British Journal of Learning Disabilities最新文献

{"title":"Working to Work: Gaining Employment After Inclusive Postsecondary Education","authors":"Katie Ducett,&nbsp;Beth Myers,&nbsp;Brianna Shults","doi":"10.1111/bld.12642","DOIUrl":"https://doi.org/10.1111/bld.12642","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disability in the United States have historically been underemployed due to societally constructed barriers. Recently, more individuals with intellectual disability have been attending Inclusive Postsecondary Education (IPSE) programmes, which have contributed to improving their employment outcomes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This qualitative study analyzed the experiences of five graduates from one IPSE programme who completed an internship during their programme. Semistructured interviews were used to discuss their IPSE internship experiences, current employment and future goals. Transcripts were coded and analyzed inductively.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>At the time of the interviews, each participant had competitive employment. The findings illustrated two significant categories of resources used to gain employment postgraduation: internal university resources such as university staff, course content, work sites and networking groups; and external university resources, including parents, community service agencies and the Internet.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Although external university resources were important to the participants in this study, they may be an area of inequity when considering the intersectionality of disability and other marginalized identities such as race and socioeconomic status. To combat any lack of external resources a student may have, IPSE programmes should plan to address potential inequities programmatically.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 3","pages":"360-370"},"PeriodicalIF":1.3,"publicationDate":"2024-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144910110","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":"‘People With Intellectual Disabilities Can Really Go to Uni, They Can Study, They Just Need That Extra Assistance’–Stories of People With Intellectual Disability Experiencing University in Australia","authors":"Matthew Turnbull,&nbsp;Angela Ho,&nbsp;Fiona Rillotta,&nbsp;Mary-Ann O'Donovan,&nbsp;Nadia Willis,&nbsp;Greta Westermann,&nbsp;Nikki Wedgwood","doi":"10.1111/bld.12638","DOIUrl":"https://doi.org/10.1111/bld.12638","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This paper was written by researchers with and without intellectual disability working in two Australian universities. Each university has an inclusive programme. The co-researchers were former students of these programmes. The reason for this study was to find out what people in these two programmes did while they were at university, what they liked and disliked about their experience and what they have been doing since they finished university.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Researchers recorded conversations about university experiences with 10 current and former students of the two programmes and five participants' family members. From this, the students' ‘journey’ to, through and after university was co-written by a pair of researchers with and without lived experience. These stories were reviewed by a team of people with lived experience. In this paper, five journeys are presented as well as a summary of what was reported across all 10 stories.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The study found that participants had a positive experience at university and developed self-confidence. They enjoyed learning and having choices in their learning. Some students reported feeling included, meeting new people, having good relationships with mentors and having positive involvement with university clubs. Others reported difficulties making friends, feeling unaccepted or not fully included in all parts of university life. Some programme graduates went on to paid employment or other learning. Not all students felt supported with the move to other opportunities after university.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study highlights the importance of including people with intellectual disability as researchers and advisors in studies about people with intellectual disability. The study also shows more needs to be done within these programmes to help students develop genuine relationships at university beyond the programmes. More needs to be done to ensure new friendships continue after leaving the programme. Students also need to be better supported on their post-university journeys.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"312-323"},"PeriodicalIF":1.2,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091537","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":"Exploring the Sense of Virtual Community Among Members of the Registered Nurse in Intellectual Disability (RNID) Excellence Ireland Network Facebook Group","authors":"Mary Reidy,&nbsp;Liam Callaghan","doi":"10.1111/bld.12639","DOIUrl":"https://doi.org/10.1111/bld.12639","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Virtual Communities of Practice offer opportunities to build professional support networks, encourage continuing professional development, share knowledge and promote the translation of evidence into nursing practice. The Registered Nurse in Intellectual Disability (RNID) Excellence Ireland Network is a private Facebook group aimed at promoting and maintaining the RNID's professionalism. This article explores the sense of virtual community and factors that impact the engagement of members of the RNID Excellence Ireland Network Facebook group with group activities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Materials and Methods</h3>\u0000 \u0000 <p>The study design incorporated a cross-sectional descriptive survey that explored the sense of virtual community and engagement factors of registered and student nurses with group activities. The questionnaire was administered to registered and student nurses in Intellectual Disability (<i>n</i> = 140, age range 18−65 years) in Ireland.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The majority of registered/student nurses rated their engagement with the Facebook page very highly for promoting a sense of virtual community of practice and a safe and trustworthy environment where information could be shared, questions answered and a support network developed. However, concerns about social media privacy impacted engagement with the platform for almost one-third of participants.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Senior nurses engage with group activities, ensuring junior colleagues receive quality mentorship in the spirit of the Code of Professional Conduct and Ethics for Registered Nurses and Registered Midwives. Efforts should be continued to engage students with the virtual community of practice as part of the professional practice toolkit for the RNID.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"324-332"},"PeriodicalIF":1.2,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12639","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091538","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":"Barriers to Healthcare for People With a Learning Disability From Ethnic Minorities: Perspectives of Self-Advocates and Carers","authors":"Nicola Cooper-Moss,&nbsp;Katie Umpleby,&nbsp;Christina Roberts,&nbsp;Christie Garner,&nbsp;Aisha Hazel Edwards,&nbsp;Nicola Ditzel,&nbsp;Jabeer Butt,&nbsp;Samantha Clark,&nbsp;Christopher Hatton,&nbsp;Umesh Chauhan","doi":"10.1111/bld.12636","DOIUrl":"https://doi.org/10.1111/bld.12636","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with a learning disability from ethnic minorities experience barriers in their access to healthcare services and poorer health outcomes. This study aimed to explore the factors that contribute to these barriers and to better understand how they can be reduced.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Twenty ‘experts by experience’ took part in experience-based co-design workshops to ascertain how lived experiences related to findings from a co-designed scoping review. Audio recordings were transcribed and analysed using framework analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Self-advocates and carers experienced discrimination within a range of healthcare settings; however, recognising and understanding the source was difficult. Many people reported a lack of reasonable adjustments or support services that considered their ethnic identities. Participants also experienced isolation and stigma within their own family and community networks. Access to healthcare was adversely affected by COVID-19. Many people were unaware of the Learning Disability Register and there was insufficient support when transitioning between healthcare services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Services can be improved by effective communication, continuity of care and an enhanced understanding of the experiences of learning disability across different ethnic groups. Understanding an individual's needs and preferences from the first point of contact is important for the allocation of resources.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"301-311"},"PeriodicalIF":1.2,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12636","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091549","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":"Classic Grounded Theory: A Rigorous Methodology for Research Involving Participants With Severe/Profound Intellectual Disabilities","authors":"Anne-Marie Martin,&nbsp;Lisbeth Nilsson,&nbsp;Tom Andrews","doi":"10.1111/bld.12635","DOIUrl":"https://doi.org/10.1111/bld.12635","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Including people with severe/profound intellectual disabilities as research participants challenges researchers due to their diverse abilities to participate and express themselves. Ensuring the rigour of the research and the credibility of the findings presents a challenge.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We use examples from our research to demonstrate that Classic Grounded Theory offers a systematic but flexible way of undertaking rigorous, credible research that can involve participants with severe/profound intellectual disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Examples from our research show that full and adherent application of Classic Grounded Theory enabled us to generate a multivariate theory at the explanatory level. Rigorous adherence to and application of this methodology and in-depth analysis of video data unveiled subtle interaction and communication behaviours, as well as the development of tool-use understanding.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>It is important that people with severe/profound intellectual disabilities are included in research, so their experiences inform the knowledge and evidence guiding and shaping their care and support. Classic Grounded Theory provides a credible, rigorous research methodology for inclusion of people that may otherwise be excluded as participants.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"293-300"},"PeriodicalIF":1.2,"publicationDate":"2024-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12635","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091198","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":"Researching Together: Researchers With and Without Disabilities Engage Across National and Interdisciplinary Boundaries","authors":"Jess Mannion,&nbsp;Lori B. Vincent,&nbsp;Stephen D. Kroeger,&nbsp;Tricia Blee,&nbsp;Oisin Daly,&nbsp;Rhena Gallagher,&nbsp;Bryan Higgins,&nbsp;Mairead McHugh,&nbsp;Kerri Wolfer,&nbsp;Brittany E. Hayes","doi":"10.1111/bld.12634","DOIUrl":"https://doi.org/10.1111/bld.12634","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>The Relationships and Sexuality Research Team consists of researchers with learning disabilities who specialise in research on sexual citizenship and use visual and creative research methods. They are collaborating with academics on an innovative, cross-national, interdisciplinary and co-produced research project that brings together research teams from Ireland, the United Kingdom and the United States. Together, we gauged how effective this way of working was for use with an international research team.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Each of the 10 researchers participated in an interview using graphic narrative to co-create their story in comic form, uncover the origin stories and motivating elements of our mutual involvement and identify, in a formative way, conditions of equitable participation. Two focus groups followed this to explore perceptions and experiences of this project, one with the researchers with learning disabilities and one with the non-disabled academics and practitioner-researchers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Many benefits were identified. This approach fosters learning new perspectives and innovative research methods, leading to meaningful and equitable research outcomes. However, we identified various barriers relating to power and communication due to professional jargon, cultural terminology, speech and articulation differences, accents and online communication. This led us to devise several strategies to implement to work towards more inclusive research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>For research teams with diverse teams, there needs to be the opportunity to build trust and find common ground. Reflecting on the process and making changes early on is crucial, as well as focusing on inclusion and equity rather than agendas.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"192-202"},"PeriodicalIF":1.2,"publicationDate":"2024-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12634","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446633","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":"Inclusion of Students With Intellectual Disability in Saudi Universities: Understanding the Gap Between Theory and Practice","authors":"Khalid M. Abu-Alghayth,&nbsp;Basmah F. Alshahrani","doi":"10.1111/bld.12633","DOIUrl":"https://doi.org/10.1111/bld.12633","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The global discourse on higher education underscores its pivotal role in personal development, societal progress and economic prosperity. However, actual implementation and practices within universities have not kept pace, and students with intellectual disability still struggle, as their journey towards accessing and succeeding in higher education is marked by intricate challenges. Therefore, this study investigated the gap between theory and practice in Saudi universities, obtaining an in-depth understanding of the inclusion of students with intellectual disability in universities, current challenges and factors perceived as critical for enhancing these students' enrolment and success.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We employed a basic interpretive qualitative approach to gain insight into the perceptions of 12 faculty members and four staff members via a series of initial and follow-up semistructured interviews and focus group. In addition, we analysed a set of relevant documents.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The findings highlight the following themes: admission process and entry requirements, implementation gaps in educational policies, nondisclosure of disability, accessibility and support, and critical factors for successful inclusion; several subthemes also emerged.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study underscores the complex dynamics between policy and practice, revealing significant gaps that need to be addressed to ensure genuine inclusivity. Based on the findings, we discuss future directions in terms of research and practice.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"283-292"},"PeriodicalIF":1.2,"publicationDate":"2024-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091619","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":"Creative Journeys Involving Adults With Profound and Multiple Learning Disabilities: Co-Development in Multi-Sensory Theatre","authors":"Karen Bunning,&nbsp;Nicola Grove","doi":"10.1111/bld.12631","DOIUrl":"https://doi.org/10.1111/bld.12631","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The last decade has seen developments in collaborative multi-sensory theatre and dramatic performance involving individuals with profound and multiple learning disabilities. The current study investigated co-development processes used by a multi-sensory theatre company that employed four artists with profound and multiple learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative approach was adopted, involving preliminary observations and in-depth interviews with 10 individuals who performed different roles in the company. Interviews were recorded, transcribed and analysed thematically.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Three themes emerged, centring around concepts of interactional ‘space’: the space between (how meanings were co-constructed); the space around (how the dramatic narrative was coproduced); the space beyond (how collaboration occurred in the live multi-sensory show). A fourth theme, the journey, connected all the spaces in a process of learning and changing, enjoyment, having a voice and developing the narrative.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Through participating in co-creative processes of artistic development, people with profound and multiple learning disabilities can share their expertise and contribute to the sensory theatrical shows as artists in their own right.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"272-282"},"PeriodicalIF":1.2,"publicationDate":"2024-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091666","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":"Uncharted Territory: Delving into Unexplored Knowledge to Curb Ableism in Academia","authors":"Alice Schippers,&nbsp;Mark Koning,&nbsp;Leo Cardinaal","doi":"10.1111/bld.12627","DOIUrl":"https://doi.org/10.1111/bld.12627","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Language can reflect bias: an ‘intellectual’ disability means for many people that you cannot be an academic knowledge producer; a ‘learning’ disability means that your education will be hampered. Like language definitions, academic practices can reflect societal biases. The social (in)justice regarding knowledge and knowledge production is called epistemic injustice, and it has resulted in exclusion of nonconventional knowers, such as persons with intellectual or learning disabilities, from academia and higher education (other than as objects of research).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This paper will discuss academic practices through the lens of epistemic (in)justice and look at the potential of inclusive research and educational practices therein. We will briefly describe dominant ways of knowing (e.g., abstract, verbal), and counter these practices in exploring practical, tacit, embodied and affective ways of knowing.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>For people with intellectual disabilities to be able to gain recognition as ‘real’ knowers within academia, we need to include diverse types of knowing and enable academic practices to be inclusive of people with intellectual disabilities. Inclusive practices can support a paradigm shift away from dominant ways of knowledge production in research and education, by centralising and correctly interpreting alternate knowledge. Experiences of scholars with intellectual disabilities appear to confirm the value of different ways of knowing.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Drawing from these experiences, we will discuss the importance of relational autonomy, collectively owned and adaptive knowledge, and the learning context.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"211-220"},"PeriodicalIF":1.2,"publicationDate":"2024-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12627","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143447043","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":"The Lived Experience of People With Intellectual Disability in Community Settings: A Comparison of Self-Reports and Staff Reports","authors":"Elizabeth Smith,&nbsp;Petroc Sumner,&nbsp;Georgina Powell","doi":"10.1111/bld.12629","DOIUrl":"https://doi.org/10.1111/bld.12629","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>There is a need for more qualitative research focusing on the lived experiences of people with an intellectual disability and a better understanding of how these experiences align with other voices in their lives, such as family and support staff.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>In this qualitative study, we asked people with an intellectual disability (<i>N</i> = 87) and their support workers (<i>N</i> = 120) similar questions about factors contributing positively and negatively to the lives of those with an intellectual disability. We conducted a thematic analysis combining data across respondents, while also identifying areas of similarities and divergence between self-reports and staff reports. The setting was community-supported living schemes and group homes in the UK.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Qualitative themes, representing key positive and negative factors in the lives of people with an intellectual disability, were (1) Positive impact of social relationships on well-being, (2) positive impact of participation and roles on self-determination and well-being and (3) negative impacts of difficulties affecting day-to-day life. These three themes are all linked to a broader sense of identity, purpose and self-determination. These were broadly consistent across self-reports and staff reports, although there were some points of divergence, particularly in Theme 3.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>These findings reveal areas that are key to maximising the quality of life of people with an intellectual disability and suggest that self-reports and proxy reports can sometimes offer unique perspectives. Our findings can be used to ensure that the priorities of people with an intellectual disability are considered in their care.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"259-271"},"PeriodicalIF":1.2,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12629","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091377","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}