British Journal of Learning Disabilities最新文献

{"title":"Can Natural Supporters Be Fostered to Support Adults With Intellectual Disabilities to Become Local Volunteers or to Join Mainstream Leisure Groups in Irish Rural Towns and Villages?","authors":"Geraldine Boland,&nbsp;Anne-Marie Potter,&nbsp;Eilin de Paor,&nbsp;Suzanne Guerin","doi":"10.1111/bld.12644","DOIUrl":"https://doi.org/10.1111/bld.12644","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background/Aims</h3>\u0000 \u0000 <p>This study explored supporting the social inclusion of adults with intellectual disabilities living in rural areas, by engaging natural supporters (other than family members and paid staff).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This qualitative study involved educating and preparing six local connectors—each a member of mainstream volunteering and/or leisure clubs to support six people with intellectual disabilities to join. Qualitative interviews were used to explore the experiences of local connectors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Six clusters of meaning were identifiable from content analysis including the support provided by local connectors, communication/interaction and supports for continued attendance. Rural local connectors had strong local knowledge and connections that facilitated those with disabilities to make local acquaintances.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions/Implications</h3>\u0000 \u0000 <p>As part of a structured programme, natural supporters can be engaged to support people with intellectual disabilities to become known and make connections in their rural neighbourhoods. Implications for practice include sourcing social roles as close as possible to home for rural dwellers and the importance of flexible transport. The characteristics of local connectors and the club ethos/culture that facilitates social inclusion are identified. Policy recommendations include that local authorities offering funding to local clubs develop guidelines and education for members, with a view to embedding diverse membership as a guiding principle.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 3","pages":"371-381"},"PeriodicalIF":1.3,"publicationDate":"2024-12-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12644","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144910507","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":"‘We Are Students: Experiences From Our Student Lives at a University in Norway’","authors":"Tone Brynildsen,&nbsp;Ingrid Eid Jacobsen,&nbsp;Anna Chalachanová,&nbsp;Inger Marie Lid","doi":"10.1111/bld.12643","DOIUrl":"https://doi.org/10.1111/bld.12643","url":null,"abstract":"&lt;p&gt;The pilot project, Higher Education in Human Rights for Students with Intellectual Disabilities was externally funded by the foundation DAM&lt;sup&gt;1&lt;/sup&gt;, developed in cooperation with the Norwegian Association for Persons with Intellectual Disabilities&lt;sup&gt;2&lt;/sup&gt; and Oslo municipality. It aims to develop study courses for students with intellectual disabilities in Norway's higher education system. The development of the pilot project is based on Article 24 in the Convention on the Rights of Persons with Disabilities (United Nations &lt;span&gt;2006&lt;/span&gt;), which reads: “States Parties recognize the rights of persons with disabilities to education. To realize this right without discrimination and based on equal opportunities, States Parties shall ensure an inclusive education system at all levels and lifelong learning” (United Nations &lt;span&gt;2006&lt;/span&gt;, article 24). The change towards a more inclusive education goes back to the Salamanca Statement (UNESCO &lt;span&gt;1994&lt;/span&gt;), an international consensus regarding the need to provide equal educational rights to persons with special education needs. Inclusive education is discussed and presented in different ways. One of the ways of communicating inclusive education is in light of a so-called narrow and broad definition of inclusive education (Haug &lt;span&gt;2017&lt;/span&gt;). While the narrow definition includes children/persons with special needs (Haug &lt;span&gt;2017&lt;/span&gt;), the broad definition includes all marginalised groups in vulnerable positions regarding their access to education (Nelis, Pedaste, and Šuman &lt;span&gt;2023&lt;/span&gt;). The narrow definition sheds light on including persons with special needs in mainstream education and their participation and educational/pedagogical accommodation that allows the students to reach their educational potential (Nelis, Pedaste, and Šuman &lt;span&gt;2023&lt;/span&gt;, 2). The pilot project is a possible contribution within the aspect/field of narrow definition of inclusive education. The development of the courses in the pilot project was otherwise inspired by the work of O'Brien et al. (&lt;span&gt;2018&lt;/span&gt;). The book brings knowledge of theoretical underpinnings and practical examples of the development of higher education courses and provisions of higher education for students with intellectual disabilities in different countries. The first chapter of the book lays out models of organisation of higher education for persons with intellectual disabilities and describes three models: The fully inclusive model (where the students attend the same classes as their peers), the both segragated and inclusive models (where the students experience both a segregated and inclusive models), and the segregated model (the students are thought in segregated classes on the university ground) (Neubert et al. 2001 in O'Brien et al. &lt;span&gt;2018&lt;/span&gt;, 11). The pilot project tries out two of the models, the hybrid model and the segregated model as described by O'Brien et al. (&lt;span&gt;2018&lt;/span&gt;). In this","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"9-16"},"PeriodicalIF":1.2,"publicationDate":"2024-12-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12643","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143447136","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":"You Can't Exclude Us Anymore! A Critical Reflection of Inclusive Research and Teaching Opportunities for People With Intellectual Disabilities in University Settings","authors":"Natasha Spassiani,&nbsp;Theo Armstrong,&nbsp;Mojca Becaj,&nbsp;Andrew Hiddleston,&nbsp;Anna Higgins,&nbsp;Aaron Hume,&nbsp;Jodi Robertson,&nbsp;Tony Young","doi":"10.1111/bld.12640","DOIUrl":"https://doi.org/10.1111/bld.12640","url":null,"abstract":"&lt;p&gt;Historically, universities were a place of exclusion for people with disabilities, particularly people with intellectual disabilities. This exclusion was due to the false views that people with intellectual disabilities were unable to be educated, think critically or meaningfully contribute to academic activities, such as teaching and research. Fortunately, the disability and self-advocacy movements have challenged these stereotypes about intellectual disabilities and have advocated for the rights of people with intellectual disabilities to have equal access to education and employment. Typically, if people with intellectual disabilities were in university settings, it was to be studied in research projects or used as teaching objects. People with intellectual disabilities being students in higher education or employed by a university to conduct research or teach students was not seen as a possibility until recently.&lt;/p&gt;&lt;p&gt;One of the main ways to include people with intellectual disabilities in university settings is by doing inclusive (participatory) research. This means allowing people with intellectual disabilities to have an active voice in leading research and that they are meaningfully involved in the research process. This includes developing research questions, collecting and analysing data and writing and presenting research findings. Inclusive (participatory) research is to ensure that people with intellectual disabilities are not research subjects being studied by researchers (Strnadová and Walmsley &lt;span&gt;2018&lt;/span&gt;; Spassiani and Friedman &lt;span&gt;2014&lt;/span&gt;; Johnson and Walmsley &lt;span&gt;2003&lt;/span&gt;, 10; Abma, Nierse, and Widdershoven &lt;span&gt;2009&lt;/span&gt;). Conducting inclusive research with people with intellectual disabilities is a complex process requiring many practical, ethical and methodological considerations (Hewitt et al. &lt;span&gt;2023&lt;/span&gt;), which may be a reason why this type of research is not common. Ensuring that people with intellectual disabilities are actively involved in leading research adds great value to the lives of individuals conducting the research and enhances the overall quality of the research (Walmsley, Strnadová, and Johnson &lt;span&gt;2018&lt;/span&gt;; Spassiani, Becaj, et al. &lt;span&gt;2023&lt;/span&gt;; Spassiani, Abdulla, et al. &lt;span&gt;2023&lt;/span&gt;). Inclusive research allows people with intellectual disabilities to be able to help lead the change at the individual and societal level so that people with intellectual disabilities can live better lives (Salmon, Barry, and Hutchins &lt;span&gt;2018&lt;/span&gt;). Despite the benefits of inclusive research, there has been limited research done to meaningfully include people with intellectual disabilities as having an active role of being researchers (Rios et al. &lt;span&gt;2016&lt;/span&gt;; Bigby, Frawley, and Ramcharan &lt;span&gt;2014&lt;/span&gt;).&lt;/p&gt;&lt;p&gt;It is also common for people with intellectual disabilities involved in research to not be fairly paid for their expert knowledge and time working on the proje","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"1-8"},"PeriodicalIF":1.2,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12640","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446910","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":"Nurse–Mother Collaborations in Disability Day-Service Centres for Individuals With Intellectual Disabilities","authors":"Yoshimi Ito,&nbsp;Kyoko Asakura,&nbsp;Shoko Sugiyama,&nbsp;Nozomu Takada","doi":"10.1111/bld.12641","DOIUrl":"https://doi.org/10.1111/bld.12641","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Day-service centres offer valuable support for individuals with intellectual disabilities, often referred to as service-users. Due to potential communication challenges, nurses must gather information from caregivers, particularly mothers. This study explores the collaboration between nurses at day-service centres and the mothers of service-users to enhance care quality.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This qualitative study collected data from six nurses working at day-service centres in Japan and conducted an analysis using a descriptive narrative approach. Each nurse participated in two or three semi-structured interviews, where nurses were encouraged to speak freely, resulting in 16 interviews.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Three key themes emerged from the collaboration between nurses and service-users’ mothers: (1) ‘building good relationships with parents to ensure a smooth exchange of information about service-users’; (2) ‘providing the same care at the day-service centre as the service-user would receive at home’; and (3) ‘identifying areas that nurses cannot compromise on while respecting how mothers care for their children’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>These findings provide insights into effective nursing care for individuals with intellectual disabilities in day-service centres, emphasising the importance of productive engagement with their mothers.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 3","pages":"351-359"},"PeriodicalIF":1.3,"publicationDate":"2024-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12641","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144910109","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":"Demonstrating Progress and Potential: Lessons Learned From Federally Funded Inclusive Postsecondary Education in the United States","authors":"Meg Grigal,&nbsp;Clare Papay,&nbsp;Caitlyn Bukaty,&nbsp;Belkis Choiseul-Praslin,&nbsp;Cate Weir,&nbsp;Chelsea VanHorn Stinnett","doi":"10.1111/bld.12637","DOIUrl":"https://doi.org/10.1111/bld.12637","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Since 2010, there has been significant growth in the United States in the number of students with intellectual disability accessing higher education, driven by federal legislation and funding. Currently, over 340 institutions of higher education provide programs of study for students with intellectual disability. Of these programs, 134 have received federal funding through the Transition and Postsecondary Education Program for Students with Intellectual Disabilities (TPSID) model demonstration program. The Think College National Coordinating Center (NCC), the evaluator of the TPSID model demonstration projects, has collected annual data on student activities and outcomes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study provides trend analysis of data from the TPSID model demonstration program on almost 5000 students with intellectual disability over a 13-year period.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>This analysis identified trends in student characteristics, university access, employment, support and outcomes of federally funded higher education programs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The TPSID model demonstration program and resulting student and program data substantially impacted higher education program development and quality in the United States. Trends reflected in this study demonstrate growth in inclusive course access, employment, credential attainment and use of financial aid for college students with intellectual disability. The study provides implications for practice, research and policy in the United States and internationally.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"333-347"},"PeriodicalIF":1.2,"publicationDate":"2024-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12637","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091492","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":"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}