British Journal of Learning Disabilities最新文献

{"title":"Evaluation of a co-designed Health Check-in for adults with intellectual and developmental disabilities and family caregivers to support pandemic recovery","authors":"Yona Lunsky,&nbsp;Tiziana Volpe,&nbsp;Laura St. John,&nbsp;Anupam Thakur,&nbsp;Johanna Lake,&nbsp;the H-CARDD COVID Program Team","doi":"10.1111/bld.12593","DOIUrl":"10.1111/bld.12593","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The COVID-19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A co-designed tool, the COVID Check-in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check-in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Forty-four percent of participants engaged in the Health Check-in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check-in, along with challenges using the COVID Check-in Tool, according to both the adults with disabilities who were interviewed and the family caregivers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"512-523"},"PeriodicalIF":1.2,"publicationDate":"2024-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12593","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140070100","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Co-producing ethics guidelines together with people with learning disabilities","authors":"Mary Bottomley,&nbsp;Jodie Bradley,&nbsp;Lisa Clark,&nbsp;Bryan Collis,&nbsp;Bojana Daw Srdanovic,&nbsp;Victoria Farnsworth,&nbsp;Annie Ferguson,&nbsp;Dan Goodley,&nbsp;Andrew Fox,&nbsp;Nikita K. Hayden,&nbsp;Charlotte Lawthom,&nbsp;Rebecca Lawthom,&nbsp;Claudia Magwood,&nbsp;Robert McLean,&nbsp;Ian Middleton,&nbsp;Alison Owen,&nbsp;Matty Prothero,&nbsp;Simon Rice,&nbsp;Simon Richards,&nbsp;Katherine Runswick-Cole,&nbsp;Kelly Scargill,&nbsp;Rohit Shankar,&nbsp;Toni Ann Wood","doi":"10.1111/bld.12590","DOIUrl":"10.1111/bld.12590","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>We are a research team of clinical, academic and advocacy-based researchers with and without learning disabilities, working on the <i>Humanising Healthcare</i> (for people with learning disabilities) project. The project is dedicated to finding and sharing healthcare practices that enhance the lives of people with learning disabilities. As part of our ethics applications to access National Health Service study sites for fieldwork, we worked together to write guiding principles for co-producing research ethics with researchers with learning disabilities. In this paper, we introduce these Participatory Ethics Good Practice Guidelines and reflect on our collaboration.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We reflect on developing the Participatory Ethics Good Practice Guidelines. These guidelines were developed during online co-production meetings with our full research team, including advocacy-based organisation researchers, clinical researchers and university researchers. We considered consent, understanding research, and understanding research methods during the development of these Guidelines.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>We present ten guidelines for co-producing research with people with learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our findings may be helpful to researchers with learning disabilities, university and clinical researchers, funders, and those who work in research governance (e.g., ethics committees and university research departments).</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"611-632"},"PeriodicalIF":1.2,"publicationDate":"2024-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12590","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140069938","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Homeless youth with intellectual disabilities: Precarious lives and health inequalities","authors":"Ann Fudge Schormans,&nbsp;Stephanie Baker Collins,&nbsp;Heather Allan,&nbsp;D. O'Neil Allen,&nbsp;Nathan Gray","doi":"10.1111/bld.12588","DOIUrl":"10.1111/bld.12588","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Youth with intellectual disabilities experiencing homelessness are invisible within multiple service sectors. We know little about their experiences of homelessness, or the impacts of such on the social and physical health and well-being.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We used quantitative and qualitative methods to measure prevalence and learn from key informants and homeless youth with intellectual disabilities about factors leading to and sustaining homelessness, and the implications of such on their social, physical, and mental health and well-being. The project involved seven co-researchers with intellectual disabilities and experience of youth homelessness in research design, data collection, analysis, and dissemination. We created Forum Theatre scenes that creatively represent the findings of the project. In this paper we share one of those scenes, as well as the recommendations three co-researchers with intellectual disabilities have for improving support to homeless youth with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Lack of awareness of and about homeless youth with intellectual disabilities, combined with siloed ways of working by involved sectors, results in significant disadvantage and health inequities for youth. Also revealed was the likelihood this would continue given existing obstacles to accessing appropriate housing and supports to exit homelessness.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Services providers, policy makers and representatives of the involved sectors need to recognize and acknowledge homeless youth with intellectual disabilities and take responsibility for learning and working together to develop integrated and responsive approaches to effectively supporting them.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"477-488"},"PeriodicalIF":1.2,"publicationDate":"2024-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12588","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140055748","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Mapping stakeholders to maximise the impact of research on health inequalities for people with learning disabilities: The development of a framework for the Making Positive Moves study","authors":"Francesca Beeken,&nbsp;Dafni Katsampa,&nbsp;Moureen Duxbury,&nbsp;Helen-Ellis Caird,&nbsp;Annabel Head,&nbsp;Sam Prowse,&nbsp;David Wellsted,&nbsp;Pashtana Zormati,&nbsp;Silvana E. Mengoni,&nbsp;Louisa Rhodes","doi":"10.1111/bld.12591","DOIUrl":"10.1111/bld.12591","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;People with learning disabilities experience health and social inequalities, and research that could improve health services may not be implemented in real-life settings. Building stakeholder networks that can share and implement research findings may address this. This paper presents a framework for building a stakeholder network that maximises the likelihood of research recommendations being implemented in practice. This was developed as part of the ‘Making Positive Moves’ (MPM) study, which explores the experiences of people with learning disabilities following discharge from a residential stay within a hospital inpatient setting.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;We reviewed the literature on existing theoretical frameworks to support the development of a model for dissemination of the MPM findings. Stakeholder categories were identified through consultation with the MPM researchers, experts by experience and the steering group and a hub and spoke model to represent all stakeholder categories was created. These categories include person moving; family of the person moving; specialist schools; social care; care providers; regulators; third sector organisations; policy organisations; academic community; and NHS professionals. After establishing the categories, we consulted with people with learning disabilities and other stakeholders and conducted online searches to create a stakeholder database. Through information gathering and direct contact with stakeholders, we assessed levels of interest, power and engagement to determine which stakeholders to prioritise in our dissemination activities. The Stakeholder Wheel was created to present the data captured within the database and engagement profiles in an illustrative way.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Findings&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;We use two stakeholder sub-categories, user-led organisations and care providers, to demonstrate the methodological approach. The examples illustrate how a scoring system helped us to identify high-priority stakeholders who we then contacted to collaborate within developing our dissemination strategy to maximise the impact of the MPM research findings.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;We developed a framework to map stakeholders for the MPM study and enable targeted dissemination to increase the impact of the research. This approach has the potential to reduce health inequalities among people with learning disabilities by increasing the awareness of and ability to implement evidence-based recommendations in real-lif","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"443-455"},"PeriodicalIF":1.2,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12591","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140055750","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Rehabilitation for adults with an intellectual disability and mental health and behavioural complexities: A scoping review","authors":"Jonathan Williams,&nbsp;Saman Shahzad,&nbsp;Mizla Manandhar-Richardson,&nbsp;Sujeet Jaydeokar,&nbsp;Vicky Bramwell,&nbsp;Adam Garland,&nbsp;Christine Hutchinson,&nbsp;Mahesh Odiyoor","doi":"10.1111/bld.12581","DOIUrl":"10.1111/bld.12581","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;There has been significant focus in the past decade on reducing admissions to assessment and treatment units for people with intellectual disabilities experiencing mental health or behavioural concerns. This has included the development of intensive support functions of National Health Service Learning Disability services to bolster community support and treatment for people at risk of admission. However, in recent years, there has been increased consideration of service development to include rehabilitation functions which would aim to proactively provide medium-term additional input to individuals with a complexity of need. This input would aim to improve future trajectories and support the individuals to remain living a good life in their own community. This review focuses on community and in-patient approaches to meeting a complexity of need.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Method&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;A scoping review was carried out according to established best practice guidelines. Papers returned from the search were screened by the following inclusion criteria (a) Models or Outcomes of Rehabilitation; (b) Intellectual Disability Population; (c) Sample being 18 or above and (d) longer than short-term stay/treatment, defined as 6 months or longer; and (e) Mental health and/or behaviour complexities. The search was conducted in electronic databases CINAHL, PsycInfo, Medline, Embase and Social Policy &amp; Practice. Here, 3790 articles were initially identified and 27 were ultimately included in the review.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Findings&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;There are few studies evaluating rehabilitation for people with intellectual disabilities and mental health or behavioural concerns. There was some evidence that accessing assessment and treatment inpatient provision resulted in clinical improvements. Some studies demonstrated initial evidence that longer term rehabilitation was beneficial as a step-down from inpatient care. Some key principles were identified in terms of rehabilitation approaches: the need for person-centred creative approaches, suitable staff training, focus on building skills, and a focus on increasing quality of life.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;There are some indicators of what good rehabilitation services might comprise for people with an intellectual disability, who have rehabilitation needs. However, far more research and guidance are required in this area. In particular, it is unclear whether rehabilitation is best provided within an inpatient or community model, and further detail is required about optimal components of such rehabilitation.&lt;/p&gt;\u0000 ","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"589-610"},"PeriodicalIF":1.2,"publicationDate":"2024-02-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140019706","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The demographic and diagnostic profile of women with intellectual disability and mental health disorder in New South Wales and patterns of service use: A data linkage study","authors":"Erin L. Whittle,&nbsp;Karen Fisher,&nbsp;Preeyaporn Srasuekbul,&nbsp;Julian Trollor","doi":"10.1111/bld.12575","DOIUrl":"10.1111/bld.12575","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Current evidence indicates that intellectual disability and gender are both factors in differential usage of services. However, there are limited data about the demographic and service usage patterns of people with intellectual disability who use mental health services. This is particularly true in relation to women with intellectual disability with mental ill health. Interrogation of large-scale linked data sets can provide valuable insights into patterns of service usage among marginalised groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A large collaborative data linkage project was assembled with the overarching aim of providing an epidemiological profile of the health (including mental health), health service use, mortality and other service system contacts of people with intellectual disability in New South Wales (NSW), Australia. These linked data were used to interrogate the demographic, diagnostic and service use profiles of women with intellectual disability who have sought mental health support in NSW.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The linked data demonstrated important differences in patterns of diagnosis and service use for women with intellectual disability and mental health disorders, when compared to women without intellectual disability and men with and without intellectual disability, with mental health disorders. The diagnostic profile of women with intellectual disability reflected the gendered nature of diagnoses found in the wider population. Women with intellectual disability also experienced higher rates of diagnostic instability than other groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The intersection between gender, intellectual disability and mental health has an effect on diagnostic profile and patterns of service use for women with intellectual disability. These differences are important and may impact targeted service delivery and planning for women with intellectual disability who have sought mental health support.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"371-384"},"PeriodicalIF":1.5,"publicationDate":"2024-02-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12575","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140019619","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Staffs' experiences and strategies to maintain care for individuals with intellectual disabilities living in supported living facilities during the Covid-19 pandemic","authors":"Ellen M. I. Ersfjord,&nbsp;Tanja Plasil,&nbsp;Hege M. Johnsen","doi":"10.1111/bld.12589","DOIUrl":"10.1111/bld.12589","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>We explored the experiences of staff working in Norwegian community-based living facilities, caring for people with intellectual disabilities during the Covid-19 pandemic, and what self-regulatory strategies staff used to maintain health and care service delivery and contribute to organisational resilience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative design was utilized. Data were collected from September 2021 to April 2022 with individual and focus group interviews. In this study, 25 staff members participated. Thematic analysis was conducted.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Five main themes were identified regarding the experiences of staff during the pandemic: Lockdown of facilities, social isolation of residents, lack of health follow-up, high sick leave rates and communication challenges. Only some of the strategies to mitigate pandemic-related challenges were based on current Norwegian infection control guidelines. Some strategies were successful while others were not and some were negligent and challenged the delivery of health and care services for the residents.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our study shows that people with intellectual disabilities living in the community-based living facilities were subjected to human rights violations and violations of the Norwegian infection control law. This was caused by a lack of several important organisational qualities in the facilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"385-396"},"PeriodicalIF":1.5,"publicationDate":"2024-02-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12589","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140019709","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"‘I wouldn't change my flat for anything’. Is there scope for more people with learning disabilities to rent their own homes?","authors":"Deborah Quilgars,&nbsp;Eppie Leishman,&nbsp;David Abbott,&nbsp;Samantha Clarke,&nbsp;Becca Cooper,&nbsp;Stephen Hodgkins,&nbsp;Paul Scarrott,&nbsp;Andy Pollin,&nbsp;Lois Beech","doi":"10.1111/bld.12584","DOIUrl":"10.1111/bld.12584","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Policy, research, and people's own experience in the UK consistently highlight the central importance of a home of choice for people with learning disabilities. Yet attention is mainly focused on the development of specialist as opposed to generic housing options for people with learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This article reviews the findings from a major research study looking at the rented housing sector for people with learning disabilities. The study comprised of a review of local authority learning disability strategies; a ‘national conversation’ with key stakeholders; and thirty-five, qualitative interviews with people with learning disabilities who rent their own homes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The research found that local learning disability strategies are lacking in information on rented housing for people. A national consultation identified a range of challenges in accessing rented housing for people wishing to do so. Interviews with people with learning disabilities renting their own place confirmed some of these problems but also, crucially, highlighted the success for most who rented their own home. People liked renting and were managing their tenancies well with relatively modest support.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The evidence points to the possible benefits of a greater focus on renting for people with learning disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"362-370"},"PeriodicalIF":1.5,"publicationDate":"2024-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12584","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139969829","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"In response to ‘Day service cultures from the perspectives of autistic people with profound learning disabilities’ (Ned Redmore)","authors":"Shalim Ali,&nbsp;Andrew Power","doi":"10.1111/bld.12586","DOIUrl":"10.1111/bld.12586","url":null,"abstract":"<p>My name is Shalim Ali. I am part of a research team and have worked on different research projects. I am also an expert by experience with Choice Support. I write a column in the Community Living magazine, commissioned by Saba Salman. I have lived independently for 3 years.</p><p>My name is Andrew Power. I am a researcher in Geography at the University of Southampton. I am interested in the role of place in people's lives. I work closely with people with learning disabilities to find out about their support in the community and in care settings and think about ways to improve it. I met Shalim when we began our recent research project, Feeling at Home.</p><p>We were invited to write a In Response article by the journal to one of the papers in this issue.</p><p>We chose Ned Redmore's article (2023) <i>Day service cultures from the perspectives of autistic people with profound learning disabilities</i> for the <i>British Journal of Learning Disabilities</i>. We both saw Ned present this research at the Social History of Learning Disabilities conference in July 2023. We both found that it was a very accessible talk and clearly presented.</p><p>Ned's article is about how a good service culture can be developed in a day service for autistic people with profound learning disabilities. The service in the study is a local charity based in the North of England with 20–30 clients.</p><p>We chose to use the word client for two reasons. First, Ned used this term to describe people who attended the day centre. Second, Shalim also uses the term ‘client’ in his professional role as a quality checker in his reports and as an expert by experience in his research. We preferred this to ‘service user’ and thought that writing ‘people who attend the day centre’ every time was too long for this article.</p><p>Shalim also thought that the paper related well to his own experience of day services when he was younger. During this time, staff were practical, enthusiastic for the job, engaging, polite and valued what they did. Staff were also very diverse in ethnicity.</p><p>In reading the paper, we found out that the researcher Ned worked very closely with a day service client ‘Ben’ with profound and multiple learning disabilities. Ben is described as a 27-year-old man who communicated through vocalisations, direction and body language. He was provided support at home and 2-day services.</p><p>We asked Ned to explain why he tried to focus on Ben's experiences. Ned said that he wanted to try to understand Ben's experiences. He wanted to try and change his own views of the day service in line with Ben's. This would allow Ned to think about service culture in a way that was more in line with the way Ben viewed it.</p><p>We then asked Ned to explain how he developed this relationship. Ned explained that this was a process for him and it took time. When he first went to the day service, he looked at and wrote about the things that the day service staff thought were important.","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"432-434"},"PeriodicalIF":1.5,"publicationDate":"2024-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12586","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139969326","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Enabling Dominic's voice and participation through the cocreation of an ‘I am’ Digital Story for supporting his post-19 transition from special school to adult social care","authors":"Cleo Barron,&nbsp;Sarah Parsons,&nbsp;Hanna Kovshoff","doi":"10.1111/bld.12585","DOIUrl":"10.1111/bld.12585","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Transitions into adult services for young people with complex communication needs are often experienced as challenging and rarely include the voices of young people.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We piloted a person-centred method to enable one young person's (Dominic) voice to be included in his transition to adult services. An ‘I am’ Digital Story is a short video (c.6 min) that provides a strengths-based representation of a young person that is designed to be shared with and between settings. The process and outcomes of story cocreation were evaluated through semi-structured interviews with key stakeholders.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The process of story creation was evaluated very positively by key stakeholders. The information about Dominic's strengths and preferences helped the new setting to prepare for Dominic's arrival.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The ‘I am’ Digital Story method provides a powerful and accessible method for including the voices of young people with complex communication needs in their transitions.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"577-588"},"PeriodicalIF":1.2,"publicationDate":"2024-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12585","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139759696","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}