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British Journal of Learning Disabilities

Impact factor: 0.291 Print ISSN: 1354-4187 Online ISSN: 1468-3156 Publisher: Wiley Blackwell (Blackwell Publishing)

Subject: Special Education

Most recent papers:

  • In search of a family: The contribution of art psychotherapy to a collaborative approach with a man residing in a forensic learning disability setting.
    Domanic Caveney, Shaun Wassall, Kelly Rayner.
    British Journal of Learning Disabilities. October 19, 2017
    Accessible Summary Some clients in learning disability services have problems in their relationships with people. Some clients with learning disability have broken the law and live in hospital. For clients in hospital, treatment can be learning about managing behaviour, feelings and relationships.  This treatment is given by different professionals. This treatment is important to help stop these clients getting into trouble with the police again. An important part of treatment is to help clients understand their experiences in relationships. This case study is about Oliver, and how psychologists and an art therapist worked together to help him.​ Abstract Background Clients with attachment issues are over‐represented in learning disability services. Forensic inpatient services are no exception. Treatment pathways comprise multidisciplinary interventions, and skills‐based treatments are considered vital to recovery and maintenance of prosocial and adaptive behaviour and reduction in risk. An important aspect of treatment is the psychological intervention to enable clients to understand their early experiences and the way this may have impacted on later relationships and behaviour. Without exploring the difficult early lives that many clients in forensic inpatient services have experienced, skills‐based treatments and attempts to facilitate discharge may not be effective. Materials and methods This case study presents the theoretical background of attachment, autism, learning disability and sexual offending that informed the collaborative multidisciplinary psychological treatment offered to one man with learning disabilities and autism in a secure forensic setting. Results The introduction of Art Psychotherapy enabled the client to explore his history and the potential internal barriers to his therapeutic progress. Issues of safety and belonging, previously unexplored with this man, were uncovered and these themes were incorporated into his risk formulation and treatment plan. Conclusions The paper reflects on the specific contribution of Art Psychotherapy in specialist services, and the importance of the collaborative relationship between the Art Psychotherapist and the ward Multi‐Disciplinary Team.
    October 19, 2017   doi: 10.1111/bld.12204   open full text
  • Active adult lives for persons with learning disabilities—The perspectives of professionals.
    Aud Elisabeth Witsø, Anna M. Kittelsaa.
    British Journal of Learning Disabilities. October 19, 2017
    Accessible Summary The government says that all adults should have the opportunity to live active adult lives. Many people with learning disabilities need support from professionals to realise living active adult lives. We asked some professionals what active adult living means and they believed it is about self‐determination and making healthy choices. Some of those we talked to said it was necessary to have more time to support active adult living in people with learning disabilities. Abstract Background Living active adult lives is both a value and a right, but the right to do so is associated with restrictions among adults with learning disabilities. This research aimed to capture professionals’ understanding and perception of active adult living for people with learning disabilities living in clustered housing in a Norwegian community. Materials and Methods Field notes and transcripts of interviews were analysed by systematic text condensation based on Giorgi's psychological phenomenological analysis, with focus on the professionals’ own expressions about their experiences and not an exploration of deeper meanings. Results and Discussion The analysis identified four main themes: (i) active adult life as independent living and self‐determination, (ii) choice of lifestyle, (iii) accommodation and privacy and (iv) the role of professionals. Results are discussed against concepts like dependence, independence and interdependence. Conclusion The role of professionals and structural conditions for support and care is crucial for how active adult living is realised for people with learning disabilities. The results highlight the need for further discussions of conditions for active adult living in people with learning disabilities.
    October 19, 2017   doi: 10.1111/bld.12207   open full text
  • Fathers of adults who have a learning disability: Roles, needs and concerns.
    Deborah Davys, Duncan Mitchell, Rachel Martin.
    British Journal of Learning Disabilities. October 04, 2017
    Accessible summary This study asked fathers of adults who have a learning disability about their experiences, what helps them and any worries they may have. Fathers reported different experiences of being a father to an adult with a learning disability and talked about things that were helpful, such as their wives, grandparents, having information and hobbies. Fathers were worried about the person who has a learning disability in the future. Fathers can be important in supporting people who have a learning disability throughout their lives. Abstract Background There is little research that specifically relates to fathers of adults with a learning disability despite the social expectation that fathers will provide a supportive role over the lifespan. Methods Semi‐structured interviews were carried out with seven fathers of adults with a learning disability to explore their roles, needs and concerns. Data were analysed using a framework associated with interpretative phenomenological analysis (IPA). Results Themes arising demonstrate that fathers were shocked at the diagnosis of learning disability but usually reported adaptation over time. The impact of learning disability upon men's lives, their perception of their adult child and the roles they assumed were varied. Fathers valued support from wives and grandparents, having knowledge and interests and work‐type roles. All fathers were concerned about the future yet comprehensive futures planning was lacking. Some fathers reported difficulties in being emotionally open, and referred to societal stereotypes. Fathers valued positive support from service providers; however, this relationship was often in conflict. Conclusion Although mothers are often the main carers for adults with a learning disability, fathers can make a significant contribution. The findings presented here support the results of previous studies regarding paternal response to learning disability and varied impact upon men's lives. Identified support strategies include leisure interests, volunteer/work roles, having information and support from wives and grandparents. Ongoing concerns incorporate the future and ambivalent relationships with service providers, which could have a negative impact upon the individual who has a learning disability.
    October 04, 2017   doi: 10.1111/bld.12205   open full text
  • The use of psychotropic medication for people with intellectual disabilities and behaviours that challenge in the context of a community multidisciplinary team approach.
    Abigail Niven, Rebecca Goodey, Alison Webb, Rohit Shankar.
    British Journal of Learning Disabilities. October 04, 2017
    Accessible Summary Lots of people with intellectual disabilities in the UK are given medication to manage their behaviours and the NHS wants this to stop. In Cornwall, we wanted to see how often we give medication to people instead of other health care such as communication or occupational assessments etc. We found that around half the people we work with because of their behaviours get medication to manage their feelings and many do not get other assessments. We want to change this in Cornwall and stop over medicating people by learning from this study. Abstract Background The use of psychotropic medication to manage challenging behaviours of people with intellectual disabilities is a contentious issue which NHS England has now focused on. This paper looks to evaluate this within the multidisciplinary context. Method Records of clients (n = 106) open to a Community Intellectual Disabilities team for care relating to challenging behaviours were examined. Those recommended psychotropic medications in the absence of a mental health diagnosis were scrutinised for supporting MDT assessments. Results Over half the clients with challenging behaviours were being prescribed psychotropic medications and many of those had very few MDT assessments to inform care. Conclusions This study demonstrates the extent psychotropics are used in the absence of MDT informed support for people with intellectual disabilities and behaviours that challenge. A vision to simply withdraw such medication might be simplistic. Local MDT plans are in development to systematically reduce reliance on this type of restrictive practice.
    October 04, 2017   doi: 10.1111/bld.12206   open full text
  • A mindfulness‐based group for young people with learning disabilities: A pilot study.
    Victoria Thornton, Rachel Williamson, Bronwen Cooke.
    British Journal of Learning Disabilities. September 13, 2017
    This study talks about a group for young people with learning disabilities The group helped the young people to practice mindfulness. Mindfulness practices can help when we feel worried, angry or upset. The young people in the group gave really helpful feedback that will help to make the next group even better. Abstract Background Mindfulness is becoming increasingly reported as an effective way to support well‐being and reduce mental health difficulties. Materials and Methods This study reports on the development and pilot of a mindfulness‐based group for young people with learning disabilities and their carers. Results Group participants reported that the group was helpful. Reports from carers show that the young people continued to use mindfulness‐based practices in their daily lives even after the completion of the group. Conclusion Mindfulness can be effective and accessible for young people with learning disabilities. More research is needed to increase our understanding of how and why participation in a mindfulness‐based group is helpful to young people with learning disabilities.
    September 13, 2017   doi: 10.1111/bld.12203   open full text
  • “Everyone thought I was a very very bad person… no one want to know you like the nurses and doctors”: Using focus groups to elicit the views of adults with learning disability who use challenging behaviour services.
    Mark Haydon‐Laurelut, Jane Edmonds, Shona Daynes, Amy Clare, Rosalind Byles, Victoria Barber.
    British Journal of Learning Disabilities. August 21, 2017
    We wanted to find out what adults with learning disabilities who receive challenging behaviour services thought about challenging behaviour and the services they receive. We met with people in small groups and talked with them about challenging behaviour. There were barriers to attending the groups like services not having enough staff or transport. People in the groups told us what they thought of words like challenging behaviour, what they understood about challenging behaviour services, and what it was like meeting with them. Abstract Background Following scandals such as Winterbourne view, Department of Health, (A national response to Winterbourne View Hospital, 2012) seeks changes in challenging behaviour services. A key part of this change is ensuring people with learning disabilities who use challenging behaviour services have more personalised support and their voices are heard. Materials and Methods This article describes a study that used focus groups to explore challenging behaviour and challenging behaviour services with people with learning disabilities who used community‐based challenging behaviour services. We analysed the focus groups using thematic analysis. Results We found three main themes: Engaging with service terminology: the language of Challenging Behaviour; Locating and Framing behaviour; and Engaging with Professionals. Conclusion People with learning disabilities who receive challenging behaviour services are able to participate in focus groups and tell us about their experiences. Further consideration is required concerning how people with learning disabilities experience their engagement with challenging behaviour services. This study has led to a larger study currently in progress.
    August 21, 2017   doi: 10.1111/bld.12202   open full text
  • The role of the appropriate adult in supporting vulnerable adults in custody: Comparing the perspectives of service users and service providers.
    Tricia Jessiman, Ailsa Cameron.
    British Journal of Learning Disabilities. August 10, 2017
    Accessible Summary When a vulnerable adult is in police custody, they should have someone with them to help them understand what is happening. This person is called an appropriate adult (AA). Previous research has shown that the role of the AA is not always well understood. This study compares the views of both professionals and vulnerable adults. Adults with learning disabilities and mental health problems said looking after them and helping them communicate were the most important things an AA should do. Like other studies have shown, not all adults who should be provided with an AA in custody have had one. This may be because no agency has a statutory duty to provide one. This study recommends that AA services should try and engage more effectively with vulnerable adults. Abstract Background Police custody sergeants have a duty to secure an AA to safeguard the rights and welfare of vulnerable people detained or questioned by the police. This study focuses on the role of the AA in supporting vulnerable adults and seeks to examine what stakeholders would expect from an effective AA service. Methods This was a qualitative study of four AA services in England. Interviews were undertaken with 25 professionals, and two focus groups were held with service‐user groups (13 participants). Results There is disparity between the expectations of professionals, and service users, on what comprises an effective service. Professionals tend to prioritise the availability and response time of AAs, while service users prioritise their personal attributes and demeanour. Conclusions Professionals involved in commissioning and management of AA services should monitor whether the rights of vulnerable adults in custody are protected and better engage vulnerable adults beyond service delivery.
    August 10, 2017   doi: 10.1111/bld.12201   open full text
  • Improving service responses for people with learning disabilities who have been sexually assaulted: An audit of forensic services.
    Angela Olsen, Rabiya Majeed‐Ariss, Simonette Teniola, Catherine White.
    British Journal of Learning Disabilities. July 21, 2017
    When people report being sexually assaulted they can be examined by a specially trained doctor to see how the assault might have affected them. They may also ask for help from a counsellor or other specially trained support workers. These staff might belong to a sexual assault referral centre (SARC). This study reports findings from work that staff from St Mary's SARC in Manchester did so that they could improve the services they offer to people with learning disabilities who have been sexually assaulted. A staff survey showed that staff thought they might not always recognise if a person had learning disabilities or another learning difficulty like dyslexia. We wonder if knowing the difference is as important as knowing how to support people well. Looking at patient notes showed that patients with learning disabilities received less follow‐up care than patients without learning disabilities. This study describes the first step that the SARC team took to improve their service. Improvements have been made based on these first findings, including some of those recommended by staff in their surveys. These will be reported in another paper to see if they have made a difference to people with learning disabilities. Abstract Background People with learning disabilities are more likely to experience sexual abuse and less likely to access support than the general population, this is due to a range of variables at the individual, societal and service‐delivery level. This study presents a service evaluation of St Mary's Sexual Assault Referral Centre, Manchester to explore its ability to provide meaningful support to people with learning disabilities and to identify ways to improve its responses. Materials and Methods The service evaluation had two components: (i) A staff survey to elicit self‐perception of the knowledge and skills required to meaningfully support people with learning disabilities who attended the centre following an allegation of rape or sexual assault (ii) An audit of patient notes to compare service delivered to patients with a learning disability to those without. Results Forty‐two members of staff (over 75% response rate) completed the survey which found a lack of differentiation between learning disabilities and other types of neurodiversity. The majority of responders reported having enough knowledge about learning disabilities to do their job and feeling confident in their abilities. Nonetheless, all the staff reported that they would like more learning disability training. An audit of the patients’ notes found people with learning disabilities accessed fewer follow‐up care services than people without learning disabilities. Conclusions The results identify areas for staff training to improve meaningful support for people with learning disabilities alongside a note of caution against a focus on labelling. By introducing more accessible support a diverse group of people can benefit.
    July 21, 2017   doi: 10.1111/bld.12200   open full text
  • Mental capacity to consent to research? Experiences of consenting adults with intellectual disabilities and/or autism to research.
    Jahnese Hamilton, Barry Ingham, Iain McKinnon, Jeremy R. Parr, Louise Yuen‐Chong Tam, Ann Le Couteur.
    British Journal of Learning Disabilities. July 17, 2017
    Accessible Summary The NHS Constitution states that all patients should have opportunity to take part in approved research This study asked clinical researchers how they include people with intellectual disabilities and/or autism in research Many barriers were identified that relate to making mental capacity judgements Many researchers agreed new resources that support consent and capacity judgements for research would be helpful and gave some ideas about what could help . Abstract Background Adults with intellectual disabilities and/or autism are often excluded from participating in health and healthcare research. Understanding study information, which is an important aspect of demonstrating capacity to give informed consent, can be a particular challenge. This study surveyed clinical researchers to discover: (i) their experiences of assessing mental capacity for research; (ii) what methods they used to facilitate the inclusion of adults with intellectual disabilities and/or autism; and (iii) their views about a proposal to develop new resources to facilitate mental capacity judgements with adults with intellectual disabilities and/or autism for informed consent for research. Methods Clinical researchers in North East England who conduct research with NHS patients with intellectual disabilities and/or autism were invited to participate in a 22‐item self‐completed semi‐structured questionnaire survey, either online or on paper. Results Twenty‐one clinicians completed the survey (response rate 30.4%). Participants reported on 18 research studies which included people with intellectual disabilities and/or autism. In many studies people who lacked capacity to give informed consent were excluded, and often shortcuts were taken in judging capacity. Limited adaptations to support capacity were used. Respondents welcomed the proposal of developing assistive resources that could support capacity judgements and informed consent to research. Conclusions To improve access to research for people with intellectual disabilities and/or autism, researchers need robust methods to facilitate informed consent and mental capacity judgements. Future research should determine which assistive resources show potential to support informed consent and capacity decisions, and whether such resources could improve inclusion in research.
    July 17, 2017   doi: 10.1111/bld.12198   open full text
  • “Tell me what they do to my body”: A survey to find out what information people with learning disabilities want with their medications.
    Rebecca Fish, Chris Hatton, Umesh Chauhan.
    British Journal of Learning Disabilities. July 10, 2017
    Accessible summary We gave a questionnaire to self‐advocates who were attending a conference. The questionnaire asked them how they felt about the information they get with their medicine. Fifty‐eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy‐read leaflets and pictures. There are many different places to find easy‐read information on the internet. We think they should be collected and checked. We also think that doctors and chemists need to spend more time with people to explain about medicines. Abstract Background Previous research has found that people with learning disabilities are not given prescription information that is tailored to their needs. We wanted to find out people’s information requirements. Materials and Methods A questionnaire was co‐produced by the authors and consultants with learning disabilities. It asked what information people received from their GP and pharmacist about medications. The questionnaire was circulated at a self‐advocacy conference in the North of England. Fifty‐eight self‐advocates completed the questionnaire. Results Information from GPs and pharmacists was mainly instructional, referring to when and how to take the medicine and dosage. Most respondents struggled to read the leaflets and remember verbal information. Many wanted the information in easy‐read format, and some wanted pictures or diagrams as well. A key theme was that health professionals often talked only to carers or support workers rather than involving the patient directly, and some respondents disclosed that they were not informed about side effects or alternative medications. Conclusions Health professionals should take time to discuss health issues and medication with the individual rather than only with carers. This could be facilitated by providing information in an accessible format.
    July 10, 2017   doi: 10.1111/bld.12196   open full text
  • Experiences of two multidisciplinary team members of systemic consultations in a community learning disability service.
    Clair Johnson, Nina Viljoen.
    British Journal of Learning Disabilities. June 28, 2017
    Accessible Summary People with learning disabilities may have help from their families, paid carers and professionals such as nurses, psychologists etc. Professionals (like psychologists) can help people with learning disabilities and their families, carers and other professionals by meeting to talk about solutions together. This is called a systemic consultation. We asked two people who came to the systemic consultations what they thought was helpful and unhelpful about the systemic consultations. The two people we asked were two professionals who worked with people with learning disabilities. The helpful things were that the systemic consultations might have helped people to feel better about themselves and speak about their worries. People may feel that others care about them too. People with learning disabilities started to find their own answers to the difficulties they had. We found that the people who were responsible for the systemic consultations asked some helpful questions. For example, they spoke in a positive way and tried to talk about the things that people were good at. Another helpful thing was that coming to the systemic consultations helped people to get on better with each other. The unhelpful things were that people coming to the systemic consultations thought that something else would happen at the consultations. They also thought that sometimes there were too many people at the systemic consultations. They said that it was not helpful if the people who help in the systemic consultations change. After looking at the answers the people gave, we talked about the things that can be done to make sure that systemic consultations become more helpful for everyone. Abstract Background Systemic approaches can be useful in working with people with learning disabilities and their network. The evidence base for these approaches within the field of learning disabilities, however, is currently limited. Materials and Methods This article presents part of a service evaluation of systemic consultations in a Community Learning Disability Service (CLDS). Two multidisciplinary team professionals were interviewed about what they found helpful and unhelpful in their experiences of attending systemic consultations. Interview data were analysed via applying thematic analysis principles. Results Five main themes were elicited: differing expectations, enabling for the client, positive techniques, uncertainty regarding “forum” (“forum” meaning the collective of all of the individuals meet, which could include the professionals, lead therapist, reflecting team, etc.) composition and strengthening the network. Conclusions Systemic consultations provided some positive and valuable experiences along with important caveats. Considerations for clinical practice are therefore discussed. Continued evaluation of systemic consultations within CLDSs is recommended.
    June 28, 2017   doi: 10.1111/bld.12191   open full text
  • Internet use, risks and online behaviour: The view of internet users with intellectual disabilities and their caregivers.
    Esther Chiner, Marcos Gómez‐Puerta, María Cristina Cardona‐Moltó.
    British Journal of Learning Disabilities. June 26, 2017
    Accessible summary Going online is important because we can learn, meet people and get information. But some actions by others or by ourselves can be harmful. We wanted to find out how people with intellectual disabilities in Spain go online and the problems they have using the Web. We asked 77 adults with intellectual disabilities and 68 caregivers to answer questions about how people with intellectual disabilities use the Web. We found that people with intellectual disabilities prefer smartphones to go online and that they listen to music, watch videos or chat with friends online. We also found out that sometimes they have problems such as receiving insults or being blocked. Abstract Background Internet offers opportunities to people with intellectual disabilities, but it also involves some risks. The aim of this study was to explore these issues considering caregivers and people with intellectual disabilities’ perspectives. Materials and Methods A descriptive, cross‐sectional study was conducted. The sample consisted of 77 adults with intellectual disabilities and 68 caregivers from a Spanish service provider organisation. Results Compared to previous research, findings show an increasing use of electronic devices such as smartphones and the Internet by people with intellectual disabilities. Some online risks (e.g., being insulted, being threatened, someone using their personal information) and undesirable behaviours of this group (e.g., insulting, threatening or flirting with someone who did not want to) were also identified. Differences between the responses of people with intellectual disabilities and their caregivers were found with regard to people with intellectual disabilities’ online behaviour. Conclusions It is important to design, validate and implement strategies to promote risk management and positive risk‐taking actions for people with intellectual disabilities.
    June 26, 2017   doi: 10.1111/bld.12192   open full text
  • An examination of the addition of video informed reflective practice to the active support toolkit.
    Peter Baker, Philippa Appleton, Rosie Williams.
    British Journal of Learning Disabilities. June 23, 2017
    Accessible summary Active support is one of the best ways of getting people with learning disabilities to be busy and to look after themselves. Good relationships between staff and people with learning disabilities are important. This study looked at organising staff to be better at supporting the person with a learning disability. We also got them to record on video how they worked with the person. They watched these videos back so they could find out how to improve their support. The results showed that the staff were better at helping service users do things for themselves and that service users were busier. It is also showed that staff had better relationships with the service users. Abstract Background This study evaluated a package of Active Support (AS), which included standard training with additional video informed reflective practice. Materials & Methods The training package was implemented as part of a service improvement initiative in four residential intellectual disability homes, using a concurrent multiple baseline across environments design. Training consisted of a 1‐day workshop, and follow‐up coaching. Momentary time sampling was used to measure engagement levels and staff assistance. A new observational tool was piloted to code the presence of positive and negative interactions between staff and the people with intellectual disabilities. Results Results showed that service user engagement levels and staff assistance increased significantly following the training. There was also a significant increase in positive interactions and a significant decrease in negative interactions between staff and service users. Conclusion The implications of these results are discussed.
    June 23, 2017   doi: 10.1111/bld.12193   open full text
  • Outcomes and experiences of an adapted Dialectic Behaviour Therapy skills training group for people with intellectual disabilities.
    Tom Crossland, Olivia Hewitt, Sarah Walden.
    British Journal of Learning Disabilities. June 19, 2017
    Accessible summary Some people who find it hard to manage their emotions can be helped by a therapy called Dialectic Behaviour Therapy (DBT). Some studies show that DBT might help people with an intellectual disability. We ran a group to see if DBT helped people coming to the group to feel better and manage their difficult feelings more easily. Group members brought their support staff to the group. We asked people what they thought about the group and asked them to fill in some questionnaires to see whether they felt better. The group seemed to help people, even after the group ended. We think DBT might be a useful treatment for people with intellectual disabilities. Abstract Background A growing body of evidence supports the use of Dialectic Behaviour Therapy with people with an intellectual disability. Various adaptation have been used in studies exploring the efficacy of this intervention. Method A Dialectic Behaviour Therapy DBT skills training group was attended by people with an intellectual disability and their support staff. Standardised measures of psychological well‐being, overall functioning and psychological distress were taken before and after the group and at 4 months follow‐up. Qualitative interviews were conducted and analysed using thematic analysis. Results Results suggested an improvement in all areas for three of the four participants, which were largely maintained at follow‐up. Conclusions This study adds to the growing literature supporting the use of DBT with people with an intellectual disability. The role of support workers in supporting generalisation of skills is considered. Ideas for improving the quality of future studies are considered.
    June 19, 2017   doi: 10.1111/bld.12194   open full text
  • “…their opinions mean something”: Care staff's attitudes to health research involving people with intellectual disabilities.
    Natalie Hall, Marie‐Anne Durand, Silvana E. Mengoni.
    British Journal of Learning Disabilities. June 19, 2017
    Accessible summary It is important for people with intellectual disabilities to be involved in research about their health care. Eight people working in the care sector were interviewed about their views about supporting people with intellectual disabilities to take part in research. Care staff were positive about research but talked about things that may make it difficult for people with intellectual disabilities to take part in research. We suggest some ideas that could help care staff and researchers to support people with intellectual disabilities to take part in research. Abstract Background Despite experiencing health inequalities, people with intellectual disabilities are under‐represented in health research. Previous research has identified barriers but has typically focused on under‐recruitment to specific studies. This study aimed to explore care staff's attitudes to health research involving people with intellectual disabilities, identify barriers to conducting such research and consider solutions to those barriers. Materials and Methods Eight members of care sector staff took part in a focus group or telephone interview, to explore their views on health research involving people with intellectual disabilities. The transcriptions were analysed using thematic analysis; 50% were double‐coded, and the emerging themes were agreed by three researchers. Results Three themes were identified: perceptions of research; barriers to conducting research; solutions to maximise recruitment and project success. Benefits to research were identified, but there were concerns that the time and effort required may outweigh these benefits. Barriers were identified including organisational policy and following the Mental Capacity Act 2005. There was some indication that such barriers may differ according to the severity of intellectual disabilities and the type of care setting. Solutions were proposed that involved greater collaboration between researchers and the care sector, and a more flexible approach to research. Conclusions Care staff are largely supportive of research that is appropriate and relevant to their service users. However, there is a need for clear communication from researchers and flexible recruitment and data collection strategies. This is likely to be facilitated by closer collaboration between researchers and the social care sector.
    June 19, 2017   doi: 10.1111/bld.12195   open full text
  • A longitudinal study of post‐school provision for Irish school‐leavers with intellectual disability.
    Roy McConkey, Fionnola Kelly, Sarah Craig, Fiona Keogh.
    British Journal of Learning Disabilities. May 24, 2017
    Accessible summary In Ireland school leavers with intellectual disabilities were tracked over a 10‐year period from 2004 to 2014. Nearly half were no longer known to services after 10 years. In the 5 years after leaving school, most young adults went to either training centres or to care centres. After 10 years, most were placed in care centres. Few were getting help to obtain paid work or were receiving support in the community. New models of day supports are being promoted by the Government but they are not widely available. Shortage of money and pressure to provide places for school leavers may have contributed to the growth of attendances in care centres. Abstract Background In recent years, efforts have been made to improve the transition of pupils with intellectual disabilities to adult services and to offer a wider range of choices. However, there have been few longitudinal studies to monitor the services provided to young adults post‐school. This case study in the Republic of Ireland identified the services provided 5 and 10 years after pupils had left school. Method Using records from the National Intellectual Disability Database (NIDD), a cohort of 3,206 young people aged 14 to 21 years in 2004 were followed up in 2009 and again in 2014. The pathways to different types of services were identified. Results Upwards of 50% of school leavers were no longer in receipt of services 10 years later. Most had mild intellectual disabilities. Of those who were still involved with services, after 5 years most attended either training centres or care centres with small proportions in sheltered workshops or employment schemes. By 2014, most students leaving training centres had transferred to care centres; including those with mild disabilities. There had been little increase in the numbers receiving other types of day support. Conclusions Care centres remain the most common form of day services provided to school leavers in the Republic of Ireland. The economic recession may have contributed to this. Recent government policies aim to promote more innovative day supports with a focus on employment but further cohort studies should monitor the success of these initiatives.
    May 24, 2017   doi: 10.1111/bld.12190   open full text
  • Pain and pain assessment in people with intellectual disability: Issues and challenges in practice.
    Owen Doody, Maria E. Bailey.
    British Journal of Learning Disabilities. May 09, 2017
    Accessible summary Pain is difficult to identify when people cannot communicate. If pain is not identified, it cannot be managed and causes stress. Pain assessment is essential in order to identify pain. Pain assessment requires a combination of knowledge, health assessments and observations. Abstract Background Individuals with intellectual disability experience the same chronic diseases and conditions as the general population, but are more likely to have physical and psychological co‐morbidities, resulting in a higher risk of experiencing pain and having more frequent or severe pain. Method This position paper aims to highlight the importance of pain assessment for people with intellectual disability. Results As people with intellectual disability live within the community and/or remain in the family home, they are accessing a wide range of healthcare services. This necessitates that nurses across all care settings are knowledgeable regarding appropriate/alternative pain assessment methods for people with intellectual disability. While many pain assessment tools are available for use with the intellectual disability population, they are often not well established or infrequently used to establish their validity. Conclusion Although self‐report is the gold standard in pain assessment, pain assessment for people with intellectual disability is often challenging as they may be unable to self‐report their pain due to their levels of communication or cognitive ability. Assessment requires a combination of approaches amalgamating: pain assessment, health assessment and observation of behaviours.
    May 09, 2017   doi: 10.1111/bld.12189   open full text
  • A feasibility study into the measurement of physical activity levels of adults with intellectual disabilities using accelerometers and the International Physical Activity Questionnaire.
    Yetunde M. Dairo, Johnny Collett, Helen Dawes.
    British Journal of Learning Disabilities. April 28, 2017
    Accessible summary Most physical activity (PA) studies exclude individuals with severe and profound intellectual disabilities, and the reasons for these exclusions are unclear. Therefore, this study explored the practicalities of recruiting and measuring adults with intellectual disabilities, including those with severe and profound intellectual disabilities. Each individual and their carer or family filled in a questionnaire where they were asked about their PA over the previous 7 days; thereafter, they were given an accelerometer for 7 days to measure their physical activities. Four things were found to be important for this type of study: (i) where participants lived; (ii) what was used in measuring their PA; (iii) their reported PA was similar to what their family/carer reported; and (iv) it was also similar to what was measured. The study showed that it is possible to measure PA irrespective of the intellectual disability severity and that adults with intellectual disabilities can tell you about their PA and so can their relatives/carers without the need for expensive equipment. Abstract Background Few studies have measured physical activity (PA) levels of adults with intellectual disabilities using both objective and subjective methods, but none included individuals with profound intellectual disabilities. To inform effective measurement of PA across the disability spectrum, this study explored: the feasibility of measuring PA levels using the International Physical Activity Questionnaire‐short version (IPAQ‐s) and a wrist‐worn 7‐day accelerometer; examined the level of agreement between instruments/raters; and established the recruitment rate. From the literature reviewed, no study has investigated these issues. Materials and Methods Two‐hundred adults with intellectual disabilities from a local authority lists in UK were invited to participate. Participants were administered an accelerometer for seven days and the IPAQ‐s (self and carer‐reported). Results Twenty participants with mild to profound intellectual disabilities (20–70 years) were recruited. The response rate was significantly different between home (16%) and residential homes (4%): χ2(1) = 7.7, p < .05. All participants completed the IPAQ‐s but only 15 completed 7‐day accelerometer. Self and carer‐reported PA had perfect agreement on IPAQ‐s, and agreements between instruments using PA guidelines was substantial (k = 0.6, p < .05). However, mean moderate‐vigorous PA min/week differed between measures at 145 and 207 from IPAQ‐s and accelerometer respectively. Conclusions Recruitment demonstrated a need for better engagement with residential homes. While both the IPAQ‐s and accelerometers can be used to evaluate PA levels, the IPAQ‐s was more acceptable and carer report was accurate, but it underestimated absolute moderate‐vigorous PA levels. These findings indicate that IPAQ‐s can be used to measure PA levels, including in those with profound intellectual disabilities.
    April 28, 2017   doi: 10.1111/bld.12188   open full text
  • Do levels of evidence affect breadth of service? A study on the use of clinical guidance in a learning disability service.
    Eleni Pateraki, Kenneth Macmahon.
    British Journal of Learning Disabilities. February 16, 2017
    Accessible summary The government suggests to the NHS what talking psychological therapies should be given to people when they have worries or problems. This study examined a service for people with learning disabilities in Scotland. It tried to find out whether the service was doing what the government suggests. The study found that the people who were seen by the service often had more than one difficulty, and the service gave extra talking psychological therapy to them. We think that this study shows that people with learning disabilities should have more treatments available for them to meet their needs. Abstract Background For services across the UK, increasing emphasis is placed on the use of evidence‐based psychological treatments. In this context, the Scottish Government published the MATRIX, a best‐practice clinical governance document, with a brief section on therapies for people with learning disabilities. As with most clinical guidelines, randomised controlled trials were considered the “gold standard.” However, within the learning disability field, the existing evidence base is relatively limited, resulting in a narrow guidance for services. Methods This study evaluated the use of best‐practice guidance (the MATRIX), in a psychology service for adults with learning disabilities, covering one of the largest NHS Boards in Scotland. A randomly selected 50% (N = 73) of case notes opened since October 2011 (publication date for the MATRIX) was reviewed. Eight case notes were second‐rated by an independent clinician. Results Findings showed that service users typically presented with multiple psychological difficulties, and clinicians offered a range of therapies additional to those suggested in the guidance. This was particularly evident in cases managed by clinical psychologists. Conclusions Applying rigid therapeutic recommendations may limit opportunities for integrative practice. The potential impact of inflexibly adopting clinical guidelines on service planning and resources is discussed.
    February 16, 2017   doi: 10.1111/bld.12186   open full text
  • Adults with learning disabilities experiences of using community dental services: Service user and carer perspectives.
    Carolyn Lees, Helen Poole, Michelle Brennan, Fiona Irvine.
    British Journal of Learning Disabilities. January 20, 2017
    Accessible summary The government and other organisations say that improving health care is important for people with learning disabilities. We asked people with learning disabilities and the people who look after them what it was like for them when they went to the dentist. Those we asked said that when they went to the dentist, they knew that those they saw knew about looking after their teeth. Some of those we talked to though said that certain things needed to be better. Abstract Background The government alongside other health and social care organisation have identified the need to improve the care provided for people with learning disabilities. Materials and Methods This service evaluation aimed to explore the experiences of people with learning disabilities and their carers who accessed community dental services using a qualitative research design. Adults with learning disabilities (n = 4) and their carers (n = 6) took part in one to one, face to face semi structured interviews. Results and Discussion Generally, participants were satisfied with community dental services and in particular valued the skills and the competence of practitioners. However, when dissatisfaction was expressed this was generally as a result of poor communication and the transition from child to adult dental services. Conclusions A number of recommendations are identified and discussed in relation to engagement with adults with learning disabilities and their carers in the development and delivery of community dental services.
    January 20, 2017   doi: 10.1111/bld.12181   open full text
  • Experiences of women with learning disabilities undergoing dialectical behaviour therapy in a secure service.
    Michaela Thomson, Paula Johnson.
    British Journal of Learning Disabilities. January 13, 2017
    Accessible summary Dialectical behaviour therapy is a “talking” therapy developed by Marsha Linehan. It helps people who are living in the community and also living in hospitals and people who may have problems managing their emotions. In recent years, dialectical behaviour therapy has been used to help people with learning disabilities cope with feelings of anxiety, trauma‐related disorders and mood disorders, but there are not many research papers showing how it is used in forensic learning disability services. This research tells the story of seven women with learning disabilities who took part in dialectical behaviour therapy whilst living in a forensic service. Their story and experiences are important in research literature and will help other services to think about what is needed when they introduce a new type of therapy such as dialectical behaviour therapy . Abstract Background This research aimed to capture the experiences of women with learning disabilities living in secure services who undertook dialectical behaviour therapy (DBT); they were the first people to do this in the trust. It is hoped their experiences may guide and inform other services undertaking the same process. Materials and Methods Interpretative phenomenological analysis (IPA) was used to provide a flexible framework to make sense of the way the women interpreted their experiences. Results and Discussion The analysis identified three main themes: How you do DBT, What we think about DBT, Using DBT. The qualitative approach adds a valuable contribution to the wider literature, highlighting the importance of capturing the women's voices. Conclusion As most published literature regarding the effectiveness of DBT is not written from first hand service user experiences, it is hoped this research offers a unique insight into these women's experience.
    January 13, 2017   doi: 10.1111/bld.12180   open full text
  • “I received a leaflet and that is all”: Father experiences of a diagnosis of autism.
    Carol A. Potter.
    British Journal of Learning Disabilities. December 28, 2016
    Accessible summary Little is known about what fathers think and feel about a diagnosis of autism. Fathers experienced strong emotion around diagnosis and were given little support. Services should support mother and fathers in ways which meet their individual needs. More positive messages should be given to families at diagnosis. Abstract Background: A diagnosis of childhood autism can be an extremely stressful experience for parents, but little is known concerning paternal perceptions of the process. Methods: This study investigated father perspectives on a diagnosis of autism, through an online survey. Results: An analysis of 184 replies to an open‐ended question identified the following themes: strong initial emotional response and a range of immediate anxieties about the future, struggle to gain a diagnosis; anger in response to insensitive delivery of diagnosis together with insufficient information at the time and lack of support afterwards. Conclusion: Fathers experienced a range of significant challenges during a diagnostic process in which most felt unsupported. Service provision should be more gender‐differentiated, taking into account of the particular needs and perspectives of both mothers and fathers at this critical juncture in family life.
    December 28, 2016   doi: 10.1111/bld.12179   open full text
  • The importance of romantic love to people with learning disabilities.
    Claire Bates, Louise Terry, Keith Popple.
    British Journal of Learning Disabilities. December 02, 2016
    Accessible summary Much research has taken place to understand love and what it means. People with learning disabilities can have difficulties finding love for many reasons. People with learning disabilities were interviewed, and they said that having a partner who loved them and who provided company and support was very important to them. People enjoyed a physical relationship; this could be kissing, cuddling or having sex. People who had been abused in some way said it felt good to have a partner who loves and supports them. Good support from staff was important to help people to find love. A drawing was made to explain to staff how they can support people with relationships. Abstract Background: Love is important aspect of life, including to people with learning disabilities both historically and more recently. Participants value the companionship, support and social status associated with a partner. Relationships are considered mechanisms to meet certain needs including feeling loved, company, intimacy and enabling individuals to marry and have children. This article examines the importance of romantic love to people with learning disabilities. Methods: A hermeneutic phenomenological study, guided by the theory of Van Manen was conducted using interviews with eleven people with learning disabilities examining the importance of romantic love. Results: The analysis revealed that love was important to them, specifically the companionship and support a loving partner provided. The physical expression of love by a partner was valued highly, especially kissing and cuddling. Most participants had experienced some form of abuse, but it appeared that the love of a partner was reparative and they were able to form satisfying relationships. Conclusion: Participants’ narratives highlighted the role staff play in supporting them to fulfill their romantic needs. The romantic relationship needs of people with learning disabilities were examined in relation to Maslow's hierarchy of needs. The hierarchy was revised to reflect the value of having a loving relationship to people with learning disabilities and to identify the support they required to facilitate and maintain this.
    December 02, 2016   doi: 10.1111/bld.12177   open full text
  • ‘Putting music on’: everyday leisure activities, choice‐making and person‐centred planning in a supported living scheme.
    Nedim Hassan.
    British Journal of Learning Disabilities. November 18, 2016
    Accessible summary Essential Lifestyle Plans are a good way for people with learning disabilities and their support workers to tell people about things they like to do, such as listening to music. These plans also tell people about the things that they need, like what medicine they may need to take. Sometimes it is not easy to put the things we like to do at home into these plans because there are lots of things we do every day. People need to think carefully about how the things we choose to do at home can be put into Essential Lifestyle Plans that are written for us and with us. Abstract Background: Person‐centred planning, which commonly becomes formalised within services for people with learning disabilities through an Essential Lifestyle Plan (ELP), was intended to help place the choices of individuals at the forefront of service provision. However, beyond UK government policy rhetoric, scholars have raised issues regarding the capacity of person‐centred planning to empower people with learning disabilities to make choices about various aspects of their lives. This article assesses these debates, paying attention to the relationship between ELPs and choices made in relation to leisure activities. Materials and Methods:To examine leisure activities and choice‐making in depth, the article draws upon ethnographic research conducted with four adults living in a supported living scheme. It focuses upon their domestic musical activities, connecting data derived from participant observation with the contents of ELPs. Results:This study found that person‐centred planning underplayed processes involved with articulations of musical choice and also the peculiarities of the settings in which choices were made. It also found that leisure preferences expressed in ELPs did not effectively convey the richness and sociocultural significance of everyday domestic musical activities within the supported living scheme. Conclusions:Person‐centred planning should not be divorced from social context, relationships and differing degrees of dependency. Domestic leisure activities such as listening to music, while not necessarily ‘meaningful’ in the terms laid out in UK policy discourse, can become crucial resources for social bonding for people with learning disabilities. Thus, they should be considered carefully as part of a dynamic, socially situated and person‐centred planning process.
    November 18, 2016   doi: 10.1111/bld.12178   open full text
  • An evaluation of the effectiveness of a ‘Five Ways to Well‐being’ group run with people with learning disabilities.
    Gerwyn Mahoney‐Davies, Clare Dixon, Hannah Tynan, Sian Mann.
    British Journal of Learning Disabilities. November 11, 2016
    Accessible summary The Five Ways to Well‐being is a document produced by the government which gives advice about things people can do to improve how they feel. These five things are being with people, being active, noticing things around you, to keep learning and giving to others. We taught a group of adults with learning disabilities how to do these five things. We had ten sessions which lasted 2 h each. We did not find that people felt better after the ten sessions, but we did find that they noticed more things around them which may help improve their well‐being. People found the group useful. Abstract Background: The ‘Five Ways to Well‐being’ document presents five ways in which people in the general population may be able to improve their well‐being. This study evaluates the use of a ‘Five Ways to Well‐being’ group in a population of people with learning disabilities. Materials and Methods: Twelve participants who attend a day support service engaged in a ten‐week group programme based on the Five Ways to Well‐being. Scores on the Rosenberg Self‐Esteem Scale and Short Warwick‐Edinburgh Mental Well‐being Scale provided a baseline, and scores at the first, middle and final session were entered into repeated measures analysis of variance or nonparametric equivalents. Results: Scores suggest there was no difference between baseline and final session on either of these scales (P > 0.05). There was a significant difference between baseline and final session on a clinician‐devised measure of well‐being of the aims of the group (F(2,18) = 3.6, P = 0.049), and this effect is likely to be carried by an increase in the group's use of mindfulness skills. Qualitative feedback suggests that the group was useful and prompted changes in participants' well‐being. Conclusions: Participants found the group useful, and scores suggest an increase in mindfulness practice, but there is no evidence that running a Five Ways to Well‐being group with people with learning disabilities will improve their well‐being. However, this was not a clinical group of people with mental health concerns, and conclusions cannot be made about the usefulness of the model in this population.
    November 11, 2016   doi: 10.1111/bld.12176   open full text
  • Barriers to increasing the physical activity of people with intellectual disabilities.
    Luke Cartwright, Marie Reid, Richard Hammersley, Robert M. Walley.
    British Journal of Learning Disabilities. September 30, 2016
    Accessible summary We talked to people with intellectual disabilities and their carers about being healthy. Sometimes it was difficult for people with intellectual disabilities to take part in activities that would help keep them healthy. Being active is not just about doing special sports and activities. It can be part of everyday life. People with intellectual disabilities could become more active and be healthier with help from their carers. Abstract Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and Methods: Qualitative data were collected via interviews and a focus group with people with intellectual disabilities and their paid and family carers, recruited via state‐funded community‐based day centres in Scotland. Results: Three barriers hindered service users with intellectual disabilities from regular involvement in physical activity: (i) acceptance of an inactive lifestyle by carers; (ii) restrictions on activity due to paid carer preferences and resource limitations; (iii) communication issues between family carers and paid carers. Barriers were based on assumptions made by paid and family carers, so there is potential to increase activity by changing attitudes, improving communication and reconceptualising activity as integral to everyday living, rather than as additional exercise requiring special resources. Conclusions: Carers should be supported to promote physical activity in a variety of ways to enhance the motivation of service users, to encourage them to engage with physical activity as an integral part of a healthy lifestyle and to transfer this to their lives beyond day care.
    September 30, 2016   doi: 10.1111/bld.12175   open full text
  • The nature and rate of behaviour that challenges in individuals with intellectual disabilities who have hearing impairments/deafness (a longitudinal prospective cohort survey).
    Willem Meindert Buskermolen, Joop Hoekman, Albert Pierre Aldenkamp.
    British Journal of Learning Disabilities. September 14, 2016
    Accessible summary Behaviour that challenges among people with both an intellectual disability and hearing impairment or deafness is common. The aim of our study was to identify factors influencing behaviour (that challenges). We used the Individual Behaviour and Observation Rating Scale to observe and rate behaviour during a period of one year. In this article, we focus on possible relationships between internal factors and behaviour that challenges. We found that social independence, delay of communication and comorbidity of an autism spectrum disorder are possible important risk factors in developing behaviour that challenges. This is important because in clinical practice, we should focus on daily care. Training should be aimed at stimulating social independence and communication skills. Individual training programmes aimed at these skills are therefore essential. Abstract Background: In this article, we describe our study of the prevalence of behaviour that challenges and which internal factors are related to behaviour that challenges in 21 people (fourteen are male, seven are female, varying in age from 12.4 to 42 years; mean 26.6, SD 7.27) with intellectual disabilities who have hearing impairments. Materials and Methods: Data were obtained by recording behaviour on a daily basis during one year using the ‘Individual Behaviour Observation and Rating Scale’ that was developed especially for this study. Results: It was found that 100% of the participants in this study showed behaviour that challenges, although this was not observed every day in each participant. Prevalence rates during a year varied from 1.8% to 77.3%. On average, the prevalence rate was 28.9%. We found a significantly negative correlation between behaviour that challenges and delay of communication as well as the level of social independence. We also found that in people with autism spectrum disorder, the prevalence of behaviour that challenges was significantly higher than in people without autism spectrum disorder. The level of intellectual disability as well as the level of hearing impairments was not related to the prevalence of behaviour that challenges. Conclusion: Because there are several patterns of increasing and decreasing behaviour that challenges throughout the day, it is not possible to draw one conclusion on this issue for the whole group. However, where certain individual patterns can be recognised, it is possible to make individual plans for the clients. This could mean an improvement in daily care and as a result an improvement in the quality of life for people with intellectual disability who have hearing impairments. Implications for clinical practice are discussed.
    September 14, 2016   doi: 10.1111/bld.12173   open full text
  • Health and social care practitioners’ experiences of assessing mental capacity in a community learning disability team.
    Daniel Ratcliff, Melanie Chapman.
    British Journal of Learning Disabilities. September 14, 2016
    Accessible summary The Mental Capacity Act says when and how to assess someone's ability to make a decision and how best to support them to do this. Eight workers in community learning disability teams were interviewed about their experiences of assessing people's ability to make decisions. The workers said that there were a number of areas that they felt were important and which helped them to do good assessments. They also said there were some things that they found difficult. We suggest some changes that could be made to help workers when assessing people's ability to make decisions. It is important to help people make decisions for themselves where they can and to help them when they cannot. Abstract Background: The study explored experiences of health and social care practitioners within a community learning disability team in undertaking mental capacity assessments with people with learning disabilities. Materials and Methods: Eight practitioners were interviewed using a semi‐structured interview schedule. Results: The information gained was analysed using thematic network analysis. Twelve basic themes emerged which fit into five organising themes labelled: ‘systemic barriers to assessment’; ‘capacity assessing as a process’; ‘person‐specific challenges’; ‘protective practices’; and ‘protection of a fundamental human right’. A global theme, ‘freedom of action versus restrictions on action’, was identified. Conclusions: The themes highlighted that there were a range of organisational, systemic and person‐specific factors that impacted on the perceived quality of and assessors’ confidence in their assessments of mental capacity. Furthermore, these factors appeared to create a range of tensions for assessors increasing the likelihood of cognitive dissonance. Practice implications surround maintaining knowledge, ensuring adequate skills in the practical application of knowledge and reducing organisational barriers.
    September 14, 2016   doi: 10.1111/bld.12172   open full text
  • Using photovoice to include people with profound and multiple learning disabilities in inclusive research.
    Victoria Cluley.
    British Journal of Learning Disabilities. August 06, 2016
    Accessible summary Many researches now include people with learning disabilities, which is really positive, but people with profound and multiple learning disabilities are often left out. It is important to include people with profound and multiple learning disabilities in research to make sure all voices are represented. This article talks about how a research method called photovoice can be used to include people with profound and multiple learning disabilities. Abstract Background: It is now expected that projects addressing the lives of people with learning disabilities include people with learning disabilities in the research process. In the past, such research often excluded people with learning disabilities, favouring the opinions of family members, carers and professionals. The inclusion of the voices of people with learning disabilities is a welcome and much needed change. While there has been many valuable inclusive researches carried out in the past 10–15 years, much of this research has included people with mild and/or moderate learning disabilities. Far less published research has included people with profound and multiple learning disabilities. Materials and Methods: This research article outlines how the visual method ‘photovoice’ can be successfully used to include people with profound and multiple learning disabilities in the research process. Results and discussion: It is argued that inclusive research is often limited by the choice of research methods, which result in the exclusion of people with profound and multiple learning disabilities from the research process. The article advocates a mediated and flexible approach to inclusive research that embraces and supports the needs of all involved. A practical example of photovoice research with people with learning disabilities demonstrates how this can be achieved. Conclusion: When planning inclusive research, researchers should be mindful of both the variety of needs that people with learning disabilities can bring to the research process and the need to tailor methods to these needs. Such action requires a flexible approach to the inclusive research process.
    August 06, 2016   doi: 10.1111/bld.12174   open full text
  • The effect of diagnostic label on care staff's perceptions of cause of challenging behaviour in individuals with learning disabilities.
    Clive Gifford, Fiona Knott.
    British Journal of Learning Disabilities. July 21, 2016
    Accessible Summary We wanted to know what care staff felt about difficult behaviour displayed by people with autism, learning disabilities or Down syndrome. We asked many care staff who worked with people with disabilities to watch a video. The video was about a made up lady called Sophie. Sometimes Sophie was described as having autism, other times as having learning disabilities and sometimes as having Down syndrome. After staff members watched the video, we asked them how they felt about Sophie's difficult behaviour. Staff viewed Sophie's behaviour better when she was described as having autism and worst when she was described as having learning disabilities. We believe that staff should view all people equally regardless of the way they are described. We have used the information about this study to make recommendations about staff training. Abstract Background: This study investigated whether care staff's causal attributions and emotional reactions to the challenging behaviour displayed by service users were influenced by the service user's diagnostic label. Materials and Method: One hundred and twenty care staff were randomly allocated to one of three conditions. Participants viewed a video of a senior staff member describing a service user, varying only in diagnostic label (autism, learning disability or Down syndrome). Participants then rated their endorsement of possible causes and emotional reactions to challenging behaviour. Results: Participants in the Autism and Down syndrome groups made more use of biomedical causes and less use of learned behaviour as an explanation for challenging behaviour than those in the Learning Disabilities group. Those in the former groups reported more positive and fewer negative emotions than those in the Learning Disabilities group. Conclusions: The way staff viewed people with learning disabilities was affected by their diagnostic label. Implications for further research and training have been discussed.
    July 21, 2016   doi: 10.1111/bld.12171   open full text
  • Perceptions of the risks and benefits of Internet access and use by people with intellectual disabilities.
    Darren D. Chadwick, Sally Quinn, Chris Fullwood.
    British Journal of Learning Disabilities. July 15, 2016
    Accessible summary Both good and bad things can happen when people use the Internet, and people with learning disabilities are not using the Internet as much as other people. Worry about the bad things that can happen online might be one reason people with learning disabilities are not supported to access the Internet as much as other people. We wanted to find out what people without learning disabilities believe about these good and bad things for people with learning disabilities. We wanted to find this out because the way people without disabilities think about the good and bad things online might affect how people with learning disabilities are treated. We found out that people without learning disabilities think that both the good and bad things are more likely to happen to people with learning disabilities when they use the Internet. Abstract Background: Information and communication technologies, with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to the same degree as people without intellectual disabilities. Issues of safety, risk and protection online for people with intellectual disabilities have yet to be adequately investigated, and these currently serve as reasons given for hindering people from gaining online access. Materials and Method: This survey aimed to gauge the views people without intellectual disabilities have of risks and benefits of using the Internet for themselves and for people with intellectual disabilities and to compare self‐ratings of risk and benefits to ratings for people with intellectual disabilities. Results: The survey findings indicate that, with only a small number of exceptions, both the risks and benefits of being online were believed to be greater for people with intellectual disabilities compared with those without intellectual disabilities. Greater use of the Internet was associated with increased perception of benefits to being online for both people with intellectual disabilities and for participants. Conclusions: Perceptions of increased benefits suggest more needs to be performed to improve online access whilst a perception of increased risk may help to explain the reduced inclusion of people with intellectual disabilities in the online world.
    July 15, 2016   doi: 10.1111/bld.12170   open full text
  • ‘It's different, but it's the same’: perspectives of young adults with siblings with intellectual disabilities in residential care.
    Paula Jacobs, Ken MacMahon.
    British Journal of Learning Disabilities. July 12, 2016
    Accessible summary Siblings often play important roles in the lives of people with intellectual disabilities. This study suggests that young adults who have siblings in residential care can feel isolated in their experience. Adolescence appears to be a turning point and a time when siblings become aware of future caretaking responsibilities. There is a need for support for siblings of children and adults with intellectual disabilities who live in residential care. Abstract Background: Siblings often play significant roles in the lives of people with intellectual disabilities. This study aimed to give voice to young adults whose siblings have an intellectual disability and are in residential care. Materials and Methods: Six participants were interviewed, with interpretative phenomenological analysis methodology employed. Results: Emergent themes included family and sibling relationships and concerns for the future. However, ambivalence, in terms of conflicting feelings within participants themselves, was striking. Dissonances within narratives included identifying as ‘one family’ whilst living apart, experiencing guilt while being supportive of the residential placement, and emphasising the normality of the sibling experience whilst also feeling different and isolated. Conclusion: These findings reflect the particular complexity of sibling relationships when the person with an intellectual disability lives in residential care. There is a need to understand more about the perspectives of siblings, and the influence that residential care may have upon these.
    July 12, 2016   doi: 10.1111/bld.12169   open full text
  • What is standard care for people with learning disabilities and behaviour that challenges and what does it cost?
    Valentina Iemmi, Martin Knapp, Nick Gore, Vivien Cooper, Freddy Jackson Brown, Caroline Reid, Maria Saville,.
    British Journal of Learning Disabilities. June 17, 2016
    Accessible summary The provision of care and support for people with learning disabilities and behaviour that challenges in England is mixed. Children and young people with learning disabilities and behaviour that challenges are likely to live within the community, while adults will be in residential care. Overall, supporting people with learning disabilities and behaviour that challenges within the community is likely to be less expensive than supporting them in residential care. Abstract Background: We describe current care arrangements in England for children, young people and adults with learning disabilities and behaviour that challenges, and estimate their comparative costs. Materials and Methods: A two‐round Delphi exercise was performed in March and April 2014, followed by a costing exercise. Results: The study finds a mixed picture: participants reported that 60–87% of children, 66–88% of young people and 34–47% of adults were likely to be living within the community. Annual cost of care would range between £39 612 and £74 876 for children, between £35 235 and £52 832 for young people and between £81 478 and £94 799 for adults. Conclusion: While residential‐based care may continue to be necessary for respite or for individuals with particular needs, community‐based care may be an economically attractive alternative, supporting the inclusion of people with learning disabilities and behaviour that challenges within their communities, potentially at a lower cost.
    June 17, 2016   doi: 10.1111/bld.12168   open full text
  • Adapting and evaluating a tree of life group for women with learning disabilities.
    Cathy Randle‐Phillips, Sarah Farquhar, Sally Thomas.
    British Journal of Learning Disabilities. May 05, 2016
    Accessible summary The tree of life group is based on ideas from narrative therapy. Narrative therapy is about using stories about ourselves to understand how we make sense of our lives. We ran a tree of life group for women with learning disabilities. In the group, people drew trees to show different things that were important in their lives. People liked hearing about each others' lives and hearing what other people liked about their trees. Abstract Background: This study describes how a specific narrative therapy approach called ‘the tree of life’ was adapted to run a group for women with learning disabilities. The group consisted of four participants and ran for five consecutive weeks. Materials and Methods: Participants each constructed a tree to represent their lives and presented their tree to the group who responded with positive feedback and affirming statements. This led to discussion about overcoming the storms of life and a celebration of the journey the group had been through together. Key Results: Although no change was found on quantitative measures of well‐being and self‐esteem, participants reported benefitting from the peer support and social connectedness that the group offered, particularly in relation to themes of loss and change in their lives. Conclusions: ‘The tree of life’ approach has potential value as an intervention for people with learning disabilities. The benefits and challenges of this approach within the context of working with people with learning disabilities are discussed.
    May 05, 2016   doi: 10.1111/bld.12166   open full text
  • Co‐production and pilot of a structured interview using Talking Mats® to survey the television viewing habits and preferences of adults and young people with learning disabilities.
    Karen Bunning, Ruth Alder, Lydia Proudman, Harriet Wyborn.
    British Journal of Learning Disabilities. May 04, 2016
    Accessible Summary We wanted to find out what people with learning disabilities think about watching television. Some people find it difficult to say what they are thinking. We worked with ten adults with learning disabilities who helped us find the right words, questions and pictures to use in our Talking Mats® about watching television. We tried out the questions on five people to see if our Talking Mats® helped them to say what they thought about television. We made some changes so that the Talking Mats® were ready to use with lots of people. Summary Background: Capturing the views of people with learning disabilities is not straightforward. Talking Mats® has been used successfully to solicit the views of such individuals. The aim was to co‐produce an interview schedule using Talking Mats® on the subject of television‐viewing habits and preferences of adults and young people with learning disabilities. A secondary aim was to assess the feasibility of the tool prior to a larger scale survey. Materials and Methods: A co‐production process was adopted for the development of the Talking Mats ® interview. Ten adults with learning disabilities were recruited as collaborators. Six people participated in an advisory group that met on six occasions. Four supplementary members reviewed the group's work separately. The collaborators generated vocabulary for the tool, selected the most meaningful graphic symbols and reviewed the categories of television programmes. A script to accompany the Talking Mats® procedure was developed and checked for linguistic complexity. The resulting tool was piloted with five participants. The procedure was video recorded and evaluated for procedural effectiveness. Findings: Review of the video recordings from the pilot study revealed that no participant scored below the minimum effectiveness rating of 12. Areas of difficulty that were noted included: time duration of interview, tangibility of symbols and currency of vocabulary. These triggered a number of recommendations for address in the larger scale survey. Conclusions: Working with people with learning disabilities as collaborators helped to develop a tool fit for purpose.
    May 04, 2016   doi: 10.1111/bld.12167   open full text
  • A qualitative investigation into the experiences of having a parent with a learning disability.
    Olivia Hewitt, Angela Clarke.
    British Journal of Learning Disabilities. March 16, 2016
    Accessible Summary More people with a learning disability are becoming parents. We wanted to find out what it was like to have a parent with a learning disability. People told us about the good things about their parents. They also told us some difficult things about their childhood. We have ideas about how services can help families when a parent has a learning disability. Abstract Background: More people with a learning disability are becoming parents. Little is known about the lived experiences of the children who have a parent with a learning disability. Methods: This study uses interpretative phenomenological analysis (IPA) to understand the lived experiences of people who have a parent with a learning disability. Five people who have a parent with a learning disability were asked about their experiences of being parented and their childhood more generally. Results: Four themes emerged from the interviews: 1) ‘Fitting in’ within the wider family system, 2) The parental relationship and the impact of disability, 3) A difficult childhood and 4) Resilience. Conclusions: These findings are compared with the existing literature, and similarities and emerging findings are noted. Implications for services when supporting families with a parent who has a learning disability are discussed. Additional ideas about areas that require additional research are identified.
    March 16, 2016   doi: 10.1111/bld.12163   open full text
  • Investigating peer attitudes towards the use of key word signing by children with Down syndrome in mainstream schools.
    Caoimhe Bowles, Pauline Frizelle.
    British Journal of Learning Disabilities. March 15, 2016
    Accessible Summary This research looked at young children's attitudes towards the use of a signing system by children with Down syndrome, in mainstream school. These attitudes can help to reveal factors which support the successful use of signing as well as those that make it difficult to use signs effectively in a mainstream setting. The results show that although children expressed a number of difficulties in relation to signing, overall they have a positive attitude towards signing on which we should capitalise, to enhance the communicative experiences of both the children with Down syndrome and their peers in mainstream school. Abstract Background: Lámh is a key word signing approach used in Ireland, which can support the communication needs of children with Down syndrome. However, the success of this approach in mainstream schools relies heavily on the attitudes of those within the school environment. To date, two studies have explored the attitudes of teaching staff towards the use of keyword signing in schools; however, no previous research has investigated peer attitudes towards this method of communication. This study aimed to explore the attitudes of peers towards the use of Lámh by children with Down syndrome in mainstream schools. Materials and Methods: The study was qualitative, using interpretative phenomenological analysis procedures to analyse eight interviews with children, ranging in age from 6 to 8 years. Results and Conclusion: Overall, mainstream school peers demonstrated an understanding and an appreciation of the use of key word signing. However, the success of this approach within the school was limited by a number of challenges evinced by the school peers, including making the signs accurately and remembering their meanings. Given the important interactive role of the peers of a child with Down syndrome in a mainstream school setting, these challenges need to be addressed to optimise the use of key word signing and increase the likelihood of successful communication between children with Down syndrome and their peers.
    March 15, 2016   doi: 10.1111/bld.12162   open full text
  • ‘Planning Live’: using a person‐centred intervention to reduce admissions to and length of stay in learning disability inpatient facilities.
    Janet Bartle, Tom Crossland, Olivia Hewitt.
    British Journal of Learning Disabilities. March 04, 2016
    Accessible Summary Some people with a learning disability need to go to hospital to get help with their mental health or if they have challenging behaviour. We wanted to see if we could help people get the right support at home so they did not have to go to hospital We had a special meeting to help this happen called a ‘Planning Live’ meeting These meetings helped some people stay at home and get support without having to go to hospital. For the people who had to come into hospital, they had a shorter stay and could go home more quickly. Abstract Background: Recent government policy has focused on reducing the number of people with a learning disability receiving treatment for challenging behaviour or mental health difficulties in hospitals (including in assessment and treatment units; ATU). People with a learning disability should be supported to remain in their community when receiving support for challenging behaviour or mental health difficulties whenever possible. Methods: This study considered a novel intervention based on person‐centred planning practice, which aimed to coordinate a person's support, identify outstanding needs and increase communication. This intervention intended to reduce rates of inpatient admission, and support the person to remain in their community, whilst ensuring their needs are met. This intervention was assessed by considering the number of people admitted to the inpatient services before and after the intervention, the length of inpatient admissions before and after the intervention, and by analysing qualitative feedback from participants in the intervention. Results: ‘Planning Live’ meetings were held for 102 people. Forty‐five meetings were held retrospectively following an emergency admission. Following the ‘Planning Live’ meeting, five people had a planned admission and 52 people did not have an inpatient admission. The median length of inpatient stay fell from 143.5 days before the introduction of ‘Planning Live’ to 66 days (a statistically significant reduction). Qualitative feedback shows that the process was largely seen as helpful by professionals, families and individuals taking part in the meetings. Conclusions: The results suggest this person‐centred intervention contributed towards a reduction in the amount of time individuals stayed in hospital. However, the total number of hospital admissions rose following the intervention.
    March 04, 2016   doi: 10.1111/bld.12161   open full text
  • What influences women with intellectual disabilities to attend breast screening? Experiences of women who have and have not participated.
    Diane S. Willis.
    British Journal of Learning Disabilities. January 04, 2016
    Accessible summary This study looks at the experience of women with learning disabilities who go for breast screening (X‐ray of the breast) Women with learning disabilities reported that there were many things that encouraged and discouraged them from going for breast screening. Carers were very important in supporting women with learning disabilities through breast screening Abstract Background: Despite breast screening in Britain being free to all women within the allotted age range, uptake of this service is often poor in women with intellectual disabilities. Reasons put forward are numerous, including poor knowledge, pain and difficulty travelling to the centre. However, what influences the decision to attend is rarely discussed. Methods: Twelve semi‐structured interviews and three focused observation were undertaken with women with intellectual disabilities to explore what influenced them to participate in breast screening and their experience of having mammography. Data were analysed thematically using a blended framework. Results: Despite the experience of mammography being negative, high uptake of breast screening services was reported in this study. Pain and previous poor treatment in hospital were reasons for nonparticipation in breast screening. Although awareness about breast screening varied, those who had previous breast problems were more knowledgeable; however, there was poor awareness of the risks of hereditary breast cancer. Overall, paid‐carers were found to play a key role, as means of support, information and a potential influence in determining participation in breast screening. Conclusions: There was general equality of access but an inequality in the preparation and delivery of the service which was dependent on a complex range of issues and relationships. Key to participation was preparation with the paid‐carer facilitating discussions about breast screening were key to participating in mammography. This has implications on the future direction of funding and policy making. Risks associated with hereditary breast cancer and earlier presentation of breast tumours also needs highlighting.
    January 04, 2016   doi: 10.1111/bld.12158   open full text
  • The utility of the Montreal Cognitive Assessment as a mental capacity assessment tool for patients with a learning disability.
    Daniel Edge, Adenekan Oyefeso, Carys Evans, Amber Evans.
    British Journal of Learning Disabilities. December 18, 2015
    Accessible summary Accurate assessment of a patient's mental capacity is important, yet out of the clinical assessments currently available, there does not appear to be sufficient accessible tools suitable for people with a learning disability. Incorrect assumptions are often made regarding the capacity of patients who have learning disabilities to make decisions about important aspects of their life. This preliminary study investigated whether or not it was possible to adapt a well‐known assessment of cognitive impairment (The Montreal Cognitive Assessment) and use this as a tool to determine capacity in patients with a learning disability. Abstract Objective: To determine the psychometric properties of the Montreal Cognitive Assessment (MoCA) in patients with a learning disability and examine it's utility for conducting mental capacity assessment. Method: This study was a cross‐sectional, instrument validation study in an inpatient hospital setting, located in the East of England. The sample consisted of two groups: (i) 31 consecutively admitted hospital patients and (ii) 10 multidisciplinary team members who served as a comparison group. The MoCA, a 12‐item screen for mild cognitive impairment and the Dysexecutive Questionnaire (DEX), were used in this study. Item analysis was conducted by comparing item endorsement for all participants that had a learning disability utilising Difficulty and Discrimination Indices for each item on the MoCA. We examined the internal consistency of a revised scale derived from item analysis and used a one‐way ANOVA to determine concurrent validity by comparing scores between two patient subgroups and the comparison group. Results: A 7‐item scale, ‘MoCA‐LD’ (alpha coefficient = 0.82) emerged from item analysis. A statistically significant negative correlation was observed between MoCA‐LD and DEX (Pearson correlation = −0.66, P < 0.01). As expected, participants in the borderline category scored higher on MoCA‐LD than those with mild learning disability, as did those with no learning disability (P < 0.001). Conclusion: The MoCA‐LD has the potential to be a useful tool for mental capacity assessment in patients with a learning disability.
    December 18, 2015   doi: 10.1111/bld.12157   open full text
  • What should dental services for people with disabilities in Ireland be like? Agreed priorities from a focus group of people with learning disabilities.
    Caoimhin Mac Giolla Phadraig, Alison Dougall, Siobhan Stapleton, Danielle McGeown, June Nunn, Suzanne Guerin.
    British Journal of Learning Disabilities. November 21, 2015
    Accessible summary This study asked a group of people with learning disabilities in Ireland what was important to them about their dental services. The group easily ordered their priorities according to five topics: Access, Cost, Information, Quality of Care and Treatment. The group's discussion revealed a disempowered group who had little control over how they interacted with dental services. We suggest ways to empower people with learning disabilities in their interactions with dental services. Abstract Background: In Ireland, people with learning disabilities have poor oral health. This is in part due to inappropriate oral health services. Recognising the value of inclusive approaches to research and healthcare planning, this study sought to include a group of people with learning disabilities in priority setting for oral health services in Ireland. This study discusses the feasibility of the methods used to promote inclusive approaches in oral healthcare planning. Materials and Methods: A single focus group of six participants with communication and cognitive impairments agreed priorities for dental services using evidence‐based research tools across five topics: Access, Cost, Information, Quality of Care and Treatment. Sorting was recorded photographically and discussion was video‐recorded, transcribed and analysed using deductive content analysis. Results: The group ranked priorities within each topic but found it difficult to meaningfully rank between topics. Across topics, issues of control, empowerment and choice were observed. Conclusions: Participants were largely disempowered in their interactions with dental services. The method used in this study to empower potential service users with disabilities was successful and can be used by others who have an interest in inclusive healthcare priority setting.
    November 21, 2015   doi: 10.1111/bld.12152   open full text
  • Creative ways of talking: a narrative literature review concerning emotional support for adults with mild or moderate learning difficulties.
    Dee MacDonald.
    British Journal of Learning Disabilities. November 04, 2015
    Accessible summary A group of adults with mild‐to‐moderate learning difficulties said they found it hard at times to find someone to talk to who understands them. They said this was important because everybody should have someone to talk to and share their feelings with. They wanted to know what had been written about this, and what research had been done. A literature review was undertaken and found that the emotional lives of adults with learning difficulties have not been researched very much. Often supporters do not realise that people with learning difficulties would like more opportunities to talk and share their feelings. Adults with learning difficulties are good at supporting each other and more could be done to help this to happen. Abstract Background: Adults with mild or moderate learning difficulties identified a need for more opportunities to access appropriate emotional support. Materials and Methods: A narrative literature review was undertaken. Factors associated with dealing with emotional unrest, such as self‐esteem/self‐awareness, a person's attitude to having learning difficulties, emotional competency and friendship issues are discussed. Results: The review provides evidence that emotional unrest exists but receives little attention from supporters due to an emphasis on practical issues associated with an inclusion agenda. The review highlights a lack of research on emotional support for adults and explores reasons for this. Conclusion: The value that people with learning difficulties place on support from others with learning difficulties, that is peer support, emerges as a theme and an argument is presented for further inclusive research in this area.
    November 04, 2015   doi: 10.1111/bld.12143   open full text
  • Mental health services for children and adolescents with learning disabilities: a review of research on experiences of service users and providers.
    Myrthe Jacobs, Helen Downie, Gill Kidd, Lorna Fitzsimmons, Susie Gibbs, Craig Melville.
    British Journal of Learning Disabilities. August 12, 2015
    Accessible summary Many policies and initiatives have been developed to improve mental health services for children with learning disabilities. Children with learning disabilities and their parents, however, experience many barriers accessing mental health services. Service providers identified a lack of resources as a barrier to meeting the needs of children with learning disabilities. Current research offers suggestions on what can be improved, but further research is needed to identify what models of service would work best for children with learning disabilities. Abstract Background: Children and young people with learning disabilities experience high rates of mental health problems.Methods: The present study reviewed the literature on mental health services for children with learning disabilities, to identify known models of service provision and what has been experienced as effective or challenging in providing good services.Results: Children with learning disabilities and their parents experience barriers accessing mental health services that are related to a lack of information and perceptions of services as being inadequate. Service providers identified a lack of resources as a barrier to meeting needs. Although positive experiences are also observed, many parents have found services to be inappropriate or overwhelming.Conclusion: Research linking population need to available resources, and service models to services users’ outcomes would be valuable to make clear recommendations on how mental health services can address the needs of this group more effectively.
    August 12, 2015   doi: 10.1111/bld.12141   open full text
  • A pilot evaluation of using symbol‐based information in police custody.
    Sarah Parsons, Gina Sherwood.
    British Journal of Learning Disabilities. July 16, 2015
    Accessible summary Many people who commit crimes in the UK have learning difficulties or disabilities. The police give people information to read in custody, but this information can be confusing. This project presented this information in an easier‐to‐read way using symbols and simple words. We asked different people what they thought of the information and most views were very positive. Summary At least 20–30% of offenders within the criminal justice system (CJS) have learning disabilities or difficulties. This creates significant challenges in relation to meeting their information needs about rights, entitlements, processes and procedures. We report a pilot project where widgit Symbols were used to create more accessible information about rights and entitlements for people entering custody. The widgit Symbol custody sheets were used in two Hampshire Constabulary custody centres for a 4‐week period and feedback gathered from 14 custody officers and inspectors. The views of 27 other important stakeholders, including young people with autism and their families, appropriate adults, and senior personnel within the CJS, were gathered about the sheets through interviews and focus groups. The reaction to the sheets was overwhelmingly positive with many participants suggesting that symbol‐based information in custody could be rolled out nationally and also extended more widely to include other parts of the CJS.
    July 16, 2015   doi: 10.1111/bld.12140   open full text
  • An evaluation of a behavioural support team for adults with a learning disability and behaviours that challenge from a multi‐agency perspective.
    Rose Christopher, Sarah Horsley.
    British Journal of Learning Disabilities. July 16, 2015
    Accessible Summary Dudley Behaviour Support Team aims to help make areas of life better for people with behaviours that challenge. It also aims to help their carers support them better. This project looked at whether the Behaviour Support Team is meeting guidelines set out by the government to ensure services are doing their job well. Staff who work with the Behaviour Support Team were asked to take part in the study by answering questions about how well the team does. This study found that the Behaviour Support Team is meeting the government guidelines to a high standard. Summary The Dudley Behavioural Support Team (BST) was set up based on Positive Behavioural Support (PBS) principles to support individuals with behaviours that challenge. The Winterbourne Review emphasises the importance of developing high‐quality specialist community services and the Ensuring Quality Services (Local Government Association & NHS England, Ensuring quality services, London, 2014) document was released to guide the commissioning of such services. The document sets out standards and guidance for those supporting individuals with behaviour that challenges. This evaluation aimed to investigate whether the BST meets the guidance set out in Ensuring Quality Services from the perspective of other services. A questionnaire was developed to collect data from 19 staff members from services with experience of working with the BST, to address the points raised in Ensuring Quality Services. The quantitative results indicated that the BST are meeting the guidance to a high standard and qualitative data suggested this is achieved through a focus on joint working and a fluid, flexible approach. In conclusion, the BST appears to be a valuable resource from the perspective of services working with them to support individuals with behaviours that challenge.
    July 16, 2015   doi: 10.1111/bld.12137   open full text
  • ‘I didn't know other people existed who hear voices…’ – qualitative perceptions of a hearing voices group for people with learning disabilities.
    Rose Tomlins, James Cawley.
    British Journal of Learning Disabilities. July 07, 2015
    Accessible summary We ran a new group for people with learning disabilities who heard voices. We interviewed people who came to the group to see whether they liked the group. We also interviewed people who decided not to come to the group, to find out why. We also asked family members and professionals what they thought about the group. People thought the group would help them cope with their voices. People who came enjoyed meeting other people who heard voices. We found that some things stopped people coming to the group. We want to change these things for the next group so that more people will be able to come. Summary Group work for people who experience voice hearing in the mainstream population has been shown to have various benefits; however, there is little research describing hearing voices groups for people with learning disabilities. This study describes perceptions of a new hearing voices group for people with mild learning disabilities. Semi‐structured interviews with twelve participants were conducted. This included three clients who attended the hearing voices group, three of their family members/carers and one professional. In addition, of those who were referred to the group but chose not to attend, one client, two family members/carers and two professionals were interviewed. Interview data were transcribed verbatim and thematic analysis was used to identify three overarching themes; the first ‘benefits of our hearing voices group’ described participants’ evaluations and perceptions of the hearing voices group. The second ‘making the decision to attend’ covers factors that influence clients when deciding whether or not to attend a hearing voices group. In the final theme ‘positive and negative contributors to the voice‐hearing experience’, participants reflected on factors that affect the voice‐hearing experience. The hearing voices group was valued by participants; however, services should consider the barriers to attendance faced by some clients. Strategies for addressing these are discussed.
    July 07, 2015   doi: 10.1111/bld.12138   open full text
  • A pilot memory café for people with Learning Disabilities and memory difficulties.
    Hannah Kiddle, Neil Drew, Paul Crabbe, Jonathan Wigmore.
    British Journal of Learning Disabilities. June 09, 2015
    Accessible summary Memory cafés help people without learning disabilities who have dementia. We wanted to know whether memory cafés can help people with learning disabilities and memory problems. We ran a memory café for 12 weeks for people with learning disabilities. We watched how people got on in the café and how happy they looked. We asked people what they thought of the memory café. We also asked their carers. The people who came to the memory café said it helped. They seemed happier each week. Carers said that after the memory café people talked more, were more alert and did more activities at home. Summary Memory cafés have been found to normalise experiences of dementia and provide access to an accepting social network. People with learning disabilities are at increased risk of developing dementia, but the possible benefits of attending a memory café are not known. This study evaluates a 12‐week pilot memory café for people with learning disabilities in terms of adaptations required and benefits of attending. Results indicate that affect levels significantly improved across the course of the café and that communication, interaction, alertness and participation in other activities improved outside the café. Future plans for attendance at memory cafés for people with learning disabilities are discussed.
    June 09, 2015   doi: 10.1111/bld.12135   open full text
  • Making sense of varying standards of care: the experiences of staff working in residential care environments for adults with learning disabilities.
    Andrew Hutchison, Biza Stenfert Kroese.
    British Journal of Learning Disabilities. June 08, 2015
    Accessible summary To find out why standards of care might vary in residential homes for adults with learning disabilities, this study describes the experiences of six care workers currently working in residential homes. Each care worker took part in an interview where they were asked to talk about their jobs in detail. Three things were found to be important aspects of care workers experiences: the quality of their relationships with others; their levels of motivation for their work; and their feelings about the environments they worked in. The study discusses how each of those things can lead to variations in care standards. Summary Research evidence reveals that adults with learning disabilities who live in residential care facilities are being exposed to considerable variation in the standards of care they receive. High profile cases of substandard care have also raised concerns regarding the appropriateness of existing care provisions and practices. While attempts have been made to understand variations in care standards, there remains a need for more research in this area. Additionally, little attention has been paid to understanding support staff experiences of working in residential services and to developing a more theoretical understanding of the role they fulfil. Using interpretive phenomenological analysis (IPA), this study aimed to examine front‐line staff members' experiences of working in residential care for people with learning disabilities. Six experienced front‐line care workers (four female, two male) took part in semi‐structured interviews. Data were analysed according to the principles of IPA, and three superordinate themes were identified as being central to participants' experiences of their work roles: Degree of Positive Relationship Reciprocity; Value Congruence and Intrinsic Motivation; and Experiences of Environmental and Organisational Constraints. Results are discussed in relation to the existing literature on care standards and the factors associated with abusive or neglectful practices, and in terms of their contribution to theory and applied practice.
    June 08, 2015   doi: 10.1111/bld.12136   open full text
  • A comparison of support for two groups of young adults with mild intellectual disability.
    Sarah Soenen, Ina Berckelaer‐Onnes, Evert Scholte.
    British Journal of Learning Disabilities. February 27, 2015
    Accessible summary Young adults with mild to borderline intellectual disability can be very different from each other. We talked with the young adults about their homes and jobs, and whether they were happy with the support they received. The support used did not always match their needs. The study showed the good things of the support and how the support could be better. Summary Young adults with mild to borderline intellectual disability (MBID) have varying profiles of cognitive, adaptive and behavioural functioning. There is also variability in their educational and therapeutic needs. This study compares recommended and actual provision of support for two groups of young adults with MBID and looks at young adults’ satisfaction with their support. Participants’ clinical files were analysed and a satisfaction interview was administered. Descriptive statistics were used to characterise the groups, and t‐tests or chi‐square tests were used to explore similarities and differences between the groups. A combined, supported independent living setting, a structuring and regulating support style and psychotherapy were recommended for the young adults in group 1 (MBID with externalising behavioural problems), whilst independent living with access to community support services and a meeting house, and skills training was recommended for group 2 (MBID with internalising behavioural problems). Both groups were considered capable of standard employment with support from a job coach. We found mismatches between recommended and actual provision of support. The findings suggest that service providers do not focus enough on the educational support needs, but therapeutic needs are generally more often met.
    February 27, 2015   doi: 10.1111/bld.12127   open full text
  • Sharing the focus: engaging with support workers to include people with communication needs in research.
    Deborah Lutz, Karen R. Fisher, Sally Robinson.
    British Journal of Learning Disabilities. February 17, 2015
    Accessible summary This article is about university researchers and support workers working together when people with disabilities need support with communication to take part in research. This is one way to help people with disabilities to do this. We talk about a project we did to help explain six different ways of working together to help people with disabilities have more of a say in research. We found that if the person has a trusting relationship with the worker, the worker can help them understand the research, help them to tell the researcher what they think about the research and remind them about what they know is important to them. Sometimes problems can happen and people do not get good support from their workers. It is the job of the researchers to make sure that people with disabilities still have a say in the research. Summary Inclusive research is an increasing expectation to value and include people's voice in research and evaluations intended to benefit them. The active participation of people with communication support needs can be difficult due to the practical constraints of evaluations. One technique is to engage with workers who are familiar with the person, but this introduces risks, such as substituting voice and conflict of interests. We examine the effectiveness of this technique in ethnographic interviews by applying Nind's framework of core ideas in inclusive research (disrupting hierarchy; maximising participation and competence; enhancing authenticity; empowerment; accessibility, authorship and readership; and ethical considerations) to an evaluation of Australian disability services. We found that where support workers had a trusted relationship with the person, they could help them to choose to participate, consent and communicate their views. Disrespectful relationships introduced ethical risks during and after the interviews, which needed to be anticipated and safeguarded against.
    February 17, 2015   doi: 10.1111/bld.12126   open full text
  • ‘So often they do not get recruited’: exploring service user and staff perspectives on participation in learning disability research and the barriers that inhibit it.
    Bradley Crook, Rose Tomlins, Ann Bancroft, Laura Ogi.
    British Journal of Learning Disabilities. January 16, 2015
    Accessible summary The government and NHS say it is important for people with learning disabilities to be able to take part in research if they want to. We asked five people with learning disabilities about participating in research. They said they wanted to participate in research to help make things better for other people with learning disabilities. They also said if research is not easy to understand, it can be hard for people with learning disabilities to take part. We also sent a questionnaire to clinicians working in a learning disabilities service. Thirty‐four clinicians replied. They said research with people with learning disabilities was important to help improve services. They said, sometimes it is difficult to find the time, money and support to do research. Summary The importance of making research participation accessible for people with learning disabilities is emphasised in government and NHS research strategies. This evaluation explored the realities of this goal from the perceptions of people with learning disabilities and clinicians within an NHS learning disability service. People with learning disabilities participated in a focus group (n = 5), and clinicians completed a questionnaire (n = 34), to explore each groups’ experience of research, and identify barriers that may prevent people with learning disabilities from participating. People with learning disabilities engaging in research was seen as essential to increase knowledge of learning disabilities, as well as promote development of appropriate services. Barriers to participation included ability, ethical considerations, practicalities and restriction by ‘gatekeepers’. Clinicians also felt a lack of resources and support prevented them from fulfilling their roles within research. Implications and recommendations are discussed.
    January 16, 2015   doi: 10.1111/bld.12120   open full text
  • Accessible websites – what is out there?
    Mary Waight, Warren Oldreive.
    British Journal of Learning Disabilities. January 07, 2015
    Accessible summary Many people use the Internet to find the information they want. We looked at different websites. We wanted to know how they helped people find information. We looked to see whether they had ways of helping people who cannot read. We found that the websites were all very different. We thought of ways to make websites easier for people so that everyone can find the information they want. Summary This study aims to outline a time‐related study to identify UK websites providing information for people with learning disabilities and to evaluate the websites to determine strengths and weaknesses. Following a brief review of literature, a series of criteria were drawn up to evaluate websites for people with learning disabilities. Eighty‐three identified sites were organised and allocated to categories based on function. Of these, 19 websites were deemed to have been created for people with learning disabilities to access. These were reviewed using the following criteria: how site was accessed; how navigation occurred within the site; whether literacy was required; how different compensatory strategies were incorporated including images, video and audio. The assessment criteria revealed a marked inconsistency within the websites in the areas examined. Differences in website design are discussed and suggestions of possible ways forward made to facilitate access for people with learning disabilities.
    January 07, 2015   doi: 10.1111/bld.12119   open full text
  • Learning from the experts: a thematic analysis of parent's experiences of attending a therapeutic group for parents of children with learning disabilities and challenging behaviour.
    Emily Thompson‐Janes, Samuel Brice, Rebecca McElroy, Jennie Abbott, June Ball.
    British Journal of Learning Disabilities. December 13, 2014
    Accessible summary Parent groups can be helpful for parents of children with learning disabilities and behaviour problems. We talked to parents who had attended the ‘Confident Parenting’ group to find out what they thought about it. They told us that the group helped them in lots of ways and think it would help other parents like them too. Summary The Confident Parenting group is a therapeutic group for parents of children with learning disabilities and challenging behaviour, which is informed by the principles of behavioural theory and acceptance and commitment therapy. Parent's experiences of the group were elicited through participation in a large focus group which followed a semistructured interview format with questions and discussion guided by the lead researcher. This aimed to elicit information about parent's overall experiences of attending the group and its perceived effectiveness. Thematic analysis was used to draw themes from parent's rich narratives. Four main themes were identified: (i) parent's pre‐group narratives, (ii) barriers and solutions, (iii) positive aspects of Confident Parenting and (iv) positive outcomes of Confident Parenting. The themes highlighted how beneficial parents found Confident Parenting as well as raised helpful ideas about how to engage families where there are practical and personal barriers to attending.
    December 13, 2014   doi: 10.1111/bld.12115   open full text
  • The impact of Irish policy and legislation on how adults with learning disabilities make choices.
    Eileen Carey, Colin Griffiths.
    British Journal of Learning Disabilities. December 09, 2014
    Accessible summary Choice is important to people with learning disabilities. The people who make laws want people with learning disabilities to make more choices. People in different countries make their own laws. Some people make decisions themselves or get help to make decisions. Sometimes other people make decisions for people with learning disabilities. It is important that the laws people make support people with learning disabilities to do what they want to do. Summary This paper reflects the impact of policy and legislation in the context of how adults with learning disabilities make choices. Following an overview of policies which have improved choice for people with learning disability in the United Kingdom, this paper reviews ‘choice’ in current Irish policy and legislation. This paper, while making comparisons with capacity legislation in the United Kingdom, presents a discussion on the perceived impact of the Assisted Decision‐Making (Capacity) Bill (2013) based on submissions from the Citizens Information Board (2013a), Mental Health Reform (2014), and Quinn (2013). Further choice making challenges such as direct payments and information sharing which confront adults with learning disabilities are highlighted and overall conclusions are drawn.
    December 09, 2014   doi: 10.1111/bld.12117   open full text
  • Implementing UK Autism policy & national institute for health and care excellence guidance‐ assessing the impact of Autism training for frontline staff in community learning disabilities teams.
    Alex Clark, Sarah Browne, Liz Boardman, Lealah Hewitt, Sophie Light.
    British Journal of Learning Disabilities. November 27, 2014
    Accessible summary Learning Disabilities staff were asked how much they know about Autism & people with Learning Disabilities. Doctors, nurses and other health staff knew quite a lot about Autism. Secretaries had not been offered any training about Autism for people with Learning Disabilities. Training about Autism was given to secretaries. We asked them to tell us what they thought of the training and how this had helped them do things differently. Secretaries felt that the training had helped with feeling valued and with understanding Autism. More help was needed to change the way they work with people with Autism. Summary UK National Autism Strategy (Department of Health, 2010 and National Institute for Health and Care Excellence guidance (NICE, 2012) states that frontline staff should have a good understanding of Autism. Fifty‐six clinical and administrative staff from a multidisciplinary community Learning Disability service completed an electronic questionnaire to evaluate levels of Autism knowledge. The results showed that, compared with clinical staff, administrative staff were more limited in their understanding of Autism and less able to access relevant Autism training. Autism training was provided for administrative staff. Focus group feedback about the training sessions and subsequent changes to practice concluded that the outcome of the training was positive. ‘Autism‐friendly’ changes to administrative practice included alterations to waiting environments, adapted communication for people with Autism and increased communication between clinical and administrative staff about the needs of people with Autism. Future Autism training for all frontline staff and ongoing evaluation of health professionals’ Autism knowledge are discussed.
    November 27, 2014   doi: 10.1111/bld.12116   open full text
  • The assessment of executive functioning in people with intellectual disabilities: an exploratory analysis.
    Shelley Bevins, Emily Hurse.
    British Journal of Learning Disabilities. November 20, 2014
    Accessible summary People with Down syndrome and intellectual disabilities are more likely to get dementia when they are older. This is an illness where people become forgetful and confused. Sometimes people with Down syndrome start to behave strangely at the start of the illness. They have difficulties solving problems or have changes in their behaviour. This is called executive functioning. We looked at some different tests to see whether they could help us understand whether someone was having problems with their executive functioning skills. We found that the tests can be useful and that we should be using them with more people. We think that we need to wait for a longer time before finding out whether they can tell us whether someone has dementia or not. This is important for people with intellectual disabilities as we need to find the right tests to help us diagnose dementia as early as possible. Summary The following article details a piece of service development work undertaken as part of the Plymouth Down Syndrome Screening Programme. The work aimed to review the use of three measures assessing executive functioning skills used within the Programme as well as with people without Down syndrome. Three tasks assessing executive functioning (the Weigl, Cats and Dogs, and verbal fluency task) were evaluated. The Weigl task was removed from the Programme and analyses due to floor effects and difficulties in administration. Correlation analyses showed relationships between the Cats and Dogs task and two other measures, cognitive skills as reported by carers and object memory. No relationships were found between the verbal fluency task and other measures. A full consideration is given to these findings, and implications for future practice are considered. Further data are needed to make full conclusions about the value of the tasks in predicting dementia in people with intellectual disabilities and people with Down syndrome. Further recommendations concerning the development of the assessment of executive skills are also considered.
    November 20, 2014   doi: 10.1111/bld.12112   open full text
  • Protecting the rights of pupils with autism when meeting the challenge of behaviour.
    Nick Hodge.
    British Journal of Learning Disabilities. May 23, 2014
    Accessible Summary Pupils with autism are often physically handled in schools without teachers realising that this can be distressing for them. Many teachers do not know about the United Nations Convention on the Rights of Persons with Disabilities. Teachers need support with developing their understanding of how pupils experience being handled. It is important that the rights of disabled pupils are recognised and protected. Summary ‘Positive handling’ has become a popular intervention within education and other services in England in the management of behaviours that challenge. This paper uses a vignette of an observation of the handling of children with autism as a starting point for consideration of whether this practice can ever really be experienced as positive or whether it is often little more than a mechanism of control that disregards the rights of disabled children and young people. All schools are mandated under the United Nations Convention on the Rights of Persons with Disabilities to protect the rights of disabled pupils, but, to date, there has been very little engagement by teachers with this agenda. This paper identifies some of the rights of pupils that are negated through current practice and evaluates what support Prouty's principles of pre‐therapy from the field of counselling might offer teachers with developing a rights based agenda.
    May 23, 2014   doi: 10.1111/bld.12096   open full text
  • The ‘double‐bind of dependency’: early relationships in men with learning disabilities in secure settings.
    Kelly Rayner, Harry Wood, Nigel Beail.
    British Journal of Learning Disabilities. May 13, 2014
    Accessible Summary This research project is about social lives. Ten men with learning disabilities who had broken the law and who lived in hospital talked about their social lives. We asked the 10 men about the people who had been in their lives before they broke the law. This research project matters to people with learning disabilities because it tries to find out how different experiences affected the 10 men who were interviewed. This could help us understand all people with learning disabilities better and could make services better for everyone. Summary Although the development of secure attachments has been shown to be more problematic for people with learning disabilities, there is a shortage of research into the attachment experience of people with learning disabilities who have broken the law. The present study used thematic analysis to explore the attachment experiences of 10 men with learning disabilities in secure settings. Attention was paid to formative relationship experiences in early life, along with an exploration of current relationships, with the content and direction of interviews being guided by participants. Two superordinate themes emerged from the analysis: ‘disempowerment’ and ‘ineffective care’. Results suggest that participants experienced a ‘double‐bind of dependency’ in which they felt a strong need for others, but had experienced unhelpful or harmful relationships. The clinical and practical implications for this are discussed.
    May 13, 2014   doi: 10.1111/bld.12095   open full text
  • A search for meaning: telling your life with learning disabilities.
    Jaime Helena Horn, Duncan Moss.
    British Journal of Learning Disabilities. April 18, 2014
    Accessible summary This article describes one woman's experience of living life with a learning disability. It gives a summary of research into this area. It describes a narrative approach. This research is important as it helps us to understand the experiences of people with learning disabilities. Summary Research has identified the collective experiences of oppression, stigma and isolation in the lives of people with learning disabilities. Against the backdrop of social and cultural processes that shape and limit the life experiences of people with learning disabilities, the authors are interested in how the individual develops a sense of self and identity. The aim is to further understand the subjective world of one woman with learning disabilities, drawing attention to how meaning about herself and her world has been constructed. The authors present and analyse one woman's life story, adopting a narrative and participatory research approach, with its focus on personal experience, whilst making links between the individual and social world.
    April 18, 2014   doi: 10.1111/bld.12093   open full text
  • When satisfaction is not directly related to the support services received: understanding parents' varied experiences with specialised services for children with developmental disabilities.
    Marie Robert, Line Leblanc, Thierry Boyer.
    British Journal of Learning Disabilities. March 26, 2014
    Accessible summary Parents of children with developmental disabilities need formal support services to help them. Their well‐being and satisfaction depend on how the support services respond to their needs. Some parents want to be more involved in decisions about support services and intervention for the best of their child's interests. Other parents believe that the child's best interest are addressed adequately by the professionals who deliver the services. Summary Parents of children with developmental disabilities (autism or intellectual disabilities) are more susceptible to stress and have a greater burden of adversity than other parents. Their well‐being and satisfaction greatly depend on the system's response of finding them formal support and the help they need. This study proposes an interpretive approach, based on the (fifteen) parents' experiences, to find and understand the strengths and weaknesses of specialised support services. Furthermore, our research aims to obtain data on parents' experiences in order to identify the conditions and the perceptions on which feeling satisfaction or dissatisfaction is based. The situations that were considered positive are all directly related to the professional concrete support parents say they received (e.g. ‘working with’ their child to improve communication with him or her, understanding his or her issues, and managing difficult behaviours). However, the overall experience of each parent has either a dominant positive or a dominant negative connotation. The parents' satisfaction or dissatisfaction appears to be constructed from two criteria: (i) whether parents see themselves as experts or nonexperts on the situation of their child and (ii) parents' opinions on the purpose or goal of the intervention or of the services they received.
    March 26, 2014   doi: 10.1111/bld.12092   open full text
  • Hearing problems in the learning disability population: is anybody listening?
    Alex McClimens, Siobhan Brennan, Pauline Hargreaves.
    British Journal of Learning Disabilities. March 17, 2014
    Accessible summary people with learning disability tend to have more hearing problems than other people. often these hearing problems are not picked up by doctors, nurses, carers or even by the people themselves. living with undetected hearing loss means people miss out on information, social opportunities and entertainment. routine screening for hearing loss would improve the lives of many people with learning disability. Summary We undertook this project because we believed that hearing loss experienced by the target population was greater than the referral figures suggested. Therefore, we set up a trial service initiative designed to examine the efficacy of different referral routes into audiology services for adults with learning disability. This retrospective analysis focuses on the generation of data on hearing loss on a small population sample (n = 136) gathered over a 6‐month period in 2012. We suggest remedial action now to prevent more problems in the future.
    March 17, 2014   doi: 10.1111/bld.12090   open full text
  • Constructing sexual identities: people with intellectual disability talking about sexuality.
    Claire Azzopardi‐Lane, Anne‐Marie Callus.
    British Journal of Learning Disabilities. March 12, 2014
    Accessible summary People with intellectual disability need to be able to talk about the things that are important to them in their lives. This includes talking about their sexuality and the type of relationships they would like to have. A self‐advocacy group did research about this subject with our support. Together we found that sexuality is an important topic for many people with intellectual disability. There are those who would like to have more opportunities to have sexual relationships. Summary This paper presented research undertaken in collaboration with a self‐advocacy group using inclusive research methods and puts forward the views of people with intellectual disability on the topics of sexuality and relationships. The paper presents the perceptions of sexuality of the people with intellectual disability and how these are influenced by social and cultural norms. Using Judith Bulter's concept of performativity, the analysis of the findings shows how some people with intellectual disability accept the sexual norms that are ascribed to them, while others resist them. The paper also shows how the inclusive research process itself enabled the people with intellectual disability who took part to articulate their acceptance or resistance of these norms.
    March 12, 2014   doi: 10.1111/bld.12083   open full text
  • Developing outcome measures for a Family Intensive Support Service for Children presenting with challenging behaviours.
    Bethany Mulligan, Mary John, Rachel Coombes, Rosemary Singh.
    British Journal of Learning Disabilities. March 12, 2014
    Accessible summary Services should give support to the whole family who live with a child with a learning disability. The aim of this study was to understand how helpful a family support service is in reducing challenging behaviour in children with learning disabilities. We did this by looking at the outcome measures they already use. We wanted to find out how good they are at measuring change. We found that The Family Intensive Support Service (FISS) reduced challenging behaviour in children and increased parent's ability to cope with and manage challenging behaviour. Outcome measures used by the FISS team were good at showing change. Summary Seven per cent of individuals with learning disabilities also display challenging behaviour (Challenging behaviour: analysis and intervention in people with severe intellectual disabilities, 2001, Cambridge, Cambridge University Press), which has an effect on the whole family. Services need to be developed to support and reflect this need (Better health, better lives: children and young people with intellectual disabilities and their families, 2010, Romania, Bucherest). This is a retrospective pre‐ and postevaluation study examining the utility of specific outcome measures assessing the effectiveness of interventions addressing behavioural problems within a Family Intensive Support Service (FISS). After one year, FISS successfully reduced problematic behaviours and increased a sense of coping and ability to manage the behaviour for parents. The outcome measures used were sensitive enough to show change on specific subscales of the measure. Further research is needed to look at whether there is a need to create a new measure encapsulating the best elements of these measures.
    March 12, 2014   doi: 10.1111/bld.12091   open full text
  • Investing in advocacy for parents with learning disabilities: what is the economic argument?
    Annette Bauer, Gerald Wistow, Josie Dixon, Martin Knapp.
    British Journal of Learning Disabilities. February 25, 2014
    Accessible Summary An advocate helps you know your rights and what is expected of you. An advocate helps you speak up for yourself. Parents with learning disabilities need advocates when professionals are worried about their children. There is not much money for advocacy at the moment. Not all parents with learning disabilities can get advocacy. This is why we tried to find out if it makes sense for the government to spend more money on advocacy. We found out that advocacy can be good value for money. It can help parents and children. It can mean that social services have to pay less to help parents and their children. Summary Advocacy can help service users both to understand their rights and choices and also to support them in resolving issues of great significance to their lives. We investigated some of the costs and outcomes of advocacy provided to parents with learning disabilities at risk of having their children taken into care. Through two workshops and a survey, we gathered information about service use and outcomes at case‐ and project‐levels. We used evidence from previous studies to assign unit costs to service use and to value the economic consequences of outcomes. We combined data with simple decision‐modelling techniques. The mean cost of the advocacy intervention was £3040; potential cost savings per case ranged from £720 if we only considered the impact on children's social services, to over £3130 if savings to other public services were considered. Estimated improvements in quality of life and earnings were worth an additional £550. The limitations of our study mean those findings should be interpreted cautiously. Nonetheless, they suggest there is scope for securing better value for money through introducing advocacy for parents with learning disabilities.
    February 25, 2014   doi: 10.1111/bld.12089   open full text
  • Screening for diabetic retinopathy in adults with learning disability: current uptake and adjustments to facilitate equality of access.
    Rachel F. Pilling.
    British Journal of Learning Disabilities. February 21, 2014
    Accessible summary People with learning disabilities who develop diabetes should be offered photograph tests of their eyes each year. People with learning disabilities who develop diabetes should have the same access to services as other people. This study looked at people with learning disabilities and diabetes to see whether they were getting the right tests for their eyes. In Bradford, most people with learning disabilities and diabetes have their eyes checked. Some people do not go to the appointment or find the tests difficult. A few people are not given an appointment at all. Changes should be made to help people with learning disabilities have their eyes checked, like allowing extra time and giving EasyRead information. Summary Equality of access to health care for adults with learning disability has been in the spotlight in the UK in recent years due to publication of several reports. Adults with learning disability are thought to account for a significant proportion of the diabetic population in the UK. A list of adults known to the learning disability health facilitation team, Bradford, Yorkshire, UK, was crossed checked against the list of adults known to be eligible for diabetic retinopathy screening held by general practice groups. Various criteria were devised by which the quality of the service and equality of access could be measured. Overall 91% had been offered diabetic retinal screening; however, 35% of patients did not have a recorded screening outcome. Adults with learning disability and diabetes represent a very small proportion of the total local diabetic population. National audit standards require that 80% of patients with diabetes undergo retinopathy screening, and currently, this standard is not being met for adults with learning disability. There are many barriers to diabetic retinopathy screening for a patient with learning disability, and suggestions for ways to improve equality of access are discussed.
    February 21, 2014   doi: 10.1111/bld.12088   open full text
  • Safe and social: what does it mean anyway??
    Grainne Tinney, Jenny Forde, Loraine Hone, Lisa Flanagan, Martine Smith.
    British Journal of Learning Disabilities. February 21, 2014
    Accessible summary People with intellectual disabilities can find it hard to understand what behaviours are ok in what situations and with what people. These rules change all the time, and so it is important to be able to work out how to behave for each new situation. If people with intellectual disability behave inappropriately, they may be judged as rude. They may put themselves at risk and be unsafe if they do not understand what information is ok to share with others and how to say no if someone is behaving inappropriately with them. This paper describes a training programme that was developed to help people with intellectual disabilities to work out if a behaviour is ok or not ok. The programme also shows that it is important to think about the person we are with and the place we are in so we can work out if a behaviour is ok or not. Summary This paper outlines a programme Safe and Social that has been implemented with adults with intellectual disability across multiple contexts in a service based in Ireland. The emphasis within the programme is on providing service users and staff with a framework and the necessary language to discuss social behaviours and boundaries, moving away from an emphasis on rules and regulations. The programme draws on visual supports of three nested circles, red indicating ‘not ok’, green indicating ‘ok’ and a central circle that is used to set the topic of discussion. Over a series of seven modules, adults with intellectual disabilities and their support staff are encouraged to collaboratively problem solve some of the behaviours and understandings that can undermine social acceptability and compromise personal safety. Based on positive outcomes over a five‐year period, we highlight the need for further research to explore the effectiveness of the programme.
    February 21, 2014   doi: 10.1111/bld.12087   open full text
  • ‘You have to care.’ perceptions of promoting autonomy in support settings for adults with intellectual disability.
    Jami Petner‐Arrey, Susan R. Copeland.
    British Journal of Learning Disabilities. February 21, 2014
    Accessible Summary People who get paid to support people with intellectual disabilities need to understand what is important to people with intellectual disabilities and how to help them get what they want. We asked people with intellectual disabilities and people paid to support them about what is important to people with disabilities and how people with disabilities can get what they want. We learned that: The people with intellectual disabilities whom we talked to knew what they wanted. The support people that we talked to had a hard time figuring out what people with intellectual disabilities wanted and how they could help them get what they wanted. The support people that we talked to said that some of the rules at their jobs made it hard to help people with intellectual disabilities to do what they wanted. Nearly everyone we talked to said that it was important to support people with intellectual disabilities in a caring way. Summary This study from the south‐western United States investigated the perceptions of persons with intellectual disability receiving support and of persons providing support regarding the autonomy of people with intellectual disability. The participants included 10 people with intellectual disability and 10 support workers. Through interviews, this qualitative investigation examined issues related to autonomy in support services. Analysis of participant interviews revealed that support workers and people with intellectual disability faced challenges that restricted the promotion of the autonomy of people with intellectual disability. Both groups of participants noted that support workers had to care about their work with individuals with intellectual disability to effectively promote their autonomy.
    February 21, 2014   doi: 10.1111/bld.12084   open full text
  • Inconsistencies in the roles of family‐ and paid‐ carers in monitoring health issues in people with learning disabilities: some implications for the integration of health and social care.
    Diane S. Willis.
    British Journal of Learning Disabilities. February 21, 2014
    Accessible summary This paper looks at the views of paid‐ and family‐carers about discussing health matters with people with learning disabilities. The author found that the roles of paid‐ and family‐carers in monitoring health were not clearly defined. Explaining health problems and different medical tests to people with learning disabilities proved difficult. Nevertheless, carers possessed good skills in helping people with learning disabilities understand more about their health. Summary Changes in the living circumstances of people with learning disabilities have seen responsibility for their health become the provenance of paid‐and family‐carers. Thirteen semi‐structured interviews were conducted with three family‐carers and ten paid‐carers. Findings revealed that the role of these carers was undefined, leading to difficulty in deciphering who was responsible for the health care of the people they supported, with some paid‐carers claiming that health was outwith their remit. The difficulty of monitoring health problems of people with learning disabilities was noted, and carers disclosed skills and techniques that they used to explain health messages to individuals. If the health needs of people with learning disabilities are to be met, then a more consistent approach to health care within the community setting is needed, especially in terms of the remit of paid‐and family‐carers and with the integration of health and social services.
    February 21, 2014   doi: 10.1111/bld.12082   open full text
  • Deciding what to research: an overview of a participatory workshop.
    Ruth Northway, Karen Hurley, Chris O'Connor, Helen Thomas, Joyce Howarth, Emma Langley, Sue Bale.
    British Journal of Learning Disabilities. February 20, 2014
    Accessible summary People with learning disabilities are involved in doing research more and more. A lot of papers have been written about this. These papers sometimes do not say whether people with learning disabilities decided what should be researched. This paper talks about how a group of people with learning disabilities and professionals worked together to decide what research they should do in their area. Summary While recent years have seen an increase in the number of participatory and inclusive research studies being undertaken where people with learning disabilities are active members of the research team, little has been published about how teams decide what to research. This paper aims to fill this gap by discussing how in one area of Wales a participatory workshop was held to try and identify priority areas for research. By sharing our experiences, we hope that other people will be encouraged to try similar approaches. First, however, this activity is set in the context of wider debates concerning participatory research.
    February 20, 2014   doi: 10.1111/bld.12080   open full text
  • Exploring the self‐concept of adults with mild learning disabilities.
    Claudio Pestana.
    British Journal of Learning Disabilities. February 15, 2014
    Accessible Summary This study tried to find out more about what people with mild learning disabilities think of themselves. Eight adults with mild learning disabilities were interviewed individually. Participants said that they were friendly, helpful, supportive, nice looking, artistic, knowledgeable, independent, capable and religious. Some participants also said that they were anxious, impatient, slow, not normal and were not very mobile. This study shows that more can be done to help people with learning disabilities think more positively about themselves. Summary This qualitative study aimed to add to the research on the self‐concept of adults with mild learning disabilities and to generate a deeper understanding of their self‐perceptions rather than draw generalised quantitative conclusions. Eight adults diagnosed with mild learning disabilities receiving support from a supported living project were interviewed individually using a semi‐structured interview. The interviews were recorded and transcribed verbatim. The data collected were qualitatively analysed using interpretative phenomenological analysis. The findings revealed that the participants described themselves with mostly positive and some negative attributes in the different self‐concept domains.
    February 15, 2014   doi: 10.1111/bld.12081   open full text
  • Thematic analysis of the effectiveness of an inpatient mindfulness group for adults with intellectual disabilities.
    Hatice Yildiran, Rachel R. Holt.
    British Journal of Learning Disabilities. February 15, 2014
    Accessible summary Mindfulness helps people focus instead of worrying about the past or future. We talked to six people who took part in a mindfulness group. They all had intellectual disabilities and were in hospital for mental health problems. They told us the group helped, and we hope that mindfulness can help other people too. Summary The study focused on the effectiveness of group mindfulness for people with intellectual disabilities in an assessment and treatment unit. Six participants with mild or moderate intellectual disabilities were interviewed using semi‐structured interviews. The interviews focused on identifying the benefits and difficulties of using mindfulness. The interviews were analysed using thematic analysis. Five themes were identified which were categorised into interpersonal (‘helping people’) and intrapersonal (‘focusing on one particular thing’; ‘improving skills’; get rid of all nasty bad stuff you want to get rid of’) benefits. The theme ‘bit too late to teach old dog new tricks’ captured the difficulties encountered. The themes highlighted that people with intellectual disabilities were able to form an understanding of mindfulness and were able to benefit from the intervention.
    February 15, 2014   doi: 10.1111/bld.12085   open full text
  • Gaining views from pupils with autism about their participation in drama classes.
    Daisy Loyd.
    British Journal of Learning Disabilities. December 30, 2013
    Accessible Summary Pupils with autism were interviewed about their participation in drama classes. Interview approaches were devised so that the pupils could give their views. These approaches used different ways to engage the pupils including widgit symbols, photographs and video. The information the pupils gave was important in building an understanding of what they take away from drama sessions. Summary Pupils with autism (aged 16–18) were interviewed as part of a study examining the participation of individuals with autism in drama education. This paper reflects on the approaches devised to gain views from ten pupils with autism who communicated in different ways. The procedure for gaining views from the pupils is explained, and the views they give are outlined. The pupils were able to identify aspects of drama education that they liked and did not like; share goals of drama education and communicate feelings about drama education. The views are discussed in terms of how they inform understandings of individuals with autism as well as their participation in drama education. Challenges specific to gaining views from a group of pupils with autism are considered and implications for future research presented.
    December 30, 2013   doi: 10.1111/bld.12078   open full text
  • ‘I never thought I would have to do this’: narrative study with siblings‐in‐law who live together with a family member with a disability.
    Inge Vanhoutteghem, Geert Hove, Geert D'haene, Veerle Soyez.
    British Journal of Learning Disabilities. November 26, 2013
    Accessible summary In Belgium some adults with learning difficulties live with their siblings and siblings‐in‐law. The authors of this article listened to siblings‐in‐law, trying to understand how they felt about this living together. This article seems to be important for those persons with learning disabilities who give a lot about their sisters and brothers. Summary There is a lack of international research focusing on how the siblings‐in‐law of adults with a learning disability experience their commitment to provide support. Using narrative research, the authors have aimed to gain an insight into the perspectives of 14 siblings‐in‐law (living in the Flemish part of Belgium) about the decision to live together with a family member who has a learning disability. The decision to live together usually begins with a crisis. However, the decision process is a complex mechanism; it involves dynamics and events within a family (between family members both with and without blood relationships) and is intensified by experiences within a society that holds different views about families and disability. We are aided in gaining a deeper understanding of this complex process by considering interpretations based on the contextual framework of Boszormenyi‐Nagy.
    November 26, 2013   doi: 10.1111/bld.12077   open full text
  • Telling our story: a narrative therapy approach to helping lesbian, gay, bisexual and transgender people with a learning disability identify and strengthen positive self‐identity stories.
    Anna Elderton, Sally Clarke, Chris Jones, James Stacey.
    British Journal of Learning Disabilities. October 30, 2013
    Accessible Summary This article is about a group for people with learning disabilities who are gay, lesbian, bisexual or transgender (e.g. people who dress in clothes traditionally worn by the opposite sex). People who went to the group liked telling stories about their lives and other people listening to them. People who went to the group said it helped them learn about who they are and to feel good about themselves. Summary Historically, and to a somewhat lesser extent presently, people with learning disabilities have had little or no voice in the stories other people (particularly professionals) tell about them and their lives. Four psychology workshops, based on a narrative therapy approach, were run for a group of people with learning disabilities who identify as lesbian, gay, bisexual or transgender (LGBT) who regularly attend a support group called ‘Mingle’. The workshops invited members to tell their stories, especially the parts not usually told. The aim was to support people to identify and strengthen positive self‐identities. Workshops were facilitated by two trainee clinical psychologists within a Community Learning Disability Team (CLDT).
    October 30, 2013   doi: 10.1111/bld.12075   open full text
  • Experiences of people with learning disabilities in the criminal justice system.
    Elly Hyun, Lyndsey Hahn, David McConnell.
    British Journal of Learning Disabilities. October 30, 2013
    Accessible Summary Many people with learning disabilities are caught up in the criminal justice system. Yet few studies have explored what this is like for them. The available research suggests that people with learning disabilities often feel alone and afraid when they are caught up in the criminal justice system. They do not understand what is happening to them, and they feel like there is no one they can turn to for support. The findings raise concerns about how people with learning disabilities are treated within the criminal justice system, and whether their rights are being respected. Further research is needed to better understand the experiences and support needs of people with learning disabilities who are caught up in the criminal justice system. Summary The aim of this review is to synthesise findings from research about the experiences of people with learning disabilities who have faced arrest and jail time. After an extensive search of the literature, four relevant articles were found. The first‐person accounts presented in these four studies were pooled, and a thematic analysis was undertaken. Three common themes were identified: (i) study participants did not understand what was happening to them, or why, (ii) they felt alone, and they did not know where to turn, or to whom for support and (iii) they were uncertain about what to say or do. Overall, the findings raise concerns about the treatment of people with learning disabilities in the criminal justice system and their access to procedural justice. Further research is needed to improve understanding of their experiences and support needs. There is unequivocal evidence that persons with learning disabilities are over‐represented in the prison population. To date however, few studies have investigated their first‐hand experience, including their experiences of being interrogated, of standing trial, serving time and transitioning back into the community. The purpose of this review is to draw what insights we can from the limited available data and to identify directions for future research.
    October 30, 2013   doi: 10.1111/bld.12076   open full text
  • ‘My brother likes meeting new people, but don't ask him any direct questions’: involving adults with autism plus learning disability in a qualitative research project.
    Rosemary Tozer, Karl Atkin, Aniela Wenham.
    British Journal of Learning Disabilities. September 20, 2013
    Accessible Summary People who have difficulties in communication and understanding are often excluded from research which is about them In our research, we wanted to find out how people with autism plus learning disability get on with their brothers and sisters once they are grown up We met with twelve people with autism along with their brother or sister without disability in a way that we hoped would make them feel relaxed Meeting the brothers and sisters with autism was important, and it helped us understand their relationships much better. It also helped us make suggestions about how they and their siblings could be better supported. Summary Adult siblings of people with autism and a learning disability have hitherto been largely overlooked by research, policy and practice in the UK. As part of a qualitative study focussing on adult siblings, we met twelve people with autism plus severe learning disability with their brother or sister. Individually tailored resources were used to make the meeting accessible and positive. Sibling involvement was essential to the participation, and inclusion of adults with autism plus learning disability strengthened the research findings, making them more valid and more relevant to policy and practice. This article describes our experiences of facilitating this involvement, the methods used and understandings gained, with the aim of encouraging practitioners and researchers to do likewise.
    September 20, 2013   doi: 10.1111/bld.12073   open full text
  • Identifying the types of technology that are used by children with intellectual disabilities and associated complex needs living at home in Ireland.
    Honor Nicholl, Carmel Doyle, Sinead Moran, MaryJo Guilfoyle.
    British Journal of Learning Disabilities. August 07, 2013
    Accessible summary This research indentifies the types of technology children with complex needs use at home. Many types of equipment were identified. Parents need support in using this equipment. Summary Within the literature, there is evidence that caring for children with complex needs, however defined, includes the management of equipment and resources (Child Care Health Dev, 2001, 27, 321; Technology Dependent Children and Family Life. Research Works, University of York, UK, Social Policy Research Unit, 2003; Journal of Specialists in Pediatric Nursing, 2007, 12, 72; Caring for Children with Complex Needs in the Community, Oxford, Blackwell Publishing, 2008). The objectives of this mixed method study were to identify the range of technology used by children with complex needs and identify issues of concern for parents. Data were collected using a specifically designed questionnaire that was developed with experts. The questionnaire was subsequently administered by telephone survey and personal contact with parents of children with complex needs. Findings indicated that children with intellectual disabilities* and associated complex needs require the use of high levels of technology** to maintain their health and well‐being. On average, families identified that 22 pieces of equipment were used by their child. This study is significant in identifying technology used in the home for the care of children with intellectual disabilities and associated complex needs. Associated issues concerning the use and management of this technology have been highlighted. Areas in need of development include provision of supporting mechanisms for parents to meet the daily requirements of their child in the home.
    August 07, 2013   doi: 10.1111/bld.12045   open full text
  • ‘Happy and a bit Nervous’: the experiences of children with autism in physical education.
    Seán Healy, Rachel Msetfi, Stephen Gallagher.
    British Journal of Learning Disabilities. August 07, 2013
    Accessible summary Twelve children with autistic disorder (aged 9–13 years) talked about their time in physical education. The children spoke about good and bad experiences they had in physical education. Most of the children found some activities hard to do and felt left out at times. They enjoyed spending time with other children and making friends. Summary Twelve students with autistic disorder participated in interviews to reveal their perspective of physical education. Inductive thematic analysis was undertaken to provide a comprehensive account of the data. Three key themes emerged, each a compilation of a set of subthemes. The first theme, individual challenges, was comprised of physical ability, sensory challenges and a fear of injury. The second theme, peer interactions, encapsulated subthemes of initiation of friendship, camaraderie, social comparison and bullying. The final theme that emerged from the data was exclusion, which attends to children's experiences of being excluded by the teacher or as a result of activities being too difficult. Most notably, however, this theme relates to children requesting to be excluded. These findings are discussed in relation to research on the perspectives of students with and without disabilities. Considerations for future research are also provided.
    August 07, 2013   doi: 10.1111/bld.12053   open full text
  • Free play time of children with learning disabilities in a noninclusive preschool setting: an analysis of play and nonplay behaviours.
    Joanne Fallon, Siobhan MacCobb.
    British Journal of Learning Disabilities. August 07, 2013
    Accessible summary Some children with disabilities go to special preschools where adults help them play. The adults who work in preschools sometimes ask occupational therapists for advice to help children play more. Occupational therapists need to know how children play when not helped by adults. This study videoed children playing both with lots of toys and without toys to see how they chose to play. Summary Within the Republic of Ireland, young children with learning disabilities may attend special preschools where they do not share any part of their day with typically developing children. Within these settings, preschool staff support children's play. Clinicians such as occupational therapists may be called upon to assist in progressing their play. To provide appropriate recommendations, occupational therapists must have a clear understanding of what play a child with learning disabilities engages in when not supported by adults. Occupational therapy literature described play as the most common occupation of children with a focus on process‐driven activity. This may be at odds with a model of early intervention, where play is often product‐driven, with the end goal in mind. The aim of this research was to establish what free play, if any, children with learning disabilities engage in when not supported by adults in an Irish preschool setting. Secondly, this study sought to describe what behaviours these children engage in when they were not playing. Finally, this study sought to establish inter‐rater reliability of the Revised Know Preschool Play Scale with this small sample. Systematic observation was used to explore the play and nonplay behaviours of the children involved. A convenience sample was used to identify five children to participate in the study. Results indicated that children engaged in free play within the sensory motor stage of development, as assessed using the Revised Knox Preschool Play Scale. They also spent significant time in nonplay behaviours. The behaviour patterns of the children and time spent in different activities were explored.
    August 07, 2013   doi: 10.1111/bld.12052   open full text
  • The role of ‘natural supports’ in promoting independent living for people with disabilities; a review of existing literature.
    Carmel Duggan, Christine Linehan.
    British Journal of Learning Disabilities. August 07, 2013
    Accessible summary This paper is a summary of research on the support people with disabilities get from their friends and family. The research is mostly about people with intellectual disabilities, but there is also some research on people with other disabilities. The main findings in the research are as follows: People with intellectual disabilities have small groups of supporters. These supporters are family, friends with intellectual disability and people who work in services. People with disabilities say that services could provide more support for making and keeping friends. There are projects that have helped people with disabilities make friends and be a part of their community. More research is needed on these projects. Policy makers, services and other people who deliver services should put more efforts into supporting people with disabilities to make friends in their community. Summary The purpose of this review was to identify the available evidence base on role of natural supports in promoting independent living for people with disabilities. A search of peer‐reviewed literature identified 30 core papers and 16 contextual papers which addressed issues relating to natural supports and their role in facilitating independent living. The papers reveal that the evidence base is limited and focuses heavily on the social networks of people with intellectual disabilities, which typically comprise family, other people with disabilities using services and staff members. People with disabilities themselves call for greater support in establishing and maintaining social relationships in the community. Some initiatives such as peer‐based support and befriending schemes are reviewed, mindful that few have been formally evaluated. The issue for policy makers is whether, following decades of deinstitutionalisation, efforts to physically locate people with disabilities within their local communities have come at the price of social inclusion.
    August 07, 2013   doi: 10.1111/bld.12040   open full text
  • The ‘Our Say, Our Rights’ quilt.
    Lorraine Keating, Fintan K. Sheerin.
    British Journal of Learning Disabilities. August 07, 2013
    Accessible summary This article is about the rights of people with intellectual disabilities. People with intellectual disabilities in Ireland made quilt squares with pictures on them. The pictures were about their rights. People want to be able to choose and to do the same things as everyone else.
    August 07, 2013   doi: 10.1111/bld.12025   open full text
  • Mothers with intellectual disabilities: interactions with children and family services in Ireland.
    Fintan K. Sheerin, Paul M. Keenan, Denise Lawler.
    British Journal of Learning Disabilities. August 07, 2013
    Accessible summary This article is about women with intellectual disability who have children. The article tells the stories of four women with intellectual disabilities in Ireland who have children. It also explains how hard it was at times for them to work with Child and Family Services. Many mothers with intellectual disabilities want to keep their babies. Women with intellectual disabilities who are mothers should be provided with proper support to help them care for their children. Summary Traditionally, women with intellectual disabilities have faced challenges in accessing effective public health services and social service provision during pregnancy and early motherhood. The authors report on the experiences of four women with intellectual disabilities in their interactions with childcare services in the Republic of Ireland. They discuss the women's feelings of isolation, fears of losing their children and the disempowering effects of inadequate, ubiquitous responses adopted by many professionals and services. This study recommends a person‐centred, rights‐based approach to meeting the needs of these women.
    August 07, 2013   doi: 10.1111/bld.12034   open full text
  • Irish attitudes to sexual relationships and people with intellectual disability.
    Roy McConkey, Gerry Leavey.
    British Journal of Learning Disabilities. August 07, 2013
    Accessible summary A national survey of over 1000 people took place in Ireland in 2001, 2006 and again in 2011. In 2011, half the people in the survey thought that people with intellectual disability or autism had the right to sexual relationships. In 2011, one‐third agreed that people with intellectual disability or autism should have children if they wished. People's attitudes towards people with intellectual disabilities were similar to their attitudes towards people with mental illness. More people in the survey agreed that people with physical or sensory disabilities had the right to have sexual relationships and have children compared with people with intellectual disability. People in the survey were more likely to agree with the right to sexual relationships for people with intellectual disabilities if they: ○ lived outside of Dublin; ○ were single; ○ had more people in their own social networks; ○ were comfortable living near people with intellectual disability. People need to know more about what people with intellectual disabilities hope for from relationships. People need to know more about the supports that are in place: ○ to help people with intellectual disabilities make choices about sexual relationships ○ to protect people with intellectual disabilities against abuse. Summary Limited progress has been made in supporting people with intellectual disabilities to form intimate relationships. A critical factor that has been rarely researched is the attitude of the general public which likely has a significant influence on public policy on this issue. Unique to Ireland, are the five‐yearly national surveys commissioned by the National Disability Authority that recruit representative samples of over 1000 adult persons. On three occasions in the past 10 years, respondents were asked to rate their agreement that people with various disabilities and with mental health difficulties had the right to fulfilment through sexual relationships and to have children if they wished. Secondary analysis of the 2011 data set identified those persons who were more likely to be in agreement and also the concerns raised by respondents. The findings are discussed in relation to priorities for future research and actions needed to reduce the stigma associated with disability or mental ill health.
    August 07, 2013   doi: 10.1111/bld.12036   open full text
  • Ireland's ratification of the UN convention on the rights of persons with disabilities: challenges and opportunities.
    Suzanne Doyle, Eilionóir Flynn.
    British Journal of Learning Disabilities. August 07, 2013
    Accessible summary Being an adult gives people a right to make their own decisions. This right is called legal capacity. However, some adults need help with making decisions, and some adults need support to explain their decisions to others. Some of the laws in Ireland are outdated, and as a result, some adults, who are able to make their own decisions, do not get to make their own decisions. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) says that all people have legal capacity, that is, the right to make their own decisions and have these decisions respected by law. The United Nations Convention wants Ireland to put new laws in place so that decisions that are made which respect the will and preferences of that person. Ireland needs to put these new laws in place so that Ireland can ratify the treaty of the United Nations. Ratifying a treaty means that a country agrees to do what that treaty says. Organisations who work with and advocate for people with disabilities have been trying to make sure that the new law does what Article 12 says. Summary Ireland was amongst the first signatories of the CRPD on the 30th of March 2007. The Irish government has stated that the barrier to ratification of the Convention is Ireland's out‐dated wards of court system which, upon a finding of incapacity, removes all decision‐making rights (legal capacity) from an individual. This paper examines the implications of Article 12 of the CRPD which prohibits the removal of a person's legal capacity and instead requires the provision by States Parties of the supports necessary to ensure that a person can exercise their legal capacity on an equal basis with others. The paper charts the progress towards ratification by analysing the proposals for reform pre‐CRPD, focusing on the reform of the law on legal capacity as well as the advocacy of civil society organisations on this issue. It concludes with setting out and commenting on government statements on the content of the forthcoming published legislation and makes tentative remarks based on this. The reason for focusing on legal capacity reform is that this is the only issue which has been highlighted by government as a barrier to Ireland's ratification of the CRPD.
    August 07, 2013   doi: 10.1111/bld.12050   open full text
  • Learning disability: experience of diagnosis.
    Elinor Kenyon, Nigel Beail, Tom Jackson.
    British Journal of Learning Disabilities. July 30, 2013
    Accessible summary This study asked people with learning disabilities what it was like to find out they had a learning disability. It found that the experience of finding out they have a learning disability can be a difficult experience which takes time to come to terms with. This research could help professionals support people better with this. Summary Studies have focused on the experience of diagnosis from the perspectives of parents of children with learning disabilities, but there has been limited methodologically rigorous investigation into the experience for the person themselves. Eight participants were recruited from a range of different backgrounds. Interviews were analysed using interpretive phenomenological analysis. Three main themes emerged. The first concerned awareness of difference. Participants described becoming aware of an unwanted difference at school. Adolescence appeared as a time when an increased understanding of disability developed. In the second theme of ‘the relationship with nondisabled others’, participants described their opinions on labelling and their perspectives on how others viewed them. The final theme explored coping responses to stigma.
    July 30, 2013   doi: 10.1111/bld.12054   open full text
  • Systemic family therapy using the reflecting team: the experiences of adults with learning disabilities.
    Katharine Anslow (née Atkins Furniss).
    British Journal of Learning Disabilities. June 27, 2013
    Accessible summary Sometimes people with learning disabilities and their families get upset and want to talk about their problems. They might see a therapist who talks to them and their family together. This is sometimes called family therapy. The therapist might use a team of other therapists to give the family other ideas. This is called the reflecting team. We wanted to know what it was like for the person with learning disabilities when this happened. We showed five adults with learning disabilities a DVD of the reflecting team in their family therapy and asked what it was like for them. They told us interesting things about what was helpful and what was not helpful in their therapy. This will help us give a better service to adults with learning disabilities who have family therapy. Summary This research aimed to illuminate the experiences of adults with learning disabilities of the reflecting team, in the context of their systemic family therapy. Five adults with learning disabilities were recruited from one community learning disability team. A qualitative design using interpretative phenomenological analysis (IPA) was appropriate to gather participants' views using semi‐structured interviews. The interviews used DVD‐assisted recall of the reflecting team. Various validation strategies were employed, including respondent feedback and a focus group with the therapists. Insights were gained in the areas of ‘therapists’ focus on strengths and difficulties’, ‘differences in metacognition’, ‘finding a voice in therapy’, ‘frustration with the outcome of therapy’ and ‘managing an unusual experience’. The research has indicated some important factors to consider in the successful inclusion of adults with learning disabilities in systemic family therapy.
    June 27, 2013   doi: 10.1111/bld.12048   open full text
  • Engaging young people with Autism Spectrum Disorder in research interviews.
    Caitlin Harrington, Michele Foster, Sylvia Rodger, Jill Ashburner.
    British Journal of Learning Disabilities. June 15, 2013
    Accessible summary Listening to young people with autism spectrum disorder is important. Researchers can help support young people to have their say. Each young person is different. The supports used need to match their needs. Summary This study draws on the first author's doctoral research on the mainstream schooling experiences of young people with autism spectrum disorder (ASD) and their parents in Queensland, Australia. The aims are to share some of the practical strategies that were adapted and developed to engage the young people in the research and to critically reflect on what this means for future inclusive methodological approaches in this area. The key message is that diagnostic‐related assumptions about impairments can lead researchers to develop strategies which exclude or restrict rather than maximise participation of disabled people in research. To enable young people with ASD to provide rich and meaningful insights researchers need to acknowledge and plan creatively and flexibly for the interactive dynamic that is unique to each individual as well as for needs which might be shared.
    June 15, 2013   doi: 10.1111/bld.12037   open full text
  • Supported housing for people with Down's syndrome.
    Stuart Cumella, Sheila Heslam.
    British Journal of Learning Disabilities. June 14, 2013
    Accessible summary This is about people with Down's syndrome who live in supported housing. Their parents said that they liked the help given by support staff to people with a learning disability. They thought more help was needed with managing money and finding a job. People had to wait a long time before they could get a place in supported housing. Parents carried on giving help to their sons and daughters even after they had gone into supported housing. Parents helped most with things like managing money and dealing with problems. This means that people who live in supported housing who do not have parents find life more difficult. Summary There has been limited research on the attitudes of family carers and the part they play in helping people with a learning disability choose accommodation. A postal questionnaire was sent to family carers of people with Down's Syndrome, to identify their attitudes to supported living, their experience of the application process, and the support they provided to residents. It was found that main family carers of people with Down's Syndrome in supported living were generally satisfied with the housing and support provided, particularly with respect to activities of daily living. There was less satisfaction with the help received with managing finance and employment. There had been a mean of 2 years delay between application and securing accommodation. The large number of people providing care at home who wished their family‐member to move into supported living suggests that there is a large unmet need for this type of accommodation. Almost all family carers continued to provide support after participants moved into supported living, particularly with more complex tasks such as financial management, and with responding to crises and ill‐health. This indicates that people with a learning disability in supported living who do not have active contact with their family may be vulnerable financially and less likely than others to receive help at times of crisis. The proportion of residents in supported living who experience such problems will increase as family carers die or otherwise become too infirm to continue to provide support.
    June 14, 2013   doi: 10.1111/bld.12039   open full text
  • ‘Offering something back to society?’ Learning disability, ethnicity and sporting legacy: hosting the Special Olympics GB Summer Games in Leicester, 2009.
    John Williams, Neil Carter.
    British Journal of Learning Disabilities. May 30, 2013
    Accessible summary This article is about research on hosting major sporting events involving people with learning disabilities. It focuses on the Special Olympics Great Britain National Summer Games, which were held in Leicester in July 2009. The 2009 Summer Games raised significant legacy issues concerning ethnicity, both for the hosts (the city of Leicester) and the governing body, Special Olympics Great Britain. The event also provided important insights into wider attitudes towards people with learning disabilities held by the general public. Summary In 2009 the city of Leicester hosted the Special Olympics Great Britain National Summer Games. Around 2500 athletes with learning disabilities competed in 21 sports. This article argues that this sporting mega‐event had important potential legacy consequences for the hosts, the governing body – Special Olympics Great Britain (SOGB) – and also for wider attitudes towards people with learning disabilities. We are mainly concerned here with questions of ethnicity around Special Olympics Great Britain (SOGB) and the specific motivations for staging this event in the East Midlands. We argue that the hosts mobilised a set of quite unusual rhetorics and legacy aims in its appeal to local citizens, and that SOGB favoured Leicester because of the organisation's urgent need to modernise in terms of its urban reach, ethnicity and age profiles. We end by briefly assessing the evidence that SOGB achieved some of its goals and the extent to which the Leicester public embraced Special Olympics and athletes with learning disabilities.
    May 30, 2013   doi: 10.1111/bld.12031   open full text
  • Staff experiences of supported employment with the Sustainable Hub of Innovative Employment for people with Complex needs.
    Nick J. Gore, Rachel Forrester‐Jones, Rhea Young.
    British Journal of Learning Disabilities. May 07, 2013
    Accessible Summary Many people with learning disabilities want to work. The Sustainable Hub of Innovative Employment for people with Complex needs (SHIEC) project is about supporting people with complex needs to find work. This study interviewed staff members who are part of SHIEC. Staff said it can be difficult to help people with complex needs to find work and this often made them worried. Staff also said that when people with complex needs found work, it was very rewarding. Staff said being part of SHIEC helped them do this. Summary Whilst the value of supported employment for people with learning disabilities is well substantiated, the experiences of supporting individuals into work are less well documented. The Sustainable Hub of Innovative Employment for people with Complex needs aims to support people with learning disabilities and complex needs to find paid employment. Sixteen semi‐structured interviews administered to staff members of Sustainable Hub of Innovative Employment for people with Complex needs revealed seven core themes concerning their experiences of helping people with complex needs into work. This included the practical and emotional reality of facilitating supported employment and a reflection on those factors that influenced success. This article discusses how findings relate more broadly to work in this area, and the vital roles frontline staff play in making employment happen for people with learning disabilities.
    May 07, 2013   doi: 10.1111/bld.12033   open full text
  • Attitudes towards People with Disabilities – what do people with intellectual disabilities have to say?
    Sandra Corr McEvoy, Emer Keenan.
    British Journal of Learning Disabilities. May 07, 2013
    Accessible summary This research aimed to find out how people with intellectual disabilities are treated by the public, from the viewpoint of people with intellectual disabilities. A total of seven focus groups were used to collect stories from 41 adults with intellectual disabilities attending one agency in Dublin. The stories were about how they have been treated in everyday life. The findings show that some people have been treated very well, but many other people have not been treated well. Summary Attitudes towards people with intellectual disabilities have traditionally been very negative, resulting in people with intellectual disabilities being treated badly by other. This claim was explored by conducting focus groups with adults who have an intellectual disability to find out about their everyday experiences in different places and using different services. Participants reported being treated well by some people and in some places, but being treated less favourably by other people and in other places. Being treated well happened in their home, in college, in work and in their services. People were treated less well when they were out and about, using public transport, in school or work.
    May 07, 2013   doi: 10.1111/bld.12032   open full text
  • An exploratory investigation: are driving simulators appropriate to teach pre‐driving skills to young adults with intellectual disabilities?
    Johnell O. Brooks, Mary E. Mossey, James C. Collins, Peg Tyler.
    British Journal of Learning Disabilities. April 30, 2013
    Accessible summary There were many driving education studies with adults with intellectual disabilities (ID) in the 1960s and 1970s, but since, very little research has been carried out. This study explored using an interactive driving simulator for teaching adults with intellectual disabilities to learn pre‐driving skills (lane keeping and speed maintenance). The simulator succeeded in rapid identification of the drivers' capabilities and limitations, providing skill practise that would be unsafe on roadways, creating a fun, effective and flexible learning environment and highlighting the most appropriate areas for future research. Summary Research examining driver training for young adults with intellectual disabilities has been limited since the 1970s. The current pilot and exploratory study investigated teaching pre‐driving skills (i.e. lane keeping and speed maintenance) to young adults with intellectual disabilities using an interactive driving simulator to provide dynamic and immediate feedback to participants as well as quantifiable data to researchers and educators. Four students from a post‐secondary transition course for students with intellectual disabilities (age 21–23) with an average full‐scale IQ of 71.5 (range 64–76) participated. Participants practised their pre‐driving skills (lane keeping and speed maintenance rather than complex driving environments) on a series of driving courses as well as a coordinated muscle movement activity related to driving for 1 h a day, 5 days a week. After 27 days, two of the four participants significantly improved their lane keeping and speed maintenance skills, while two participants failed to demonstrate steady improvement.
    April 30, 2013   doi: 10.1111/bld.12029   open full text
  • Therapeutic relationships with individuals with learning disabilities: a qualitative study of the counselling psychologists' experience.
    Rachel Ann Jones.
    British Journal of Learning Disabilities. April 30, 2013
    Accessible summary This research looked at what it is like to have a relationship with someone with a learning disability when doing psychological therapy. It is important we know what it is like to have this relationship, so we can be good at doing therapy and get good outcomes for people. The results say that the relationship is complicated but very important, and we need to know more about it. Summary The therapeutic relationship, between client and therapist, is seen as a fundamental aspect in the outcome of therapy in the nonlearning disabled population. Literature suggests that the issues that are important in psychological therapy with the nonlearning disabled population should not lose significance with individuals with learning disabilities. Despite this, there exists a poor empirical and theoretical understanding of the complexities of the therapeutic relationship, when the individual has a learning disability. As a discipline, Counselling Psychology has a particular interest and skill base in understanding the therapeutic relationship and is therefore in a position to offer a valuable contribution to understanding the therapeutic relationship when an individual has a learning disability. Through eight semi‐structured interviews, counselling psychologists currently working with individuals with learning disabilities were asked to share their experiences and understanding of the nature and role of the therapeutic relationship. A qualitative methodology guided by interpretative phenomenological analysis (IPA) enabled detailed exploration of the counselling psychologists' perspective. Themes emerged identifying the therapeutic relationship as fundamental yet difficult due to variables such as the client's experience in relationships, the need for multiple relationships, the experience of needing to facilitate reassurance and the necessary skills for therapeutic approaches. Themes also emerged relating to therapist's motivations, values and needs when working with this client group and tensions concerning individualisation and the setting culture. The themes are discussed in relation to the existing literature and implications for theory and practice are explored.
    April 30, 2013   doi: 10.1111/bld.12028   open full text
  • Self‐directed support policy: challenges and possible solutions.
    Mary A. Harkes, Michael Brown, Dorothy Horsburgh.
    British Journal of Learning Disabilities. April 07, 2013
    Accessible summary Self‐Directed Support is the latest system of social care giving vulnerable people in the UK a budget instead of a service provided by local authorities. There is a lack of evidence to demonstrate how people with intellectual disabilities access information and make choices about Self‐Directed Support. Self‐Directed Support is not yet available to all individuals with an intellectual disability. There is a need for further education and training for professionals and support staff to ensure that people who have intellectual disabilities are assisted to make informed choices about care provision. Summary A systematic literature review was conducted between September 2010 and April 2011 and published earlier in this journal, paper 1. The findings indicated that few studies of Self‐Directed Support focused specifically on people with intellectual disabilities. The range of individuals' ability and distinction between adults with or without legal capacity have not been addressed. It is clear that Self‐Directed Support is not, as yet, a viable option for all individuals with an intellectual disability. However, some who have accessed it reported an improvement in their quality of life. For Self‐Directed Support to succeed for people with a wide range of intellectual disabilities, the level of awareness of its existence, and the potential barriers in relation to uptake, must be identified and addressed. This paper suggests possible strategies to maximise access to Self‐Directed Support and identifies areas in which further research is required.
    April 07, 2013   doi: 10.1111/bld.12024   open full text
  • Effectiveness of dysphagia training for adult learning disabilities support workers.
    Gerlind Tredinnick, Naomi Cocks.
    British Journal of Learning Disabilities. April 07, 2013
    Accessible summary It is important to notice problems with eating, drinking and swallowing in people with a learning disability. People who have problems with eating, drinking and swallowing need support from staff to help them stay healthy. This study shows that training gives staff a better understanding and more confidence when identifying problems and supporting a person with eating, drinking and swallowing difficulties. Summary This study investigated the effectiveness of a 1‐day dysphagia training package delivered to support workers who work with adults with a learning disability. Thirty‐eight support staff took part in this study. Twenty‐five support staff received training, and 13 did not receive training and therefore acted as a control group. Three questionnaires were completed by each participant: immediately before, immediately after and a month after the training delivery. Questionnaires measured both confidence and knowledge. Findings indicated that there was a significant increase in knowledge and confidence scores in the trained group. These increases were largely maintained over a 1‐month period. There was no significant change in confidence or knowledge scores in the untrained group.
    April 07, 2013   doi: 10.1111/bld.12018   open full text
  • A measure for feelings – using inclusive research to develop a tool for evaluating psychological therapy (Clinical Outcomes in Routine Evaluation – Learning Disability).
    Michelle Brooks, Stephanie Davies, Elspeth Twigg.
    British Journal of Learning Disabilities. April 07, 2013
    Accessible summary In this article, we shall be talking about how a group of people with learning disabilities and therapists came together to make a questionnaire about feelings. We adapted a questionnaire called Clinical Outcomes in Routine Evaluation – Outcome Measure to make a version that was useful for people with a learning disability who go to therapy for help when they are feeling particularly unhappy. We wanted to help people with a learning disability and their therapists find out if the therapy was helping. This is called practice‐based evidence. The NHS now demands that all treatments can show that they work. We were all new to research, and we will describe how we developed ways of working together that meant everyone could contribute. This is called inclusive research. This was necessary because we all had different experiences that were valuable to the research and that we wanted to share. In particular, we wanted to find out how the experience of living with a learning disability affects feelings so that this could be included in the questionnaire. Inclusive working was important to make sure the questionnaire made sense and was easy to use for people with a learning disability. We will discuss how we made the questionnaire, called Clinical Outcomes in Routine Evaluation – Learning Disabilities, and how we carried out tests to find out if it was a good, reliable measure that showed how people's feelings changed over time when they received therapy. This is called psychometric testing. Finally, we summarise the results of the psychometric testing and discuss what will happen next. Summary Psychological talking therapies are increasingly being sought by people when they are experiencing emotional difficulties. This is just as important for people with a learning disability as the general population but as with other services for this population, inclusion for therapy lags behind that of mainstream services. Similarly, tools for assessing the effectiveness of therapy for people with a learning disability are often limited and do not fully take account of the impact that living with a learning disability may have on peoples' feelings and sense of well‐being. It was for this reason that we, the authors of this article, a Dramatherapist and Specialist Counsellor got together with initially eight but subsequently five people with a learning disability to develop an outcome measure that would be accessible and have meaning for people with a learning disability. Clinical Outcomes in Routine Evaluation – Outcome Measure (Evans et al. J Ment Health, 2000; 32, 144; Barkham et al. 1998) was selected as the measure to be modified and developed, as it was already a validated tool, was in widespread use across the country and was suitable for use across a whole range of therapeutic approaches. This article describes how inclusive research has been a key component in developing and psychometrically testing Clinical Outcomes in Routine Evaluation – Learning Disabilities. Using an outcome measure that is sensitive to the needs of people with a learning disability is a vital step towards providing evidence upon which best practice may be established.
    April 07, 2013   doi: 10.1111/bld.12020   open full text
  • The impact of cognitive assessment on the identity of people with learning disabilities.
    Terence Davidson, Jan Burns, Hilary Smith.
    British Journal of Learning Disabilities. April 07, 2013
    Accessible summary People with learning disabilities often have cognitive assessments (IQ tests) carried out by psychologists. A cognitive assessment is a range of tests which help find out what people are good at and where they have difficulties. Five people who had been given a cognitive assessment by a psychologist were interviewed. They said it helped them to find out new things about themselves but they weren't sure why they had performed it. Psychologists could explain more to people about why they were doing a cognitive assessment and what would happen afterwards. Summary Researchers and clinicians have hypothesised that cognitive assessments have the power to influence the self‐identity of people with learning disabilities. This research aimed to explore the experience of a sample of people who had been given a cognitive assessment by a psychologist based in a team for people with learning disabilities. Five people who had undergone these assessments participated in semi‐structured interviews, and interpretative phenomenological analysis (IPA) was used to analyse the transcripts. The analysis identified that despite the participants not understanding the purpose of the assessment, they trusted the clinicians and felt they benefitted from the experience of doing the actual assessment. However, the term ‘learning disability’ was not used by the participants who also described experiencing little agency in the process, and being dependent on the actions of others for the assessment to bring about change.
    April 07, 2013   doi: 10.1111/bld.12027   open full text
  • Bringing ‘patient voice’ into psychological formulations of in‐patients with intellectual disabilities, autism spectrum disorder and severe challenging behaviours: report of a service improvement pilot.
    Gareth Rowe, Helen Nevin.
    British Journal of Learning Disabilities. April 07, 2013
    Accessible summary It is important to listen to patients' views when they are in hospital. Sometimes it is difficult for staff to understand what people with intellectual disabilities are saying. This project tried to include the views of all the patients on an autism services ward. Some people were easier to understand than others but we managed to listen to everybody. Summary This is a report of a service improvement pilot project undertaken at an inpatient autism service for adults with intellectual disabilities and severe challenging behaviours. Within the service, a key facet of the care pathway was the use of a biopsychosocial case formulation. Formulation meetings were led by psychology and involved a full multidisciplinary team and external representation. However, routine invitation of patients was not appropriate due to anxiety and complex communication difficulties. Therefore, the service was looking for alternative ways to incorporate the voices of patients into formulation. This report presents the case studies of four individual patients who were chosen because together they were indicative of the patient profile across the service. The study has demonstrated that it is possible to include patients' voices in their psychological formulation. For those with mild intellectual disabilities and mild autism spectrum disorder, this has been simple and extremely fruitful. For those with severe intellectual disability and severe autism spectrum disorder this has been more resource intensive and the results have been more tentative. Despite this, it has been demonstrated that it is possible to include the voices of all patients to some extent.
    April 07, 2013   doi: 10.1111/bld.12026   open full text
  • Reflections on change: supporting people with learning disabilities in residential services.
    Rebecca Salmon, Nan Holmes, Karen Dodd.
    British Journal of Learning Disabilities. February 04, 2013
    Accessible summary We looked at how staff think about the changes from working in a long‐stay hospital setting to working in a home for people with learning disabilities. In homes, staff said that they were more relaxed and could spend more time and offer more choices to residents than they could when they worked in hospital settings. With the changes, staff often had to make their own decisions about the care they provide and were worried about getting it right. Staff felt that their managers were looking more closely at what they were doing. Staff said that team meetings, supervision and training helped them to cope with the changes. Summary This study describes research that was designed to explore the reflections and perspectives of staff who had experienced the change from institutional care to person‐centred care and learn what factors had supported the change to, and continued adoption of, person‐centred care. In‐depth, semistructured interviews were conducted with seven participants working in residential homes for people with learning disabilities. The interviews were analysed using interpretative phenomenological analysis. Participants described positive changes, for example they were able to offer choice and spend time with residents. They perceived the work as less pressured and more relaxed. For some, this had the impact of encouraging them to work harder and freeing up their time to facilitate forming relationships with residents in the homes. Participants discussed an increased autonomy, responsibility and accountability in their work and a sense of being constantly monitored. There appeared to be reluctance amongst participants to own difficulties and anxieties associated with changes. Participants identified a number of strategies and issues that they felt had supported these changes. The research suggests some areas of consideration for implications regarding future practice in staff support and training within services for people with learning disabilities.
    February 04, 2013   doi: 10.1111/bld.12022   open full text
  • A Halifax case study that offers an alternative history of care provided by local authorities under the 1913 Mental Deficiency Act.
    Pamela Dale.
    British Journal of Learning Disabilities. January 13, 2013
    Accessible summary The history of care is still largely the history of institutions. We also need to understand the mix of services that were available. It is important to explore how different services shaped the experiences of people living with learning disabilities and their families. Summary Institutions, and their problems, have traditionally dominated learning disability histories. We know far more about what happened in areas where councils established and/or enthusiastically used local institutions than other places. Local authorities less committed to institutional care must have relied more on family and other carers. This may have signalled a more positive, even inclusive, approach to caring for people with learning disabilities. The Halifax case study provides some evidence to support this conclusion, but limited provision and reliance on distant facilities also permitted the neglect, and even abuse, of individuals in ways that resonate with recent scandals in the care sector. Note: for accuracy, this study uses the historically correct terminology with sincere apologies for any distress this may inadvertently cause.
    January 13, 2013   doi: 10.1111/bld.12021   open full text
  • Gaining employment: the experience of students at a further education college for individuals with learning disabilities.
    Joanne Skellern, Geoff Astbury.
    British Journal of Learning Disabilities. January 02, 2013
    Accessible summary People with learning disabilities can feel excluded from society; employment can help to improve social inclusion. Everyone needs to be creative in their approach to facilitate work‐based placements and employment opportunities for students at further education colleges. Students with learning disabilities, parents, education staff and employers need to work together to make sure everyone has the best work experience possible. Summary Employment is widely acknowledged as a key factor to social inclusion, but it is estimated that <7% of people with learning disabilities are in paid employment. It was the aim of the research study to critically examine the experience of gaining employment from the perspectives of students with learning disabilities, parents, education staff and employers. All participants were recruited from one collaborating UK organisation, a college offering further education for young people with learning disabilities. Twenty‐three interviews were conducted. Analysis of the data identified three themes surrounding the perceived roles of: Protector, Rescuer and Worker. Recommendations are discussed to improve collaborative working between student, parent, education staff and employer to overcome some of the difficulties influencing employment rates and contribute to the empowerment and inclusion of people with learning disabilities in society.
    January 02, 2013   doi: 10.1111/bld.12012   open full text
  • Self Directed Support and people with learning disabilities: a review of the published research evidence.
    Mary Anne Harkes, Michael Brown, Dorothy Horsburgh.
    British Journal of Learning Disabilities. January 02, 2013
    Accessible summary Self Directed Support is the latest system of social care providing vulnerable people in the United Kingdom with a budget instead of direct service provision. There is a lack of evidence underpinning the strategy of Self Directed Support. There is a need to learn more about how well the policies are working. Barriers need to be identified and overcome to ensure that people who are eligible can access Self Directed Support. Summary A systematic literature review was undertaken to determine the evidence base underpinning the strategy of Self Directed Support and whether evidence demonstrates that this policy is accessible to everyone with a learning disability. It also sought to identify whether there were any barriers to Self Directed Support for people with severe or profound learning disabilities and, if so, how these barriers could be overcome. Four mixed‐method research papers, two quantitative studies, seven qualitative studies and four literature reviews were identified. The findings indicated that very few studies pertain specifically to people with learning disabilities, and little account has been taken of their range of ability or the distinction between adults with legal capacity and those without. It is evident from the literature that Self Directed Support is not, as yet, attainable for everyone with a learning disability but those able to access it have reported an improvement in their quality of life. There is a need for further research to determine the extent of awareness and understanding of the policy of Self Directed Support, and the implications it will have on the future care of people with a wide range of learning disabilities.
    January 02, 2013   doi: 10.1111/bld.12011   open full text
  • Doing research inclusively: bridges to multiple possibilities in inclusive research.
    Melanie Nind, Hilra Vinha.
    British Journal of Learning Disabilities. January 02, 2013
    Accessible summary This article is about the ways people do research together. We talked with people doing inclusive research about their views and experiences. We found out about different ways people work together and how power is important. People talked about how inclusive research can change people's lives. We discuss why we think research can be performed inclusively in a variety of ways and why keeping this variety is important. Summary This article reports on a study of how people do research that matters to people with learning disabilities and that involves them and their views and experiences. The study was an attempt to bring together people doing inclusive research so that, collectively, we could take stock of our practices. This would add to the individual reports and reflections on approaches that are already available. In particular, we wanted to explore what quality means in inclusive research and how we might best achieve this. We used focus groups to share and generate knowledge, and we recorded, transcribed and analysed the dialogue, looking for themes and answers to core questions. We found that there are many different ways of doing research inclusively, and we propose a model to describe this. Reflecting on the findings, we argue that it is important to keep a flexible vision of inclusive research and to keep learning and talking together.
    January 02, 2013   doi: 10.1111/bld.12013   open full text
  • Addressing health inequities: coronary heart disease training within learning disabilities services.
    Deirdre Holly, John Sharp.
    British Journal of Learning Disabilities. January 02, 2013
    Accessible summary People with a learning disability have a special risk of developing certain problems with their health. Heart disease can also happen to people with a learning disability. We do not know how we should help people with a learning disability stay healthy and not develop heart disease. We trained staff using a programme designed to improve what they know about heart disease. This programme also helps staff learn ways to help people improve their health. After training, staff knew a lot more about heart disease and felt more confident about being able to improve the health of people with a learning disability. Summary People with learning disabilities are at increased risk of coronary heart disease (CHD). Research suggests this may be due to inequalities in health status and inequities in the way health services respond to need. Little is known about the most effective way to improve health outcomes for people with learning disabilities. A previously developed CHD educational resource was piloted within residential community support organisations working closely with adults with complex learning disabilities. Following the training, improvements in knowledge of CHD‐related topics were noted. Improvements were also seen in skills and confidence relating to working with others. Participant satisfaction with the training was demonstrated in terms of the acceptability and effectiveness of the training. Systematic training of this nature could lead to increased awareness of and attention to the cardiac health requirements of individuals, thereby improving the health outcomes, health literacy and ultimately self‐management of people with learning disabilities.
    January 02, 2013   doi: 10.1111/bld.12014   open full text
  • Anna's story of life in prison.
    Anna Boodle, Kathy Ellem, Lesley Chenoweth.
    British Journal of Learning Disabilities. January 02, 2013
    Accessible summary This is the story of Anna Boodle. Anna told her story to Kathy Ellem about her time in prisons in Queensland, Australia. Anna has an intellectual disability. Living in prison was very hard for her. Anna has survived prison and now has a good life in the community. Anna wants to tell other people they can survive prison and have a good life. Summary People with an intellectual disability in prison can be at increased risk of victimisation, segregation and isolation (Mullen ). Prison systems usually have very few resources to cater to this group's particular needs, and many people may re‐enter the community with little or no rehabilitation, poor social connections, poor mental health and little chance in finding employment and living a crime‐free life (Baldry et al. ). Gathering the lived expertise of ex‐prisoners with an intellectual disability can help others to better understand these experiences. This article is about Anna Boodle's story of imprisonment in Queensland, Australia. Anna participated in a larger PhD study on the life stories of ex‐prisoners with an intellectual disability. It is apparent from her story, and the other stories in the study, that there is a need for more humane responses to people with an intellectual disability who offend. Anna's story is a tale of hope to others that a good life is possible after imprisonment.
    January 02, 2013   doi: 10.1111/bld.12015   open full text
  • ‘Normal people can have a child but disability can't’: the experiences of mothers with mild learning disabilities who have had their children removed.
    Sheila Gould, Karen Dodd.
    British Journal of Learning Disabilities. January 02, 2013
    Accessible summary People with learning disabilities might have their children taken from their care. If they do, what then happens to the parents? I talked to nine mums who had their children taken away from their care. They told me about what this was like and how they felt. This research gives advice to people (particularly professional people) about how to work better with mums who have had their children removed. It also shows that sometimes it is difficult for people with learning disabilities to know their rights and say what they think. Abstract There is a recognised risk of parents with learning disabilities having their children removed. Little research has investigated the impact of this on these parents. This article looks at the perceptions of nine mothers with mild learning disabilities and their experiences having had their children removed. Interview data were analysed using Interpretative Phenomenological Analysis (IPA). Findings reveal the struggles mothers with learning disabilities faced being ‘suitable mother’ – including presumed incompetence and scrutiny of parenting. Participants' responses to having had their children removed are looked at and support reviewed. Finally issues of power were highlighted throughout Participants' accounts and the impact of this is discussed. Clinical implications indicate areas for service improvement.
    January 02, 2013   doi: 10.1111/bld.12006   open full text
  • The importance of being earnest: our experience of involving service users with complex needs in staff recruitment.
    Barbara Hurtado, Steven Timmins, Cheryl Seward.
    British Journal of Learning Disabilities. November 05, 2012
    Accessible summary People with learning disabilities should be able to choose the staff who work with them. It is important that staff are chosen fairly and in a way that abides by the law. This article explains how we supported the people who use our services to help us employ an assistant psychologist. We found that: People with learning disabilities and other problems, like poor mental health, can also take part in choosing staff. It is important to change how we do things so that it is easier for people with learning disabilities to take part. Together we learnt that it is important to give people with learning disabilities time, so that they can do things at their own pace. The staff and people with learning disabilities who participated in the interviews truly appreciated the experience. Summary This article describes our experience of involving people with learning disabilities and additional needs, such as behaviour that can be challenging or mental health conditions, in the recruitment of staff. A significant amount of support, as well as additional time and adaptations to the interviewing and scrutinising processes were necessary in order to ensure that service users could contribute meaningfully. However, the process was not only really valuable for users and staff alike but also, in our view, efficient in choosing a robust applicant.
    November 05, 2012   doi: 10.1111/bld.12007   open full text
  • Establishing a body awareness group for adults with learning disabilities.
    Stefanie Rubbert, Radha Bisnauth, Liz Offen.
    British Journal of Learning Disabilities. November 05, 2012
    Accessible Summary We held a group for people with Learning Disabilities who were overweight and unhappy about being so. The group ran for 9 weeks. It lasted 2 h and four adults came to the group. The group talked about how they felt about their bodies, why they ate and why it is sometimes hard to choose healthy food over unhealthy food. It helped people learn to accept their body size and shape. Summary The Clinical Psychology Service and the Dietetic and Nutrition Service for People with Learning Disabilities in Birmingham shared concerns about the effectiveness of services offered to service users who were overweight. In an effort to gain more understanding of the issues from a service user perspective and to ultimately provide more effective services, a body awareness group was established, structured according to the ‘Health at Every Size’ model. Four adults with learning disabilities attended a total of nine sessions held once a week for a period of 2 h. Topics were presented to the group in the form of group discussions or group activities, which included: personal and social attributions towards body shape and size; self‐esteem; physical eating vs. emotional eating; relationship with food (e.g. understanding of choosing junk food over healthier options); negative messages people tell themselves about eating and factors that prevent people from engaging in a healthier lifestyle. This study aims to report the process of designing and facilitating the ‘Body Awareness Group’ and to critically review observations and findings in an effort to gain greater understanding of the role of food in this context.
    November 05, 2012   doi: 10.1111/bld.12008   open full text
  • A qualitative exploration of the identities of parents with a learning disability.
    Laura Shewan, Karen McKenzie, Ethel Quayle, Rowan Crawley.
    British Journal of Learning Disabilities. November 05, 2012
    Accessible summary The number of parents with a learning disability in the United Kingdom (UK) is growing. Parents with a learning disability do have some difficulties. Parents with a learning disability see that their learning disability is separate to being a mum or dad. Becoming a parent is important to people with a learning disability. Summary There are an increasing number of parents with a learning disability in the UK. Existing research in the area suggests that this group of parents face a number of issues including social isolation and over‐representation in child protection systems. This study explored what parents understood about their learning disability and how they perceived this to impact on them in their parenting role. This exploratory study adopted a qualitative approach, involving semi‐structured interviews with eight parents (three mothers, five fathers). The study suggested that as a result of having a learning disability parents experience some difficulties, however, these tend to be related to specific tasks only. In their parenting role, three separate identities were conveyed: as a person with a learning disability; as a mother or father, and as an individual (outside of their identity with learning disability or parenthood). The findings presented here are drawn from a larger qualitative study.
    November 05, 2012   doi: 10.1111/bld.12005   open full text
  • Career counselling at school for placement in sheltered workshops?
    Helga Fasching.
    British Journal of Learning Disabilities. November 05, 2012
    Accessible summary This study is about transition from school to work in Austria. In Austria, students with intellectual disabilities leave school earlier than other students. Many students with intellectual disabilities join sheltered workshops. This means that students with intellectual disabilities in Austria do not have the same choices as other people. This leads to disadvantages in the lives of the students with intellectual disabilities. Learning helps people to take decisions independently. The right to learn is very important, also for people with disabilities. Summary This article explores how career counselling at school contributes to supporting inclusive transition processes from school to regular vocational training and occupation for school‐leavers with an intellectual disability. In a first step, a quantitative parent survey analyses how the type of school influences the recommendations of career counselling at school. Subsequently, the quantitative results are subjected to a more profound analysis by means of a qualitative teacher survey. The results show that career counselling at school functions as a ‘gatekeeper’ during the transition process from school to working life. In this context, the recommendations of career counselling at school are closely linked to the type of school attended. The majority of special school students are recommended occupational therapy, while the majority of students with special educational needs in general schools are recommended qualifying measures/vocational training. These results suggest that the recommendation of occupational therapy by career counsellors at school is closely linked to a negative attitude of teachers towards the cognitive abilities of students with intellectual disabilities. Segregated structures in the system also add to negative attitudes.
    November 05, 2012   doi: 10.1111/bld.12009   open full text
  • Intimate violence in a specialist college setting: can students with learning difficulties manage themselves?
    Larry L. Lee, Alexander Carson.
    British Journal of Learning Disabilities. November 05, 2012
    Accessible summary Traditional practice, with regard to intimate violence at a specialist college, involves professionals normalising, disciplining and managing students compliance to established norms; however, findings from a 5‐year study indicate students with learning difficulties could manage themselves responsibly if professionals help them increase levels of differentiation from Binary Branding Normality Normalcy, Putative Social Identity and Multi‐dimensional Social Network influences. Abstract Concerned about practice that attempts to manage acts of intimate violence perpetrated by students with learning difficulties in a specialist college setting; I questioned the extent to which they could manage themselves. Following a methodological review of literature, I used critical conversations with focus groups participants and case study interviewees to consider the sense they make of intimate violence and students managing themselves responsibly in learning environments. Thematic analysis yielded five themes relating to different versions of students acting responsibly and/or irresponsibly: I've got a problem, I told staff, I can't, I'm disabled and I'm not normal. Discursive analysis highlighted five variable acts of resistance: Conditioned‐Response, Role Specific, Inner‐Conflicted, Retreating and Higher Order. These correlate with student's levels of differentiation from Binary Branding Normality Normalcy, Putative Social Identity and Multi‐dimensional Social Network influences. In response to their subordinate position in learning environments, some students, via Variable Processes of Learning Disability Culture, use Defensive Disability Language, Defensive Positional Stances and Power Plays to assert their power over professionals; nevertheless, when invited to engage nondefensively, some students could, as evidenced by focus groups discussions and a case study example, manage themselves responsibly.
    November 05, 2012   doi: 10.1111/bld.12004   open full text
  • Never mind what I like, it's who I am that matters: an investigation into social pedagogy as a method to enhance the involvement of young people with learning disabilities.
    Sid Carter, Fergus Cameron, Jenny Houghton, Michelle Walton.
    British Journal of Learning Disabilities. September 10, 2012
    Accessible summary Children and young people with learning disabilities should be involved in decisions that affect them, including having a say in how their services are run. In practice, it is difficult to achieve involvement, as service providers can treat young people with disabilities and their families as ‘shoppers’ rather than really listening to them. It can also be hard to find out exactly how individuals feel, because of their difficulties with language and complicated information. Social pedagogy is an approach to working with children who sees them as equals. The study used these ideas to run a group to involve young people with learning disabilities who used short break services. The research found that social pedagogy was a good way to improve involvement, as it helped to build trusting and equal relationships between young people with learning disabilities and the adults who worked with them. Summary The involvement of children and young people with learning disabilities in the decision‐making of the services they use is recognised as an essential principle. However, implementation of this principle has encountered two main obstacles. One obstacle is that meaningful involvement has largely been subsumed by a provider‐driven consumerist agenda. A second obstacle is the lack of methods to gain feedback that take account of an individual's cognitive and linguistic impairments. This article reports on the use of the social pedagogy approach to attempt to overcome these obstacles. The findings show that social pedagogy, which emphasises a balance between ‘head, heart and hands’, provided a means to establish egalitarian relationships with young people with learning disabilities. Thus, social pedagogy was found to be effective in enhancing involvement in the context of a person‐centred approach.
    September 10, 2012   doi: 10.1111/bld.12002   open full text
  • Creating a person‐centred culture within the North East Autism Society: preliminary findings.
    Deborah Michelle James, Alex Hall, John Phillipson, Geraldine McCrossan, Claire Falck.
    British Journal of Learning Disabilities. September 10, 2012
    Accessible Summary Staff who care for people with autism were shown video of themselves at work. Only good bits of video were shown to staff. Good bits were chosen because the video showed that the staff and the people with autism were enjoying being with each other. We asked four members of staff how watching the good bits of video made them think and feel. In this paper, we report what the staff said. We grouped their ideas into sets. In this paper, we report exactly what the staff said. We found that all staff felt more confident after watching the videos. They could see more ways that the people with autism were communicating with them. They could imagine being better at making relationships with people with autism. We think that finding positive moments of enjoyment using video is a good way to make things work better for staff and for the people with autism. Summary This paper provides preliminary findings of the impact of a workforce coaching intervention that used video feedback in a service for children and adults with autism. The proposed mechanism for change in the intervention was the way that video footage was highlighted through editing on the part of the practitioner and the positive coaching conversation that was used to review the video edits. Four participants who had received the intervention were interviewed after the intervention. Thematic analysis of the participants' responses during the narrative style interview was conducted. The results suggest that the participants found the intervention a positive experience that raised their confidence in their work role. They reported heightened awareness of the individual needs of the people they worked with and a new appreciation of the potential for relationship between themselves and the services' users.
    September 10, 2012   doi: 10.1111/j.1468-3156.2012.00757.x   open full text
  • Reluctant ‘Jailors’ speak out: parents of adults with Down syndrome living in the parental home on how they negotiate the tension between empowering and protecting their intellectually disabled sons and daughters.
    Simon Foley.
    British Journal of Learning Disabilities. September 10, 2012
    Accessible summary This study looks at the issue of the social lives of adults with Down syndrome who are living at home with their parents. Sometimes, for the very best of reasons, the parents of adults with Down syndrome try to prevent their adult son or daughter with Down syndrome from going out on their own, from having a boyfriend or a girlfriend etc. In this study, I talk to a group of parents about how they feel when they think about the kind of social life their sons and daughters with Down syndrome have. For example, I ask them are they happy with the amount of friends that their son or daughter has, whether their son or daughter has a boyfriend or girlfriend, whether they would like to see their son or daughter get married etc. Because of the role played by parents in the social lives of their intellectually disabled adult son or daughter, it is very important for everybody concerned with the quality of life enjoyed by adults with an intellectual disability to understand why their parents think and act the way they do. Summary While the language of empowerment and human rights have taken centre stage in both the disability literature and disability service provision for adults with intellectual disabilities. One area where there exists a disconnect between theory and practice, in the Republic of Ireland at any rate, lies in the parental home and the role played by parents of adults with intellectual disabilities (this study focuses specifically on adults with Down syndrome) in acting as gatekeepers of their son or daughters social life. For the best of paternalistic reasons, many parents of adults with Down syndrome severely restrict the life choices of their adult sons or daughters. This is particularly the case when it comes to the regulation of their son or daughters sexuality, a possible effect of which may be to effectively deprive their intellectually disabled son or daughter of the opportunity of ever entering into an intimate sexual relationship with another human being. So are parents of adults with Down syndrome actually playing the role of ‘reluctant jailors’? If yes, how do they navigate the enormously tricky terrain that characterises the Scylla and Charybdis like tension between trying to empower their adult son or daughter with Down syndrome while at the same time doing all they can to insure they come to no harm? This study interviews ten parents on the earlier issues, to gain a greater phenomenological understanding on the predicament that many parents of adults with Down syndrome believe themselves to be in.
    September 10, 2012   doi: 10.1111/j.1468-3156.2012.00758.x   open full text
  • The experiences of people with learning disabilities on social networking sites.
    Katrina M. Holmes, Nessa O'Loughlin.
    British Journal of Learning Disabilities. September 07, 2012
    Accessible summary Lots of people use the Internet to make friends and talk to friends. We behave in certain ways because of how people talk to us and treat us. Some people use Facebook on the Internet to stay in touch with their friends and make new friends. This can be a very good experience. Some other people have had problems when using social networking sites like Facebook. Some people have been bullied online and some have had money taken off them. We spoke to three people who have had good and bad things happen on Facebook. We have suggested some ideas on how to help people with these problems. Summary Social identity has traditionally been established through face‐to‐face interactions. However, in recent times, social networking sites have provided an additional medium through which social identities can be developed and explored. Social networking has become increasingly popular over the past decade, attracting millions of active users worldwide. These sites offer an opportunity to maintain friendships, create new friendships and even date. The following article highlights the positive and negative experiences of three people with learning disabilities using social networking sites. The negative experiences reported by our service users highlighted areas of concern with regard to their safety. As a result, a therapeutic group was formed to address these online experiences and provide practical and emotional support. At the end of the group, service users reported that they were more confident about discussing and problem solving issues around online use.
    September 07, 2012   doi: 10.1111/bld.12001   open full text
  • Becoming a researcher.
    Samantha Flood, Davey Bennett, Melissa Melsome, Ruth Northway.
    British Journal of Learning Disabilities. August 21, 2012
    Accessible summary This paper is about three people with learning disabilities. They work as co‐researchers. They have written this paper with support. Support is important to them. It has helped them to do the research. They each have a personal assistant. Other people working on the project also help them. They have had training and practised what they needed to do before asking other people questions. They have learnt a lot of new skills and have made a lot of decisions about the project. They enjoy their work and hope that other people will learn from their stories. They hope that other people with learning disabilities will want to do research. Summary People with learning disabilities are increasingly taking on the role of researcher within participatory research projects. This paper talks about what it means to be a researcher using the words, views and experiences of three people with learning disabilities who are currently working as co‐researchers. It talks about what they have found helpful, and what they have found challenging. It compares their experiences to those of other people and highlights the importance of support. Overall they report that it has been a positive experience which has helped them to learn a great deal and they provide advice that they hope will help others thinking about taking on such a role.
    August 21, 2012   doi: 10.1111/j.1468-3156.2012.00756.x   open full text
  • A rights approach to supporting the sexual fetish of a man with learning disability: method, process and applied learning.
    Paul Cambridge.
    British Journal of Learning Disabilities. July 02, 2012
    Accessible summary Some men with learning disabilities have a sexual fetish which may present a support challenge for staff or carers.Sexual fetish in people with learning disabilities is often ignored, seen as pathological or associated with risk.It is possible to support sexual fetish in person‐centred ways which respect individual rights and informed choice. SummaryThis paper reports on a psycho‐educational intervention associated with the sexual fetish of a man with mild learning disability and autism which centred on his use of nappies and baby paraphernalia. It outlines the nature and expression of his sexual fetish and the risks perceived to be associated with it and describes the approach developed to support him, including the aims which underpinned the work and the methods and processes employed. It was found that a person‐centred psycho‐educational approach from a rights based perspective achieved important changes in his life and self‐esteem and helped challenge assumptions about his sexual risk. The paper also reflects on the organisational location of this work and identifies the applied learning for supporting the sexual fetish of people with learning disabilities, of value for informing sex education and sexuality support for people with learning disabilities more widely.
    July 02, 2012   doi: 10.1111/j.1468-3156.2012.00750.x   open full text
  • Consent and sex in vulnerable adults: a review of case law.
    Martin Curtice, Jonathan Mayo, Juli Crocombe.
    British Journal of Learning Disabilities. June 27, 2012
    Accessible summaryPeople with learning disabilities may not know about sexual relationships.People with learning disabilities may need education about sexual relationships.People with learning disabilities may need education about contraception.SummaryThe introduction of the Mental Capacity Act 2005 has brought to the fore issues regarding capacity in various clinical settings. One important area where capacity assessment is often vital is regarding vulnerable people being able to consent to sexual relations. Case law from courts has evolved with regard to this sometimes complex and emotive issue both before and after the implementation of the Mental Capacity Act 2005. This article describes and analyses the evolution of such case law which predominantly involves people with learning disabilities. In doing so, it explains key principles and tests both for consenting to sexual relations and for the use of contraception which can be applied and used in clinical practice. The article also discusses the associated human rights issues for vulnerable adults in trying to balance the right to sexual relations as part of an individual's private life whilst managing potential abuse issues.
    June 27, 2012   doi: 10.1111/j.1468-3156.2012.00753.x   open full text
  • Planning, facilitating and evaluating a bereavement group for adults with learning disabilities living in the community.
    Clare Borsay, Mary Halsey, Amy Critoph.
    British Journal of Learning Disabilities. June 26, 2012
    Accessible Summary Adults with learning disabilities sometimes find it hard to cope when someone they care about dies. This report talks about an 8‐week group that was run to help four adults with learning disabilities cope with their bereavements. We asked group members to fill in questionnaires and talked to them about what they liked and did not like about the group. Everyone found it helpful to share their experiences and learn new ways of coping with their bereavements.SummaryThis study evaluates the usefulness of a bereavement group for four adults with learning disabilities. Drawing on the work of Boyden et al. (2009), the current authors planned and facilitated an 8‐week group, held in the local community. Qualitative and quantitative feedback was collected from participants, which indicated that they valued the group as a safe and useful space to talk about their bereavements and to learn skills to manage difficult emotions. This study reports and reflects on the process of establishing the group, developing the session plans, delivering the intervention and collecting feedback.
    June 26, 2012   doi: 10.1111/j.1468-3156.2012.00751.x   open full text
  • Audit of group‐based activities in an inpatient assessment and treatment unit for individuals with learning disabilities.
    Philip Reynolds, Lauren Field.
    British Journal of Learning Disabilities. June 26, 2012
    Accessible summaryA series of stand‐alone groups were offered on an assessment and treatment ward for adults with learning disabilities.The group ran for 9 weeks and involved session themes of relaxation, sensory and physical activities.All individuals involved reported to have found the sessions useful and enjoyable.All staff involved reported that the sessions were helpful for the participants.The sessions helped individuals to improve their mood following the session.The sessions provided a practical way of introducing therapeutic activity to the ward and developing therapeutic relationships.SummaryThis audit is intended to investigate the effectiveness of a series of stand‐alone groups delivered on an inpatient unit for individuals with learning disabilities. Our ward is a specialist assessment and treatment unit that provides brief admissions for clients with a learning disability, mental health difficulties and/or challenging behaviour. The aim of the unit is to develop an understanding of the presenting difficulties, formulate an appropriate intervention plan and implement this with the aim of successfully discharging the client back into the community following the shortest possible admission. Group interventions facilitated on the unit were drawn from a variety of evidence and best practice guidelines relating to specific interventions for individuals with a learning disability (Adv Psychiatr Treat, 11, 2005, 355) and more general interventions within inpatient settings (Clin Psychol Forum, 2009, 200). Nine sessions focused on a variety of relaxation, sensory and physical activity tasks. The objective of the audit is to investigate to what extent these interventions are perceived as helpful and enjoyable by clients and by staff, to investigate any positive effect on client's mood and to determine whether any particular activities were rated more favourably than others. Additional aims of the audit are to further understand some of the practical issues related to delivering group‐based interventions in an inpatient environment, to engage ward staff in the delivery of therapeutic activity and to investigate the use of groups as an effective way of developing therapeutic relationships.
    June 26, 2012   doi: 10.1111/j.1468-3156.2012.00752.x   open full text