Substance addiction in young adults is particularly problematic. Yet, much remain at stake in understanding the specifics of this population’s access to services. The objective of this study is to explore young adults’ initiation of substance misuse treatment. Our study sample was composed of 35 individuals aged 18 to 30 with problematic psychoactive substance use who have been identified in criminal courts, hospital emergency departments, and Health and Social Services Centers in Québec (Canada). A thematic analysis was performed on the 62 semi-structured interviews conducted with participants. Three components emerged. First, personal elements—expectations, individual motivations, perceptions of use, and capacity to control it—influence initiation of substance misuse treatment. Second, family and peers have noticeable influences. Finally, system characteristics and prior care experiences also shape the process. Consideration should be given to tailor interventions that can reach young adults and encourage them to initiate appropriate care.
We are likely moving rapidly toward a post-antibiotic era, as a result of escalating antimicrobial resistance, rapidly declining antibiotic production and profligate overuse. Hitherto research has almost exclusively focused on doctors’ prescribing, with nurses’ roles in antibiotic use remaining virtually invisible. Drawing on interviews with 30 nurses, we focus on nurses as brokers of doctors’ antibiotic decisions, nursing capacity to challenge doctors’ decisions, and, "back stage" strategies for circumnavigating organizational constraints. We argue that nurses occupy an essential and conscious position as brokers within the hospital; a subject position that is not neutral, facilitates (short-term) cohesion, and involves the pursuit of particular (preferred) nursing outcomes. Illustrating how authority can be diffuse, mediated by institutionalized praxis, and how professionals evade attempts to govern their practice, we challenge the reification of physician prescribing power, arguing that it may work against the utilization of nurses as important stakeholders in the future of antibiotics.
The interrelationship between stigma and help-seeking is under-researched among children and adolescents. This study explored stigma in relation to pathways to care among young people putatively in an early stage of increased risk of developing psychotic disorders. "Pathways to care" was defined as help-seeking and support from informal and formal resources, and increased risk was determined through the presence of persistent psychotic-like experiences and internalizing/externalizing psychopathology. Twenty-nine qualitative interviews were analyzed using thematic analysis. We defined the superordinate theme in these data as "conditional disclosure," a concept reflecting the rules and prerequisites that influenced how/whether participants sought help. Through parallels between these findings and established stigma theory, we examined how these conditions could be interpreted as influenced by stigma. Our findings demonstrate the influence of stigma on young people’s perceptions of a range of pre-clinical symptoms, and on how they seek support for these symptoms.
The patient-centered medical home (PCMH) is a model of care that emphasizes the coordination of patient treatment among health care providers. Practice transformation to this model, however, presents a number of challenges. One of these challenges is getting the buy-in of all personnel to commit to making organizational changes in the journey to becoming a nationally recognized medical home. This study investigated internal messages of buy-in as communicated by practices transitioning to this type of care. Grounding itself in stakeholder theory, this study analyzed interviews with staff, administration, and practitioners from 20 medical practices in a mid-Atlantic state. The analysis revealed three overarching themes: (a) communication among staff that is open, consistent; (b) implementation of reinforcement techniques; and (c) access to a change implementer who encourages successful evolution. Discussion of these themes provides recommendations for communication approaches to organizational buy-in for medical practices hoping to become a PCMH.
In this article, we explore what enables meaningful participation in a music and theater workshop from a first person’s perspective of people with mental health problems. The study uses a hermeneutical-phenomenological approach. Data were collected from qualitative in-depth interviews with 12 participants in a music and theater workshop located in a Norwegian mental health hospital. Data were analyzed through thematic analysis. Two overarching themes were identified: (a) room for dignity and (b) a creative arena. This study indicates that to enable participation for people with long-term mental health problems, it is important to facilitate activities that are flexible, person centered, and resource oriented, in which participants have the possibility to participate regardless of symptoms, functional ability, or whether they are hospitalized. In addition, having professionals who believe in creative growth and offer an illness-free zone that belongs to the participants in a hospital setting is of great importance.
Narratives of cultural stakeholders in marginalized sex worker spaces often do not find the traction to influence mainstream health discourse. Furthermore, such narratives are framed against the grain of the dominant cultural narrative; they are resistive texts, and they depict enactments of resistance to the normal order. This article, based on 12 weeks of field study in a sex worker community in India, foregrounds how sex workers communicatively frame and enact resistance, and hence formulate insurgent texts, along a continuum—from overt violence to covert negotiation on issues such as condom and alcohol use. Making note of these insurgent texts is crucial to understanding how meanings of health are locally made in a sex worker community as it is often that members of such marginalized communities take recourse to covert and ritualistic forms of resistance to work, to survive, and to stay free of HIV infection.
Many methodological approaches have been used to understand cultural dimensions to maternal health issues. Although a well-designed quantitative survey with a representative sample can provide essential information on trends in behavior, it does not necessarily establish a contextualized understanding of the complexity in which different behaviors occur. This article addresses how contextualized data can be collected in a short time and under conditions in which participants in conflict-affected zones might not have established, or time to establish, trust with the researchers. The solution, the Participatory Ethnographic Evaluation and Research (PEER) approach, is illustrated through a study whereby South Sudanese marginalized women were trained to design research instruments, and collect and analyze qualitative data. PEER overcomes the problem that many ethnographic or participatory approaches face—the extensive time and resources required to develop trusting relationships with the community to understand the local context and the social networks they form.
To understand health, research needs to move outside of controlled research settings into the environments where health activities occur—homes, streets, and neighborhoods. I offer the docent method as a qualitative place-based approach for exploring health in a participant-driven, structured, and flexible way. The docent method is a participant-led, audiotaped, and photographed walking interview through broad "sites of interest" (SOIs). It is rooted in grounded theory and influenced by community-based participatory research and walking interviews. The three stages of the docent method involve: (a) a warm-up interview focusing on positionality, participant background, and mapping/planning SOIs; (b) a participant-led, photographed walking interview to and around the SOI; and (c) a wind-down interview in the community. I describe the methodological influences, development, and procedures of the docent method drawing from my own experiences conducting it with formerly homeless women living in permenant supportive housing in the Tenderloin neighborhood of San Francisco.
Addiction treatment centers often fail to involve families in treatment. The aim of the present study was to explore the challenges that Greek mental health professionals encounter in their work with parents of drug and alcohol abusers. A qualitative study design was adopted, and five focus group discussions were conducted with 27 drug and alcohol professionals. The thematic analysis of their accounts revealed the key difficulties that professionals encounter in their collaboration with parents that included parental lack of involvement or over-engagement in treatment, unrealistic expectations, ambivalence or opposition to change, ethical dilemmas, and alliance issues, as well as collaboration challenges among therapists. Findings highlight the challenges of a family approach in the treatment of addiction, and underscore the value of clinical supervision in addition to specialized training, to help professionals work on their anxiety, anger, guilt, prejudices, and deception, when engaging parents in the treatment of their addicted child.
New interventions to reduce HIV and sexually transmitted infections (STI) among female sex workers are introduced into the context of women’s existing prevention beliefs and practices. These indigenous practices affected implementation of our program to introduce female condoms to women in sex-work establishments in southern China. We used ethnographic field observations and in-depth interviews to document common prevention methods women reported using to protect themselves before and during intervention implementation. Individual, sex-work establishment, and other contextual factors, including sources of information and social and economic pressures to use or reject prevention options, shaped their perceptions and selection of these methods and affected adoption of female condoms as an additional tool. Efforts to improve uptake of effective prevention methods among low-income sex workers require attention to the context and spectrum of women’s HIV/STI prevention practices when introducing innovations such as female condoms, microbicides, pre-exposure prophylaxis pills, and others, as they become available.
Many children consume more sugar than is recommended, and caregivers often find it difficult to change this habit once established. This thematic synthesis aims to identify the "critical situations" where caregivers may be more likely to offer infants sugary drinks and snacks. This thematic synthesis is reported in accordance with the statement for enhancing transparency in reporting the synthesis of qualitative research (ENTREQ). Our confidence in the findings of our synthesis was assessed using the CERQual (Confidence in the Evidence From Reviews of Qualitative Research Approach). We included 16 studies from the United States, the United Kingdom, Australia, and Denmark. We identified eight "critical situations" when caregivers may be more likely to offer sugary drinks and snacks to infants. Interventions that seek to reduce sugar intake for caries prevention in infants and young children may be more successful if they provide caregivers with practical parenting strategies to replace the nonnutritive functions of sugary foods and drinks, as opposed to taking an information-giving approach.
Chronic illness is a global issue of escalating importance. While prevention, control, and management of chronic disease are imperative, it is also critical to shift our focus away from illness and toward living. In particular, attention needs to focus on living well despite illness. This article reports a grounded theory study with 43 members from 17 families who perceived they were managing well with serious chronic illnesses. The theory that captures the circular, iterative healing process of moving on is comprised of five phases: the fight, accepting, living with the chronic illness, sharing the experience, and reconstructing life. Families moved on through the process and moved on over time toward healing where they lived well alongside chronic illness. Family issues associated with each phase are identified as well as implications for health care providers. The theory provides a way of conceptualizing wellness in illness that supports patient- and family-centered care.
People with mental illnesses face the dilemma of whether to disclose or conceal their diagnosis, but this dilemma was scarcely researched. To gain in-depth understanding of this dilemma, we interviewed 29 individuals with mental illnesses: 16 with major depression/bipolar disorders and 13 with schizophrenia. Using a phenomenological design, we analyzed individuals’ experiences, decision-making processes, and views of gains and costs regarding concealment and disclosure of mental illness. We found that participants employed both positive and negative disclosure/concealment practices. Positive practices included enhancing personal recovery, community integration, and/or supporting others. Negative practices occurred in forced, uncontrolled situations. We also identified various influencing factors, including familial norms of sharing, accumulated experiences with disclosure, and ascribed meaning to diagnosis. Based on these findings, we deepen the understanding about decision-making processes and the consequences of disclosing or concealing mental illness. We discuss how these finding can help consumers explore potential benefits and disadvantages of mental illness disclosure/concealment occurrences.
This article aims to identify and critically assess qualitative intervention studies of rehabilitation processes that target young adults. By applying a meta-epistemological approach inspired by the works of Michel Foucault and Julia Kristeva, we examine how the included studies present qualitative knowledge and whether they adhere to their own stated principles of qualitative knowledge. Through their stated aims and theoretical framing, the articles draw attention to individual processes of meaning making. Nonetheless, we find that the articles to a great extent emphasize frequencies of the qualitative data they present. Individual processes and experiences are subject to subdivisions and categorization and transformed into manageable objects of knowledge. In conclusion, these studies, with one important exception, contribute to self-marginalization of the knowledge they themselves promote: They undermine the uniqueness of the qualitative knowledge they proclaim by focusing on frequency and the general patterns and categories encompassing the unique.
Vociferous, shrill, and piercing—the first cry of the newborn infant signals that a new and separate life has begun. Separated from the body of the mother, the newborn cry serves to call for care, support, and protection. Yet, what is it that is expressed in the first cry? Or is the cry not really a matter of expression at all? In what sense may the cry be meaningful? Although we may be able to explain the function of the cry, we are puzzled by the enigma of its meaning. In this study, the science of the first cry is complemented with its physiognomy and genesis. It asks how the primal inceptuality and elemental sensibility of the first cry may be qualitatively explored and understood on the basis of what we have learned from embryology, neonatology, and related medical research. The phenomenological physiology of the first cry of the newborn challenges us to cautiously speculate on its significance for the health sciences, the adult, and the child.
The young adult (YA) cancer community represents an understudied population in interpersonal and health communication scholarship. Through qualitative analysis, this study sought to advance a dark side perspective by exploring the content of messages shared in an online support forum for YAs with cancer. Our findings highlight a variety of complexities YAs face in an online cancer support community, including the light and dark of soliciting support, disclosing to a community, advocacy online, negative sentiment evaluating health care services, and asynchronous communication. Understanding the light and dark nuances involved with participating in an online YA support forum advances a dark side perspective on the scholarly research in health communication that can ultimately help care providers recommend resources and coach YAs to optimally and effectively use and navigate online support groups.
Experiences and constructions of menarche and menstruation are shaped by the sociocultural environment in which women are embedded. We explored experiences and constructions of menarche and menstruation among migrant and refugee women resettled in Sydney, Australia, and Vancouver, Canada. Seventy-eight semistructured individual interviews and 15 focus groups comprised of 82 participants were undertaken with women from Afghanistan, Iraq, Somalia, South Sudan, Sudan, Sri Lanka, and varying South American countries. We analyzed the data using thematic decomposition, identifying the overall theme "cycles of shame" and two core themes. In "becoming a woman," participants constructed menarche as a marker of womanhood, closely linked to marriage and childbearing. In "the unspeakable," women conveyed negative constructions of menstruation, positioning it as shameful, something to be concealed, and polluting. Identifying migrant and refugee women’s experiences and constructions of menarche and menstruation is essential for culturally safe medical practice, health promotion, and health education.
Incarcerated women face significant barriers to achieve continuous HIV care. We employed a descriptive, exploratory design using qualitative methods and the theoretical construct of agency to investigate participants’ self-reported experiences accessing HIV services in jail, in prison, and post-release in two Alabama cities. During January 2014, we conducted in-depth interviews with 25 formerly incarcerated HIV-positive women. Two researchers completed independent coding, producing preliminary codes from transcripts using content analysis. Themes were developed iteratively, verified, and refined. They encompassed (a) special rules for HIV-positive women: isolation, segregation, insults, food rationing, and forced disclosure; (b) absence of counseling following initial HIV diagnosis; and (c) HIV treatment impediments: delays, interruption, and denial. Participants deployed agentic strategies of accommodation, resistance, and care-seeking to navigate the social world of prison and HIV services. Findings illuminate the "HIV prison paradox": the chief opportunities that remain unexploited to engage and re-engage justice-involved women in the HIV care continuum.
In New Zealand, embryo donation (ED) is "open," allowing offspring to access genetic information. Donors and recipients meet prior to donation. Drawing on interviews with 15 recipients, 22 donors, and nine counselors, this article discusses how ED may be constructed as a form of gifting. This discourse may evoke expectations that recipients will express gratitude for the gift, including through honoring contact agreements. Donation becomes a relational practice of obligations and counter-obligations. However, the gift discourse may not adequately capture the emotional sacrifice experienced by donors. Donors describe significant attachment to their embryos, ambiguity about relinquishment, and interest in offsprings’ welfare. Furthermore, embryos may be constructed as inalienable bodily gifts resulting in children with whom the donors share immutable social ties. A discourse of ED as mutual exchange, collaboration, and extended family building may be more useful to donors and recipients in managing ED.
Bulimia, an eating disorder that affects more women than men, involves binging and compensatory behaviors. Given the importance of food in experiences of these behaviors, in this article, we examine constructions of food in accounts of bulimic behavior: how these constructions relate to cultural discourses, and their implications for subjectivity. Fifteen women who engaged in bulimic behaviors were interviewed. Through a thematic decomposition of their accounts, we identified six discursive constructions of food: "good/healthy" or "bad/unhealthy," "contaminating body and soul," "collapsed into fat," "pleasurable reward," "comfort," and "fuel for the body." Many constructions were consolidated through participants’ embodied experiences, but made available through discourses in public health, biomedicine, and femininity, and had implications for subjectivity in terms of morality, spirituality, and self-worth. Thus, despite women deploying these constructions to make sense of their bulimic behaviors, they are culturally normative; this point has implications for therapeutic and preventive strategies for bulimia.
In this article, we explore how young women encounter and counter discourses of smoking-related stigma. Twenty-seven young Australian women, smokers and ex-smokers, took part in interviews. A sub-sample of 18 participants took photographs to document their smoking experience, and took part in a second interview. Data were analyzed through Foucauldian discourse analysis. Four discourses were identified: "smoking as stigmatized," "the smoking double standard," "smoking as lower class," and "smokers as bad mothers." The women negotiated stigma in a variety of ways, shifting between agreeing, disagreeing, challenging, and displacing stigma onto "other" smokers. These experiences and negotiations of smoking-related stigma were shaped by intersecting identities, including gender, cultural background, social class, and mothering, which at times, compounded levels of stigmatization. It is concluded that tobacco control measures should consider the negative implications of smoking-related stigma, and the potential for women to experience compounding levels of stigma.
Saturation is a core guiding principle to determine sample sizes in qualitative research, yet little methodological research exists on parameters that influence saturation. Our study compared two approaches to assessing saturation: code saturation and meaning saturation. We examined sample sizes needed to reach saturation in each approach, what saturation meant, and how to assess saturation. Examining 25 in-depth interviews, we found that code saturation was reached at nine interviews, whereby the range of thematic issues was identified. However, 16 to 24 interviews were needed to reach meaning saturation where we developed a richly textured understanding of issues. Thus, code saturation may indicate when researchers have "heard it all," but meaning saturation is needed to "understand it all." We used our results to develop parameters that influence saturation, which may be used to estimate sample sizes for qualitative research proposals or to document in publications the grounds on which saturation was achieved.
Community-based participatory research and decolonizing research share some recommendations for best practices for conducting research. One commonality is partnering on all stages of research; co-developing methods of data analysis is one stage with a deficit of partnering examples. We present a novel community-based and developed method for analyzing qualitative data within an Indigenous health study and explain incompatibilities of existing methods for our purposes and community needs. We describe how we explored available literature, received counsel from community Elders and experts in the field, and collaboratively developed a data analysis method consonant with community values. The method of analysis, in which interview/story remained intact, team members received story, made meaning through discussion, and generated a conceptual framework to inform intervention development, is detailed. We offer the development process and method as an example for researchers working with communities who want to keep stories intact during qualitative data analysis.
In this article, we analyze the research experiences associated with a longitudinal qualitative study of residents’ care networks in assisted living. Using data from researcher meetings, field notes, and memos, we critically examine our design and decision making and accompanying methodological implications. We focus on one complete wave of data collection involving 28 residents and 114 care network members in four diverse settings followed for 2 years. We identify study features that make our research innovative, but that also represent significant challenges. They include the focus and topic; settings and participants; scope and design complexity; nature, modes, frequency, and duration of data collection; and analytic approach. Each feature has methodological implications, including benefits and challenges pertaining to recruitment, retention, data collection, quality, and management, research team work, researcher roles, ethics, and dissemination. Our analysis demonstrates the value of our approach and of reflecting on and sharing methodological processes for cumulative knowledge building.
While much has been said about the risks and safety issues experienced by female sex workers in India, there is a considerable dearth of information about the difficulties and problems that sex work researchers, especially female researchers, experience when navigating the highly political, ideological, and stigmatized environment of the Indian sex industry. As noted by scholars, there are several methodological and ethical issues involved with sex work research, such as privacy and confidentiality of the participants, representativeness of the sample, and informed consent. Yet, there has been reluctance among scholars to comment on their research process, especially with regard to how they deal with the protocols for research ethics when conducting social and behavioral epidemiological studies among female sex workers in India and elsewhere. Drawing on my 7 months of field-based ethnographic research with "flying" or non-brothel-based female sex workers in Kolkata, India, I provide in this article a reflexive account of the problems encountered in implementing the research process, particularly the ethical and safety issues involved in gaining access and acceptance into the sex industry and establishing contact and rapport with the participants. In doing so, it is my hope that future researchers can develop the knowledge necessary for the design of ethical and non-exploitative research projects with sex workers.
Concussions are a type of traumatic injury caused by a jolting of the brain that disrupts normal brain function, and multiple concussions can lead to serious long-term health consequences. In this article, we examine the relationship between college students’ understanding of concussions and their willingness to continue playing despite the possibility of sustaining multiple head injuries. We use a mixed-methods approach that includes participant observation, cultural domain analysis, and structured interviews. Our research finds that students hold a robust cognitive understanding of concussion yet discursively frame concussions as skeletomuscular injuries. More importantly, students affirm the importance of playing sports for themselves and others, so their decisions to risk multiple concussions must be understood within cultural and biocultural contexts of meaningful social play. We suggest that peoples’ decision to risk multiple head injuries should be understood as a desire for meaningful social play rather than an uninformed health risk.
Lack of awareness among paid carers of the possible late-life consequences of early-life periods of extreme and prolonged traumatization may have negative impacts on the experiences of trauma survivors in receiving care. An interpretive phenomenological approach was used to investigate the lived experience of paid carers in providing care for Jewish Holocaust survivors. In total, 70 carers participated in 10 focus group discussions. Credibility of the findings was ensured by methodological triangulation and peer debriefing. Three major themes emerged: (a) knowing about survivors’ past helps me make sense of who they are, (b) the trauma adds an extra dimension to caregiving, and (c) caring for survivors has an emotional impact. Specific knowledge, attitudes, and skills for building positive care relationships with Holocaust survivors were identified. The findings offer a starting point for advancing knowledge about the care of older survivors from other refugee backgrounds.
The Patient-Centered Outcomes Research Institute (PCORI), created to fund research guided by patients, caregivers, and the broader health care community, offers a new research venue. Many (41 of 50) first funded projects involved qualitative research methods. This study was completed to examine the current state of the science of qualitative methodologies used in PCORI-funded research. Principle investigators participated in phenomenological interviews to learn (a) how do researchers using qualitative methods experience seeking funding for, implementing and disseminating their work; and (b) how may qualitative methods advance the quality and relevance of evidence for patients? Results showed the experience of doing qualitative research in the current research climate as "Being a bona fide qualitative researcher: Staying true to research aims while negotiating challenges," with overlapping patterns: (a) researching the elemental, (b) expecting surprise, and (c) pushing boundaries. The nature of qualitative work today was explicitly described and is rendered in this article.
Photovoice and photo-elicitation are two common methods of participant photography used in health research. Although participatory photography has many benefits, this critical reflection provides fellow researchers with insights into the methodological and ethical challenges faced when using such methods. In this article, we critically reflect on two studies that used participatory photography in different cultural contexts. The first study used photo-elicitation to investigate mothers’ experiences of infant settling in central Vietnam. The second study used photovoice to explore pregnant embodiment in Australia. Following a discussion of the literature and a detailed overview of the two studies, we examine the methodological challenges in using participant photography before, during and after each study. This is followed by a discussion of ethical concerns that arose in relation to the burden of participation, confidentiality, consent, and the photographing of families and children. To conclude, we highlight implications for using participatory photography in other settings.
In this article, I explore the experience of recovery from a heart attack through an analytic autoethnography. I discuss the tensions inherent in biomedical subjectivities of health and ill-health during cardiac recovery through three key themes: (a) the transfer of responsibility and becoming a subject "at risk," (b) technologies of biomedicine and the disciplining of subjectivities, and (c) the transformation of a body toward a new pharmaceuticalized bodily normal. Through an analysis driven by the biomedicalization thesis of Clarke, alongside work on biopower and the governmentality of health by Foucault, Rose, and Rabinow, I seek to provide new insights into the process of cardiac recovery and the relationship between individual experience and broader socio-political processes. Key to this analysis is a focus on the contingent subjectivities brought into being through biomedicalization that constitute a new form of health citizenship that is otherwise not accounted for in narratives of recovery.
The global increase in refugee migration to urban areas creates challenges pertaining to the promotion of refugee health, broadly conceived. Despite considerable attention to trauma and forced migration, there is relatively little focus on how refugees cope with stressful situations, and on the determinants that facilitate and undermine resilience. This article examines how urban Congolese refugees in Kenya promote psychosocial well-being in the context of structural vulnerability. This article is based on interviews (N = 55) and ethnographic participant observation with Congolese refugees over a period of 8 months in Nairobi in 2014. Primary stressors related to scarcity of material resources, political and personal insecurity, and emotional stress. Congolese refugees mitigated stressors by (a) relying on faith in God’s plan and trust in religious community, (b) establishing borrowing networks, and (c) compartmentalizing the past and present. This research has broader implications for the promotion of urban refugees’ psychosocial health and resilience in countries of first asylum.
The delayed uptake of the human papillomavirus (HPV) vaccine offers an opportunity to explore how temporality and risk are at work in everyday life. Drawing from a mixed-methods study with parents (N = 50) in Northern California, this study explored parents’ decision to delay HPV vaccination for their children among parents who had not yet vaccinated (n = 27). At the core of these decisions were temporal assessments of risk whereby parents weighed their child’s (perceived) present risk of HPV exposure against the uncertain perceived risks of the vaccine itself. Our findings are promising as they indicate that given time, and the continued growth of evidence regarding the safety and effectiveness of HPV vaccination, completion rates should increase. However, our results also suggest that vaccination delays are not merely a matter of scientific doubt but also based on parents’ (potentially inaccurate) perceptions of their child’s sexual readiness, and thus potentially more difficult to overcome.
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.
Through routine screenings for sexually transmitted infections (STIs) and HIV, medical providers are able to motivate behavior change. Although established models rely on quantitative measures, doing so requires time and ability to score each. Listening for verbal cues, however, could simplify the process of suggesting HIV screenings. Using mixed methods to identify verbal indicators for readiness to change, this article conducted two phases of study. First using quantitative means of identifying participant’s knowledge of HIV, perceptions of safer sex, and readiness to change safer sex behaviors (N = 487). Interviews were then conducted exploring the possibility of verbal markers for one’s readiness to change (n = 25). Results confirmed the use of verbal markers when discussing perceptions of risk. Identification of verbal markers, at three stages of change, provides new possibilities for medical providers’ such as providing time saving and effective tools when seeking to motivate HIV and STI testing, and other safer sex behaviors.
Despite increasing prominence, little is known about the cognitive processes underlying shared decision making. To investigate these processes, we conceptualize shared decision making as a form of distributed cognition. We introduce a Decision Space Model to identify physical and social influences on decision making. Using field observations and interviews, we demonstrate that patients and physicians in both acute and chronic care consider these influences when identifying the need for a decision, searching for decision parameters, making actionable decisions Based on the distribution of access to information and actions, we then identify four related patterns: physician dominated; physician-defined, patient-made; patient-defined, physician-made; and patient-dominated decisions. Results suggests that (a) decision making is necessarily distributed between physicians and patients, (b) differential access to information and action over time requires participants to transform a distributed task into a shared decision, and (c) adverse outcomes may result from failures to integrate physician and patient reasoning. Our analysis unifies disparate findings in the medical decision-making literature and has implications for improving care and medical training.
Most women in prison are poor and suffer from health problems prior to and during incarceration. Policies that impose inmate medical co-payment fees do not consider gender-specific health needs or other financial stressors faced by women in prison. We examine the financial needs and concerns of incarcerated women through the lens of gender and behavioral economics. We conducted individual interviews with 95 women incarcerated in a medium/maximum security prison in the United States. Women described several common financial stressors during confinement: paying for medical care, "working for pennies," staying in contact with loved ones, and relying on others. In an attempt to remain gender neutral, prison polices often do not consider gender-based differences between male and female prisoners. When gender neutrality is applied to financial policies surrounding access to healthcare, incarcerated women are profoundly disadvantaged and left to make consequential trade-offs with scarce financial resources. Our findings provide important insight into financial stressors facing incarcerated women and provide evidence to support the elimination of mandatory medical co-payment fees for incarcerated women.
Using an example of qualitative research embedded in a non-surgical feasibility trial, we explore the benefits of including qualitative research in trial design and reflect on epistemological challenges. We interviewed 18 trial participants and used methods of Interpretive Phenomenological Analysis. Our findings demonstrate that qualitative research can make a valuable contribution by allowing trial stakeholders to see things from alternative perspectives. Specifically, it can help to make specific recommendations for improved trial design, generate questions which contextualize findings, and also explore disease experience beyond the trial. To make the most out of qualitative research embedded in quantitative design it would be useful to (a) agree specific qualitative study aims that underpin research design, (b) understand the impact of differences in epistemological truth claims, (c) provide clear thematic interpretations for trial researchers to utilize, and (d) include qualitative findings that explore experience beyond the trial setting within the impact plan.
End-of-life care studies on the nature of personhood are bourgeoning; however, the practices utilized for achieving personhood in end-of-life care, particularly in a cultural context in which interdependent being and collectivism prevail, remain underexplored. This study seeks to examine and conceptualize good practices for achieving the personhood of the dying elderly in residential care homes in a Chinese context. Twelve interviews were conducted with both medical and social care practitioners in four care homes to collect narratives of practitioners’ practices. Those narratives were utilized to develop an "end-of-life case graph." Constant comparative analysis led to an understanding of the practice processes, giving rise to a process model of "solving the personhood jigsaw puzzle" that includes "understanding the person-in-relationship and person-in-time," "identifying the personhood-inhibiting experiences," and "enabling personalized care for enhanced psychosocial outcomes." Findings show how the "relational personhood" of the elderly can be maintained when physical deterioration and even death are inevitable.
Abortion providers work in an environment characterized by the stresses of the helping professions as well as by the marginalization and devaluation that accompany work in a stigmatized field. We created the Providers Share Workshop (PSW), a five-session workshop carried out at seven abortion care sites around the United States, to support workers and better understand the complexities of working in abortion care. Qualitative analysis suggests that the experience of participating in the workshop fosters connection, and that the group process creates unique data about the abortion care team. Taken together, these results show that PSW fulfills the dual role of a supportive group intervention—helping create connections and foster resilience—and a research tool, producing rich, multi-perspective narratives of the abortion provision team. This method provides useful insight into supporting abortion care workers specifically, and may also prove useful in the study and support of other stigmatized workers generally.
This meta-synthesis aimed to improve understanding of user experience of older people, carers, and health providers; and care integration in the care of older people transitioning from hospital to home. Following our systematic search, we identified and synthesized 20 studies, and constructed a comprehensive framework. We derived four themes: (1) ‘Who is taking care of what? Trying to work together"; (2) ‘Falling short of the mark’; (3) ‘A proper discharge’; and (4) ‘You adjust somehow.’ The themes that emerged from the studies reflected users’ experience of discharge and transitional care as a social process of ‘negotiation and navigation of independence (older people/carers), or dependence (health providers).’ Users engaged in negotiation and navigation through the interrogative strategies of questioning, discussion, information provision, information seeking, assessment, and translation. The derived themes reflected care integration that facilitated, or a lack of care integration that constrained, users’ experiences of negotiation and navigation of independence/dependence.
Research indicates that there are worryingly low levels of physical activity among South Asians compared with Anglo-Australians with type 2 diabetes and/or cardiovascular disease (CVD). We compared perceptions, barriers, and enablers of physical activity in these groups. We used a qualitative design, conducting in-depth, semistructured iterative interviews in Victoria with 57 South Asian and Anglo-Australian participants with either type 2 diabetes or CVD. While both groups exhibited knowledge of the value of physical activity in health maintenance and disease management, they wished for more specific and culturally tailored advice from clinicians about the type, duration, and intensity of physical activity required. Physical activity identities were tied to ethnic identities, with members of each group aspiring to meet the norms of their culture regarding engagement with physical activity as specific exercise or as incidental exercise. Individual personal exercise was deemed important by Anglo-Australians whereas South Asians preferred family-based physical activity.
Despite attention paid to substance use during pregnancy, understandings of young Aboriginal women’s experiences based on their perspectives have been virtually absent in the published literature. This study’s objective was to understand the life experiences of pregnant-involved young Aboriginal women with alcohol and drugs. Semi-structured interviews to gather life histories were conducted with 23 young Aboriginal women who had experiences with pregnancy, and alcohol and drug use. Transcribed interviews were analyzed for themes to describe the social and historical contexts of women’s experiences and their self-representations. The findings detail women’s strategies for survival, inner strength, and capacities for love, healing, and resilience. Themes included the following: intersectional identities, life histories of trauma (abuse, violence, and neglect; intergenerational trauma; separations and connections), the ever-presence of alcohol and drugs, and the highs and lows of pregnancy and mothering. The findings have implications for guiding policy and interventions for supporting women and their families.
Community-based participatory research has been seen to hold great promise by researchers aiming to bridge research and action in global health programs and practice. However, there is still much debate around whether achieving authenticity in terms of in-depth collaboration between community and academic partners is possible while pursuing academic expectations for quality. This article describes the community-based methodology for a qualitative study to explore intimate partner violence and HIV/AIDS among women in sex work, or female sex workers, and their male partners in Karnataka, South India. Developed through collaborative processes, the study methodology followed an interpretive approach to qualitative inquiry, with three key components including long-term partnerships, knowledge exchange, and orientation toward action. We then discuss lessons learned on how to pursue authenticity in terms of truly collaborative processes with inherent value that also contribute to, rather than hinder, the instrumental goal of enhancing the quality and relevance of the research outcomes.
The ways in which social scientists conceptualize the "reflexive" human subject have important consequences for how we go about our research. Whether and how we understand human subjects to be the authors of our own actions helps to structure what we say about health, health care, and the many other topics addressed in qualitative health research. In this article, I critically discuss assumptions of human reflexivity that are built into qualitative social science of health and medicine. I describe three alternative ways of understanding reflexive thought and human action derived from the theoretical works of Pierre Bourdieu, Bruno Latour, and George Lakoff and Mark Johnson, respectively. I then apply these three different ways of thinking about reflexivity and the acting subject to the analysis of an excerpt of participant observation data from a health services research study of transitions from hospital to home, illuminating the different kinds of analyses that arise from each perspective. I conclude with a call for social scientists to commit to the search for better ways of understanding the human subject, resisting the temptation to "settle" on theoretical statements that close down the path to more sophisticated conceptualizations of human thought and action.
Effectively addressing wicked health problems, that is, those arising from complex multifactorial biological and socio-economic causes, requires transdisciplinary action. However, a significant body of research points toward substantial difficulties in cultivating transdisciplinary collaboration. Accordingly, this article presents the results of a study that adapts Systems Ethnography and Qualitative Modeling (SEQM) in response to wicked health problems. SEQM protocols were designed to catalyze transdisciplinary responses to national defense concerns. We adapted these protocols to address cancer–obesity comorbidity and risk coincidence. In so doing, we conducted participant-observations and interviews with a diverse range of health care providers, community health educators, and health advocacy professionals who target either cancer or obesity. We then convened a transdisciplinary conference designed to catalyze a coordinated response. The findings offer productive insights into effective ways of catalyzing transdisciplinarity in addressing wicked health problems action and demonstrate the promise of SEQM for continued use in health care contexts.
Despite considerable progress within wilderness and adventure therapy research over the last decade, researchers are still unable to precisely answer why, how, and for whom this treatment modality works. There is also a need for more knowledge regarding the circumstances under which the treatment does not appear to be effective. In this realist synthesis, we attempt to unpack this "black box" of wilderness therapy more specifically, defined as a specialized approach to mental health treatment for adolescents. Through a focused review of the primary qualitative wilderness therapy studies, empirical findings are used to test and refine a key program theory. The synthesis results in a proposed wilderness therapy clinical model and offers informed implications for future theory development, research, and practice.
Hermeneutic phenomenology, as a methodology, is not fixed. Inherent in its enactment are contested areas of practice such as how interview data are used and reported. Using philosophical notions drawn from hermeneutic phenomenological literature, we argue that working with crafted stories is congruent with the philosophical underpinnings of this methodology. We consider how the practical ontic undertaking of story crafting from verbatim transcripts is integral with the interpretive process. We show how verbatim transcripts can be crafted into stories through examples taken from interview data. Our aim is to open dialogue with other hermeneutic phenomenological researchers and offer alternate possibilities to conventional ways of work with qualitative data. We argue that crafted stories can provide glimpses of phenomena that other forms of data analysis and presentation may leave hidden. We contend that crafted stories are an acceptable and trustworthy methodological device.
The trustworthiness of results is the bedrock of high quality qualitative research. Member checking, also known as participant or respondent validation, is a technique for exploring the credibility of results. Data or results are returned to participants to check for accuracy and resonance with their experiences. Member checking is often mentioned as one in a list of validation techniques. This simplistic reporting might not acknowledge the value of using the method, nor its juxtaposition with the interpretative stance of qualitative research. In this commentary, we critique how member checking has been used in published research, before describing and evaluating an innovative in-depth member checking technique, Synthesized Member Checking. The method was used in a study with patients diagnosed with melanoma. Synthesized Member Checking addresses the co-constructed nature of knowledge by providing participants with the opportunity to engage with, and add to, interview and interpreted data, several months after their semi-structured interview.
Patient perspectives were explored on the meaning and experience of antidepressant use by applying Johan Huizinga’s theory of play to interviews from Indian Australians and Anglo-Australians diagnosed with depression. Through the analysis, the centrality of Huizinga’s "magic circle" emerged, that is, defining the boundaries within which one could safely play. Consumption of antidepressants involved learning, breaking, and modulating rules of the game of adherence, then forging a new "magic circle." In these games, there were playful elements including experimentation, improvisation, absorption, and experiential learning. This application of Huizinga’s theory in relation to antidepressant use is a novel approach in the literature on medication non/adherence. This application not only opens a new theoretical line of inquiry but also shows that antidepressant non/adherence is not a static practice but dynamic and changing, revealing critical insights around participant’s agency, capabilities, desires, and notions of selfhood with regard to managing their depression and conceptualizing their recovery.
Patients’ low adherence to medical treatment in chronic illnesses is one of the biggest public health problems. Numerous studies attend to the diverse factors associated with patient adherence. However, little research has been done to explore patients’ reasons for non-compliance from their own point of view. In this article, we aim to understand patient non-adherence using dialogical self-theory and qualitative research methods. We interviewed 51 hypertensive patients to explore their anti- and pro-adherence motivations. Results show that most patients adhere and non-adhere to different aspects of treatment programs (medication, exercise, diet) according to the way they construct meaning to those activities. Also, our findings support the notion that patients’ non-adherent behavior aims to preserve important values such as self-esteem, autonomy, affiliation, well-being, freedom, and health (or that more adherence is not worth the extra effort). We discuss the therapeutic relevance of empathically understanding patients’ worldview and implicit beliefs.
The study discusses the stigma experiences of service users in mental health care, within the debate on the role of the biomedical framework for mental health care and power relations in society. Interview data of inpatient users (n = 42) and care providers (n = 43) from two Belgian psychiatric hospitals were analyzed using a constructivist grounded theory approach: Findings offer insight into how stigma experiences are affected by social structure. Stigma seemed to be related to the relation between care providers and service users their social position. The concept "mental health literacy" is used to frame this finding. In paying attention to the specific cultural and normative context, which influences the relationship between mental health literacy and stigma, it is further possible to cast some light on the meaning of the biomedical model for the construction and maintenance of power relations in mental health care and broader society.
According to the dual process model of reasoning, physicians make diagnostic decisions using two mental systems: System 1, which is rapid, unconscious, and intuitive, and System 2, which is slow, rational, and analytical. Currently, little is known about physicians’ use of System 1 or intuitive reasoning in practice. In a qualitative study of clinical reasoning, physicians were asked to tell stories about times when they used intuitive reasoning while working up an acutely unwell patient, and we combine socio-narratology and rhetorical theory to analyze physicians’ stories. Our analysis reveals that in describing their work, physicians draw on two competing narrative structures: one that is aligned with an evidence-based medicine approach valuing System 2 and one that is aligned with cooperative decision making involving others in the clinical environment valuing System 1. Our findings support an understanding of clinical reasoning as distributed, contextual, and influenced by professional culture.
This article explores the relationship between cancer survivors’ use of self-management practices and their search for normality. Using Frank’s illness narratives and other theoretical literature on normality in chronic illness, it draws on findings from a qualitative study to explore different ways cancer survivors use self-management practices to re-establish normality in their lives post-cancer. The findings suggest that "normality" represents different things to cancer survivors. We suggest that normality in survivorship is not a static concept but is fluid, and at certain times, cancer survivors may display some or all of these different versions of normality. The findings show that self-management practices can help cancer survivors experiment with different health and lifestyle processes to help support their "normal" daily lifestyle activities, quality of life, and well-being.
Case study research is a comprehensive method that incorporates multiple sources of data to provide detailed accounts of complex research phenomena in real-life contexts. However, current models of case study research do not particularly distinguish the unique contribution observation data can make. Observation methods have the potential to reach beyond other methods that rely largely or solely on self-report. This article describes the distinctive characteristics of case study observational research, a modified form of Yin’s 2014 model of case study research the authors used in a study exploring interprofessional collaboration in primary care. In this approach, observation data are positioned as the central component of the research design. Case study observational research offers a promising approach for researchers in a wide range of health care settings seeking more complete understandings of complex topics, where contextual influences are of primary concern. Future research is needed to refine and evaluate the approach.
This study evaluated the outcomes and impact of a post-earthquake rehabilitation program in Sichuan, China. A case-study approach was adopted to conduct an in-depth examination of the program. The results show that the program effectively enhanced the functional outcomes of earthquake survivors. However, the empowerment of earthquake survivors with disabilities requires further consideration, and the local community’s ownership of the program must also be addressed. A combination of institution- and community-based approaches was advocated in developing the post-earthquake rehabilitation program to enhance its impact on the local community.
Survivors of human trafficking who return to their community of origin must cope with the trauma they experienced as victims as well as the conditions that contributed to their trafficking vulnerabilities. In this article, I examine the psychosocial adjustment process among women survivors of trafficking who returned to Vietnam. Supplemented by participation observation, thematic analysis of in-depth interviews with survivors revealed that throughout the trafficking process, the women experienced multiple abuses and changes in relationships and environments. The women coped by navigating a process of "reconstructing a sense of self," seeking congruence between their self-understandings and the changing contextual factors while exhibiting three main coping strategies: regulating emotional expression and thought, creating opportunities within constraints, and relating to cultural schemas. The findings underscore the importance of considering contextual factors such as cultural norms and societal values in efforts to assist trafficked survivors reintegrate into their communities.
Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled "The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life" was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process. Findings indicated that guilt surrounding transfers escalated during the initial stages of the transfer but was mitigated by achieving what family members deemed as a "good" death when relatives were receiving hospice care. The findings of this interpretative approach provide new insights into family-focused perspectives in care transfers of the dying.
Digital storytelling (DST) engages participants in a group-based process to create and share narrative accounts of life events. We present key evaluation findings of a 2-year, mixed-methods study that focused on effects of participating in the DST process on young Puerto Rican Latina’s self-esteem, social support, empowerment, and sexual attitudes and behaviors. Quantitative results did not show significant changes in the expected outcomes. However, in our qualitative findings we identified several ways in which the DST made positive, health-bearing effects. We argue for the importance of "measuring down" to reflect the locally grounded, felt experiences of participants who engage in the process, as current quantitative scales do not "measure up" to accurately capture these effects. We end by suggesting the need to develop mixed-methods, culturally relevant, and sensitive evaluation tools that prioritize process effects as they inform intervention and health promotion.
Distributed cognition occurs when cognitive and affective schemas are shared between two or more people during interpersonal discussion. Although extant research focuses on distributed cognition in decision making between health care providers and patients, studies show that caregivers are also highly influential in the treatment decisions of patients. However, there are little empirical data describing how and when families exert influence. The current article addresses this gap by examining decisional support in the context of cancer randomized clinical trial (RCT) decision making. Data are drawn from in-depth interviews with rural, Appalachian cancer patients (N = 46). Analysis of transcript data yielded empirical support for four distinct models of health decision making. The implications of these findings for developing interventions to improve the quality of treatment decision making and overall well-being are discussed.
While many health literacy assessments exist, this area of research lacks an instrument that isolates and reflects the four components driving this concept (abilities to find, understand, use, and communicate about health information). The purpose of this study was to determine what abilities comprise the first component, how a patient finds health information. Low (n = 13) and adequate (n = 14) health literacy patients, and health professionals (n = 10) described their experiences when looking for health information and the skills they employed to complete these tasks. Major skills/themes elicited included knowing when to search, credibility assessments, finding text and numerical information, interpersonal seeking, technology and online search, and spatial navigation. Findings from this study suggest that each of the dimensions included in the definition of health literacy warrants specific attention and assessment. Given identification of the skills comprising each dimension, interventions targeting deficits across health literacy dimensions could be developed to improve patient health.
Social science scholarship on cancer has been almost exclusively focused on Organization for Economic Cooperation and Development (OECD) countries, despite a significant epidemiological transition taking place in many non-OECD contexts, with cancer emerging as a prominent, and strongly feared, illness experience. With cancer gaining an increasingly high profile in India, there is an urgent need to explore how experiences of cancer may be socially and culturally embedded, and in turn, how localized practices may shape the therapeutic encounter. Here, drawing on interviews with 40 people living with cancer in Hyderabad, India, we focus on some specific components of their therapeutic journeys, including diagnostic and prognostic disclosure, collective versus individual decision making, the dynamics of medical authority, and the reception of cancer within their social milieu. These participants’ accounts provide insight into a range of cultural sensibilities around illness and care, and reinforce the importance of understanding the cultural inflections of communication, decisions, and illness experiences.
Belonging is linked to a variety of positive health outcomes. Yet this relationship is not well understood, particularly among rural immigrant diasporas. In this article, we explore the experiences of community belonging and wellbeing among a rural Indian-Canadian diaspora in the Interior of British Columbia, Canada, our central research questions being, "What are the experiences of belonging in this community? How does a sense of belonging (or lack of) shape mental health and wellbeing among local residents?" Using a situational analysis research approach, our findings indicate that local residents must navigate several tensions within an overarching reality of finding a space of our own. Such tensions reveal contradictory experiences of tight-knitedness, context-informed notions of cultural continuity, access/acceptability barriers, particularly in relation to rural agricultural living, and competing expectations of "small town" life. Such tensions can begin to be addressed through creative service provision, collaborative decision making, and diversity-informed program planning.
This study explores social workers’ perceptions of inequalities in Israel’s national health care system. Unlike previous studies, which relied on patients’ and practitioners’ reports, it is based on interviews with 60 social workers in hospitals and ambulatory clinics. The findings show that although Israeli law provides for (almost) free, universal medical care, the treatment of persons lacking in money, education, and social affiliation may be compromised by difficulties in paying for medications, treatments, and travel to and from hospital; by difficulties in understanding doctors’ instructions; and by reluctance to ask questions. Most doctors tend to focus exclusively on patients’ medical needs, seem to lack sympathy with less educated patients, have little understanding of the life circumstances that impinge on their compliance, and make little effort to speak to them in the language they can understand. Practical suggestions are made with regard to the need to turn doctors’ attention to their patients’ non-medical needs.
Academics and community members collaborated in research to examine how best to apply ethics guidelines for research involving Indigenous communities in a community with complex and multiple political and cultural jurisdictions. We examined issues of NunatuKavut (Southern Inuit) authority and representation in relation to governance of research in a context where community identity is complex and shifting, and new provincial legislation mandates centralized ethics review. We scrutinize the taken-for-granted assumption of research ethics that community engagement is an unquestionable "good." We examine the question of whether and how research ethics guidelines and associated assumptions about the value of community engagement may be grounded in, and inadvertently reinforce, ongoing colonialist relations of power. We present findings that community engagement—if done uncritically and in service to ethics guidelines rather than in service to ethical research—can itself cause harm by leading to community fatigue, undermining the community’s ability to be effectively involved in the research, and restricting the community’s ability to have oversight and control over research. We conclude by suggesting that the laudable goal of engaging communities in research requires careful reflection on the appropriate use of resources to operationalize meaningful collaboration.
Chronic Obstructive Pulmonary Disease (COPD) is a long-term condition where activities of daily living (ADLs) may be very restricted; people with COPD need to prioritize what is important to them. We conducted a meta-ethnography to understand which ADLs are valued and why, systematically searching for articles including experiences of ADLs and organizing themes from the articles into five linked concepts: (a) caring for the body, (b) caring for the personal environment, (c) moving between spaces, (d) interacting with others, and (e) selfhood across time. In addition, we identified three key aspects of personal integrity: effectiveness, connectedness, and control. We found that ADLs were valued if they increased integrity; however, this process was also informed by gendered roles and social values. People whose sense of control depended on effectiveness often found accepting help very difficult to bear; therefore, redefining control as situational and relational may help enjoyment of activities that are possible.
This qualitative study examined how female breast cancer patients without partners conceptualized their relationship status. Qualitative data were collected from 20 participants who did not have partners during diagnosis and treatment. Phenomenology informed the methodology and thematic analysis. Breast cancer patients without partners discussed how they made meaning of their relationship status within the context of their cancer experience and barriers they faced dating post-diagnosis or treatment. Oncology care providers, public health professionals, and family scientists can use the study results to better understand the specific concerns and experiences of breast cancer patients without partners. Additional implications of these findings for patients, practice, and research are discussed.
Health technology assessment (HTA) agencies increasingly use reviews of qualitative research as evidence for evaluating social, experiential, and ethical aspects of health technologies. We systematically searched three bibliographic databases (MEDLINE, CINAHL, and Social Science Citation Index [SSCI]) using published search filters or "hedges" and our hybrid filter to identify qualitative research studies pertaining to chronic obstructive pulmonary disease and early breast cancer. The search filters were compared in terms of sensitivity, specificity, and precision. Our screening by title and abstract revealed that qualitative research constituted only slightly more than 1% of all published research on each health topic. The performance of the published search filters varied greatly across topics and databases. Compared with existing search filters, our hybrid filter demonstrated a consistently high sensitivity across databases and topics, and minimized the resource-intensive process of sifting through false positives. We identify opportunities for qualitative health researchers to improve the uptake of qualitative research into evidence-informed policy making.
During the progression of a pilot nutrition intervention designed to teach cooking skills to young adults with autism spectrum disorder (ASD), one participant—Paul—fell in the parking lot. Prior to the accident, Paul had been making significant gains in the program and had communicated in a number of ways his enthusiasm. After his accident, which resulted in broken and dislocated bones in his ankle, his demeanor was dramatically altered, program gains were lost, and staff noted the appearance of many new challenging behaviors. This article analyzes Paul’s behavior in reference to the pain response in autism. For some time, it was believed that many individuals with ASD did not experience pain based on anecdotal reports of how individuals responded to injury with seeming indifference. This view has given way of late to a more nuanced understanding of how atypical sensory processing and stimulus over-selectivity spill over into pain pathways and pain amplification mechanisms. The consequence is not a reduction in pain sensation, but a different expression of pain, determined by that individual’s particular communicative, cognitive, or physiological challenges. From this perspective, many of the disruptive and harmful behaviors that emerged after Paul’s accident can be seen as a delayed response to the incident. This article concludes by arguing that professionals across all domains of health care need to begin to see behavior as communicative for those with ASD. This is particularly true of changes in behavior, which can be significant indicators of health care problems rather than something to be dismissed as another manifestation of the condition.
How African American men and women respond to and manage living with coronary heart disease (CHD) is not well understood despite the well-documented disproportionate burden of CHD and its complications among African Americans in the United States. Through a critical interactionist perspective, we explore illness experiences of African Americans living with CHD and describe a broad range of micro-, meso-, and macro-contextual factors that influence their illness experiences. For participants in this study, CHD has become a "Black disease" wherein certain bodies have become historically and racially marked; a conceptualization maintained and passed on by African Americans themselves. Such findings highlight that CHD is more than a "lifestyle disease" where high-risk behaviors and lack of healthy choices are ultimate culprits. Rather, CHD is perceived by African Americans who have it as yet another product of ongoing racial and socio-structural dynamics through which their health burdens are created, sustained, and reproduced.
Although there has been a proliferation of studies on the effectiveness of drug court programs, these studies are largely quantitative in nature. Little is known about the experiences of persons who participate in drug court. In this study, we aimed to fill this knowledge gap by exploring experiences of young adults who completed an adult drug court treatment program. Nine semi-structured interviews were conducted, typed into a word-processing program, and then entered into a data analysis software program. Using grounded theory strategies, analysis revealed several emergent themes, which are presented chronologically to provide a narrative of study participants’ experiences before, during, and after the program. Findings provide insights on how participants perceive drug courts and experiences that might facilitate or impede completion of drug court programs. Our findings are particularly important for drug court professionals as they attempt to develop appropriate recommendations for best practices and new policy initiatives.
Members of racial/ethnic minorities, in contrast to majority groups, experience disparities in stroke risk factors, recognition, evaluation, and treatment. This article describes the use of qualitative methods to examine the cultural and lifestyle appropriateness, clarity of item-wording, comprehension of item intent, and conceptual equivalence of the developed Spanish and the revised English Stroke Action Test (which includes three additional atypical stroke symptoms more common in women). Thirty in-depth cognitive interviews were conducted (10 in Spanish) using concurrent structured probes. The desired ultimate outcome was to obtain conceptually equivalent measures in both languages. Four sources of variability in comprehension were identified: unfamiliar and/or idiosyncratic Spanish words used in translation; phrases in the original (English) and in the literal (Spanish) translation that were not understood; and unclear intended meaning of the original (English) items. Cognitive interviews helped identify problematic items, highlighted potential response errors, and provided insight regarding putative causes for inconsistent interpretation.
Despite the importance and advantages of including people with dementia in research, there are various challenges for researchers and participants to their involvement. This article draws on the literature and experiences of a diverse group of authors, including a person with dementia, to provide recommendations about conducting research with people with dementia. Particular attention is given to in-depth interviews as a qualitative technique. More specifically, topics discussed include interview guide preparation, recruitment, obtaining consent/assent, conducting effective interviews, analysis and interpretation of data, effective communication of research findings, and reflections and recommendations for maintaining researcher and participant health. Given the current obstacles to participation in research of people with dementia, this is a timely article providing useful insights to promote improved outcomes using in-depth interviews.
The objective of this study is to identify patterns (components and processes) of reconstruction of suicide survivors. In-depth interviews were conducted with 50 survivors of suicide in Switzerland. Data were analyzed using ATLAS.ti and according to the Grounded Theory principles. Survivors of suicide face four major challenges: dealing with the impact of suicide, searching for meaning, clarifying responsibility, and finding a personal style of reaction and coping. The various ways in which survivors fare through the specific processes of the challenges result in various patterns of reconstruction: the vulnerability, transformation, commitment, and hard blow. The unique characteristics and dynamics of each of them are highlighted. Health care providers would benefit from an approach based on the dynamics of the various patterns of reconstruction in providing appropriate support to survivors of suicide.
Critical interpretive synthesis is a particular form of systematic review that critically examines the decisions made by authors while conducting and publishing about their research and practices. It differs from empirical syntheses of qualitative research by emphasizing the interpreted and constructed nature of this form of secondary analysis. In this article, we extend previous literature on critical interpretive syntheses by highlighting the integration of emotional responses when developing critical questions for interrogating the literature and interpreting results. Our extension of the critical interpretive synthesis is illustrated through examples from five studies examining literature in our own field of music therapy, as well as related fields of disability studies, mental health, music psychology, and child welfare. The methodology we have refined uses an iterative and recursive method that promotes increased critical awareness of the assumptions driving the production of research in health contexts.
Men experiencing depression may present with externalizing behaviors including avoidance, getting angry, or finding distractions rather than seeking help. General practitioners report that depression is harder to diagnose in men than in women. Research has not typically focused on men’s accounts of depression; thus, the current study uses an exploratory design to better understand men’s subjectivities of depression. A thematic framework informed the analysis of interviews with 10 men who had experienced high levels of depressive symptoms at least once within the prior 5 years, with two overarching discourses of depression discussed. The first relates to links between depression and health, including comorbid illnesses. The second relates to social contexts in which depression is experienced. These findings extend upon previous research suggesting medical practitioners have difficulty with competing biomedical and social discourses of depression, highlighting the importance of continuing to improve understandings of men’s depression discourses.
A quality improvement intervention for maternal and newborn health was carried out in southern Tanzania at the community level. It sought to improve health-seeking behaviors and uptake of community-level maternal and newborn health practices. A process evaluation populated using data primarily from in-depth interviews and focus group discussions with the intervention’s implementers was undertaken in four villages receiving the intervention to evaluate the intervention’s implementation, uncover facilitators and barriers of quality improvement, and highlight contextual factors that might have influenced implementation. Performance implementation scores were used to rank the villages. Identifying higher- and lower-performing villages highlighted key facilitators and barriers of community-level quality improvement related to support from local leaders, motivation through use of local quality improvement data, and regular education around quality improvement and maternal and newborn health. These findings can be taken formatively in the design of similar interventions in the future.
We conducted this study to explore personal accounts of making choices about taking medication prescribed for the treatment of psychosis (neuroleptics). There are costs and benefits associated with continuing and discontinuing neuroleptics. Service users frequently discontinue neuroleptics; therefore, we specifically considered these decisions. We used a grounded theory approach to analyze transcripts from interviews with 12 participants. We present a preliminary grounded theory of the processes involved in making choices about neuroleptic medication. We identified three tasks as important in mediating participants’ choices: (a) forming a personal theory of the need for, and acceptability of taking, neuroleptic medication; (b) negotiating the challenges of forming alliances with others; and (c) weaving a safety net to safeguard well-being. Progress in the tasks reflected a developmental trajectory of becoming an expert over time and was influenced by systemic factors. Our findings highlight the importance of developing resources for staff to facilitate service user choice.
Ex-armed forces personnel represent a potentially vulnerable group within the prison population. To provide support to this group, we need to understand their needs and help-seeking behavior. A focus group with professionals and semi-structured interviews with service users explored perspectives of the treatment barriers faced by this group and their support needs. Data were analyzed using constant comparison methods, and four primary themes were identified. The findings suggest ex-armed forces personnel consider prison an opportunity to access support but find it difficult to ask for help. Staff having an awareness of military issues was thought to encourage help-seeking, but the variability of provision across prison establishments was considered a barrier. Resettlement was a prominent concern, and access to support when preparing for, and after, release was felt by all participants to be important. Implications for the provision of support in prison are discussed along with recommendations for practice.
Experiences of cancer are enmeshed with cultural understandings and social discourses around responsibility and causation. A cancer diagnosis can raise questions about its causation—including the role of the individual—whereas the disease and its treatment provide various social markers of illness. We present a sociological study of 81 women’s accounts of living with cancer, with a focus on how women interpret their illness, in light of their interpersonal interactions and accounts of social relations. Our analysis reveals women’s experiences of cancer diagnosis and treatment, the varied sociocultural meanings of cancer and the responses it elicits, the presence of moral assessments within everyday interactions, and the implications for the support and care they receive. We argue that the experience of cancer should be seen as intimately interwoven with its social reception and cultural sense-making practices, including normative constructs which promote ideas about (in)justice, responsibilization, and shame.
Undertaking philosophically hermeneutic research requires embodying the fundamental hermeneutic notions espoused by Heidegger, Gadamer, and other related philosophers. For both supervisors and students, there is "a way" of working that infuses a hermeneutic project with a particular kind of contemplative openness. In this article, I will draw from my own experience of coming to appreciate the nature of this approach. Reading Gadamer challenged me to see that, before interpreting the meanings inherent in research data, I first needed to grapple with the fact that I brought ready-made prejudices to the interpretation. Further, and perhaps more importantly, was the recognition that while prejudices may have a negative influence, they could also bring a positive view. Just as I needed to understand key Gadamerian notions to shed light on the interpretive nature of philosophical hermeneutics, I will unpack these to underpin the ongoing discussion of hermeneutic research strategies. In articulating "how" to be hermeneutic, I explain how I guide students embarking on hermeneutic research. Discussion centres on surfacing and engaging with preunderstandings through ‘presuppositions interviewing‘, journalling and the careful selection of words that refine and crystallise meanings in ways that reflectively and reflexively engage and expand horizons of understanding. In this article, I use examples from my own experience as a doctoral student and supervisor of doctoral students to assist other supervisors and students understand both the importance of "being hermeneutic" and ways of achieving robust and philosophically congruent hermeneutic research.
A model is proposed for supporting reflexivity in qualitative health research, informed by arguments from Bourdieu and Finlay. Bourdieu refers to mastering the subjective relation to the object at three levels—the overall social space, the field of specialists, and the scholastic universe. The model overlays Bourdieu’s levels of objectivation with Finlay’s three stages of research (pre-research, data collection, and data analysis). The intersections of these two ways of considering reflexivity, displayed as cells of a matrix, pose questions and offer prompts to productively challenge health researchers’ reflexivity. Portraiture is used to show how these challenges and prompts can facilitate such reflexivity, as illustrated in a research project.
We explored health professionals’ views of implementing a systematic voiding program (SVP) in a multi-site qualitative process evaluation in stroke services recruited to the intervention arms of a cluster randomized controlled feasibility trial during 2011-2013. We conducted semi-structured group or individual interviews with 38 purposively selected nursing, managerial, and care staff involved in delivering the SVP. Content analysis of transcripts used normalization process theory (NPT) as a pre-specified organization-level exploratory framework. Barriers to implementing the SVP included perceived lack of suitability for some patient groups, patient fear of extending hospital stay, and difficulties with SVP enactment, scheduling, timing, recording, and monitoring. Enablers included the guidance provided by the SVP, patient and relative involvement, extra staff, improved nursing skill and confidence, and experience of success. Three potential mechanisms of consistency, visibility, and individualization linked the SVP process with improvements in outcome, and should be emphasized in SVP implementation.
The objective of this study was to develop a substantive grounded theory of staff psychosocial intervention use with residents with dementia in long-stay care. "Becoming a person again" emerged as the core category accounting for staffs’ psychosocial intervention use within long-stay care. Interview data were collected from participants in nine Irish long-stay settings: 14 residents with dementia, 19 staff nurses, one clinical facilitator, seven nurse managers, 21 nursing assistants, and five relatives. Constant comparative method guided the data collection and analysis. The researcher’s theoretical memos, based on unstructured observation, and applicable extant literature were also included as data. By identifying the mutuality of the participants’ experiences, this classic grounded theory explains staff motivation toward psychosocial intervention use within long-stay care. It also explains how institutional factors interact with those personal factors that incline individuals toward psychosocial intervention use.
Suicide is a global health concern, though little is known about the social practices that might support those who are contemplating suicide. Online forums provide a unique insight into the anonymous discussion of suicide, including sociocultural norms about suicide and the delicate management of online interaction. In this article, we examine the provision and acknowledgment of support in an online discussion forum about suicide, using discursive psychology to analyze the textual interaction. The analysis illustrates how forum threads function as case studies and enable members to gain support on numerous occasions. In this way, members can gain help at crisis points as and when these occur, while still maintaining authenticity as a valid forum member. The analysis also provides additional evidence for models of suicide which highlight the fluid nature of suicidality and contributes to the preventative work on suicide by demonstrating how support can be provided at crisis points.
In this article, we explore relations between health, being, belonging and place through an interpretive thematic analysis of autobiographic text and photographs about the everyday lives of 10 women and men living with medically unexplained long-term fatigue in Norway. While interpreting their place-related illness experiences, we ask: How do they experience their being in the world, where do they experience a sense of belonging/not belonging, and why do places become places of belonging/not belonging? The participants describe experiences of (a) being socially detached and alienated, (b) being imprisoned, (c) being spectators who observe the world, and (d) senses of belonging. They describe senses of being and belonging/not belonging as closely attached to physical and symbolic aspects of places in which they reside, and they wistfully reflect on the question of "why." The study illustrates the influence of experienced place—material as well as immaterial—on health and illness.
In this article, we outline methodological considerations for conducting research interviews with couples. We draw from two qualitative men’s health studies, both developed to explore social interactions between men and their partners of either sex in relation to their health practices. We utilized a combination of separate interviews and joint couple interviews. From these studies, we offer insight into our experiences of using both types of interview styles, addressing four key areas which span elements across the research project journey: (a) choosing a mode of interview, (b) ethical concerns in couple research, (c) the interview as a platform for disclosure, and (d) analyzing data from couple research.
This study explores women’s experiences of breast cancer in the occupied Palestinian territory. We use an inductive qualitative design with a thematic analytical approach for conducting and analyzing 35 semi-structured interviews with breast cancer patients. The interviews focused on diagnosis, experiences and coping with breast cancer, social support and care needs, and the impact of illness on their families and social relationships. Three themes emerged: (a) the transition from initial shock to the daily struggles with disruptions caused by illness, (b) the role of social support in helping women cope with the burden of disease, and the importance of (c) faith and reliance on God (tawakkul). In the Palestinian context, women’s narratives highlighted the disruptive nature of breast cancer. Our findings underline the importance of social support provided by extended family members. Finally, faith is an important overarching theme that influences how women make sense of and cope with breast cancer.
The outcomes of self-management interventions are commonly assessed using quantitative measurement tools, and few studies ask people with long-term conditions to explain, in their own words, what aspects of the intervention they valued. In this Grounded Theory study, a Health Trainers service in the north of England was evaluated based on interviews with eight service-users. Open, focused, and theoretical coding led to the development of a preliminary model explaining participants’ experiences and perceived impact of the service. The model reflects the findings that living well with a long-term condition encompassed social connectedness, changed identities, acceptance, and self-care. Health trainers performed four related roles that were perceived to contribute to these outcomes: conceptualizer, connector, coach, and champion. The evaluation contributes a grounded theoretical understanding of a personalized self-management intervention that emphasizes the benefits of a holistic approach to enable cognitive, behavioral, emotional, and social adjustments.
Women who engage in prenatal physical activity give themselves, and their child, an advantage over women who did not engage in prenatal physical activity; not only are there significant health benefits for mothers, but there are also great benefits for the unborn child. Breastfeeding is another important decision parents make that can affect the mother and her child. There has been extensive research on the benefits of both prenatal physical activity and breastfeeding, but the connection between the two is unclear. The purpose of this grounded theory article was to identify potential connections between factors influencing women’s decisions to engage in prenatal physical activity and breastfeeding among mothers in a medium-sized city in Tennessee. Responses from mothers revealed numerous themes related to both prenatal physical activity and breastfeeding. Connections between prenatal physical activity and breastfeeding, in addition to an overarching theme that captured the women’s collective experience, were identified.
Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents’ individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents’ relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.
There are disproportionately higher and inconsistently distributed rates of recorded suicides in rural areas. Patterns of rural suicide are well documented, but they remain poorly understood. Geographic variations in physical and mental health can be understood through the combination of compositional, contextual, and collective factors pertaining to particular places. The aim of this study was to explore the role of "place" contributing to suicide rates in rural communities. Seventeen mental health professionals participated in semi-structured in-depth interviews. Principles of grounded theory were used to guide the analysis. Compositional themes were demographics and perceived mental health issues; contextual themes were physical environment, employment, housing, and mental health services; and collective themes were town identity, community values, social cohesion, perceptions of safety, and attitudes to mental illness. It is proposed that connectedness may be the underlying mechanism by which compositional, contextual, and collective factors influence mental health and well-being in rural communities.
This study examined factors that mitigate or heighten HIV risk among HIV-negative wives in serodiscordant relationships in Gujarat, India. Grounded theory was used to analyze 46 interviews (23 couples) where husbands were HIV-positive and wives were HIV-negative. A conceptual framework emerged from analysis from which we identified five pathways and four key behaviors: (a) safer sex, (b) no sex, (c) coercive sex, and (d) unprotected sex. Most couples either practiced safe sex or abstained from sex. Factors such as wives’ assertiveness, a wife’s fear of acquiring HIV, mutual understanding, positive sex communication, and a husband’s desire to protect wife influenced safe sex/sexual abstinence. Factors such as desire for children, a husband’s alcohol use, and intimate partner violence influenced coercive and unprotected sex. Counseling topics on sex communication, verbal and non-verbal safer sex strategies, as well as addressing intimate partner violence and alcohol use may be important in preventing risk to HIV-negative wives.
We present the findings of our phenomenological interview study concerning the meaning of being an autonomous person while dependent on advanced medical technology at home. This was elucidated in the participants’ narratives as befriending everyday life when bringing technology into the private sphere. We discovered four constituents of the phenomenon: befriending the lived body, depending on good relationships, keeping the home as a private sphere, and managing time. The most important finding was the overall position of the lived body by means of the illness limiting the control over one’s life. We found that the participants wanted to be involved in and have influence over their care to be able to enjoy autonomy. We therefore stress the importance of bringing the patients into the care process as chronic illness will be a part of their everyday life for a long time to come, hence challenging patient autonomy.
Depression is higher among second-generation Latinas compared with immigrants, but mental health treatment is stigmatized. Therefore, second-generation Latinas were interviewed after completing an eight-session depression treatment program to gain insight on what they found valuable about their therapy experiences. Constructivist grounded theory guided data collection and analysis which showed that women valued treatment more when they recognized their needs were being met, the therapist was a worthy copilot, and the program’s structure had flexibility. Four processes were considered important to their work in therapy: understanding feelings about past events, seeing patterns, accepting self, and changing family patterns but still being "family." Post therapy, women valued their enhanced confidence and a "toolbelt" of techniques they gained for self-treatment. These findings have implications for designing future depression treatment programs that are more likely to be desirable and effective for the growing subgroup of underserved second-generation Latinas in the United States.
Suffering from post-traumatic stress impacts and restricts the life situation of the individual on several levels, not least regarding social difficulties. Social media on the Internet facilitate new possibilities for interaction and communication. Earlier research has demonstrated that people use social media to seek support and to discuss health-related issues. The current study aimed to describe how individuals suffering from post-traumatic stress use social media to convey authentic narratives of their daily lives, including illness, and further, to analyze the content of this media use. The data comprised YouTube videos, blogs, and forum discussions. Five categories cover the findings: (a) structure of the narrative, (b) narrating the trauma, (c) restrictions in life, (d) strategies in everyday living, and (e) online interaction. We stress that sharing narratives online facilitates a "verbalizing" of the life conditions of the sufferers and can be used as a self-care activity.
In this study, we explore community members’ overall understanding and experience with biomedical research engagement. We conducted a qualitative analysis to explore a concept that emerged but was not specifically addressed in a pre-existing dataset obtained using four focus group sessions with 30 urban-dwelling community members. Transcripts were read in an iterative process, and an emergent content analysis was performed. Five main themes were identified: (a) engaging in research to contribute to personal or greater good, (b) hierarchy of trust, (c) the importance of disclosure and transparency, (d) practical barriers to research engagement, and (e) fear of research procedures. Community members view research engagement as a collaborative process whereby community members and researchers are involved in all stages of the investigation. Focusing on research engagement, and not merely participation, may enhance community knowledge of the research process and advance scientific knowledge.
Following a cancer diagnosis, young adults (YAs; that is, 18-39) often experience altered social relationships with family, friends, romantic partners, and peers. In light of the social struggles YA patients and survivors report due to cancer’s biographical disruption, we elicited narratives from 30 YA cancer survivors to examine how their normative perceptions of social support functioned to hinder and assist them in coping with the cancer experience. Through thematic narrative analysis of their individual accounts, YA survivors explained why and how they perceived various support attempts from peers and loved ones to be effective (i.e., being treated "normally"), ineffective (i.e., receiving pity, negative stories, rudeness, excessive self-monitoring, and returns from estrangement), and both effective and ineffective (e.g., instrumental and relational support) in integrating cancer into their biographies. Implications for the advancement of interpersonal communication theory and for the development of age-appropriate communication interventions, educational programs, and informational resources are discussed.
Repeated retelling of trauma narratives within Trauma-Focused Cognitive Behavioral Therapy (TF-CBT) assists participants to habituate to experiences that have precipitated symptoms of post-traumatic stress. In this study, the narratives produced by children and adolescents, who developed post-traumatic stress disorder following a natural disaster, and who were treated with a manualized TF-CBT intervention, were examined. The first author developed a coding system utilizing three major concepts (coherence, elaboration, and evaluation) to identify changes in the narratives as they were retold at each therapeutic session. Analysis using this coding system identified that the internal logic of the stories was maintained as the detail diminished, and that the level of evaluation increased. Compression emerged as a major pattern, alongside the reduction in participant distress over the course of the treatment. Although requiring replication, these trial concepts, developed by the coding system, have potential analyzing trauma narratives and enhancing clinician observations.
Child Protective Services (CPS) identifies over 700,000 victims of child maltreatment in the United States annually. Research shows that risk factors for these children may persist despite CPS intervention. Mothers have unique and often untapped perspectives on the experiences and consequences of CPS intervention that may inform future practice. We explored these perspectives through interviews with 24 mothers after a first-time CPS finding of maltreatment not resulting in out-of-home placement. Male partners were primary perpetrators in 21 cases, with mothers or sitters identified as perpetrators in remaining cases. Data were analyzed using grounded theory. Mothers described risk factors or Roots of maltreatment prior to CPS involvement and reported variable experiences with Recognition of and Response to maltreatment. Divergent Outcomes emerged: I Feel Stronger and We’re No Better. These findings provide an understanding of household experiences around child maltreatment that may support practice and policy changes to improve outcomes for vulnerable children.
Humor is a potential communication strategy to accomplish various and potentially conflicting consultation goals. We investigated humor use and its reception in diabetes consultations by analyzing how and why humor emerges and its impact on the interaction. We did this by using an interactional sociolinguistics approach. We recorded 50 consultations in an Irish diabetes setting. Analysis of the humor events drew on framework analysis and on concepts from Conversation Analysis and pragmatics. The study also comprised interviews using tape-assisted recall. We identified 10 humor functions and two umbrella functions. A key finding is that most humor is relationship-protecting humor initiated by patients, that is, they voice serious messages and deal with emotional issues through humor. Our findings imply that patients’ and providers’ awareness of indirect communication strategies needs to be increased. We also recommend that researchers employ varied methods to adequately capture the interactive nature of humor.
This qualitative case study explored one client’s recovery from borderline personality disorder, trauma, and problem gambling. The client attended 18 months of integrative treatment and was followed for 5 years. The study included 106 data points of both client and therapist data. We identified three phases to treatment. First, alliance formation and normalization appeared as mechanisms, and the client experienced dependence. Second, working alliance and countertransference appeared as mechanisms, and the client experienced reduced gambling and suicidal ideation. Third, external controls and increased opportunity appeared as mechanisms, and "moving into the world" was the client experience. The findings give preliminary support to a phase-based constructivist treatment including trauma assessment to normalize self-feelings, countertransference work to support motivation for restraint, and case management principles to support continuity of change efforts.
The foundation of culturally sensitive patient-centered palliative care is formed from one’s social, spiritual, psychological, and physical experiences of serious illness. The purpose of this study was to describe categories and patterns of psychological, social, and spiritual healing from the perspectives of aging seriously ill African American (AA) elders. Using narrative analysis methodology, 13 open-ended interviews were collected. Three main patterns were "prior experiences," "I changed," and "across past, present experiences and future expectations." Themes were categorized within each pattern: been through it . . . made me strong, I thought about . . . others, went down little hills . . . got me down, I grew stronger, changed priorities, do things I never would have done, quit doing, God did and will take care of me, close-knit relationships, and life is better. "Faith" in God helped the aging seriously ill AA elders "overcome things," whether their current illness or other life difficulties.
In this methodological article, we examine participatory methods in depth to demonstrate how these methods can be adopted for quality improvement (QI) projects in health care. We draw on existing literature and our QI initiatives in the Department of Veterans Affairs to discuss the application of photovoice and guided tours in QI efforts. We highlight lessons learned and several benefits of using participatory methods in this area. Using participatory methods, evaluators can engage patients, providers, and other stakeholders as partners to enhance care. Participant involvement helps yield actionable data that can be translated into improved care practices. Use of these methods also helps generate key insights to inform improvements that truly resonate with stakeholders. Using participatory methods is a valuable strategy to harness participant engagement and drive improvements that address individual needs. In applying these innovative methodologies, evaluators can transcend traditional approaches to uniquely support evaluations and improvements in health care.
This study focuses on the negotiation of relationships among women living with the chronic illness fibromyalgia. Twenty in-depth, semistructured interviews were conducted with women diagnosed with fibromyalgia. Drawing from interactional and constructionist perspectives, the analysis focuses on participants’ approaches to communicating with others about their illness, the reactions of others to their experiences, and participants’ strategies to manage stigma. Participants attempted to describe their illness experience to others through direct and educational approaches. Often, in the management of their relationships with close family and friends, there was an unspoken awareness of illness effects, and social support was offered. However, disbelief and a lack of understanding often led participants to avoid social interactions in the attempt to hide from the stigma associated with an invisible and contested illness.
When pharmacists incorporate clinical practice into their routine, barriers and facilitators influence the implementation of patient care services. Three focus groups were conducted with 11 pharmacists who were working for the Farmácia Popular do Brasil program on the establishment, implementation, and consolidation of clinical pharmacy services. The perception of the pharmacists in Brazil about the program was that it facilitated access to health care and medication. The distance between neighboring cities made it difficult for patients to return for services. Lack of staff training created a lack of communication skills and knowledge. The pharmacists wanted to have increased technical support, skill development opportunities, and monitoring of researchers who assessed progress of the service. Pharmacists overcame many of their insecurities and felt more proactive and committed to quality service. Positive experiences in service implementations have shown that it is possible to develop a model of clinical services in community pharmacies.
Transitions to palliative care can involve a shift in philosophy from life-prolonging to life-enhancing care. People living with a life-limiting illness will often receive palliative care through specialist outpatient clinics, while also being cared for by another medical specialty. Experiences of this point of care have been described as being liminal in character, that is, somewhere between living and dying. Drawing on experiences of illness and care taken from semistructured interviews with 30 palliative care outpatients in Australia, we found that this phase was frequently understood as concurrently living and dying. We suggest that this is a "parallax experience" involving narratives of a coherent linear self that is able to understand both realities, in a way that acknowledges the benefits of being multiple. These findings have significant implications for the ways in which palliative care is understood and how the self and subjectivity might be conceptualized at the end of life.
Critical care patients are dependent on the health care team and their family members to effect care goals that are consistent with their core values and wishes. This study aimed to identify and understand how obstacles to communication affect these two disparate groups. Ten burn intensive care unit (BICU) care team and 20 family members participated in in-depth semistructured interviews. A two-cycle coding, inductive analytical approach was used to derive three obstacle metathemes: family engagement, information exchange, and process transparency and standardization. However, care team and family members’ themes within each metatheme were different. Although the thematic structure was derived inductively, our findings in retrospect appeared to be consistent with Law’s four resistances associated with actor-networks. From this perspective, actor-network theory provides a plausible explanation for perceived obstacles and may, in the future, guide the development of interventions to improve shared agency across networks.
The nature of the ongoing bond maintained by the bereaved with the deceased has attracted considerable attention, but studies have generally ignored postdeath relationships when loss occurs in utero. The goal of this research was to reach an interpretive understanding of the continuing bond experience among Israeli mothers who underwent feticide, examining the strategies they use in maintaining a postdeath relationship with a child they did not know, whose death they chose and witnessed, within a social context that ignores their loss and forces them to silence their grief. The results highlight two themes: (a) strategies for relinquishing connection with the baby and (b) strategies for maintaining a postdeath relationship. These processes partially correspond with two theoretical views that shed light on interpretation of the results: the dual process of coping with bereavement and relational dialectic theory. Implications of the results to the practice of health providers are outlined.
This study identified the main components of the drugs and crime experience of a sample of 25 drug-dependent inmates interviewed in prison. Text analyses were conducted using a phenomenological method. The sample was characterized by a disruptive childhood in multi-problematic families and deviant social contexts where drug use and crime were considered normal since early adolescence. Drug initiation involved recreational use of dance drugs and/or cocaine, and the pleasure experienced was identified as the cause of subsequent persistent use. Three pathways that led to dependence were identified: The narcissistic pathway was defined as involving uncontrolled cocaine and amphetamines to feel powerful and limitless. The posttraumatic pathway was defined as involving post-trauma self-destructive drug use, while the pain relief pathway was defined as involving multiple substances to relieve pain. The second and third pathways were more directly associated with crime aimed at sustaining drug use.
Some people living with HIV spontaneously control the virus without antiretroviral treatment. They are called HIV controllers, and their status places them at the limits of bio-clinical normality. The objective of this study was to investigate HIV controllers’ beliefs and representations of their individual trajectories using a qualitative approach. Fourteen HIV controllers were interviewed. Vertical analysis focused on examining how interviewees’ specific beliefs and representational processes help these patients adapt to their particular situation. Horizontal analysis focused on how patients’ biographic trajectories and identity positioning help them make sense of their situation. Results highlighted that perceiving oneself to be healthy or ill was linked to change or a lack of change in terms of disease perception, beliefs, and representations, when seropositivity was announced. This study of social representations and the processes involved provide crucial elements for health professionals caring for HIV controllers.
Breast cancer, the most common cancer among Arab women in Qatar, significantly affects the morbidity and mortality of Arab women largely because of low participation rates in breast cancer screening. We used a critical ethnographic approach to uncover and describe factors that influence Arab women’s breast cancer screening practices. We conducted semistructured interviews with 15 health care practitioners in Qatar. Through thematic analysis of the data, we found three major factors influencing breast cancer screening practices: (a) beliefs, attitudes, and practices regarding women’s bodies, health, and illness; (b) religious beliefs and a culturally sensitive health care structure; and (c) culturally specific gender relations and roles. Arab women’s health practices cannot be understood in isolation from the sociocultural environment. The problem of low rates of breast cancer screening practices and supportive interventions must be addressed within the context and not be limited to the individual.
Persistent, subjective symptoms of unknown etiology following treatment for Lyme disease have been termed post-treatment Lyme disease syndrome or chronic Lyme disease (PTLDS/CLD). The objective of this study was to give primacy to the patient experience of this medically contested condition by eliciting patient illness narratives and identifying emergent issues through semistructured interviews conducted among 29 participants. We used thematic narrative analysis to identify three predominant themes: (a) Physical and social limitations lead to a "new normal" characterized by fundamental shifts of ways of being in the world, (b) disease-specific factors contribute to symptom and illness invisibility that affects social support in nuanced ways, and (c) pervasive medical uncertainty regarding PTLDS/CLD promotes an increased sense of personal responsibility for care. Similar to other contested or medically unexplained syndromes, our findings suggest that the social sequelae of PTLDS/CLD can be equally protracted as the physical effects of this illness.
The mechanisms by which talking therapies exert their beneficial effects are largely unknown. In exploring the process of a talking therapy, motivational interviewing (MI), when used to treat and prevent low mood in stroke survivors, we developed, what we believe to be, a novel approach to analyzing transcripts. We illustrate the method using qualitative data from MI sessions with 10 stroke survivors. The approach, drawing on grounded theory, incorporated processes of parallel and serial memoing among a team of researchers to allow a process of validation. This enabled us to describe session content and to develop theoretical interpretations of what was occurring in and across MI sessions. We found that this process can be used to integrate different perspectives in theory building, allowing for a richer description and more robust theoretical interpretation. Others can use and adapt this approach to develop insights into their own inquiry.
Sample sizes must be ascertained in qualitative studies like in quantitative studies but not by the same means. The prevailing concept for sample size in qualitative studies is "saturation." Saturation is closely tied to a specific methodology, and the term is inconsistently applied. We propose the concept "information power" to guide adequate sample size for qualitative studies. Information power indicates that the more information the sample holds, relevant for the actual study, the lower amount of participants is needed. We suggest that the size of a sample with sufficient information power depends on (a) the aim of the study, (b) sample specificity, (c) use of established theory, (d) quality of dialogue, and (e) analysis strategy. We present a model where these elements of information and their relevant dimensions are related to information power. Application of this model in the planning and during data collection of a qualitative study is discussed.
This metasynthesis surveyed extant literature on deception in the context of dementia and, based on specific inclusion criteria, included 14 articles from 12 research studies. By doing so, the authors accomplished three goals: (a) provided a systematic examination of the literature-to-date on deception in the context of dementia, (b) elucidated the assumptions that have guided this line of inquiry and articulated the way those shape the research findings, and (c) determined directions for future research. In particular, synthesizing across studies allowed the authors to develop a dynamic model comprised of three temporally linear elements—(a) motives, (b) modes, and (c) outcomes that describe how deception emerges communicatively through interaction in the context of dementia.
Cystic fibrosis (CF) is a genetic disease that has no manifestations for carriers but is terminal for those diagnosed with it. CF is identified through newborn screening (NBS) tests, and most families have no knowledge about CF before their contact with a NBS program. Acknowledging the Internet as a popular health information source, this study examined information exchange about CF in online community forums. This article, guided by self-determination theory, aimed at providing understanding of psychological needs and motivation for health information seeking and active communication about CF. Through online communication with other families who share similar experience, caregivers of newborns diagnosed with CF sought and received support for their competence, autonomy, and relatedness needs during the initial CF testing and diagnosis reconciliation process. Online communities play an important role in the information seeking related to CF diagnosis and could become active partners in strategic knowledge dissemination efforts.
Previous research with American Indian (AI) adolescent sexual risk behavior primarily focused on reservation-dwelling youth despite 70% of AIs living off Native lands. Using grounded theory methodology, I sampled 20 adolescent AI girls via talking circles and interviews to explore the perceptions of AI adolescent girls living in an urban, Midwest area about the influence of family and friends on their sexual behavior. Similar to research with other racial groups, participants cited their family and friends as a major influence. Five unique themes emerged related to family and friend influence. Urban-dwelling AI girls rely on their female family members and peers for information related to sex and receive varying messages from their networks of family and friends, which often overlap. AI youth have unique family groups yet have some similarities to other ethnic groups with regard to family and friend relationships that may allow for enhanced intervention development.
Misuse of codeine-containing medicines is an emerging global public health concern. The majority of research has been conducted in developed countries (European Members States, Australia, the United States). This study aimed to gain an understanding of unique individual and collective experiences of trajectories of codeine misuse and dependence in South Africa. In-depth interviews were conducted with a purposive sample of adult codeine misusers and dependents (n = 25). Narratives were analyzed using the empirical phenomenological psychological five-step method. Nine themes with 63 categories emerged, with two additional high levels of abstraction. Findings are illustrated: participant profile and product preferences, motives for use, transitioning to misuse and dependence, pharmacy purchasing and alternative sourcing routes, effects and withdrawal experiences, help-seeking and treatment experiences, and strategies for prevention. The study underscores the need for continued support for enhanced patient awareness of risk of habit forming use and related health consequences and professional pharmacovigilance.
Despite the consequences for women’s health, a repeat cesarean section (CS) birth after a previous CS is common in Western countries. Vaginal Birth After Cesarean (VBAC) is recommended for most women, yet VBAC rates are decreasing and vary across maternity organizations and countries. We investigated women’s views on factors of importance for improving the rate of VBAC in countries where VBAC rates are high. We interviewed 22 women who had experienced VBAC in Finland, the Netherlands, and Sweden. We used content analysis, which revealed five categories: receiving information from supportive clinicians, receiving professional support from a calm and confident midwife/obstetrician during childbirth, knowing the advantages of VBAC, letting go of the previous childbirth in preparation for the new birth, and viewing VBAC as the first alternative for all involved when no complications are present. These findings reflect not only women’s needs but also sociocultural factors influencing their views on VBAC.
People with depression often suffer from severe social seclusion, and the lack of an agreed upon etiology for depression makes it difficult to satisfactorily narrate and "ritually control" it. Focusing on blogs by women with major depression, I delineate the ways in which bloggers publicly express and collaboratively reconstruct their depression narratives. Specifically, using thematic analysis, I argue that depression blogs uniquely bridge between the seclusion that characterizes depression and the exposure offered in blogs, and thus offer people a rare opportunity to publicly share very intimate depression narratives, form communal bonds with their readers, and collaboratively revise their narratives. Depression blogs are also shown to function as "narrative sandboxes"—protected spaces in which bloggers can temporarily and experimentally add or remove different sections from their illness narratives, assess the compatibility of different cultural frameworks, and interchangeably use various metaphors, in an attempt to satisfactorily explain depression.
The societal changes in India and the available variety of reproductive health services call for evidence to inform health systems how to satisfy young women’s reproductive health needs. Inspired by Foucault’s power idiom and Bandura’s agency framework, we explore young women’s opportunities to practice reproductive agency in the context of collective social expectations. We carried out in-depth interviews with 19 young women in rural Rajasthan. Our findings highlight how changes in notions of agency across generations enable young women’s reproductive intentions and desires, and call for effective means of reproductive control. However, the taboo around sex without the intention to reproduce made contraceptive use unfeasible. Instead, abortions were the preferred method for reproductive control. In conclusion, safe abortion is key, along with the need to address the taboo around sex to enable use of "modern" contraception. This approach could prevent unintended pregnancies and expand young women’s agency.
Food and diet are central aspects of diabetes self-management but the relevance of social networks for the way people are supported in their management of type 2 diabetes is often under-acknowledged. In this article, we aimed to explore the coalescences between these two phenomena among people with type 2 diabetes to increase knowledge of interactions within social network related to daily diet. The article is based on 125 qualitative interviews with individuals with type 2 diabetes from five European countries. Based on assumptions that people with chronic illnesses reshape relationships through negotiation, we analyzed negotiations of food at different levels of network. The respondents’ reflections indicate that there are complex negotiations that influence self-management and food, including support, knowledge, and relationships within families; attention and openness in social situations; and the premises and norms of society.
A key source of resiliency within HIV-affected African American communities is informal social support. Data from dyadic conversations and focus groups were used to address the following research question: What are HIV-positive African Americans’ social support experiences within their informal social networks in response to HIV-related problems? Circumstances that exacerbated HIV-related problems included others’ fear of contagion, reticence to be involved, judgment and rejection, and disregard for privacy. Support from HIV-negative others buffered the impact of problems when others communicate interest, take the initiative to help, or make a long-term investment in their success. Support from other HIV-positive persons was helpful given the shared connection because of HIV, the opportunity to commiserate about what is mutually understood, and the fight for mutual survival. Based on these findings, we offer suggestions for future research and social network interventions aimed at bolstering connections between HIV-positive peers, reducing stigma, and improving family support.
A growing body of international evidence suggests that sex workers face a disproportionate burden of violence, with significant variations across social, cultural, and economic contexts. Research on trans sex workers has documented high incidents of violence; however, investigations into the relationships between violence and social-structural contexts are limited. Therefore, the objective of this study was to qualitatively examine how social-structural contexts shape trans sex workers’ experiences of violence. In-depth semistructured interviews were conducted with 33 trans sex workers in Vancouver, Canada, between June 2012 and May 2013. Three themes emerged that illustrated how social-structural contexts of transphobia and criminalization shaped violent experiences: (a) transphobic violence, (b) clients’ discovery of participants’ gender identity, and (c) negative police responses to experiences of violence. The findings demonstrate the need for shifts in sex work laws and culturally relevant antistigma programs and policies to address transphobia.
A large body of literature explores historical trauma or intergenerational trauma among Aboriginal communities around the globe. This literature connects contemporary forms of social suffering and health inequity to broader historical processes of colonization and the residential school systems in Canada. There are tendencies within this literature, however, to focus on individual pathology and victimization while minimizing notions of resilience or well-being. Through a social constructionist lens, this research examined how interpersonal responses to historical traumas can be intertwined with moments of and strategies for resilience. Detailed narrative interviews occurred with four Aboriginal Cree elders living in central Saskatchewan, Canada, who all experienced historical trauma to some extent. From this analysis, we argue that health research among Aboriginal populations must be sensitive to the complex individual and social realities that necessarily involve both processes of historical and contemporary traumas as well as resilience, strength, and well-being.
In this article, we present the use of illustrated metaphorical cards as a technique to enrich the qualitative narrative interview. We examine the advantages of incorporating a projective tool to assist in constructing and understanding personal narratives of people living with severe mental illness. We interviewed 25 participants—staff and members of a clubhouse in Israel (an international community model of rehabilitation in mental health)—and sought to understand their stories focused on personal and organizational values. The findings revealed that, in most cases, the cards contributed to data collection by enhancing the interviewees’ ability for expression and by facilitating richer, more comprehensive stories and descriptions. This in turn enhanced the researcher’s ability to understand the messages and stories presented. The research conclusions discuss the cards’ potential contribution to improving data collection and analysis. The cards became an additional channel for expressing participants’ experiences, emotions, and unique voice.
Child undernutrition affects millions of children globally, but little is known about the ability of adults to detect different types of child undernutrition in low-income countries. We used focused ethnographic methods to understand how Malawian parents and grandparents describe the characteristics they use to identify good and poor child growth, their actual or preferred patterns of health seeking for undernourished children, and the perceived importance of child undernutrition symptoms in relation to other childhood illnesses. Malawians value adiposity rather than stature in assessing child growth. Symptoms of malnutrition, including wasting and edema, were considered the least severe childhood illness symptoms. Parents delayed health care seeking when a child was ill. When they sought care, it was for symptoms such as diarrhea or fever, and they did not recognize malnutrition as the underlying cause. These findings can be used to tailor strategies for preventing and treating growth faltering in Malawian children.
Previous research has highlighted that acute care provision can lead to a loss of confidence, control, and independent functioning in older adult patients. In addition, it is recognized that interactions between patients and health care staff are central to the prevention of functional decline in patients. In this study, we aimed to affect the staff–patient relationship by implementing a coaching intervention in an older adult acute care setting. Here, we report on staff experiences of this coaching approach. Data were collected from 16 members of staff via semi-structured interviews, which were analyzed using thematic analysis. Four themes were identified: Putting a Label on It, Stepping Back and Listening, Identifying the Opportunities, and Working as Team. Our findings show that a coaching approach can be successful in getting staff to reconsider their interactions with patients and to focus on strategies that foster the independence and autonomy of older adult patients.
While an increasing number of researchers are using online discussion forums for qualitative research, few authors have documented their experiences and lessons learned to demonstrate this method’s viability and validity in health services research. We comprehensively describe our experiences, from start to finish, of designing and using an asynchronous online discussion forum for collecting and analyzing information elicited from care coordinators in Patient-Centered Medical Homes across the United States. Our lessons learned from each phase, including planning, designing, implementing, using, and ending this private online discussion forum, provide some recommendations for other health services researchers considering this method. An asynchronous online discussion forum is a feasible, efficient, and effective method to conduct a qualitative study, particularly when subjects are health professionals.
The purpose of this study was to investigate perceptions of health and health behaviors among Indigenous Australian men. Using a participatory action research (PAR) framework, we conducted two focus groups and 40 individual semi-structured interviews with men between the ages of 18 and 35 years in each of three locations across Australia. We used the health beliefs model to provide a framework for the analyses. Participants recognized that their Indigenous status placed them in a vulnerable position with regard to health, and that there might be serious consequences of failing to follow a good diet and engage in appropriate exercise. However, they delineated a number of barriers to engaging in such health behaviors. These perceived barriers require addressing at a range of policy levels within government, with a focus on social structures and institutionalized discrimination, as well as unemployment, poverty, dispossession, and cultural oppression.
Having a preterm infant is a life-altering event for parents. The use of interventions intended to support the parents is recommended. In this study, we investigated how parents’ perceptions of physiotherapy in primary health care influenced their adaptation to caring for a preterm child. We conducted 17 interviews involving parents of seven infants, at infants’ corrected age (CA) 3, 6, and 12 months. The analysis was a systematic text condensation, connecting to theory of participatory sense-making. The parents described a progression toward a new normalcy in the setting of persistent uncertainty. Physiotherapists can ameliorate this uncertainty and support the parents’ progression toward normalization, by providing knowledge and acknowledging both the child as subject and the parent–child relationship. Via embodied interaction and the exploration of their child’s capacity, the parents learn about their children’s individuality and gain the confidence necessary to support and care for their children in everyday life.
Despite ongoing prevention efforts, young gay and bisexual men (YGBM) accounted for more than three fourths of all recent HIV infections. Furthermore, they continue to engage in high-risk sexual behaviors at alarming rates. Nowadays, families are beginning to emerge as important resources for these youth. However, the viewpoints of YGBM and their families are largely missing from HIV prevention research and intervention development. To address this gap, we solicited the opinions of YGBM and their parents as to why YGBM engage in unsafe sex and what might be done to help them avoid HIV. Participants discussed youth’s sense of invulnerability, sexual arousal, parental disapproval, and lack of societal acceptance as contributors to unsafe sex. Participants called for gay-sensitive sex education and community programming as well as increased societal acceptance. Overall, respondents recommended interpersonal and structural-level interventions that emphasized the importance of reducing stigma as a key component of HIV prevention.
People living with HIV (PLHIV) continue to have children after being diagnosed with HIV, yet little research attention has been paid to actual lived childbearing experiences of PLHIV post-HIV diagnosis. We interviewed 10 HIV-positive women and 11 HIV-positive men in Iringa, Tanzania, about their experiences of conceiving and having children after being diagnosed with HIV. We adopted an approach to data analysis based on grounded theory and phenomenology. Participants’ experiences were shaped by social and institutional factors. Some participants reported pressures to bear children by partners and relatives, whereas others reported negative reactions from others concerning their pregnancies. Most participants had not discussed having children with a provider before attempting to conceive. Some reported being reprimanded by health providers for getting pregnant without seeking their advice. Consideration of support systems and challenges surrounding the childbearing experiences of PLHIV can help inform reproductive health interventions for those who desire children.
In this manuscript, we expand upon sociological research in lay knowledge about health and healthicization by examining socially mediated ways in which 40 African American adults in two communities acquired information about eating practices. Participants employed a variety of socially informed information-seeking strategies. Many, but not all, used socially prescribed sources exhorting them to maximize their own health and reported an amalgam of experiences concerning their interpretation of healthist messages. Participants variously accepted messages about healthy eating or engaged in strategies of micro-resistance that decentered and/or reinterpreted health promotion discourse. Furthermore, participants used emic community-based resources including those that prioritized familial engagement over individual responsibility in eating practices or that drew upon alternative health practices. We discuss the implications our work has for further research on healthicization and lay knowledge about eating practices, in which community members are actively engaged in meaning-making within local socio-structural contexts.
This research describes a community dance project for people affected by cancer, which was led by a trained community dancer over 10 movement workshops and three performances. Using a qualitative descriptive approach, the research explored the experiences of a convenience sample of 8 participants out of the original group of 17 individuals who took part in the community dance. The research was participatory and the researchers were involved in workshops and performances as members of the group who also had family members with cancer. The findings indicate the motivation of the dancers to continue in spite of hardship, their sense of pride in being part of something that was larger than themselves, the way the dance permitted them to embody a sense of courage, and finally, in performing, how they managed to share something that genuinely moved an audience.
Despite growing consideration of the needs of research participants in studies related to sensitive issues, discussions of alternative ways to design sensitive research are scarce. Structured as an exchange between two researchers who used different approaches in their studies with childhood sexual abuse survivors, in this article, we seek to advance understanding of methodological and ethical issues in designing sensitive research. The first perspective, which is termed protective, promotes the gradual progression of participants from a treatment phase into a research phase, with the ongoing presence of a researcher and a social worker in both phases. In the second perspective, which is termed minimalist, we argue for clear boundaries between research and treatment processes, limiting the responsibility of researchers to ensuring that professional support is available to participants who experience emotional difficulties. Following rebuttals, lessons are drawn for ethical balancing between methodological rigor and the needs of participants.
In this study, we examined how non-infectiousness due to antiretroviral therapy has affected HIV-positive gay men’s experience of serostatus disclosure to casual sex partners. Interviews were conducted with 15 seropositive gay men living in Ireland. Using grounded theory, three constructions of non-disclosure were proposed—as self-protection, as a morally permissible act, and as a rejection of the HIV-positive identity. Each construction entailed an aspect related to the sexual exclusion of those living with HIV, and an aspect related to their social exclusion. The extent to which the lives of those interviewed were affected by stigma was starkly revealed, as was the extent to which they stigmatized others living with HIV and rejected the HIV-positive identity. The research highlights the failure to socially normalize HIV and that interventions are needed to reduce the distress associated with seropositivity.
In literature, disclosure of donor conception in lesbian families has been considered an obvious and straightforward event. However, little is known about the ways in which donor conception is discussed in planned lesbian co-mother families. This study focuses on the process of parent–child communication about the donor conception on a within-family level. Six families, including 7 children and 12 parents, were interviewed about their family communication with regard to donor conception. A dyadic interview analysis revealed that family members managed the space taken up by the topic of donor conception in their daily conversations. Within these conversations, they also took care of each other and of their family relationships. In addition, children had an active position in the co-construction of the donor conception narrative. Linking these findings to the concepts of relational management and functionality of donor conception narratives, this study informs practitioners in the field of medically assisted reproduction.
Self-harm is common in young people, and can have profound effects on parents and other family members. We conducted narrative interviews with 41 parents and other family members of 38 young people, aged up to 25, who had self-harmed. Most of the participants were parents but included one sibling and one spouse. This article reports experiences of the parent participants. A cross-case thematic analysis showed that most participants were bewildered by self-harm. The disruption to their worldview brought about by self-harm prompted many to undergo a process of "sense-making"—by ruminative introspection, looking for information, and building a new way of seeing—to understand and come to terms with self-harm. Most participants appeared to have been successful in making sense of self-harm, though not without considerable effort and emotional struggle. Our findings provide grounds for a deeper socio-cultural understanding of the impact of self-harm on parents.
In 2% to 3% of cases, prenatal microarray testing detects deletions and duplications in a fetus’ genome that are undetected by conventional cytogenetics. Many of these changes are associated with variable or uncertain symptomatology. Little is known about how couples experience uncertain results. This study analyzed 24 interviews with members of 12 heterosexual U.S. couples who received pathogenic or uncertain microarray prenatal testing results. Researchers used narrative analysis to examine couples’ understanding and incorporation of findings into decision making regarding pregnancy termination. Couples felt unprepared for these findings and frustrated because scant information was available to aid interpretation. Women sought information and made decisions, and men marginalized their distress to support their wives. A shift in voice from first to second person indicated attempts to normalize emotional responses by making the process "common" to all couples. Families pursuing highly sensitive prenatal testing may need expert guidance to support decision making.
There is limited literature on the experience of caring for an intimate partner with a mental health condition. Posttraumatic stress disorder (PTSD) is a common mental health condition for military veterans; yet, little is known about how partners experience and cope with these caring relationships. Using an interpretive phenomenological approach, we collected data through individual interviews with 20 female partners of male veterans diagnosed with PTSD living in South Australia. We found the emotional features of caring to be directly derived from the strength of commitment these carers had to their relationships. We show that lack of understanding of carers’ lives, particularly by health providers and government, has resulted in a sense of social disconnect and invisibility that has contributed to stress and is a barrier to coping. Of vital importance to these carers was that partners of younger veterans should not have to suffer the same experiences.
Obsessive-compulsive disorder (OCD) is a mental health problem characterized by persistent obsessions and compulsions. This article provides insights into experiences of OCD through a qualitative, thematic analysis performed on a set of interviews with people with OCD. Four themes were found as central in the participants’ descriptions of OCD episodes: (a) space, (b) the body, (c) objects, and (d) interactions. The findings also show that episodes of OCD can be grouped into three broad categories: (a) activity episodes, which revolve around everyday tasks; (b) state episodes, which are concerned with the self and identity; and (c) object episodes, which are concerned with the effects of objects on the self. The relationship of this three-way classification of OCD episodes to existing cognitive models of OCD is discussed. The study also demonstrates the value of categorizing episodes, rather than people, into subtypes of OCD so that intra-participant variation can be highlighted.
Case management has been widely implemented in the community aged care setting. In this study, we aimed to explore influences on case-managed community aged care practice from the perspectives of community aged care case managers. We conducted 33 semistructured interviews with 47 participants. We drew these participants from a list of all case managers working in aged care organizations that provided publicly funded case management program(s)/packages in Victoria, Australia. We used a multilevel framework that included such broad categories of factors as structural, organizational, case manager, client, and practice factors to guide the data analysis. Through thematic analysis, we found that policy change, organizational culture and policies, case managers’ professional backgrounds, clients with culturally and linguistically diverse backgrounds, and case management models stood out as key influences on case managers’ practice. In the future, researchers can use the multilevel framework to undertake implementation research in similar health contexts.
Thirty-five in-depth, semi-structured interviews were conducted with female, street-based, commercial sex workers in Kathmandu, Nepal. The framework of structural violence guided this study in identifying the structural context that impacts the female sex workers’ lives and may cause harm to their health. Structural violence in health care was revealed through thematic analysis as (a) discrimination, (b) forced choice, and (c) limitations to health information sources. Lived experiences highlight how the sex workers engaged with structural limitations in health care access, services, and utilization. Structural violence conveys a message about who is entitled to health care and what a society emphasizes and expects regarding acceptable health behavior. Examining the structural violence highlighted how the sex workers negotiated, understood, and engaged with structural limitations in health care access, services, and utilization.
Given the profusion of illness-related information, in this article, we consider how talking about information seeking—and in particular Internet use—is difficult, not because it is necessarily a highly sensitive topic (though it may be), but rather due to the unusual and unfamiliar situation of talking about information seeking. Drawing on interviews conducted as part of a study on the educational needs of carers of people with rheumatoid arthritis, we compare three types of interview for understanding online information seeking: interviews (recall), researcher-led observation (joining participant at the computer), and diaries. We discuss the strengths and weaknesses of each approach and discuss how changing interview questions and the form of interaction can help to produce different types of data, and potentially more meaningful insights. Of the three approaches, conducting interviews with participants while looking at a computer (talking while looking) offered the best opportunities to understand Internet-based information seeking.
Despite enormous resources spent on sex education, the United States faces an epidemic of unplanned pregnancy and sexually transmitted infections among young people. Little research has examined the role sex educators play in alleviating or exacerbating this problem. In this study, we interviewed 50 sex educators employed by public schools throughout a Midwestern, U.S. state about their experiences in the sex education classroom. Twenty-two interviewees communicated feelings of conflicted identification and provided examples of the ways in which they experienced this subjectivity in the context of their employment. We find these interviews shed light on the as-yet-understudied communicative experience of conflicted identification by delineating key sources of such conflict and discursive strategies used in its negotiation. Our results suggest that those who experience conflicted identification and who have a sense of multiple or nested identifications within their overarching professional identity may be safeguarded to some extent from eventual organizational disidentification.
In this article, we examine how people living with HIV (PLWH) were able to reconceptualize or "reframe" their understanding of HIV and enhance their capacity to self-manage the condition. Two in-depth interviews were held with 38 PLWH (20 women, 18 men) selected from three government and nongovernment antiretroviral therapy (ART) delivery sites in Wakiso District, and the narratives analyzed. ART providers played an important role in shaping participants’ HIV self-management processes. Health workers helped PLWH realize that they could control their condition, provided useful concepts and language for emotional coping, and gave advice about practical self-management tasks, although this could not always be put into practice. ART providers in this setting were spaces for the development of a collective identity and a particular form of therapeutic citizenship that encouraged self-management, including adherence to ART. Positive framing institutions are important for many PLWH in resource-limited settings and the success of ART programs.
As China’s older adult population has rapidly increased, the attending increase in chronic disease poses serious concerns regarding disparities in medical care utilization for elders. Drawing on 48 semistructured interviews with elders with chronic conditions and their caregivers in China, this article analyzes two opposite patterns of health-seeking behavior in urban and rural areas. Presenting the findings as a relational model, we argue that the interplay between structures of medical care and cultural discourses about health and (un)worthiness generates different habitus as sets of practices and beliefs that facilitate or hinder elders’ and their caregivers’ decisions to engage with medical care. By demonstrating the Chinese state’s social health insurance reform’s failure to improve health-seeking behavior on the ground, our findings suggest that efforts to understand and promote health-seeking behavior need to address the intersections of structural and cultural factors.
As more women become infected with HIV, the issue of childbearing becomes increasingly salient. A more nuanced understanding of women’s situations is needed to provide high-quality and relevant services and support. We examined reproductive decision making among 20 women living with HIV through in-depth interviews. These women made decisions within situations of chaos, instability, and trauma, which often limited their ability to make truly informed choices about their lives and childbearing. Despite their HIV, many of the women wanted children, but experienced stigmatization related both to their HIV and to their decisions to have children. This stigmatization came from multiple sources, including health care providers, some of whom encouraged their patients to abort pregnancies because of their HIV. Participants, however, demonstrated resistance to stigmatization, through building supportive communities and developing trusting relationships with HIV providers. These results support the need for specialized HIV care for women of childbearing age.
Social anxiety disorder typically manifests in young adulthood, but there is an absence of qualitative research on the actual experiences of young adults suffering with this disorder. The aim of the present study was to investigate the lived experiences of 29 Norwegian university students who were seeking professional help for symptoms of social anxiety. We conducted in-depth interviews prior to a clinical trial. The interviews were transcribed and analyzed using a team-based thematic analysis method based on a hermeneutic-phenomenological epistemology. We identified five themes: (a) from being shy to interpreting anxiety as a mental health problem, (b) experiencing emotions as threatening and uncontrollable, (c) encountering loneliness as relationships fall away, (d) hiding the vulnerable self from others, and (e) deciding to face social fears in the future. We relate our findings to existing theory and research, discuss our process of reflexivity, highlight study limitations, and suggest implications for future research.
This study employed qualitative methods to explore eating disorder (ED) patients’ perspectives on their treatment experiences to gain insight into those factors that influenced their motivational trajectory. Semistructured interviews were conducted with a purposive female sample of current (N = 11) and discharged (N = 3) ED service users, aged 18 to 31 years (M = 23.21, SD = 4.19). An interpretive thematic analytic approach, comprising both inductive and deductive methods of analysis, was employed to identify key themes in the data. Self-determination theory (SDT) provided a conceptual lens for analyzing data. Participants highlighted that factors such as physical design and nature of the treatment environment, relational aspects of care, and therapeutic methods all played a role in treatment engagement. The findings highlight ways in which current ED services might more effectively meet the needs of service users and support the utility of applying SDT to the study of motivational dynamics in the treatment of EDs.
Individuals living with chronic kidney disease (CKD) must be mindful of their diet and exercise, take multiple medications, and deal with other compounding illnesses. We observed renal patients’ encounters with health professionals at a renal clinic for tensions and gaps in patients’ and health professionals’ understandings of "living well" with CKD. We found that the renal patients at the clinic become emotionally invested in the fluctuations in the numbers on their blood work. Narrative practices of health professionals greatly affect how patients emotionally deal with the possibility of dialysis, transplant, death, or aging. Expectations to "live well" can become a moral burden to be a "good" patient. The gaps between the priorities of patients, their caregivers, and health professionals complicate the notion of "living well" with CKD. Trust, rapport and the practice of listening appear to have the greatest impact in addressing these gaps.
Only a third of people with mental disorders seek professional help. In this study, we aimed to investigate attitudes toward help-seeking among non-help-seekers drawn from a community survey in South London. We conducted qualitative interviews with 24 participants with symptoms of mental disorders. We analyzed data using thematic analysis. Participants’ reasons for not seeking professional help included perceiving their problems as normal or unsuitable for professional help, negative expectations of professional help, believing informal strategies were sufficient, fearing being stigmatized for having a mental disorder and help-seeking, and self-perceptions of being strong and/or self-reliant. A small number (n = 4) had resolved their problems. Participants with unresolved mental disorders (n = 20) had more chronic stressors, particularly about finances and family relationships, and greater concerns about professional help and stigma than other participants. Potential targets for interventions to encourage help-seeking could be focused around stigma about help-seeking as well as the self-perception of being strong.
Metastatic breast cancer is a disease of changing status—once an imminent death sentence, now a chronic (albeit incurable) disease. Medical intervention advances mean women with metastatic breast cancer now have symptoms alleviated and, potentially, life extended. Living with this disease, however, requires more than a medical approach to symptoms. We were interested to know whether women manage, and if so, how, to "live well" with metastatic cancer. We conducted interviews with 18 women. Women differed in the approaches they used. Most common was the attempt to reestablish a sense of normality in their lives. However, a second group reevaluated and reprioritized their lives; and a third group was restricted in their capacity to live well because of symptoms. The findings provide the foundation for future research exploring normalization of experiences of metastatic cancer, and other chronic illnesses, where people are living with knowledge that they have contracted time.
The literature suggests that the patient-perspective approach (i.e., eliciting and responding to patients’ perspectives, including beliefs, preferences, values, and attitudes) to patient-centered care (PCC) is not a reliable predictor of positive outcomes; however, little is known about why the patient-perspective approach does not necessarily lead to positive outcomes. By using discourse analysis to examine 44 segments of oncologist–patient interactions, we found that providers’ use of patient-perspective contextualization can affect the quality of care through (a) constructing the meanings of patient conditions, (b) controlling interpreting frames for patient conditions, and (c) manipulating patient preferences through strategic information sharing. We concluded that providers’ use of patient-perspective contextualization is an insufficient indicator of PCC because these discursive strategies can be used to control and manipulate patient preferences and perspectives. At times, providers’ patient-perspective contextualization can silence patients’ voice and appear discriminatory.
Surgical sterilization is the primary method of contraception among low-income women in India. This article, using qualitative analysis of key informant, in-depth interviews, and quantitative analyses, examines the antecedents, process, and outcomes of sterilization for women in a low-income area in Mumbai, India. Family planning policies, socioeconomic factors, and gender roles constrain women’s reproductive choices. Procedures for sterilization rarely follow protocol, particularly during pre-procedure counseling and consent. Women who choose sterilization often marry early, begin conceiving soon after marriage, and reach or exceed ideal family size early due to problems in accessing reversible contraceptives. Despite these constraints, this study indicates that from the perspective of women, the decision to undergo sterilization is empowering, as they have fulfilled their reproductive duties and can effectively exercise control over their fertility and sexuality. This empowerment results in little post-sterilization regret, improved emotional health, and improved sexual relationships following sterilization.
This article represents a phenomenological study on how women endow meaning to their scarred bodies after breast cancer treatment. Data collection consisted of multiple interviews with 10 women who had mastectomy, and 9 women who had breast-saving surgery. Against the background of the phenomenological premise that one’s body can appear to oneself in various ways, we identified meaningful differences between experiences that go together with one’s body "at a distance" and experiences that go together with one’s body’s "closeness." The diversity in body experiences we have revealed in our study calls for reconsidering the prejudiced critique of the "body as object" in mainstream phenomenology of health care, and invites medical professionals to develop the ability to recognize different perspectives on embodiment.
Compared with non-Latino Whites, Latino immigrants have a lower prevalence of depression. However, they are also less likely to seek professional mental health services. Our objective was to compare and contrast perceptions of depression and access to mental health care among four of the largest Latino immigrant subgroups in Florida (Puerto Rican, Cuban, Mexican, and Colombian). We conducted a total of 120 interviews (30 men and women from each subgroup). Thematic analysis of qualitative data revealed that participants across the four groups were aware of the signs and symptoms of depression and had similar perceptions of depression. However, notable differences by subgroup emerged with regard to perceptions of access to mental health care. We suggest that the variation stems from differences in life experiences and the immigration context. Understanding the variances and nuances of Latino immigrants’ cultural construction of depression and immigration experience will enable practitioners to better serve this community.
The aim of this article was to describe and analyze the doctor–patient relationship between fibromyalgia patients and rheumatologists in public and private health care contexts within the Mexican health care system. This medical anthropological study drew on hospital ethnography and patients’ illness narratives, as well as the experiences of rheumatologists from both types of health care services. The findings show how each type of medical care subsystem shape different relationships between patients and doctors. Patient stigmatization, overt rejection, and denial of the disease’s existence were identified. In this doctor–patient-with-fibromyalgia relationship, there are difficult encounters, rather than difficult patients. These encounters are more fluid in private consultations compared with public hospitals. The doctor-centered health care model is prevalent in public institutions. In the private sector, we find the characteristics of the patient-centered model coexisting with the traditional physician-centered approach.
Delayed diagnosis and treatment of tuberculosis (TB) among individuals suspected of having TB may lead to continued transmission of Mycobacterium tuberculosis in communities, higher mortality rates, and increase in government health expenditure because of prolonged illness due to late diagnosis and treatment initiation. The study explored factors leading to delayed health care seeking among individuals living in Ntcheu District, Malawi. Two key informant interviews, 16 in-depth interviews, and three focus group discussions were conducted. Participants were aged 18 years and older and never had TB. Data were analyzed using content analysis and factors were identified: inadequate knowledge about cause and transmission of TB, low self-awareness of personal risk to TB, cultural and traditional beliefs about sources of TB, stigma, and strong belief in witchcraft as a cause of illness. The TB Control Program needs to invest in social mobilization and education of communities to mitigate early health care seeking.
Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person’s health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions.
Assistive technologies are often considered to be passive tools implemented in targeted processes. Our previous study of the implementation of the robot bathtub in a Danish elder center suggested that purposeful rationality was not the only issue at stake. To further explore this, we conducted a constructivist secondary qualitative analysis. Data included interviews, participant observations, working documents, and media coverage. The analysis was carried out in two phases and revealed that the bathing of the older people was constructed as a problem that could be offensive to the users’ integrity, damaging to their well-being, and physically strenuous for the staff. The older users and the nursing staff were constructed as problem carriers. We conclude that technological solutions are not merely neutral and beneficial solutions to existing problems, but are rather part of strategic games contributing to the construction of the very problems they seek to solve.
We used thematic analysis to investigate factors affecting decision making about gastrostomy and noninvasive ventilation (NIV) by people with Amyotrophic Lateral Sclerosis (ALS) from the viewpoint of the health care professionals (HCPs) supporting them. We conducted 20 in-depth interviews with 19 HCPs nominated by people with ALS who had made a decision to accept or decline NIV or gastrostomy. We found the main themes influencing decision making were patient-centric, caregiver-related or related to HCPs’ own beliefs, perspectives, and actions. HCPs felt patients should be, and were, in control of decision making, although caregivers and HCPs played a role. The patient’s evaluation of quality of life, the desirability of prolonging life, and acceptance of the disease and its progression by both patient and caregiver were the most important factors identified by HCPs. HCPs should be aware of the importance of multiprofessional discussions, and the potential influences (identified above) that might require discussion with patients and caregivers.
People living with disability or chronic illness often use practices of care to construct a version of life they are satisfied with. Drawing from a narrative-based study with people living with motor neuron disease (MND), I show how one couple tried to be recognized as active agents in their life, although oscillating between positions of less and more power. Through an examination of the practices of care that the couple enacted, I illustrate how their positioning in relation to practices of care helped them create meaning in their life. In their efforts to create a way of living they were satisfied with, they engaged in negotiations between varieties of subjectivity. Their subjectivity was not static but was constructed as they shared power to carry out everyday self-care activities. The findings also underline the importance for health care practices of exploring the experiential knowledge of people living with MND.
This study contributes to the emerging sociological literature on sleep, family, and gender by examining the experience and management of snoring within families. Drawing on in-depth interviews with Jewish–Israeli men and women who snore as well as their family members, this article suggests that sleep is a gendered family affair. Family members attempt to face the challenges of snoring by using several management strategies to mend and sustain family ties, which are part of how they "do family." Nevertheless, men and women experience and manage snoring in different ways, thereby "doing gender" in their sleep management, only to find that "doing gender" and "doing family" often conflict. As a result, both the occurrence and management of snoring make relationships stressful, thereby affecting their quality. This research sheds light on the underexplored micro-processes involved in sleep management while providing unique insight into couple dyads and gender differences.
Participation of people living with HIV/AIDS (PLHA) has become a new standard of good governance in HIV services worldwide, and most HIV organizations make reference to it. This standard has had a considerable impact in Cambodia, where hundreds of PLHA have been recruited by organizations to participate in the development of HIV services. However, participation is a vague concept with various interpretations and applications. Drawing on ethnographic research conducted between 2006 and 2008, this article first clarifies what promoters expect from patient participation in Cambodia and then examines its meanings and uses for one category of PLHA working in hospitals (hereafter "volunteers"). It shows that volunteers have played a valuable role in the scaling-up of access to care and treatment policy, and that although international organizations in Cambodia see patient participation as empowering PLHA, these volunteers face structural violence caused by inherent conflicts within Cambodia’s strict health care hierarchy.
Drawing on the logic of the relational turbulence model, this study examined the ways in which romantic partners facilitate and interfere with individuals’ weight loss goals. Participants (N = 122) described the ways in which their romantic partner had recently helped or hindered their weight loss at four times over the course of 2 months. We conducted a content analysis of responses to identify themes of partner facilitation (Research Question 1 [RQ1]) and partner interference (RQ2) in individuals’ weight loss goals. Results revealed seven themes of partner facilitation: (a) partner enabling diet, (b) motivation and encouragement, (c) emotional support and positive reinforcement, (d) exercising together, (e) partner enabling exercise, (f) dieting together, and (g) relationship influence and priorities. Four themes of partner interference emerged in the data: (a) inability to plan for healthy meals, (b) inability to control the food environment, (c) preventing or discouraging exercise, and (d) emotional or relational discouragement.
Although there is evidence of both clinical and personal recovery from distressing voices, the process of recovery over time is unclear. Narrative inquiry was used to investigate 11 voice-hearers’ lived experience of recovery. After a period of despair/exhaustion, two recovery typologies emerged: (a) turning toward/empowerment, which involved developing a normalized account of voices, building voice-specific skills, integration of voices into daily life, and a transformation of identity, and (b) turning away/protective hibernation, which involved harnessing all available resources to survive the experience, with the importance of medication in recovery being emphasized. Results indicated the importance of services being sensitive and responsive to a person’s recovery style at any given time and their readiness for change. Coming to hold a normalized account of voice-hearing and the self and witnessing of preferred narratives by others were essential in the more robust turning toward recovery typology.
An increasing number of health seekers in the United States are looking outside conventional medicine to address their health needs. It is estimated that in the United States, 38% of adults use complementary and alternative medicine (CAM). Extant research characterizes CAM users as a unified homogeneous group, with little understanding of the differences among them in terms of attitudes toward body, wellness, disease, and pivotal aspects of their personal histories. In this article, we seek to better understand the nuances of who uses CAM and why, using the following questions: How do people communicate their life stories that explain their decision to use CAM? How do the life stories enable us to understand the similarities and differences among CAM users? Based on analysis of the narratives of 18 individuals, three clusters or types of CAM users emerged: natives, immigrants, and tourists. In an effort to push our analysis further, we theorized three dimensions that help to explain CAM users’ objectives, motives, and resultant sense of empowerment. Together, these dimensions comprise The Pathfinder Model of CAM Usage. The Pathfinder Model can be useful to clarify self-understanding among CAM users themselves, as well as for conventional and alternative practitioners, as they establish a working relationship and communicate with their patients during medical encounters. Understanding the path of the health seeker can help influence the quality of the relationship and the communicative strategies providers use to educate and influence.
Low rates of antenatal care (ANC) service uptake limit the potential impact of mother-to-child HIV-prevention strategies. Zambézia province, Mozambique, has one of the lowest proportions of ANC uptake among pregnant women in the country, despite the availability of free services. We sought to identify factors influencing ANC service uptake (including HIV counseling and testing) through qualitative methods. In addition, we encouraged discussion about strategies to improve uptake of services. We conducted 14 focus groups to explore community views on these topics. Based on thematic coding of discourse, two main themes emerged: (a) gender inequality in decision making and responsibility for pregnancy and (b) community beliefs that uptake of ANC services, particularly, if supported by a male partner, reflects a woman’s HIV-positive status. Interventions to promote ANC uptake must work to shift cultural norms through male partner participation. Potential strategies to promote male engagement in ANC services are discussed.
Joint interviewing has been frequently used in health research, and is the subject of a growing methodological literature. We review this literature, and build on it by drawing on a case study of how people make decisions about taking statins. This highlights two ways in which a dyadic approach to joint interviewing can add analytic value compared with individual interviewing. First, the analysis of interaction within joint interviews can help to explicate tacit knowledge and to illuminate the range of often hard-to-access resources that are drawn upon in making decisions. Second, joint interviews mitigate some of the weaknesses of interviewing as a method for studying practices; we offer a cautious defense of the often-tacit assumption that the "naturalness" of joint interviews strengthens their credibility as the basis for analytic inferences. We suggest that joint interviews are a particularly appropriate method for studying complex shared practices such as making health decisions.
Various care approaches are provided to support families with newly diagnosed children in their task of diabetes management. We conducted qualitative interviews with 36 parents of 23 children, newly diagnosed with type 1 diabetes. The parents were recruited from participants in a Randomized Controlled Trial (RCT) evaluating hospital-based care (HBC) and hospital-based home care (HBHC), to explore their experiences of two different approaches to diabetes care. The HBC was considered as being safe but not family- or diabetes-oriented. The HBHC was described as a relaxed environment, providing individualized accessibility and possibilities for situational learning and was considered as more flexible, promoting normality and involvement. The transition to home was followed by a gradual discharge, which included contradictory feelings, ambivalence, and hesitation and also being prepared and ready for facing daily life. The core category depicts differences regarding the degree of family participation, from passive to more active participants in initial diabetes management.
We explored the meta-emotion philosophies of Indian immigrant mothers living in the Midwest region of the United States to expand the scarce literature on emotion socialization in diverse families. A total of 15 mothers of teen and preteen children participated in a meta-emotion interview, in which they were asked about their own and their children’s experiences of anger, sadness, and fear. We analyzed interview responses through an open-ended phenomenological approach and found the following major themes: familial context of emotions, subtle communication of emotions, and an overarching philosophy centering on inevitability of negative emotions and the importance of moving on. Mothers differed in how well they believed that they could move on. Overall, the present findings demonstrate the role culture plays in emotional experiences of immigrant mothers and serve as a reminder that theories based on European American families might have limited applicability to other cultural and ethnic groups.
We report an ethnographic analysis of a psycho-education and peer-support program for school-aged children of parents with mental illnesses. We conducted a critical discourse analysis of the program manual and observed group interactions to understand whether children shared program goals predetermined by adults, and how, or if, the intervention was responsive to their needs. Children were expected to learn mental illness information because "knowledge is power," and to express difficult feelings about being a child of a mentally ill parent that was risky. Participants used humor to manage group expectations, revealing how they made sense of their parents’ problems, as well as their own. Suggestions are made for determining good mental health literacy based on children’s preferences for explaining circumstances in ways they find relevant, and for supporting children’s competencies to manage relationships that are important to them.
The occurrence of interpersonal trauma is a reality for many women, with effects that often persist long after the traumatic events end. The purpose of this feminist grounded theory study was to examine how past trauma shaped the lives of women as they became new mothers. We recruited a purposive sample of 32 women from two Canadian communities and conducted semistructured, dialogic interviews during the second trimester of pregnancy. We analyzed data using thematic content analytic methods, including open coding whereby we read transcripts line by line and applied codes to portions of text that illustrated concepts or themes. The substantive grounded theory, "laboring to mother in the context of past trauma," describes the exceedingly difficult emotional and cognitive work undertaken by pregnant women with histories of trauma as they anticipate becoming mothers. In this article, we present key components of the theory and offer recommendations for health and social service providers.
Despite the increasing implementation of standardized rape kits across jurisdictions, the medico-legal findings generated by these tools are often not related to positive criminal justice outcomes. Given that there has been no global investigation of the factors that might impede their successful use in cases of sexual assault, we conducted a review of relevant scholarly and "grey" literature from industrialized and less-developed regions. One key theme to emerge from the analysis concerned certain problematic practices and behaviors of professional groups involved in the various stages of the post-sexual assault process. We found that a lack of competence in handling sexual assault cases, contempt for women who have been victimized, and corruption among some forensic examiners, police, scientists, and legal personnel often have shaped the collection, processing, analysis, and use of medico-legal evidence. We discuss recent initiatives and future directions for research that might serve to address these issues.
We examined structural factors—social, political, economic, and environmental—that increase vulnerability to HIV among indigenous people in the Peruvian Amazon. Indigenous adults belonging to 12 different ethnic groups were purposively recruited in four Amazonian river ports and 16 indigenous villages. Qualitative data revealed a complex set of structural factors that give rise to environments of risk where health is constantly challenged. Ferryboats that cross Amazonian rivers are settings where unprotected sex—including transactional sex between passengers and boat crew and commercial sex work—often take place. Population mobility and mixing also occurs in settings like the river docks, mining sites, and other resource extraction camps, where heavy drinking and unprotected sex work are common. Multilevel, combination prevention strategies that integrate empirically based interventions with indigenous knowledge are urgently needed, not only to reduce vulnerability to HIV transmission, but also to eliminate the structural determinants of indigenous people’s health.
Bariatric surgery provides sustainable weight loss and increased quality of life for most, but not all patients. To increase the knowledge of this complex patient group and their needs during follow-up, we aimed to describe the essential meaning of bariatric surgery patients’ long-term experiences by using a phenomenological lifeworld approach. Eight patients were interviewed between 5 and 7 years after bariatric surgery. Life after bariatric surgery was described as living with tension, ambivalence, and reinforced attention toward one’s own body. The tension was related to embodied change and altered relations to the social world. The patients express an ongoing demand for control of health-related habits and practices, and to not lose control over the body again. Surgical weight loss and improved physical function do not necessarily mean changed health-related habits and practices in the long term. Experiencing weight regain is connected with emotional stress, shame, and self-contempt.
Colorectal cancer (CRC) is one of the most prevalent cancers worldwide, and an ideal target for early detection and prevention through cancer screening. Unfortunately, rates of participation in screening are less than adequate. In this article we explore why people who were offered a fecal immunochemical test for CRC decided to participate or not, and for those who did participate, what influenced them to take action and complete the test. We conducted four focus groups and 30 telephone interviews with 63 people. The main reason people decided to screen was "wanting to know" their CRC status, which operated on a continuum ranging from wanting to know, through varying degrees of ambivalence, to not wanting to know. The majority of participants expressed ambivalence about CRC screening, and the main cue to action was the opportunity to screen without being too inconvenienced.
Health care providers exert a significant influence on parental pediatric vaccination decisions. We conducted hour-long interviews with traditional and alternative health care providers in which we explored a range of associations between vaccination perceptions and practice. A key finding was that the Health Belief Model constructs of perceived susceptibility to and severity of either an illness or an adverse vaccine event partially explained health care provider (HCP) beliefs about the risks or benefits of vaccination, especially among alternative care providers. Low or high perceived susceptibility to a vaccine-preventable disease (VPD) or of the severity of a given VPD affects whether an HCP will promote or oppose pediatric vaccination recommendations. Beyond these perceptions, health and vaccination beliefs are affected by the contextual factors of personal experience, group norms, immunology beliefs, and beliefs about industry and government. Building powerful affective heuristics might be critical to balancing the forces that defeat good public health practices.
In this article, I examine how individuals diagnosed with early-onset Alzheimer’s disease use illness narratives to construct community. The ability to narrate is a fundamental component of the self. Using 354 posts by 32 members of an Internet forum, I argue that people with Alzheimer’s, whose ability to narrate, and thus create a self, was compromised, nonetheless managed to tell stories of redemption out of which a salvaged self emerged. Narratives are essential for the construction of self, but as I show in this article, they are also essential for the construction of community. Forum members shared stories, gave advice, offered encouragement, and commiserated about their symptoms in ways that generated solidarity. Internet forums provide a venue for people with illnesses who are unable to leave the home to construct community.
Some cancer survivors report positive subjective changes they describe as "life transforming." We used a grounded theory approach to identify the content, underlying process, and identifying characteristics of self-defined "life-transforming" changes (LTCs) reported by 9 cancer survivors. To actualize their hopes for improvement, participants used a self-guided process centered on pragmatic action: researching options, gaining experience, and frankly evaluating results. Many participants discovered unanticipated personal abilities and resources, and those became highly useful in coping with other challenges apart from cancer. This made the increased personal abilities and resources "life transforming" rather than being substantially limited to reducing cancer-related problems. The action-oriented features and processes of LTCs seemed to be more fully described by experiential learning theory than by posttraumatic growth and coping. Supportive intervention to facilitate positive change processes could decrease suffering and enhance positive psychosocial and spiritual outcomes for cancer survivors.
In assessing geriatric patients’ functional status, health care professionals use a number of standardized tests. These tests have defined administration procedures that restrict communication and interaction with patients. In this article, we explore the experiences of occupational therapists and physiotherapists acting as standardized test administrators. Drawing on fieldwork, interviews with physiotherapists and occupational therapists, and observations of test situations on acute geriatric wards, we suggest that the test situation generates a tension between what standardization demands and what individualization requires. Our findings illustrate how physiotherapists and occupational therapists navigate between adherence to the test standard and meeting what they consider to be the individual patient’s needs in the test situation. We problematize this navigation, and argue that the health care professional’s use of relational competence is the means to reach and maintain individualization.
Culture might offer significant insights into the circumstances under which mistreatment occurs. Our aim with this study was to understand and explore institutional mistreatment from a care culture perspective. We used a case study with a triangulating methodology. It involved 12 individual interviews, one focus group interview with four people, a 2-day field study, and a document study. The case was a mistreatment situation that had occurred in municipal care, in which residents had been locked in their rooms at night. Two different care cultures were identified that could give a richer contextual understanding of the motives behind the institutional mistreatment. The service culture was need-oriented and emphasized freedom in care provision. The motherhood culture was characterized by protection and safeguarding of the vulnerable residents. Both cultures showed traces of caring values, but when important caring values were absent, this created a seedbed for mistreatment.
Restorative justice alternatives to criminal justice are designed to balance the needs of victims, offenders, families, friends, and the community at large to achieve social justice, repair of victims, and deterrence of crime. In the model we evaluated from RESTORE (Responsibility and Equity for Sexual Transgressions Offering a Restorative Experience), each offender and victim received individual services and met in guided conferencing to mutually determine reparative actions for the offender. At the exit meeting, the offender, as the responsible person, read a written apology to the survivor/victim. In this article, we analyze the expression of empathy in the apology, in which the initial mitigation of responsibility in early documents was replaced by acknowledgment of harm to the survivor/victim and acceptance of responsibility for the assault. Those accused of felony rape and those targeting a visible person in cases of misdemeanor indecent exposure expressed greater regret and remorse than offenders of indecent exposure with an indeterminate victim.