengthened them as consumers. Little is known how dentists in Sweden have adapted to this change.Objective  This study explores how dentists in Sweden perceive and experience involving patients in dental treatment decisions.Design  Data were collected from open‐ended interviews with nineteen dentists, and an inductive qualitative content analysis was chosen to analyse the transcribed interviews.Findings  Involving patients in treatment decisions appeared to be delicate balancing acts between the ideals of patient involvement and the reality of how it is practised in Sweden. These balancing acts in turn revealed obstacles to patient involvement and the role that economy can play on the decisions of some patients regarding their treatment.Conclusions  This study has given insight into a relationship in which some dentists in Sweden find it hard to adapt to and change their professional role with patients who appear to act more as consumers. For these dentists, better practice of patient involvement may require adoption of a more consumerist approach. However, in situations where economy influences patients’ treatment choices, the ideals of patient involvement may remain unattainable.

  April 19, 2012   doi: 10.1111/j.1369-7625.2012.00778.x   open full text
• Informed choice in bowel cancer screening: a qualitative study to explore how adults with lower education use decision aids.
  Sian K Smith, Paul Kearney, Lyndal Trevena, Alexandra Barratt, Don Nutbeam, Kirsten J McCaffery.
  Health Expectations. April 19, 2012
  Background  Offering informed choice in screening is increasingly advocated, but little is known about how evidence‐based information about the benefits and harms of screening influences understanding and participation in screening.Objective  We aimed to explore how a bowel cancer screening decision aid influenced decision making and screening behaviour among adults with lower education and literacy.Methods  Twenty‐one men and women aged 55–64 years with lower education levels were interviewed about using a decision aid to make their screening decision. Participants were purposively selected to include those who had and had not made an informed choice.Results  Understanding the purpose of the decision aid was an important factor in whether participants made an informed choice about screening. Participants varied in how they understood and integrated quantitative risk information about the benefits and harms of screening into their decision making; some read it carefully and used it to justify their screening decision, whereas others dismissed it because they were sceptical of it or lacked confidence in their own numeracy ability. Participants’ prior knowledge and beliefs about screening influenced how they made sense of the information.Discussion and conclusions  Participants valued information that offered them a choice in a non‐directive way, but were concerned that it would deter people from screening. Healthcare providers need to be aware that people respond to screening information in diverse ways involving a range of literacy skills and cognitive processes.

  April 19, 2012   doi: 10.1111/j.1369-7625.2012.00780.x   open full text
• Dying with motor neurone disease, what can we learn from family caregivers?
  Robin A. Ray, Janice Brown, Annette F. Street.
  Health Expectations. April 19, 2012
  Background  Increasingly, people with neurodegenerative illness are cared for at home until close to death. Yet, discussing the reality of dying remains a social taboo.Objective  To examine the ways, family caregivers of people living with motor neurone disease (MND) experienced the dying of their relative and to identify how health practitioners can better prepare families for end‐of‐life care.Design  Secondary analysis was undertaken on data sets generated from two longitudinal qualitative studies employing similar data collection and analysis methods. Combining data sets increased participant numbers in a low incidence disease group.Setting and participants  Primary studies were undertaken with family caregivers in England and Australia. Interview and observational data were collected mostly in home. Participants who discussed dying and death formed the sample for secondary analysis.Results  Combined data revealed four major themes: planning for end of life, unexpected dying, dignity in the dying body and positive end to MND. Despite short survival predictions, discussions among family members about dying were often sporadic and linked to loss of hope. Effective planning for death assisted caregivers to manage the final degenerative processes of dying. When plans were not effectively communicated or enacted, capacity to preserve personhood was reduced.Discussion and Conclusion  Returning death and dying to social discourse will raise the level of community awareness and normalize conversations about end‐of‐life care. Strategies for on‐going, effective communication that facilitates advance care planning among patients, their families and practitioners are essential to improve dying and death for people with MND and their family caregivers.

  April 19, 2012   doi: 10.1111/j.1369-7625.2012.00773.x   open full text
• Contributing to research via biobanks: what it means to cancer patients.
  Isabelle Pellegrini, Christian Chabannon, Julien Mancini, Frederic Viret, Norbert Vey, Claire Julian‐Reynier.
  Health Expectations. April 19, 2012
  Context and objective  Biobanks have become strategic resources for biomedical and genetic research. The aim of the present empirical qualitative study was to investigate how patients with cancer perceive and experience the process of donation to biobanks, focussing on the subjective meanings associated with their decisions when they are asked in a routine context to agree to their own biological specimens being used for research projects.Design  A qualitative study, using semi‐structured interviews to explore in depth the reasons why patients with cancer agree to participating in biobanking.Participants  Nineteen patients (aged 28–82 years) being treated for colorectal cancer or leukaemia at a French cancer centre participated in this study.Results  Contributing to biobanks was experienced here as a rewarding and empowering individual experience because of the psychological issues involved, such as feelings of hope associated with research, because it makes the relationship with researchers and clinicians less asymmetrical, revalorization of otherwise ‘wasted’ tissue, and also as an act of solidarity and reciprocity, which makes patients part of a community.Discussion and conclusion  Patients seem to regard contributing to biobanks as an act of benevolence, which they are motivated to perform because of societal welfare considerations as well as the hope of subjective benefits. Knowledge about the patients’ perspective and of the psychological rewards associated with tumour donation should be taken into account by physicians and caregivers discussing this topic with their patients.

  April 19, 2012   doi: 10.1111/j.1369-7625.2012.00781.x   open full text
• Assessing patients’ involvement in decision making during the nutritional consultation with a dietitian.
  Hugues Vaillancourt, France Légaré, Annie Lapointe, Sarah‐Maude Deschênes, Sophie Desroches.
  Health Expectations. April 19, 2012
  Background  Shared decision making (SDM) represents an interesting approach to optimize the impact of dietary treatment, but there is no evidence that SDM is commonly integrated into diet‐related health care.Objective  To assess the extent to which dietitians involve patients in decisions about dietary treatment.Methods  We audiotaped dietitians conducting nutritional consultations with their patients, and we transcribed the tapes verbatim. Three trained raters independently evaluated the content of the nutritional consultations using a coding frame based on the 12 items of the French‐language version of the OPTION scale, a validated and reliable third‐observer instrument designed to assess patients’ involvement by examining specific health professionals’ behaviours. Coding was facilitated by the qualitative research software NVivo 8. We assessed internal consistency with Cronbach’s alpha and inter‐rater reliability with the intraclass correlation coefficient (ICC).Results  Of the 40 dietitians eligible to participate in the study, 19 took part. We recruited one patient per participating dietitian. The overall mean OPTION score was 29 ± 8% [range, 0% (no patient involvement in the decision] to 100% [high patient involvement)]. The mean duration of consultations was 50 ± 26 min. The OPTION score was positively correlated with the duration of the consultation (r = 0.65, P < 0.01). Internal consistency and inter‐rater reliability were both good (Cronbach’s alpha = 0.72; ICC = 0.65).Conclusion  This study is the first to use a framework based on the OPTION scale to report on dietitians’ involvement of patients in decisions about patients’ dietary treatment. The results suggest that involvement is suboptimal. Interventions to increase patients’ involvement in diet‐related decision making are indicated.

  April 19, 2012   doi: 10.1111/j.1369-7625.2012.00783.x   open full text
• Is advice incompatible with autonomous informed choice? Women’s perceptions of advice in the context of antenatal screening: a qualitative study.
  Shenaz Ahmed, Louise D. Bryant, Zahra Tizro, Darren Shickle.
  Health Expectations. April 19, 2012
  Background  Patient autonomy in antenatal screening is a high priority for policy developers in many countries.Objective  This paper presents women’s understandings of how health professionals should facilitate informed screening choices with an emphasis on their understandings of autonomy and advice.Design, setting and participants  The study was carried out in 2009 in the UK, using a qualitative approach. Ninety‐eight participants of African, British White, Caribbean, Chinese and Pakistani origin had semi‐structured interviews, which were analysed using framework analysis.Results  Four themes were identified during the analysis: ‘Meanings of advice in antenatal screening: the advice continuum’, ‘Recognition of the role of health professionals in decision making’, ‘Understandings of advice in the context of autonomous decision making’ and ‘Reasons given for wanting advice’. Women said they valued advice from health professionals to make decisions about antenatal screening, but their understandings of ‘advice’ ranged from information giving only to direction about screening choices.Conclusion  Many women wanted health professionals to support the process of making informed choices by engaging in discussion and did not see advice as incompatible with making autonomous choices. However, some women wanted direction about whether to have a screening test or not, something which policy and guidelines explicitly prohibit. This may cause an ethical dilemma for health professionals who are required to both support women’s preference for care and adhere to a policy of non‐directiveness. Further clarification is needed on how health professionals should support the process of making informed choices when women ask for clear direction on screening choices.

  April 19, 2012   doi: 10.1111/j.1369-7625.2012.00784.x   open full text
• ‘What ever I do it’s a lost cause.’ The emotional and behavioural experiences of individuals who are ulcer free living with the threat of developing further diabetic foot ulcers: a qualitative interview study.
  Angela M. Beattie, Rona Campbell, Kavita Vedhara.
  Health Expectations. March 20, 2012
  Objective  Individuals who have had one diabetic foot ulcer (DFU) are at high risk for developing further DFUs. This study was designed to examine the emotional and behavioural consequences of living with this heightened risk of re‐ulceration. Participants and setting  Fifteen women and men living in south‐west England were interviewed at home or at the university by an academic psychologist. Design  Interviews were audiotaped and transcribed verbatim. Thematic analysis using the constant comparative method was employed for data analysis. Results  Participants reported having little perceived control in preventing further DFUs. This lack of control was associated with a range of negative emotions including fears and worries about developing further foot ulcers, amputation and guilt for the past neglect. Tensions were present between participants’ beliefs and reported behaviours, that is, what they felt they ought to be doing and what they were actually doing to care for their feet; most engaged in ‘strategic adherence’, that is, conducting a trade‐off between living a normal life and following foot‐care advice. Conclusion  A lack of perceived control appears central to the emotional and behavioural responses of individuals living with the threat of re‐ulceration. We propose that these responses may serve to increase individuals’ risk of re‐ulceration and that these ‘risk factors’ should be considered part of the management of this patient group.

  March 20, 2012   doi: 10.1111/j.1369-7625.2012.00768.x   open full text
• Perceived service quality, perceived value, overall satisfaction and happiness of outlook for long‐term care institution residents.
  Jesun Lin, Chih‐Tung Hsiao, Robert Glen, Jar‐Yuan Pai, Sin‐Huei Zeng.
  Health Expectations. March 20, 2012
  Objective  To investigate the psychometric properties and relationships of perceived service quality, perceived value and overall satisfaction for residents with respect to their long‐term care institutions. Design  The five‐point Likert scale questionnaire administered through facetoface interviews. Setting  Fourteen long‐term care institutions located in central and southern Taiwan stratified according to services and accommodation population. Participants  One hundred and eighty long‐term institutional care residents. Main outcome measures  Perceived service quality (the SERVPERF model), perceived value and overall satisfaction (models based on the literature on perceived value and satisfaction). Results  Student’s t‐test on institutional location shows a significant difference between overall satisfaction for central and southern institution long‐term care recipients. The correlation test revealed that the higher a resident’s level of education, the higher the scores for perceived value. The factor loading results of confirmation factor analysis show acceptable levels of reliability and index‐of‐model fits for perceived service, perceived value and overall satisfaction. In addition, the results suggest that an additional construct, a positive attitude (happiness of outlook) towards long‐term care institutions, is also an important factor in residents’ overall satisfaction. Conclusion  The primary goal of long‐term institutional care policy in Taiwan, as in other countries, is to provide residents with practical, cost‐effective but high‐quality care. On the basis of the results of in‐depth interviews with long‐term institutional care residents, this study suggests long‐term care institutions arrange more family visit days to increase the accessibility and interaction of family and residents and thereby increase the happiness of outlook of the residents.

  March 20, 2012   doi: 10.1111/j.1369-7625.2012.00769.x   open full text
• Does cultural context make a difference to women’s experiences of maternity care? A qualitative study comparing the perspectives of breast‐feeding women of Bangladeshi origin and health practitioners.
  Alison McFadden, Mary J Renfrew, Karl Atkin.
  Health Expectations. March 20, 2012
  Background  Maternity services struggle to provide culturally appropriate care that meets the needs of women from diverse populations. Problems include simplistic understandings of ethnicity and the role of culture in women’s lives, and stereotypes held by health practitioners. Objective  To explore the extent to which cultural context makes a difference to experiences of breast‐feeding support for women of Bangladeshi origin and to consider the implications for the provision of culturally appropriate care. Methods  The study comprised individual interviews with 23 women of Bangladeshi origin and four health service managers, and focus group discussions with 28 health practitioners between February and December 2008. Participants were recruited from four localities in northern England. Results  Women’s rich descriptions of various facets of their identities were in contrast to practitioners’ representations of women of Bangladeshi origin as homogenous. Practitioners did not recognize when the needs of women of Bangladeshi origin were similar to those of the majority white population, or where cultural context made a difference to their experiences of breast‐feeding and breast‐feeding support. Some practitioners used cultural stereotypes which, combined with organizational constraints, resulted in services not meeting many of the women’s needs. Conclusions  Implications for education, policy and practice include the need for training of health practitioners to work with diverse populations, implementing evidence‐based practice and providing an organizational context which supports practitioners to respond to diversity without using cultural stereotypes.

  March 20, 2012   doi: 10.1111/j.1369-7625.2012.00770.x   open full text
• Consumer involvement in systematic reviews of comparative effectiveness research.
  Julia Kreis, Milo A. Puhan, Holger J. Schünemann, Kay Dickersin.
  Health Expectations. March 06, 2012
  Background  The Institute of Medicine recently recommended that comparative effectiveness research (CER) should involve input from consumers. While systematic reviews are a major component of CER, little is known about consumer involvement.Objective  To explore current approaches to involving consumers in US‐based and key international organizations and groups conducting or commissioning systematic reviews (‘organizations’).Design  In‐depth, semi‐structured interviews with key informants and review of organizations’ websites.Setting and participants  Seventeen highly regarded US‐based and international (Cochrane Collaboration, Campbell Collaboration) organizations.Results  Organizations that usually involve consumers (seven of 17 in our sample) involve them at a programmatic level in the organization or in individual reviews through one‐time consultation or on‐going collaboration. For example, consumers may suggest topics, provide input on the key questions of the review, provide comments on draft protocols and reports, serve as co‐authors or on an advisory group. Organizations involve different types of consumers (individual patients, consumer advocates, families and caregivers), recruiting them mainly through patient organizations and consumer networks. Some offer training in research methods, and one developed training for researchers on how to involve consumers. Little formal evaluation of the effects of consumer involvement is being carried out.Conclusions  Consumers are currently involved in systematic reviews in a variety of ways and for various reasons. Assessing which approaches are most effective in achieving different aims of consumer involvement is now required to inform future recommendations on consumer involvement in CER.

  March 06, 2012   doi: 10.1111/j.1369-7625.2011.00722.x   open full text
• Mutual powerlessness in client participation practices in mental health care.
  Tineke Broer, Anna P. Nieboer, Roland Bal.
  Health Expectations. March 06, 2012
  Background  Client participation has become a dominant policy goal in many countries including the Netherlands and is a topic much discussed in the literature. The success of client participation is usually measured in terms of the extent to which clients have a say in the participation process. Many articles have concluded that client participation is limited; professionals often still control the participation process and outcomes.Objective  The objective of this study is to gain insight into (i) the practice of client participation within a quality improvement collaborative in mental health care and (ii) the consequences of a Foucauldian conceptualization of power in analysing practices of client participation.Design  We used an ethnographic design consisting of observations of national events and improvement team meetings and interviews with the collaborative’s team members and programme managers.Results  Contrary to many studies on client participation, we found both clients and service providers frequently felt powerless in its practice. Professionals and clients alike struggled with the contributions clients could make to the improvement processes and what functions they should fulfil. Moreover, professionals did not want to exert power upon clients, but ironically just for that reason sometimes struggled with shaping practices of client participation. This mutual powerlessness (partly) disappeared when clients helped to determine and execute specific improvement actions instead of participating in improvement teams.Conclusion  Recognizing that power is inescapable might allow for a more substantive discussion concerning the consequences that power arrangements produce, rather than looking at who is exerting how much power.

  March 06, 2012   doi: 10.1111/j.1369-7625.2011.00748.x   open full text
• Individual budgets for people with incontinence: results from a ‘shopping’ experiment within the British National Health Service.
  Mandy J. Fader, Alan M. Cottenden, Heather M. Gage, Peter Williams, Katharine Getliffe, Sinead Clarke‐O’Neill, Katharine M. Jamieson, Nicholas J. Green.
  Health Expectations. March 06, 2012
  Background and context  Most people with urinary incontinence are given limited choice when provided with absorbent products through the British National Health Service (NHS), even though the available range is large.Objective  To investigate users’ preferences for four disposable designs (inserts, all‐in‐ones, belted/T‐shaped and pull‐ups) and towelling washable/reusable products, day and night.Design  Shopping experiment.Setting and participants  Community‐dwelling women and men in England with moderate‐to‐heavy urinary incontinence recruited to a larger trial.Intervention  Participants tested each design and selected products they would prefer with a range of different budgets.Main outcome measures  Design preferences (rankings); ‘purchasing’ decisions from designated budgets.Results  Eighty‐five participants (49 men) tested products, 75 completed the shopping experiment. Inserts, most frequently supplied by the NHS, were ranked second to pull‐ups by women and lowest by men. When faced with budget constraints, up to 40% of participants opted to ‘mix‐and‐match’ designs. Over 15 different combinations of products were selected by participants in the shopping experiment. Most (91%) stated a willingness to ‘top‐up’ assigned budgets from income to secure preferred designs.Discussion  Participants displayed diverse preferences. Enabling user choice of absorbent product design through individual budgets could improve satisfaction of consumers and efficiency of allocation of limited NHS resources.Conclusion  Recent policy for the NHS seeks to provide consumers with more control in their care. Extension of the concept of individual budgets to continence supplies could be feasible and beneficial for patients and provide better value‐for‐money within the NHS. Further research is warranted.

  March 06, 2012   doi: 10.1111/j.1369-7625.2011.00750.x   open full text
• Fair reckoning: a qualitative investigation of responses to an economic health resource allocation survey.
  Mita Giacomini, Jeremiah Hurley, Deirdre DeJean.
  Health Expectations. March 06, 2012
  Objective  To investigate how participants in an economic resource allocation survey construct notions of fairness.Design  Qualitative interview study guided by interpretive grounded theory methods.Setting and participants  Qualitative interviews were conducted with volunteer university‐ (n = 39) and community‐based (n = 7) economic survey participants.Intervention or main variables studied  We explored how participants constructed meanings to guide or explain fair survey choices, focusing on rationales, imagery and additional desired information not provided in the survey scenarios.Main outcome measures  Data were transcribed and coded into qualitative categories. Analysis iterated with data collection iterated through three waves of interviews.Results  Participants compared the survey dilemmas to domains outside the health system. Most compared them with other micro‐level, inter‐personal sharing tasks. Participants raised several fairness‐relevant factors beyond need or capacity to benefit. These included age, weight, poverty, access to other options and personal responsibility for illness; illness duration, curability or seriousness; life expectancy; possibilities for sharing; awareness of other’s needs; and ability to explain allocations to those affected. They also articulated a fairness principle little considered by equity theories: that everybody must get something and nobody should get nothing.Discussion and conclusions  Lay criteria for judging fairness are myriad. Simple scenarios may be used to investigate lay commitments to abstract principles. Although principles are the focus of analysis and inference, participants may solve simplified dilemmas by imputing extraneous features to the problem or applying unanticipated principles. These possibilities should be taken into account in the design of resource allocation surveys eliciting the views of the public.

  March 06, 2012   doi: 10.1111/j.1369-7625.2011.00751.x   open full text
• Beyond needs and expectations: identifying the barriers and facilitators to written medicine information provision and use in Australia.
  Kim K. Hamrosi, Parisa Aslani, David K. Raynor.
  Health Expectations. March 06, 2012
  Purpose  This study aimed to explore peoples’ needs and expectations of written medicines information (WMI), and to determine the barriers and facilitators experienced or perceived in the context of WMI provision and use.Methods  We conducted eight focus groups with 62 participants over 6 weeks in late 2008 in New South Wales, Australia. Using a semi‐structured topic schedule and examples of WMI from Australia and other English‐speaking countries as a guide, we explored themes relevant to WMI, including participant experiences, attitudes, beliefs and expectations.Findings  Our findings suggest less than half had previously received WMI, with many unaware of its availability. Many, but not all, wanted WMI to supplement the spoken information they received but not to replace it, and it was predominantly used to facilitate informed choice, ascertain medicine suitability and review instructions. The current leaflets were considered technical and long, and a summary leaflet in addition to comprehensive information was favoured. Accurate side‐effect information was the most important element that participants desired. The most common barriers to effective WMI use were time constraints and patient confidence, with participants citing empowerment, time and health‐care professional (HCP)–patient relationships as important facilitators.Conclusion  The findings provide insight and understanding of peoples needs and expectations, and clarify issues associated with use and non‐use of WMI. Challenges include addressing the barriers, especially of time and HCP attitudes to drive changes to workplace practices, and learning from the facilitating factors to encourage awareness and accessibility to WMI as a tool to empower patients.

  March 06, 2012   doi: 10.1111/j.1369-7625.2011.00753.x   open full text
• Symptom recognition of heart attack and stroke in nine European countries: a representative survey.
  Jutta Mata, Ronald Frank, Gerd Gigerenzer.
  Health Expectations. March 06, 2012
  Background  Cardiovascular diseases are the number one cause of death and a source of chronic disability. Objectives  To assess recognition of and reaction to symptoms of heart attack and stroke, and how recognition is related to the frequency of consulting physicians and other information sources. Design  Face‐to‐face computer‐assisted personal interviews. Participants  Representative sample of 10 228 persons in Austria, France, Germany, Italy, the Netherlands, Poland, Russia, Spain and UK, aged 14–98. Main Outcome Variables  Recognition of heart attack and stroke symptoms and proper reaction to symptoms. Results  Chest pain was the only heart attack symptom recognized by more than 50% of participants. Eight percent knew no symptoms. Of 14 stroke symptoms, none was recognized by more than 50% of participants; 19% could not identify any symptom. For both heart attack and stroke, Germans and Austrians recognized the largest number of symptoms. Persons in Italy, Poland, Russia and Spain knew only about half as many symptoms as in Germany or Austria. Only 51% of Europeans would call an ambulance when someone suffers a stroke, the fewest (33 and 34%) in Germany and Austria. In most countries, people who consulted their physician more frequently had no better recognition of heart attack or stroke symptoms. Conclusions  The majority of persons in nine European countries recognize few heart attack and stroke symptoms; many do not know how to react. This low level of knowledge constitutes a major health risk and likely leads to delay in treatment, contributing to the high mortality and morbidity from these diseases.

  March 06, 2012   doi: 10.1111/j.1369-7625.2011.00764.x   open full text
• A cross‐sectional assessment of health‐related quality of life (HRQoL) among hypertensive patients in Pakistan.
  Fahad Saleem, Mohamed Azmi Hassali, Asrul Akmal Shafie.
  Health Expectations. March 06, 2012
  Objective  To describe the health‐related quality of life (HRQoL) profile of hypertensive population in Pakistan. Methods  A cross‐sectional descriptive study was undertaken with a cohort of 385 hypertensive patients attending two public hospitals in Quetta city, Pakistan. The EuroQoL EQ‐5D scale was used for the assessment of HRQoL. EQ‐5D is a standardized instrument for use as a measure of health outcome and is used in the clinical and economic evaluation of health care as well as population health surveys. The HRQoL was scored using values derived from the UK general population survey. P ≤ 0.05 was taken as significant. Results  Two hundred and sixty‐five (68.85%) respondents were men with 3.01 ± 0.939 years of history of hypertension. Majority (n = 186, 48.3%) were categorized in age group of 28–37 years with mean age of 39.02 ± 6.596. Education, income and locality had significant relation with HRQoL score. HRQoL was measured poor in our study patients (0.4674 ± 0.2844). Conclusion  Hypertension has an adverse effect on patients’ well‐being and HRQoL. Results from this study could be useful in clinical practice, particularly in early treatment of hypertension, at point where improving HRQoL is still possible.

  March 06, 2012   doi: 10.1111/j.1369-7625.2012.00765.x   open full text
• What matters to users of services? An explorative study to promote shared decision making in health care.
  Kath Padgett, Christine Rhodes, Maureen Lumb, Penny Morris, Sue Sherwin, Jools Symons, Joannie Tate, Ken Townend.
  Health Expectations. March 06, 2012
  Background  Involving service users and carers in decisions about their health care is a key feature of health‐care practice. Professional health and social care students need to develop skills and attributes to best enable this to happen. Aims  The aims were to explore service user and carer perceptions of behaviours, attributes and context required to enable shared decision making; to compare these perceptions to those of students and academic staff with a view to utilizing the findings to inform the development of student assessment tools. Methods  A mixed methods approach was used including action learning groups (ALG) and an iterative process alongside a modified Delphi survey. Participants  The ALGs were from an existing service user and carer network. The survey was sent to sixty students, sixty academics and 30 service users from 16 different professional disciplines, spanning four Universities in England. Results  The collaborative enquiry process and survey identified general agreement that being open and honest, listening, showing respect, giving time and being up to date were important. The qualitative findings identified that individual interpretation was a key factor. An unexpected result was an insight into possible insecurities of students. Conclusions  The findings indicate that distilling rich qualitative information into a format for student assessment tools could be problematic as the individual context could be lost, it is therefore proposed that the information could be better used as a learning rather than assessment tool. Several of those involved identified how they valued the process and found it beneficial.

  March 06, 2012   doi: 10.1111/j.1369-7625.2012.00767.x   open full text
• The Swiss Health Literacy Survey: development and psychometric properties of a multidimensional instrument to assess competencies for health.
  Jen Wang, Brett D. Thombs, Margareta R. Schmid.
  Health Expectations. March 06, 2012
  Background  Growing recognition of the role of citizens and patients in health and health care has placed a spotlight on health literacy and patient education. Objective  To identify specific competencies for health in definitions of health literacy and patient‐centred concepts and empirically test their dimensionality in the general population. Methods  A thorough review of the literature on health literacy, self‐management, patient empowerment, patient education and shared decision making revealed considerable conceptual overlap as competencies for health and identified a corpus of 30 generic competencies for health. A questionnaire containing 127 items covering the 30 competencies was fielded as a telephone interview in German, French and Italian among 1255 respondents randomly selected from the resident population in Switzerland. Findings  Analyses with the software MPlus to model items with mixed response categories showed that the items do not load onto a single factor. Multifactorial models with good fit could be erected for each of five dimensions defined a priori and their corresponding competencies: information and knowledge (four competencies, 17 items), general cognitive skills (four competencies, 17 items), social roles (two competencies, seven items), medical management (four competencies, 27 items) and healthy lifestyle (two competencies, six items). Multiple indicators and multiple causes models identified problematic differential item functioning for only six items belonging to two competencies. Conclusions  The psychometric analyses of this instrument support broader conceptualization of health literacy not as a single competence but rather as a package of competencies for health.

  March 06, 2012   doi: 10.1111/j.1369-7625.2012.00766.x   open full text
• Communicating health decisions: an analysis of messages posted to online prostate cancer forums.
  Elizabeth Sillence, Phoenix K. H. Mo.
  Health Expectations. February 02, 2012
  Background  Experiential websites such as message forums and blogs allow Prostate Cancer (PCa) patients to communicate their health decisions to peers. The issues surrounding this form of indirect involvement in public health are little understood.Objective  This paper explores the types of decision‐making processes that people are exposed to on PCa online message boards. The kinds of treatment choices patients are making and the reports of their decision‐making processes to peers through an online environment are examined in the context of the Heuristic Systematic Model.Method  Messages about treatment decision making were collected from four PCa websites. In total, 137 messages were selected from blogs and online forums and their decision‐making processes coded.Results  Men looking online for information about treatment options for PCa are exposed to a range of decision‐making processes. Just under half (49.6%) of the messages reported non‐systematic decision processes, with deferral to the doctor and proof of cancer removal being the most common. For systematic processing (36.5%), messages most commonly considered treatment outcomes and side‐effects. Processes did not vary between the blogs and online forums.Discussion and conclusion  Compared to previous studies far fewer messages reported non‐systematic decision processes and only a small number of messages reflected lay beliefs or misbeliefs about PCa treatment. Implications for men and their clinicians of seeking health information online are discussed.

  February 02, 2012   doi: 10.1111/j.1369-7625.2011.00745.x   open full text
• Service quality perceptions in primary health care centres in Greece.
  Vicky Papanikolaou, Sotiris Zygiaris.
  Health Expectations. February 02, 2012
  Context  The paper refers to the increased competition between health care providers and the need for patient‐centred services in Greece. Using service quality methodology, this paper investigates service quality perceptions of patients in Greek public primary health centres.Objective  To test the internal consistency and applicability of SERVQUAL in primary health care centres in Greece.Strategy  SERVQUAL was used to examine whether patients have different expectations from health care providers and whether different groups of patients may consider some dimensions of care more important than others.Results  The analysis showed that there were gaps in all dimensions measured by SERVQUAL. The largest gap was detected in empathy. Further analysis showed that there were also differences depending on gender, age and education levels. A separate analysis of expectations and perceptions revealed that this gap was because of differences in patients’ perceptions rather than expectations.Discussion and conclusions  This paper raises a number of issues that concern the applicability of SERVQUAL in health care services and could enhance current discussions about SERVQUAL improvement. Quality of health care needs to be redefined by encompassing multiple dimensions. Beyond a simple expectations–perceptions gap, people may hold different understandings of health care that, in turn, influence their perception of the quality of services.

  February 02, 2012   doi: 10.1111/j.1369-7625.2011.00747.x   open full text
• Assessing the impact of deliberative processes on the views of participants: is it ‘in one ear and out the other’?
  Tania Stafinski, Devidas Menon, Yutaka Yasui.
  Health Expectations. February 02, 2012
  Background  Interest in citizens’ juries for eliciting the views of the public to inform coverage decisions on new health technologies has grown. However, evaluative information, particularly regarding their short‐ and/or longer‐term impact on participants’ views is limited. As citizens’ juries can be resource intensive, such information is required to make ‘evidence‐based’ decisions about their use.Objectives  To assess the impact of citizens’ juries on participants’ preferences for the distribution of health care across populations over time.Setting and participants  Two citizens’ juries, involving a different representative sample of the public, were held. Participants completed identical questionnaires before (T1), directly after (T2) and 6 weeks following the jury (T3). Questionnaires comprised rating, ranking and choice‐based questions related to four characteristics of competing patient populations (age, current health, life expectancy without treatment and health gain resulting from an intervention). Semi‐structured telephone interviews were also conducted to explore the impact of the jury on participants’ distributive preferences. Changes in responses to the self‐administered survey over the three time points were assessed quantitatively, while interview questions were analysed using qualitative techniques.Results  No significant differences in responses to rating questions were observed. Pre/post‐jury changes in the rankings of two factors were statistically significant in one of the juries. However, in both juries, T1–T2 changes in responses to several of the choice‐based questions reached statistical significance. The number was lower between T2 and T3, suggesting that jurors retained their views. According to findings from the interviews, jurors’ views changed or were clarified through participation in the jury.Conclusions  There appears to be evidence suggesting that the views of individuals who participate in citizens’ juries change as a result of the experience, and those ‘informed’ views are sustained.

  February 02, 2012   doi: 10.1111/j.1369-7625.2011.00749.x   open full text
• Making choices about medical interventions: the experience of disabled young people with degenerative conditions.
  Wendy A. Mitchell.
  Health Expectations. February 02, 2012
  Background  Current western policy, including the UK, advocates choice for service users and their families, taking greater control and being more involved in decision making. However, children’s role in health decision making, especially from their own perspective, has received less research attention compared to doctors and parents’ perspectives.Objective  To explore the perspective and experiences of disabled young people with degenerative conditions as they face significant medical interventions and engage in decision‐making processes.Design and methods  Findings from a longitudinal qualitative study of 10 young people (13–22 years) with degenerative conditions are reported. Individual semi‐structured interviews were conducted with participants over 3 years (2007–2010); the paper reports data from all three interview rounds. Interviews focused on medical intervention choices the young people identified as significant.Results  Although the young people in this study felt involved in the medical intervention choices discussed, findings demonstrate a complex and diverse picture of decision making. Results highlighted different decisional roles adopted by the young people, the importance of information heuristics and working with other people whilst engaging in complex processes weighing up different decisional factors.Discussion  Young people’s experiences demonstrate the importance of moving beyond viewing health choices as technical or rational decisions. How each young person framed their decision was important. Recognizing this diversity and the importance of emerging themes, such as living a normal life, independence, fear of decisions viewed as ‘irreversible’ and the role of parents and peers in decision making highlights that, there are clear practice implications including, active practitioner listening, sensitivity and continued holistic family working.

  February 02, 2012   doi: 10.1111/j.1369-7625.2011.00752.x   open full text
• Strategies for the management of intermittent allergic rhinitis: an Australian study.
  Lorraine Smith, Lin Brown, Bandana Saini, Celina Seeto.
  Health Expectations. February 01, 2012
  Objective  Allergic rhinitis is increasing globally despite treatment focussed on pharmacotherapy. This study aimed to (i) examine the range and proportion of symptoms and triggers experienced by patients with intermittent allergic rhinitis (IAR); (ii) conduct a qualitative analysis of strategies devised to control symptoms and triggers; and (iii) measure medication adherence.Methods  A qualitative and observational study of data drawn from a randomized controlled trial on patients with IAR. Strategies collaboratively devised by participants and pharmacist staff to minimize symptoms and triggers were analysed thematically. In the 10‐day observational study, the participants recorded all symptoms and triggers of IAR along with use of medications and these were analysed descriptively.Results  Number of 124 participants recorded 620 symptoms and identified 357 triggers of IAR. To minimize these, 579 strategies were devised in consultation with pharmacy staff. The frequency and type of strategy varied according to whether the goals were aimed at controlling symptoms or triggers. Adherence to a course of antihistamines over the 10‐day trial was self‐reported by participants with 36% indicating full adherence.Conclusion  A large number and range of symptoms and triggers were identified, and individualized strategies were devised to minimize symptoms and triggers. Medication adherence was poor.Practice implications  Patients with IAR can be assisted to identify their symptoms and triggers and develop relevant strategies to manage these. This approach has the potential to facilitate patient self‐manageme\nt of a chronic and incapacitating condition.

  February 01, 2012   doi: 10.1111/j.1369-7625.2011.00746.x   open full text
• Risk factors for patient‐reported medical errors in eleven countries.
  David L. B. Schwappach.
  Health Expectations. February 01, 2012
  Objectives  The aim of this study was to identify common risk factors for patient‐reported medical errors across countries. In country‐level analyses, differences in risks associated with error between health care systems were investigated. The joint effects of risks on error‐reporting probability were modelled for hypothetical patients with different health care utilization patterns. Design  Data from the Commonwealth Fund’s 2010 lnternational Survey of the General Public’s Views of their Health Care System’s Performance in 11 Countries. Setting  Representative population samples of 11 countries were surveyed (total sample = 19 738 adults). Utilization of health care, coordination of care problems and reported errors were assessed. Regression analyses were conducted to identify risk factors for patients’ reports of medical, medication and laboratory errors across countries and in country‐specific models. Results  Error was reported by 11.2% of patients but with marked differences between countries (range: 5.4–17.0%). Poor coordination of care was reported by 27.3%. The risk of patient‐reported error was determined mainly by health care utilization: Emergency care (OR = 1.7, P < 0.001), hospitalization (OR = 1.6, P < 0.001) and the number of providers involved (OR three doctors = 2.0, P < 0.001) are important predictors. Poor care coordination is the single most important risk factor for reporting error (OR = 3.9, P < 0.001). Country‐specific models yielded common and country‐specific predictors for self‐reported error. For high utilizers of care, the probability that errors are reported rises up to P = 0.68. Conclusions  Safety remains a global challenge affecting many patients throughout the world. Large variability exists in the frequency of patient‐reported error across countries. To learn from others’ errors is not only essential within countries but may also prove a promising strategy internationally.

  February 01, 2012   doi: 10.1111/j.1369-7625.2011.00755.x   open full text
• Australian mental health consumers’ priorities for research: Qualitative findings from the SCOPE for Research project.
  Michelle A. Banfield, Lisa J. Barney, Kathleen M. Griffiths, Helen M. Christensen.
  Health Expectations. January 04, 2012
  Background  There is growing acceptance of the importance of the consumer viewpoint in mental health research. Previous studies have identified differences in research priorities between researchers and mental health consumers in Australia defined broadly. However, little is known about the research priorities of consumers with specific mental health conditions. Objective  The aim of this study was to explore Australian mental health consumers’ priorities for depression and bipolar disorder research. Design  Focus groups with consumers and individual telephone interviews with consumer advocates. Participants were asked to discuss the topics they believed were priorities for depression or bipolar disorder research. Transcripts were thematically analysed using NVivo 7. Setting and Participants  Ten people with depression and 19 with bipolar disorder participated in face‐to‐face focus groups held in three Australian capital cities. Five participants with each disorder participated in online focus groups. Five Australian consumer advocates with experience of depression and six with experience of bipolar disorder were individually interviewed by telephone. Results  Participants raised a broad variety of topics for research. The most salient themes included the need for research on medication, and lifestyle and psychosocial influences on depression and bipolar disorder. Conclusions  Participants’ priorities reflect an interest in a holistic approach to mental health research that examines the influences of everyday life and psychosocial influences both on the development and on the management of these disorders. Their focus was on research that explores individualized care and the active role that consumers can play in their own care and recovery.

  January 04, 2012   doi: 10.1111/j.1369-7625.2011.00763.x   open full text
• Empowerment, patient centred care and self‐management.
  Mariastella Pulvirenti, John McMillan, Sharon Lawn.
  Health Expectations. January 02, 2012
  Background  Patient or person centred care is widely accepted as the philosophy and practice that underpins quality care. An examination of the Australian National Chronic Disease Strategy and literature in the field highlights assumptions about the self‐manager as patient and a focus on clinical settings. Objective and Conclusion  This paper considers patient or person centred care in the light of empowerment as it is understood in the health promotion charters first established in Alma Ata in 1977. We argue that patient or person centred care can be reconfigured within a social justice and rights framework and that doing so supports the creation of conditions for well‐being in the broader context, one that impacts strongly on individuals. These arguments have broader implications for the practice of patient centred care as it occurs between patient and health professional and for creating shared responsibility for management of the self. It also has implications for those who manage their health outside of the health sector.

  January 02, 2012   doi: 10.1111/j.1369-7625.2011.00757.x   open full text
• Humour in health‐care interactions: a risk worth taking.
  May McCreaddie, Sheila Payne.
  Health Expectations. January 02, 2012
  Background  Humour is a complex, dynamic phenomenon that mainly occurs in social situations between two or more people. Most humour research reviews rehearsed as opposed to spontaneous humour and rarely review the patients’ perspective. Aim  We explore patients’ perspectives on the use of humour in health care. We discuss the asymmetrical and divergent humour use between patients and clinical nurse specialists and posit nurses’ approaches to risk as a contributing factor. Design  A constructivist grounded theory collated researcher‐provoked (interviews, observation, field notes, pre‐and post‐interaction audio diaries) and non‐researcher‐provoked data (naturally occurring interactions) over 18 months. This paper is based upon four patient focus groups. A constant comparison approach to data collection and analyses was applied using interpretative and illustrative frameworks that balanced what was ‘known’ and ‘unknown’ about humour. Setting and participants  Patients were recruited from four patient–peer groups. Three audio‐taped (n = 20) and one observed focus group interactions (n = 12) were undertaken at the groups’ regular meeting places. Results  Patients hold a broad appreciation of humour and recognize it as being evident in subtle and nuanced forms. Patients wish health‐care staff to initiate and reciprocate humour. Conclusion  A chasm exists between what patients apparently want with regard to humour use in health‐care interactions and what actually transpires. Initiating humour involves risk, and risk‐taking requires a degree of self‐esteem and confidence. Nurses are, arguably, risk‐averse and have low self‐esteem. Future research could review confidence and self‐esteem markers with observed humour use in nurses and their interactions across a range of specialities.

  January 02, 2012   doi: 10.1111/j.1369-7625.2011.00758.x   open full text
• Structural social support predicts functional social support in an online weight loss programme.
  Kevin O. Hwang, Jason M. Etchegaray, Christopher N. Sciamanna, Elmer V. Bernstam, Eric J. Thomas.
  Health Expectations. January 02, 2012
  Background  Online weight loss programmes allow members to use social media tools to give and receive social support for weight loss. However, little is known about the relationship between the use of social media tools and the perception of specific types of support. Objective  To test the hypothesis that the frequency of using social media tools (structural support) is directly related to perceptions of Encouragement, Information and Shared Experiences support (functional support). Design  Online survey. Participants  Members of an online weight loss programme. Methods  The outcome was the perception of Encouragement (motivation, congratulations), Information (advice, tips) and Shared Experiences (belonging to a group) social support. The predictor was a social media scale based on the frequency of using forums and blogs within the online weight loss programme (alpha = 0.91). The relationship between predictor and outcomes was evaluated with structural equation modelling (SEM) and logistic regression, adjusted for sociodemographic characteristics, BMI and duration of website membership. Results  The 187 participants were mostly female (95%) and white (91%), with mean (SD) age 37 (12) years and mean (SD) BMI 31 (8). SEM produced a model in which social media use predicted Encouragement support, but not Information or Shared Experiences support. Participants who used the social media tools at least weekly were almost five times as likely to experience Encouragement support compared to those who used the features less frequently [adjusted OR 4.8 (95% CI 1.8–12.8)]. Conclusions  Using the social media tools of an online weight loss programme at least once per week is strongly associated with receiving Encouragement for weight loss behaviours.

  January 02, 2012   doi: 10.1111/j.1369-7625.2011.00759.x   open full text
• Barriers and facilitators to routine distribution of patient decision support interventions: a preliminary study in community‐based primary care settings.
  Visith Uy, Suepattra G. May, Caroline Tietbohl, Dominick L. Frosch.
  Health Expectations. January 02, 2012
  Background  A growing body of literature documents the value of decision support interventions (DESIs) in facilitating patient participation in preference sensitive decision making, but little is known about their implementation in routine care. Objective  This study explored barriers and facilitators to prescribing DESIs in primary care. Setting and participants  Four community‐based primary care practices across Los Angeles County serving diverse low and middle income populations participated. Design  The first phase focused on implementing DESI prescribing into routine care. Weekly academic detailing visits served to identify barriers to DESI prescribing, generate ethnographic field notes and record DESI prescriptions. The second phase explored the impact of a financial incentive on DESI prescribing. At the project’s conclusion, each physician completed an in‐depth interview. Results  The four practices prescribed an average of 6.5 DESIs a month (range 3.6–9.2) during Phase I. The financial incentive increased DESI prescribing by 71% to 11.1 per month (range 3.5–21.4). The estimated percentages of patients who viewed the DESI were 37.9 and 43.9% during Phases I and II, respectively. Qualitative data suggest that physician buy‐in with the project goal was crucial to DESI distribution success. Competing demands and time pressures were persistent barriers. The effects of the financial incentive were mixed. Conclusions  This study confirmed the importance of physician engagement when implementing DESIs and found mixed effects for providing financial incentives. The relatively low rate of DESI viewing suggests further research on increasing patient uptake of these interventions in routine practice is necessary.

  January 02, 2012   doi: 10.1111/j.1369-7625.2011.00760.x   open full text
• Patients’ attitudes towards patient involvement in safety interventions: results of two exploratory studies.
  Rachel E. Davis, Nick Sevdalis, Anna Pinto, Ara Darzi, Charles A. Vincent.
  Health Expectations. December 12, 2011
  Background  In recent years, patient‐focused interventions have been introduced aimed at increasing patient involvement in safety‐related behaviours. However, patients’ attitudes towards these interventions and comfort in participating in the recommended behaviours remain largely unexplored.Objective  To evaluate patients’ attitudes towards a video and leaflet aimed at encouraging patient involvement in safety‐related behaviours.Design  Two exploratory studies employing a within‐subjects mixed‐methods design.Setting  Six hospital wards on an inner‐city London teaching hospital.Participants  Medical and surgical inpatients: 80 patients in study 1 (mean age 55; 69% men) and 80 patients in study 2 (mean age 52; 60% men).Intervention  Patients watched the PINK patient safety video (study 1) or read the National Patient Safety Agency’s ‘Please Ask’ about staying in hospital leaflet (study 2).Main outcome measures  Perceived comfort in participating in safety‐related behaviours; attitudes towards the video or leaflet.Results  Both video and leaflet increased patients’ perceived comfort in engaging in some (but not all) safety‐related behaviours (P < 0.05). In both studies, the majority of patients questioned whether the intervention could help to reduce medical errors in health care. Suggestions on how the video/leaflet could be improved mainly related to content and layout.Conclusion  Video and leaflet could be effective at encouraging patient involvement in some safety‐related behaviours. Further in‐depth research on patients’ attitudes towards different educational materials is required to help inform future policies and interventions in this very important but under‐researched area.

  December 12, 2011   doi: 10.1111/j.1369-7625.2011.00725.x   open full text
• Translating policy into practice: a case study in the secondary prevention of coronary heart disease.
  Lindsay Prior, Joanne Wilson, Michael Donnelly, Andrew W. Murphy, Susan M. Smith, Mary Byrne, Molly Byrne, Margaret E. Cupples.
  Health Expectations. December 12, 2011
  Background  This paper focuses on the relationships between health ‘policy’ as it is embodied in official documentation, and health ‘practice’ as reported and reflected on in the talk of policy‐makers, health professionals and patients. The specific context for the study involves a comparison of policies relating to the secondary prevention of coronary heart disease (CHD) in the two jurisdictions of Ireland – involving as they do a predominantly state funded (National Health Service) system in the north and a mixed health‐care economy in the south. The key question is to determine how the detail of health policy as contained in policy documents connects to and gets translated into practice and action.Methods  The data sources for the study include relevant health‐care policy documents (N = 5) and progress reports (N = 6) in the two Irish jurisdictions, and semi‐structured interviews with a range of policy‐makers (N = 28), practice nurses (14), general practitioners (12) and patients (13) to explore their awareness of the documents’ contents and how they saw the impact of ‘policy’ on primary care practice.Results  The findings suggest that although strategic policy documents can be useful for highlighting and channelling attention to health issues that require concerted action, they have little impact on what either professionals or lay people do.Conclusion  To influence the latter and to encourage a systematic approach to the delivery of health care it seems likely that contractual arrangements – specifying tasks to be undertaken and methods for monitoring and reporting on activity – are required.

  December 12, 2011   doi: 10.1111/j.1369-7625.2011.00754.x   open full text
• Willingness to pay as patient preference to bariatric surgery.
  Cristina Khawali, Marcos B. Ferraz, Maria T. Zanella, Sandra R. G. Ferreira.
  Health Expectations. November 10, 2011
  Background  An obesity epidemic is spreading worldwide. In addition to comorbidities, social and emotional problems contribute to reduce the quality of life (QoL) of obese people. Considering the heterogeneity of outcomes from clinical and surgical approaches, it is recommended that severely obese patients participate in their treatment decisions. This study evaluated preferences of severely obese patients for obesity surgical treatment using the willingness to pay (WTP) and to assess the impact of the presence of some clinical disorders, socioeconomic conditions and QoL on their decisions.Methods  The selected patients were invited to answer the WTP questionnaire using two formats of contingent valuation questions: dichotomous choice (yes/no) and a bidding game. The answers were correlated with clinical features, QoL assessed by the SF‐36 and the Moorehead‐Ardelt Quality of Life Questionnaire II, Brazilian socioeconomic classification, and family and personal incomes.Results  The group of patients who accepted the first bid was older and had higher frequency of sleep apnoea when compared to those who rejected the offer. A significant correlation between the bidding game value and family income was found (r = 0.28; P < 0.02). In the logistic regression model, socioeconomic classification and sleep apnoea were shown to be independently associated with acceptance the bid.Conclusions  Sleep apnoea was the comorbidity that most influenced the acceptance in dichotomous choice for bariatric surgery, probably due to the deleterious effects on daily activities induced by sleep disturbances. Our findings also suggest that the frequency of surgical procedures is below the preference of the obese population in Brazil.

  November 10, 2011   doi: 10.1111/j.1369-7625.2011.00738.x   open full text
• Developing written information on osteoarthritis for patients: facilitating user involvement by exposure to qualitative research.
  Janet Grime, Brian Dudley.
  Health Expectations. November 10, 2011
  Introduction  In developing a guidebook on osteoarthritis (OA), we collaborated with people who have chronic joint pain (users). But to advise, users need to be aware of and sensitive about their own state of knowledge and educationalists argue that adults sometimes lack such awareness. This paper will report on our experience of providing users with findings from qualitative research to increase awareness of their level of knowledge.Method  A summary of the results from qualitative research into people’s experiences of living with chronic pain was sent to individual members of two groups of users. It was then used to structure group meetings held to help identify information needed for the guidebook.Findings  Some users found the summary difficult to read and suggested how to simplify it. Nevertheless, it helped most users to become aware of the experiences and views of others who have OA and thus become more sensitive to their own level of knowledge. It also helped them recall experiences that stimulated practical suggestions for managing joint pain in everyday life and provided a way of gently challenging the views of users when they appeared to assume that their views were widely held. The discussions brought to light gaps in the research literature.Conclusion  We believe this way of involving users by exposing them to qualitative research findings about lay experiences of living with OA effectively facilitated the users’ contributions to the needs of those who have to live with OA, and we believe it has wider applications.

  November 10, 2011   doi: 10.1111/j.1369-7625.2011.00741.x   open full text
• Patient involvement in mental health care: one size does not fit all.
  Else Tambuyzer, Guido Pieters, Chantal Van Audenhove.
  Health Expectations. November 10, 2011
  Background  Involvement of mental health‐care patients in the decision‐making processes is considered to be an ethical requirement. Health‐care systems worldwide are increasingly emphasizing the value of participatory approaches. There is, however, no consensus on the definition of patient involvement. The literature is particularly inconsistent and lacks clarity.Objective  The purpose of this article is to clarify the concept of patient involvement in mental health care (MHC), taking into account its multidimensional nature.Search strategy  We searched the literature in online databases from January 1998 until August 2010 using synonyms of ‘patient involvement’, combined with the terms ‘mental health(care)’.Data synthesis  Based on 45 different descriptions found in the literature, we constructed a definition of patient involvement and we drew up a model identifying its determinants and outcomes.Results  We propose a comprehensive model of patient involvement to be used in MHC. This model can serve as a guide for policy makers and field workers to shape policies to stimulate involvement.Discussion and conclusions  There are three main problems in the literature concerning patient involvement. First, there is a proliferation of conceptualizations of the topic, leading to conceptual vagueness. Furthermore, there is a lack of quantitative data, and some aspects of involvement remain underexposed, such as the involvement of specific target groups and practical ways to shape the involvement processes. Involvement processes should be tailored to the specific target group and context.

  November 10, 2011   doi: 10.1111/j.1369-7625.2011.00743.x   open full text
• What motivates Australian health service users with chronic illness to engage in self‐management behaviour?
  Tanisha Jowsey, Carmen Pearce‐Brown, Kirsty A. Douglas, Laurann Yen.
  Health Expectations. November 10, 2011
  Context  Health policy in Australia emphasizes the role of health service users (HSU) in managing their own care but does not include mechanisms to assist HSUs to do so.Objective  To describe motivation towards or away from self‐management in a diverse group of older Australians with diabetes, chronic heart failure (CHF) or chronic obstructive pulmonary disease (COPD) and suggest policy interventions to increase patient motivation to manage effectively.Design  Content and thematic analyses of in‐depth semi‐structured interviews. Participants were asked to describe their experience of having chronic illness, including experiences with health professionals and health services. Secondary analysis was undertaken to expose descriptions of self‐management behaviours and their corresponding motivational factors.Participants  Health service users with diabetes, COPD and/or CHF (N = 52).Results  Participant descriptions exposed internal and external sources of motivation. Internal motivation was most often framed positively in terms of the desire to optimize health, independence and wellness and negatively in terms of avoiding the loss of those attributes. External motivation commonly arose from interactions with family, carers and health professionals. Different motivators appeared to work simultaneously and interactively in individuals, and some motivators seemed to be both positive and negative drivers.Conclusion  Successful management of chronic illness requires recognition that the driving forces behind motivation are interconnected. In particular, the significance of family as an external source of motivation suggests a need for increased investment in the knowledge and skill building of family members who contribute to care.

  November 10, 2011   doi: 10.1111/j.1369-7625.2011.00744.x   open full text
• Views of patients and general dental practitioners on the organizational aspects of a general dental practice.
  Rutger Sonneveld, Wolter Brands, Ewald Bronkhorst, Gert‐Jan Truin.
  Health Expectations. November 10, 2011
  Objective  To examine the views of patients and general dental practitioners (GDPs) on the organizational aspects of a general dental practice and to see whether their views differ.Background  Health care has increasingly centred on the patient over the last two decades, and the patients’ opinions have been taken more seriously. Although in other health‐care sectors research on organizational aspects has been performed, research in dental care is lacking on this subject.Design  We developed two questionnaires covering 41 organizational aspects of a general dental practice: one for GDPs and one for dental patients. The questionnaires were handed out in dental practices to 5000 patients and sent to 500 GDPs.Results  We describe the results of the organizational aspects mentioned most by 25% of the dental patients. For most aspects, the views of the patients and GDPs differed significantly. However, both respondent groups mentioned the same category the most.Conclusions  The results of this study could be used on a policy level for the development of guidelines and on a practice level for individual GDPs to adjust practice management to the preferences of patients.

  November 10, 2011   doi: 10.1111/j.1369-7625.2011.00737.x   open full text
• The role of perceived benefits and costs in patients’ medical decisions.
  Eleanor Singer, Mick P. Couper, Angela Fagerlin, Floyd J. Fowler, Carrie A. Levin, Peter A. Ubel, John Van Hoewyk, Brian J. Zikmund‐Fisher.
  Health Expectations. November 10, 2011
  Background  Many decisions can be understood in terms of actors’ valuations of benefits and costs. The article investigates whether this is also true of patient medical decision making. It aims to investigate (i) the importance patients attach to various reasons for and against nine medical decisions; (ii) how well the importance attached to benefits and costs predicts action or inaction; and (iii) how such valuations are related to decision confidence.Methods  In a national random digit dial telephone survey of U.S. adults, patients rated the importance of various reasons for and against medical decisions they had made or talked to a health‐care provider about during the past 2 years. Participants were 2575 English‐speaking adults age 40 and older. Data were analysed by means of logistic regressions predicting action/inaction and linear regressions predicting confidence.Results  Aggregating individual reasons into those that may be regarded as benefits and those that may be regarded as costs, and weighting them by their importance to the patient, shows the expected relationship to action. Perceived benefits and costs are also significantly related to the confidence patients report about their decision.Conclusion  The factors patients say are important in their medical decisions reflect a subjective weighing of benefits and costs and predict action/inaction although they do not necessarily indicate that patients are well informed. The greater the difference between the importance attached to benefits and costs, the greater patients’ confidence in their decision.

  November 10, 2011   doi: 10.1111/j.1369-7625.2011.00739.x   open full text
• Associations between technical quality of diabetes care and patient experience.
  Onyebuchi A. Arah, Bastiaan Roset, Diana M. J. Delnoij, Niek S. Klazinga, Karien Stronks.
  Health Expectations. November 08, 2011
  Aims  It has long been held that high‐quality care has both technical and interpersonal aspects. The nature and strength of any association between both aspects remain poorly explored. This study investigated the associations between diabetes patients’ reports of receiving recommended care (as measures of technical quality) and their experience and ratings (as measures of interpersonal care).Methods  Using data from a cross section of 3096 patients with diabetes nested within 24 diabetes‐care‐networks, we conducted multilevel regression analysis of the relationships between nine indicators of receiving care recommended in practice guidelines and: six scales of patient experience and global ratings of general practitioner, nurses, and overall diabetes care.Results  On average, reporting having received recommended care was associated with reporting better patient experience and ratings. The extent and frequencies of these associations varied across the different care processes. Receiving foot examination, physical activity advice, smoking status check, eye examination, and HbA1c testing, but not nutritional advice, urine, cholesterol or blood pressure checks, were statistically associated with better patient experience and global ratings. Those who received HbA1c testing rated their overall care 1.002 points higher (95% confidence interval: 0.726–1.278) on a scale of 0–10 than those who did not.Conclusions  Higher self‐reported technical quality of care in diabetes appears to be frequently but not always associated with better experiences and ratings. It is possible that the former leads to the latter and/or that both share a common cause within providers. Both care aspects do not seem interchangeable during performance assessment.

  November 08, 2011   doi: 10.1111/j.1369-7625.2011.00729.x   open full text
• Assessing the conceptual clarity and evidence base of quality criteria/standards developed for evaluating decision aids.
  Heather McDonald, Cathy Charles, Amiram Gafni.
  Health Expectations. November 03, 2011
  Context  Promoting patient participation in treatment decision making is of increasing interest to researchers, clinicians and policy makers. Decision aids (DAs) are advocated as one way to help achieve this goal. Despite their proliferation, there has been little agreement on criteria or standards for evaluating these tools. To fill this gap, an international collaboration of researchers and others interested in the development, content and quality of DAs have worked over the past several years to develop a checklist and, based on this checklist, an instrument for determining whether any given DA meets a defined set of quality criteria.Objective/Methods  In this paper, we offer a framework for assessing the conceptual clarity and evidence base used to support the development of quality criteria/standards for evaluating DAs. We then apply this framework to assess the conceptual clarity and evidence base underlying the International Patient Decision Aids Standards (IPDAS) checklist criteria for one of the checklist domains: how best to present in DAs probability information to patients on treatment benefits and risks.Conclusion  We found that some of the central concepts underlying the presenting probabilities domain were not defined. We also found gaps in the empirical evidence and theoretical support for this domain and criteria within this domain. Finally, we offer suggestions for steps that should be undertaken for further development and refinement of quality standards for DAs in the future.

  November 03, 2011   doi: 10.1111/j.1369-7625.2011.00740.x   open full text
• Assessing quality of a worksite health promotion programme from participants’ views: findings from a qualitative study in Malaysia.
  Siow‐Yen Liau, Mohamed‐Azmi A. Hassali, Asrul A. Shafie, Mohamed‐Izham M. Ibrahim.
  Health Expectations. November 03, 2011
  Background  An assessment of the process and outcomes of a health promotion programme is necessary for the continuous improvement of a programme.Objective  To explore the participants’ perceptions of the quality and effectiveness of the ‘Love Your Heart Programme’.Design  A qualitative study using semi‐structured interviews with a purposive sample of participants of the ‘Love Your Heart’ programme. Interviews were based on an interview guide that grouped questions into four main subgroups: structure, process, immediate outcomes and impact. The interviews were audio‐recorded, transcribed verbatim and analysed using the principles of grounded theory.Results  A total of 17 interviews were conducted. The participants were satisfied with the structural aspects of the programme. Different opinions arose regarding the ideal frequency and duration of the programme. The content of the seminars was thought to be too general. There was also a lack of interest in the ‘Road to a Healthy Heart’ booklet. All of the respondents had positive opinions about the communication skills and attitude of the health educator. The potential advantages and disadvantages of participating in the programme were discussed. Finally, the respondents expressed their satisfaction with the programme and the impact it had on them.Discussion and conclusions  In general, the participants who were interviewed held the programme, and the health educator conducted the programme in high regard. The suggestions that were received can be used to further improve the acceptability and feasibility of the programme.

  November 03, 2011   doi: 10.1111/j.1369-7625.2011.00742.x   open full text
• Weak and strong publics: drawing on Nancy Fraser to explore parental participation in neonatal networks.
  Andrew J. Gibson, Gillian Lewando‐Hundt, Loraine Blaxter.
  Health Expectations. November 01, 2011
  Aims  We draw on the work of Nancy Fraser, and in particular her concepts of weak and strong publics, to analyze the process of parental involvement in managed neonatal network boards.Background  Public involvement has moved beyond the individual level to include greater involvement of both patients and the public in governance. However, there is relatively little literature that explores the nature and outcomes of long‐term patient involvement initiatives or has attempted to theorize, particularly at the level of corporate decision making, the process of patient and public involvement.Methods  A repeated survey of all neonatal network managers in England was carried out in 2006–07 to capture developments and changes in parental representation over this time period. This elicited information about the current status of parent representation on neonatal network boards. Four networks were also selected as case studies. This involved interviews with key members of each network board, interviews with parent representatives, observation of meetings and access to board minutes.Results  Data collected show that a wide range of approaches to involving parents has been adopted. These range from decisions not to involve parents at this level to relatively well‐developed systems designed to link parent representatives on network boards to parents in neonatal units.Conclusion  Despite these variations, we suggest that parental participation within neonatal services remains an example of a weak public because the parent representatives had limited participation with little influence on decision making.

  November 01, 2011   doi: 10.1111/j.1369-7625.2011.00735.x   open full text
• Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS‐Trial.
  Claudia Borreani, Andrea Giordano, Monica Falautano, Alessandra Lugaresi, Vittorio Martinelli, Franco Granella, Carla Tortorella, Imma Plasmati, Marta Radaelli, Deborah Farina, Eleonora Dalla Bella, Elisabetta Bianchi, Nicola Acquarone, Guido Miccinesi, Alessandra Solari,.
  Health Expectations. November 01, 2011
  Background  The SIMS‐Trial (ISRCTN81072971) proved the effectiveness, in terms of patient’s knowledge and care satisfaction, of an add‐on information aid (personal interview with a physician using a navigable CD and take‐home booklet) in 120 newly diagnosed patients with multiple sclerosis (MS) from five Italian centres.Objective  To scrutinize the experience of SIMS‐Trial participants in order to gain better understanding of the effectiveness of the information aid and its components.Design  We performed (i) nine individual semi‐structured interviews with a purposeful sample of SIMS‐Trial patients who received the information aid, (ii) focus group meeting (FGM) with the physicians who conducted the personal interview, and (iii) FGM with patients’ caring neurologists.Results  Patients’ experience with the information aid was positive as it enhanced their understanding of their disease, being viewed as a guided tour of their medical condition. The physicians who conducted the personal interviews were also positive in their overall evaluation but noted an initial difficulty in using the CD. The caring neurologists had limited direct experience of the aid, and their views were confined to utility of the information aid in general. All participants considered the combination of personal interview, CD navigation and take‐home booklet essential, but urged a more flexible scheduling of the personal interview. It also emerged that some content required revision and that the aid was unsuitable for patients with primary progressive MS.Conclusions  The results of the study further support the value of the aid and also provide important indications for improving it and refining indications for use.

  November 01, 2011   doi: 10.1111/j.1369-7625.2011.00736.x   open full text
• Feasibility and acceptability of a decision aid designed for people facing advanced or terminal illness: a pilot randomized trial.
  Dan D. Matlock, Tarah A. E. Keech, Marlene B. McKenzie, Michael R. Bronsert, Carolyn T. Nowels, Jean S. Kutner.
  Health Expectations. October 28, 2011
  Background  Patients nearing the end of their lives face an array of difficult decisions.Objective  This study was designed to assess the feasibility and acceptability of a decision aid (DA) designed for patients facing advanced or terminal illness.Design  We conducted a pilot randomized clinical trial of Health Dialog’s Looking Ahead: choices for medical care when you’re seriously ill DA (booklet and DVD) applied to patients on a hospital‐based palliative care (PC) service.Setting  University of Colorado Hospital – December 2009 and May 2010.Participants  All adult, English‐speaking patients or their decision makers were potentially eligible. Patients were not approached if they were in isolation, did not speak English or if any provider felt that they were not appropriate because of issues such as family conflict or actively dying.Intervention  All participants received a standard PC consultation. Participants in the intervention arm also received a copy of the DA.Measurements  Primary outcomes included decision conflict and knowledge. Participants in the intervention arm also completed an acceptability questionnaire and qualitative exit interviews.Results  Of the 239 patients or decision makers, 51(21%) enrolled in the trial. The DA had no significant effect on decision conflict or knowledge. Exit interviews indicated it was acceptable and empowering, although they wished they had access to the DA earlier.Conclusions  While the DA was acceptable, feasibility was limited by late‐life illness challenges. Future trials of this DA should be performed on patients earlier in their illness trajectory and should include additional outcome measures such as self‐efficacy and confidence.

  October 28, 2011   doi: 10.1111/j.1369-7625.2011.00732.x   open full text
• Motivation and experiences of self‐testers regarding tests for cardiovascular risk factors.
  Martine H. P. Ickenroth, Janaica E. J. Grispen, Gaby Ronda, Marloes Tacken, Geert‐Jan Dinant, Nanne K. de Vries, Trudy van der Weijden.
  Health Expectations. October 28, 2011
  Background  In recent years, self‐tests have become increasingly available to the general public, though their value is still being debated. Because these tests are available, consumers should have access to clear information about self‐testing. Examining experiences of self‐testers could contribute to the development of consumer information.Objective  Detailed exploration of consumers’ experiences with self‐testing for cardiovascular risk factors.Methods  Semi‐structured interviews with 20 consumers who had performed a self‐test for glucose, cholesterol or albuminuria. The main topics of the interviews were reasons for self‐testing, performing the self‐test, follow‐up behaviour and perceived need for information on self‐testing. Data were analysed using thematic content analysis.Results  Regarding the reason for self‐testing, three types of users were distinguished: those who engaged in self‐testing when a test was offered, either with or without previous knowledge about the disease or risk factor, and those who had actively decided to test and had searched for a self‐test themselves. Self‐testers had generally experienced no problems performing the test or interpreting the result and had considerable confidence in the result. They were easily reassured by a normal result, while an abnormal result did not automatically mean they consulted a doctor. Most participants did not feel the need for more information.Conclusions  Self‐testers often perform tests for reassurance, without considering the disadvantages, such as the absence of professional counselling and the risk of false‐positive or false‐negative results. Consumer information should promote more informed and deliberate choices for self‐testing.

  October 28, 2011   doi: 10.1111/j.1369-7625.2011.00733.x   open full text
• To accept, or not to accept, that is the question: citizen reactions to rationing.
  Mari Broqvist, Peter Garpenby.
  Health Expectations. October 28, 2011
  Background  The publicly financed health service in Sweden has come under increasing pressure, forcing policy makers to consider restrictions.Objective  To describe different perceptions of rationing, in particular, what citizens themselves believe influences their acceptance of having to stand aside for others in a public health service.Design  Qualitative interviews, analysed by phenomenography, describing perceptions by different categories.Setting and participants  Purposeful sample of 14 Swedish citizens, based on demographic criteria and attitudes towards allocation in health care.Results  Participants expressed high awareness of limitations in public resources and the necessity of rationing. Acceptance of rationing could increase or decrease, depending on one’s (i) awareness that healthcare resources are limited, (ii) endorsement of universal health care, (iii) knowledge and acceptance of the principles guiding rationing and (iv) knowledge about alternatives to public health services.Conclusions  This study suggests that decision makers should be more explicit in describing the dilemma of resource limitations in a publicly funded healthcare system. Openness enables citizens to gain the insight to make informed decisions, i.e. to use public services or to ‘opt out’ of the public sector solution if they consider rationing decisions unacceptable.

  October 28, 2011   doi: 10.1111/j.1369-7625.2011.00734.x   open full text
• Audio‐video decision support for patients: the documentary genré as a basis for decision aids.
  Angelo E. Volandes, Michael J. Barry, Fiona Wood, Glyn Elwyn.
  Health Expectations. October 28, 2011
  Objective  Decision support tools are increasingly using audio‐visual materials. However, disagreement exists about the use of audio‐visual materials as they may be subjective and biased. Methods  This is a literature review of the major texts for documentary film studies to extrapolate issues of objectivity and bias from film to decision support tools. Results  The key features of documentary films are that they attempt to portray real events and that the attempted reality is always filtered through the lens of the filmmaker. The same key features can be said of decision support tools that use audio‐visual materials. Three concerns arising from documentary film studies as they apply to the use of audio‐visual materials in decision support tools include whose perspective matters (stakeholder bias), how to choose among audio‐visual materials (selection bias) and how to ensure objectivity (editorial bias). Discussion  Decision science needs to start a debate about how audio‐visual materials are to be used in decision support tools. Simply because audio‐visual materials may be subjective and open to bias does not mean that we should not use them. Conclusion  Methods need to be found to ensure consensus around balance and editorial control, such that audio‐visual materials can be used.

  October 28, 2011   doi: 10.1111/j.1369-7625.2011.00727.x   open full text
• Determinants of foodservice satisfaction for patients in geriatrics/rehabilitation and residents in residential aged care.
  Olivia R. L. Wright, Luke B. Connelly, Sandra Capra, Joan Hendrikz.
  Health Expectations. September 16, 2011
  Background  Poor satisfaction with institutional food is a significant moderator of food intake in geriatrics/rehabilitation and residential aged care. Purpose  To quantify the relationship between foodservice satisfaction, foodservice characteristics, demographic and contextual variables in geriatrics/rehabilitation and residential aged care. Methods  The Resident Foodservice Satisfaction Questionnaire was administered to 103 patients of 2 geriatrics/rehabilitation units and 210 residents of nine residential aged care facilities in Brisbane, Australia. Ordered probit regression analysis measured the association of age, gender, ethnicity and appetite, timing and amount of meal choice, menu selectivity, menu cycle, production system, meal delivery system and therapeutic diets with foodservice satisfaction. Results  Patient and resident appetite (P < 0.01), the amount and timing of meal choice (P < 0.01), self‐rated health (P < 0.01), accommodation style (P < 0.05) and age (P < 0.10) significantly moderated foodservice satisfaction. High protein/high energy therapeutic diets (P < 0.01), foodservice production (P < 0.01) and delivery systems (P > 0.01) were significant moderators for those with ‘fair’ self‐rated health. Conclusions  Patient and resident characteristics and structural and systems‐related foodservice variables were more important for influencing foodservice satisfaction than characteristics of food quality. The results suggest modifications to current menu planning and foodservice delivery methods: reducing the time‐lapse between meal choice and consumption, augmenting the number of meals at which choice is offered, and revising food production and delivery systems.It is important that residents in poorer health who are a high risk of under‐nutrition are provided with sufficient high protein/high energy therapeutic diets. Diets that restrict macro‐ and micro‐nutrients should be minimized for all patients and residents.

  September 16, 2011   doi: 10.1111/j.1369-7625.2011.00711.x   open full text
• Physician‐related facilitators and barriers to patient involvement in treatment decision making in early stage breast cancer: perspectives of physicians and patients.
  Mary Ann O’Brien, Peter M. Ellis, Timothy J. Whelan, Cathy Charles, Amiram Gafni, Peter Lovrics, Som D. Mukherjee, Nicole Hodgson.
  Health Expectations. September 16, 2011
  Objective  To identify patients’ and physicians’ perceptions of physician‐related verbal and nonverbal facilitators and barriers to patient involvement in treatment decision making (TDM) occurring during clinical encounters for women with early stage breast cancer (ESBC).Methods  Eligible women were offered treatment options including surgery and adjuvant therapy. Eligible physicians provided care for women with ESBC in either a teaching hospital or an academic cancer centre. In Phase 1, women were interviewed 1–2 weeks after their initial consultation. In Phase 2, women and their physicians were interviewed separately while watching their own consultation on a digital video disk. All interviews were audiotaped, transcribed and analysed.Results  Forty women with ESBC and six physicians participated. Patients and physicians identified thirteen categories of physician facilitators of women’s involvement. Of these, seven categories were frequently identified by women: conveyed a rationale for patient involvement in TDM; explained the risk of cancer recurrence; explained treatment options; enhanced patient understanding of information; gave time for TDM; offered a treatment recommendation; and made women feel comfortable. Physicians described similar information‐giving facilitators but less often mentioned other facilitators. Few physician barriers to women’s involvement in TDM were identified.Conclusions  Women with ESBC and cancer physicians shared some views of how physicians involve patients in TDM, although there were important differences. Physicians may underestimate the importance that women’s place on understanding the rationale for their involvement in TDM and on feeling comfortable during the consultation.

  September 16, 2011   doi: 10.1111/j.1369-7625.2011.00712.x   open full text
• On the suitability of fast and frugal heuristics for designing values clarification methods in patient decision aids: a critical analysis.
  Arwen H. Pieterse, Marieke de Vries.
  Health Expectations. September 08, 2011
  Background  Increasingly, patient decision aids and values clarification methods (VCMs) are being developed to support patients in making preference‐sensitive health‐care decisions. Many VCMs encourage extensive deliberation about options, without solid theoretical or empirical evidence showing that deliberation is advantageous. Research suggests that simple, fast and frugal heuristic decision strategies sometimes result in better judgments and decisions. Durand et al. have developed two fast and frugal heuristic‐based VCMs. Objective  To critically analyse the suitability of the ‘take the best’ (TTB) and ‘tallying’ fast and frugal heuristics in the context of patient decision making. Strategy  Analysis of the structural similarities between the environments in which the TTB and tallying heuristics have been proven successful and the context of patient decision making and of the potential of these heuristic decision processes to support patient decision making. Conclusion  The specific nature of patient preference‐sensitive decision making does not seem to resemble environments in which the TTB and tallying heuristics have proven successful. Encouraging patients to consider less rather than more relevant information potentially even deteriorates their values clarification process. Values clarification methods promoting the use of more intuitive decision strategies may sometimes be more effective. Nevertheless, we strongly recommend further theoretical thinking about the expected value of such heuristics and of other more intuitive decision strategies in this context, as well as empirical assessments of the mechanisms by which inducing such decision strategies may impact the quality and outcome of values clarification.

  September 08, 2011   doi: 10.1111/j.1369-7625.2011.00720.x   open full text
• The use of formal and informal knowledge sources in patients’ treatment decisions in secondary stroke prevention: qualitative study.
  Josephine M. E. Gibson, Caroline L. Watkins.
  Health Expectations. September 08, 2011
  Background  There is robust empirical evidence to support clinical decision making in secondary stroke prevention after transient ischaemic attack (TIA) or recovered stroke. However, little attention has been paid to patients’ utilization of this evidence in coming to decisions about their treatment choices. Objective  To examine the use of formal and informal knowledge by patients in making decisions about carotid endarterectomy (CEA) and medical treatment after TIA/recovered stroke. Setting and participants  Twenty participants were recruited from an outpatient vascular surgical assessment clinic in England. Ten were receiving medical treatment alone, and 10 were undergoing CEA after TIA or recovered stroke. Method  Twenty‐eight in‐depth qualitative interviews were conducted. An iterative approach was used whereby emergent themes were further explored in later interviews. Interviews were audiotaped, transcribed and coded. Results  Participants gathered and utilized several types of knowledge in the process of making treatment decisions: Empirical knowledge (e.g. clinical trial findings); Pathophysiologic findings (e.g. results of clinical investigations); Experiential knowledge (e.g. personal experience of stroke); Goals and values (e.g. potential impact on family); System features (e.g. apparent urgency of treatment). Conclusions  In addition to formal evidence, patients use other sources of informal or ‘non‐evidentiary’ knowledge to support their decisions about treatment after TIA or recovered stroke. To enable evidence‐based patient choice, health professionals need to appreciate the diverse types of evidence which patients use, to help them to access relevant and high‐quality evidence, to balance evidence from different sources and to make choices which are congruent with their values and expectations.

  September 08, 2011   doi: 10.1111/j.1369-7625.2011.00724.x   open full text
• The impact of patient and public involvement in the work of the Dementias & Neurodegenerative Diseases Research Network (DeNDRoN): case studies.
  Steve Iliffe, Terry McGrath, Douglas Mitchell.
  Health Expectations. September 08, 2011
  Aims  (i) To describe patient and public involvement (PPI) in a network promoting research in dementia and neurodegenerative diseases, in terms of activity at the different stages of the research cycle and within the different levels of the research network. (ii) To use case studies to try and answer the question: what benefits (if any) does PPI in research bring to the research process?Background  PPI in health research is a central part of government policy, but the evidence base underpinning it needs strengthening. PPI allows exploration of feasibility, acceptability and relevance of hypotheses, assists in the precise definition of research questions and increases accrual to studies. However, the measurement of outcomes is methodologically difficult, because the impact of lay researchers may occur through team interactions and be difficult to untangle from the efforts of professional researchers. Opportunities for PPI in rapidly progressive diseases may be limited, and involvement of people with marked cognitive impairment is particularly challenging.Design  (i) Description of PPI within the DeNDRoN network. (ii) Case studies of three research projects which asked for extra help from centrally organized PPI.Results  PPI in research projects on the DeNDRoN portfolio may function at different levels, occurring at project, local research network and national level. Case studies of three research projects show different roles for PPI in research and different functions for centrally organized PPI, including contribution to remedial action in studies that are not recruiting to target, solving problems because of the complexity and sensitivity of the research topic, and linking researchers to PPI resources.Discussion  The case studies suggest that centrally organized PPI can have ‘diagnostic’ and remedial functions in studies that are struggling to recruit and serve as reinforcement for study‐level PPI in the complex and sensitive research topics that are typical in neurodegenerative diseases research. PPI may be actively sought by researchers, but the infrastructure of PPI is not yet so widespread in the research community that lay researchers are easy to find; a centrally organized PPI resource can assist in this situation.

  September 08, 2011   doi: 10.1111/j.1369-7625.2011.00728.x   open full text
• The process of social participation in primary health care: the case of Palencia, Guatemala.
  Ana L. Ruano, Miguel S. Sebastián, Anna‐Karin Hurtig.
  Health Expectations. September 08, 2011
  Background  In 2008, the World Health Organization issued a callback to the principles of primary health care, which renewed interests in social participation in health. In Guatemala, social participation has been the main policy for the decentralization process since the late 1990s and the social development council scheme has been the main means for participation for the country’s population since 2002.Aim  The aim of this study was to explore the process of social participation at a municipal‐level health commission in the municipality of Palencia, Guatemala.Methods  Analysis of legal and policy documents and in‐depth interviews with institutional and community‐level stakeholders of the commission.Results  The lack of clear guidelines and regulations means that the stakeholders own motivations, agendas and power resources play an important part in defining the roles of the participants. Institutional stakeholders have the human and financial power to make policies. The community‐level stakeholders are token participants with little power resources. Their main role is to identify the needs of their communities and seek help from the authorities. Satisfaction and the perceived benefits that the stakeholders obtain from the process play an important part in maintaining the commission’s dynamic, which is unlikely to change unless the stakeholders perceive that the benefit they obtain does not outweigh the effort their role entails.Conclusion  Without more uniformed mechanisms and incentives for municipalities to work towards the national goal of equitable involvement in the development process, the achievements will be fragmented and will depend on the individual stakeholder’s good will.

  September 08, 2011   doi: 10.1111/j.1369-7625.2011.00731.x   open full text
• Provider perspectives on the utility of a colorectal cancer screening decision aid for facilitating shared decision making.
  Paul C. Schroy, Shamini Mylvaganam, Peter Davidson.
  Health Expectations. September 08, 2011
  Background  Decision aids for colorectal cancer (CRC) screening have been shown to enable patients to identify a preferred screening option, but the extent to which such tools facilitate shared decision making (SDM) from the perspective of the provider is less well established.Objective  Our goal was to elicit provider feedback regarding the impact of a CRC screening decision aid on SDM in the primary care setting.Methods  Cross‐sectional survey.Participants  Primary care providers participating in a clinical trial evaluating the impact of a novel CRC screening decision aid on SDM and adherence.Main outcomes  Perceptions of the impact of the tool on decision‐making and implementation issues.Results  Twenty‐nine of 42 (71%) eligible providers responded, including 27 internists and two nurse practitioners. The majority (>60%) felt that use of the tool complimented their usual approach, increased patient knowledge, helped patients identify a preferred screening option, improved the quality of decision making, saved time and increased patients’ desire to get screened. Respondents were more neutral is their assessment of whether the tool improved the overall quality of the patient visit or patient satisfaction. Fewer than 50% felt that the tool would be easy to implement into their practices or that it would be widely used by their colleagues.Conclusion  Decision aids for CRC screening can improve the quality and efficiency of SDM from the provider perspective but future use is likely to depend on the extent to which barriers to implementation can be addressed.

  September 08, 2011   doi: 10.1111/j.1369-7625.2011.00730.x   open full text
• Media coverage of cervical cancer and the HPV vaccine: implications for geographic health inequities.
  Janice L. Krieger, Mira L. Katz, Dana Eisenberg, Sarah Heaner, Melanie Sarge, Parul Jain.
  Health Expectations. September 06, 2011
  Objective  To describe the content of newspaper articles about cervical cancer and the human papillomavirus (HPV) vaccine published in Appalachia and identify potential differences in coverage as compared to the content of newspaper articles published in non‐Appalachia Ohio. Background  Individuals rely on media as an important source of health information. Inadequate coverage of health issues may reinforce health inequities such as the elevated cervical cancer incidence and mortality rates in Appalachia Ohio. Methods  A content analysis was conducted of all newspaper articles about cervical cancer and the HPV vaccine published in Appalachia and non‐Appalachia Ohio during 2006. Findings  A total of 121 published newspaper articles (42 in Appalachia and 79 in non‐Appalachia) about cervical cancer and the HPV vaccine were identified. Articles published in Appalachia Ohio were significantly less likely than articles published in non‐Appalachia Ohio to provide information about the threat of cervical cancer and the efficacy of the HPV vaccine. Specifically, few articles published in Appalachia included information about the ability of the vaccine to prevent cervical cancer, the cost of the vaccine and the availability of assistance programmes for the un‐ and underinsured. Conclusions  Newspaper articles printed in the Appalachia region lacked vital information that could help promote uptake of the HPV vaccine. Health educators and healthcare providers should be aware that women from underserved geographic regions like Appalachia may have greater information needs regarding their risk of cervical cancer and the potential benefits of the HPV vaccine as compared to the general patient population.

  September 06, 2011   doi: 10.1111/j.1369-7625.2011.00721.x   open full text
• The Cochrane Library review titles that are important to users of health care, a Cochrane Consumer Network project.
  Janet L. Wale, María Belizán, Jane Nadel, Claire Jeffrey, Sita L. Vij.
  Health Expectations. September 06, 2011
  Background  The Cochrane Consumer Network is an internet‐based community of international users of health care contributing to the work of The Cochrane Collaboration, whose mission is to inform healthcare decision making through development of systematic reviews of best evidence on healthcare interventions.Objective  To prioritize existing review titles listed on The Cochrane Library from a healthcare user perspective, with particular emphasis on patients, carers and health consumers.Design  An online survey was developed and after piloting was made available internationally. The broad dissemination strategy targeted Consumer Network members and Cochrane Review Group editorial staff to identify champions who notified patient support groups and participated in snowballing. The first part of the survey defined criteria that could be applied to review titles and asked survey respondents to rank them. The second part asked respondents to select a health area and prioritize review titles that were of importance to them. Each health area corresponded to a Cochrane Review Group.Results and discussion  Sufficient responses were obtained from 522 valid responses to prioritize review topics in 19 health areas. A total of 321 respondents completed the titles assessment. The types of prioritized interventions were determined by the health area. An important observation was the emphasis on lifestyle and non‐medication therapies in many of the included health areas. The clearest exception to this broad observation was where acute care is required such as antibiotics for acute respiratory tract and HIV‐associated infections and for cardiac conditions. For some cancers, advanced cancer interventions were prioritized. The most important criteria were for the title to convey a clear meaning and the title conveyed that the review would have an impact on health and well‐being. The least important criteria were that the topic was newsworthy or prioritized in the healthcare system.Conclusion  This project was able to identify priority Cochrane review topics for users of health care in 19 of the 50 areas of health care covered by The Cochrane Collaboration. Reviews addressing lifestyle and non‐medical interventions were strongly represented in the prioritized review titles. These findings highlight the importance of developing readable, informative lay summaries to support evidence‐based decision making by healthcare users.

  September 06, 2011   doi: 10.1111/j.1369-7625.2011.00723.x   open full text
• ‘Seamless care? Just a list would have helped!’ Older people and their carer’s experiences of support with medication on discharge home from hospital.
  Denise A Knight, Diane Thompson, Elspeth Mathie, Angela Dickinson.
  Health Expectations. August 12, 2011
  Background  Many older people use one or more prescribed medicines on a daily basis. Effective medicines management at hospital discharge can support appropriate use of medicines following discharge and help avoid unnecessary hospital re‐admission. Many people, however, feel they receive insufficient information about medicines on discharge from hospital. Objectives  To explore older people and their family carers’ experience of hospital discharge in relationship to the organization and management of medicines. Design  Qualitative interviews with older people over 75 years old, taking four or more medicines, and their carers, following discharge from hospital in the United Kingdom (UK). Participants completed medication diaries prior to the interview. Setting  Interviews took place in the participant’s home. Results  Nineteen interviews were conducted involving 12 carers and seven older people. Participants were generally not satisfied with the discharge process, particularly concerning perceived delays in discharge. Inadequate explanations about medicines at discharge were commonly reported and led to omission of medicines, incorrect dosage, anxiety and confusion. Poor communication between the hospital and general practitioners or community pharmacists was also evident. Conclusions  Despite significant policy recommendations and research in this area, many problems with the management of medicines during hospital discharge were shown, and a lack of partnership was evident between hospital staff and patients/family carers regarding the use of medicines post‐discharge. Improved medicines management during hospital discharge is required to ensure older people take their medications as prescribed and to protect them from the adverse effects of medicines not being taken correctly.

  August 12, 2011   doi: 10.1111/j.1369-7625.2011.00714.x   open full text
• Same description, different values. How service users and providers define patient and public involvement in health care.
  Marit By Rise, Marit Solbjør, Mariela C. Lara, Heidi Westerlund, Hilde Grimstad, Aslak Steinsbekk.
  Health Expectations. August 12, 2011
  Background  Patient and public involvement in health care is important, but the existing definitions of the concept do not integrate the stakeholders’ own perceptions. Objective  To investigate and compare service users’ and service providers’ own definitions of patient and public involvement and their implications. Design, setting and participants  Qualitative study with mainly individual in‐depth semi‐structured interviews conducted between June 2007 and June 2009. Data were analysed using a grounded theory approach. Results  A total of 20 patients, 13 public representatives and 44 health service providers/managers in both somatic and mental health care were interviewed. A common definition of patient and public involvement emerged: It is founded on mutual respect, carried out through dialogue aiming at achieving shared decision making. Nevertheless, users and providers assigned different values to the core aspects: Respect was imperative for service users and implied for providers, dialogue was a way to gain respect for service users and to achieve good outcome for providers, and both worried that the other party wanted to make sole decisions. Conclusions  Users and providers need to consider that although they have a common definition of involvement in health care, they assign different values to its aspects. Increasing and improving patient and public involvement therefore requires knowledge on and dialogue between the parties about these differences.

  August 12, 2011   doi: 10.1111/j.1369-7625.2011.00713.x   open full text
• Parental views on informed consent for expanded newborn screening.
  Louise Moody, Kubra Choudhry.
  Health Expectations. August 12, 2011
  Background  An increasing array of rare inherited conditions can be detected as part of the universal newborn screening programme. The introduction and evaluation of these service developments require consideration of the ethical issues involved and appropriate mechanisms for informing parents and gaining consent if required. Exploration of parental views is needed to inform the debate and specifically consider whether more flexible protocols are needed to fit with the public perception of new developments in this context. Objective  This study has been undertaken to explore perceptions and attitudes of parents and future parents to an expanded newborn screening programme in the United Kingdom and the necessary information provision and consent processes. Design and participants  A mixed methods study involving focus groups (n = 29) and a web‐survey (n = 142) undertaken with parents and future parents. Results and conclusions  Parents want guaranteed information provision with clear decision‐making powers and an awareness of the choices available to them. The difference between existing screening provision and expanded screening was not considered to be significant enough by participants to warrant formal written, informed consent for expanded screening. It is argued that the ethical review processes need to be more flexible towards the provision of information and consent processes for service developments in newborn screening.

  August 12, 2011   doi: 10.1111/j.1369-7625.2011.00710.x   open full text
• Physicians’ attitudes about communicating and managing scientific uncertainty differ by perceived ambiguity aversion of their patients.
  David B. Portnoy, Paul K. J. Han, Rebecca A. Ferrer, William M. P. Klein, Steven B. Clauser.
  Health Expectations. August 12, 2011
  Background  Medical interventions are often characterized by substantial scientific uncertainty regarding their benefits and harms. Physicians must communicate to their patients as part of the process of shared decision making, yet they may not always communicate scientific uncertainty for several reasons. One suggested by past research is individual differences in physicians’ tolerance of uncertainty. Relatedly, an unexplored explanation is physicians’ beliefs about their patients’ tolerance of uncertainty.Design  To test this possibility, we surveyed a sample of primary care physicians (N = 1500) and examined the association between their attitudes about communicating and managing scientific uncertainty and their perceptions of negative reactions to uncertainty by their patients. Physician perceptions were measured by their propensity towards pessimistic appraisals of risk information and avoidance of decision making when risk information is ambiguous – of uncertain reliability, credibility or adequacy, known as ‘ambiguity aversion’.Results  Confirming past studies, physician demographics (e.g. medical specialty) predicted attitudes toward communicating scientific uncertainty. Additionally, physicians’ beliefs about their patients’ ambiguity aversion significantly predicted these preferences. Physicians who thought that more of their patients would have negative reactions to ambiguous information were more likely to think that they should decide what is best for their patients (β = 0.065, P = 0.013), and to withhold an intervention that had uncertainty associated with it (β = 0.170, P < 0.001).Discussion  When faced with the task of communicating scientific uncertainty about medical tests and treatments, physicians’ perce‐ptions of their patients’ ambiguity aversion may be related to their attitudes towards communicating uncertainty.

  August 12, 2011   doi: 10.1111/j.1369-7625.2011.00717.x   open full text
• Prescription medicines: decision‐making preferences of patients who receive different levels of public subsidy.
  Jane Robertson, Evan Doran, David A. Henry, Glenn Salkeld.
  Health Expectations. August 12, 2011
  Objective  To compare the relative importance of medicine attributes and decision‐making preferences of patients with higher or lower levels of insurance coverage in a publicly funded health care system.Design and setting  Cross‐sectional telephone survey of randomly selected regular medicine users aged ≥18 years in the Hunter Valley, NSW, Australia.Main variables studied  Questions about 27 medicine attributes and active involvement in decisions to start a new medicine.Results  After adjustment, there were few differences between the 408 concession card holders (high insurance) and 410 general beneficiaries (low insurance) in their assessment of the importance of medicine attributes. For both groups, the explanation of treatment options, establishing the need for the medicine, and medicine efficacy and safety were the most important considerations. Medicine costs, the treatment burden and medicine familiarity were less important; the views of family and friends ranked lowest. There was a statistically significantly greater influence of the regular doctor for the concession card holders than general beneficiaries (93.6 vs. 84%, adjusted OR 2.80, 95% CI 1.31, 5.99). Concession card holders were more likely to favour doctors having more say in the decision‐making process (crude OR 1.69, 95% CI 1.28, 2.24), and more likely to report the most recent treatment decision being made by the doctor alone, compared with general beneficiaries (61.2 vs. 40.3%).Conclusion  Medicine need, efficacy and safety are viewed as paramount for most patients, irrespective of insurance status. While patients report the importance of participation in treatment decisions, delegation of decision making to the doctor was common in practice.

  August 12, 2011   doi: 10.1111/j.1369-7625.2011.00715.x   open full text
• Prioritizing research needs based on a systematic evidence review: a pilot process for engaging stakeholders.
  Rachel Gold, Evelyn P. Whitlock, Carrie D. Patnode, Paul S. McGinnis, David I. Buckley, Cynthia Morris.
  Health Expectations. August 12, 2011
  Background/context  Systematic evidence reviews (SERs) identify knowledge gaps in the literature, a logical starting place for prioritizing future research. Varied methods have been used to elicit diverse stakeholders’ input in such prioritization.Objective  To pilot a simple, easily replicable process for simultaneously soliciting consumer, clinician and researcher input in the identification of research priorities, based on the results of the 2009 SER on screening adults for depression in primary care.Methods  We recruited 20 clinicians, clinic staff, researchers and patient advocates to participate in a half‐day event in October 2009. We presented SER research methods and the results of the 2009 SER. Participants took part in focus groups, organized by profession; broad themes from these groups were then prioritized in a formal exercise. The focus group content was also subsequently analysed for specific themes.Results  Focus group themes generally reacted to the evidence presented; few were articulated as research questions. Themes included the need for resources to respond to positive depression screens, the impact of depression screening on delivery systems, concerns that screening tools do not address comorbid or situational causes of depression and a perceived ‘disconnect’ between screening and treatment. The two highest‐priority themes were the system effects of screening for depression and whether depression screening effectively leads to improved treatment.Conclusion  We successfully piloted a simple, half‐day, easily replicable multi‐stakeholder engagement process based on the results of a recent SER. We recommend a number of potential improvements in future endeavours to replicate this process.

  August 12, 2011   doi: 10.1111/j.1369-7625.2011.00716.x   open full text
• Financial incentives to encourage healthy behaviour: an analysis of UK media coverage.
  Hannah Parke, Richard Ashcroft, Rebecca Brown, Theresa M Marteau, Clive Seale.
  Health Expectations. July 20, 2011
  Background  Policies to use financial incentives to encourage healthy behaviour are controversial. Much of this controversy is played out in the mass media, both reflecting and shaping public opinion. Objective  To describe UK mass media coverage of incentive schemes, comparing schemes targeted at different client groups and assessing the relative prominence of the views of different interest groups. Design  Thematic content analysis. Subjects  National and local news coverage in newspapers, news media targeted at health‐care providers and popular websites between January 2005 and February 2010. Setting  UK mass media. Results  The study included 210 articles. Fifteen separate arguments favourable towards schemes, and 19 unfavourable, were identified. Overall, coverage was more favourable than unfavourable, although most articles reported a mix of views. Arguments about the prevalence and seriousness of the health problems targeted by incentive schemes were uncontested. Moral and ethical objections to such schemes were common, focused in particular on recipients such as drug users or the overweight who were already stereotyped as morally deficient, and these arguments were largely uncontested. Arguments about the effectiveness of schemes and their potential for benefit or harm were areas of greater contestation. Government, public health and other health‐care provider interests dominated favourable coverage; opposition came from rival politicians, taxpayers’ representatives, certain charities and from some journalists themselves. Conclusions  Those promoting incentive schemes for people who might be regarded as ‘undeserving’ should plan a media strategy that anticipates their public reception.

  July 20, 2011   doi: 10.1111/j.1369-7625.2011.00719.x   open full text
• The goals of communicating bad news in health care: do physicians and patients agree?
  Kate Sweeny, James A. Shepperd, Paul K. J. Han.
  Health Expectations. July 20, 2011
  Background  Communicating bad news serves different goals in health care, and the extent to which physicians and patients agree on the goals of these conversations may influence their process and outcomes. However, we know little about what goals physicians and patients perceive as important and how the perceptions of physicians and patients compare. Objective  To compare physicians’ and patients’ perceptions of the importance of different communication goals in bad news conversations. Design  Survey‐based descriptive study. Participants  Physicians in California recruited via a medical board mailing list (n = 67) and patients (n = 77) recruited via mailing lists and snowball recruitment methods. Measurements  Physicians reported their experience communicating bad news, the extent to which they strive for various goals in this task and their perceptions of the goals important to patients. Patients reported their experience receiving bad news, the goals important to them and their perceptions of the goals important to physicians. Main results  Physicians and patients were quite similar in how important they personally rated each goal. However, the two groups perceived differences between their values and the values of the other group. Conclusions  Physicians and patients have similar perceptions of the importance of various goals of communicating bad news, but inaccurate perceptions of the importance of particular goals to the other party. These findings raise important questions for future research and clinical practice.

  July 20, 2011   doi: 10.1111/j.1369-7625.2011.00709.x   open full text
• Patient issues in health research and quality of care: an inventory and data synthesis.
  Truus Teunissen, Merel Visse, Pim de Boer, Tineke A. Abma.
  Health Expectations. July 20, 2011
  Aim  The purpose of this review is to generate an inventory of issues that matter from a patient perspective in health research and quality of care. From these issues, criteria will be elicited to support patient(s) (groups) in their role as advisor or advocate when appraising health research, health policy and quality of health care.Background  Literature shows that patients are beginning to develop their own voice and agenda’s with issues in order to be prepared for the collaboration with professionals. Yet, patient issues have not been investigated systematically. This review addresses what patients find important and help to derive patient criteria for appraising research and quality of care.Methods/search strategy  Information was gathered from Western countries with similar economic, societal and health‐care situations. We searched (from January 2000 to March 2010) for primary sources, secondary sources and tertiary sources; non‐scientific publications were also included.Results  The international inventory of issues that were defined by patients is covering a large array of domains. In total, 35 issue clusters further referred to as criteria were found ranging from dignity to cost effectiveness and family involvement. Issues from a patient perspective reveal patient values and appear to be adding to professional issues.Conclusions  Patient issues cover a broad domain, including fundamental values, quality of life, quality of care and personal development. Quite a few issues do not find its reflection in the scientific literature in spite of their clear and obvious appearance from tertiary sources. This may indicate a gap between the scientific research community and patient networks.

  July 20, 2011   doi: 10.1111/j.1369-7625.2011.00718.x   open full text