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.
Methods
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.
Findings
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.
Conclusions
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.
{"title":"Barriers to Healthcare for People With a Learning Disability From Ethnic Minorities: Perspectives of Self-Advocates and Carers","authors":"Nicola Cooper-Moss, Katie Umpleby, Christina Roberts, Christie Garner, Aisha Hazel Edwards, Nicola Ditzel, Jabeer Butt, Samantha Clark, Christopher Hatton, 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}
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.
Methods
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.
Findings
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.
Conclusion
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.
{"title":"Classic Grounded Theory: A Rigorous Methodology for Research Involving Participants With Severe/Profound Intellectual Disabilities","authors":"Anne-Marie Martin, Lisbeth Nilsson, 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}
Jess Mannion, Lori B. Vincent, Stephen D. Kroeger, Tricia Blee, Oisin Daly, Rhena Gallagher, Bryan Higgins, Mairead McHugh, Kerri Wolfer, Brittany E. Hayes
Introduction
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.
Methods
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.
Results
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.
Conclusion
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.
{"title":"Researching Together: Researchers With and Without Disabilities Engage Across National and Interdisciplinary Boundaries","authors":"Jess Mannion, Lori B. Vincent, Stephen D. Kroeger, Tricia Blee, Oisin Daly, Rhena Gallagher, Bryan Higgins, Mairead McHugh, Kerri Wolfer, 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}
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.
Methods
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.
Findings
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.
Conclusions
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.
{"title":"Inclusion of Students With Intellectual Disability in Saudi Universities: Understanding the Gap Between Theory and Practice","authors":"Khalid M. Abu-Alghayth, 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}
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.
Methods
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.
Findings
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.
Conclusions
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.
{"title":"Creative Journeys Involving Adults With Profound and Multiple Learning Disabilities: Co-Development in Multi-Sensory Theatre","authors":"Karen Bunning, 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}
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).
Methods
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.
Findings
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.
Conclusions
Drawing from these experiences, we will discuss the importance of relational autonomy, collectively owned and adaptive knowledge, and the learning context.
{"title":"Uncharted Territory: Delving into Unexplored Knowledge to Curb Ableism in Academia","authors":"Alice Schippers, Mark Koning, 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}
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.
Methods
In this qualitative study, we asked people with an intellectual disability (N = 87) and their support workers (N = 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.
Findings
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.
Conclusions
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.
{"title":"The Lived Experience of People With Intellectual Disability in Community Settings: A Comparison of Self-Reports and Staff Reports","authors":"Elizabeth Smith, Petroc Sumner, 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}
Izaskun Álvarez-Aguado, Vanessa Vega Córdova, Miguel Roselló-Peñaloza, Félix González-Carrasco, Maryam Farhang, Karla Campaña Vilo, Herbert Spencer, Felipe Muñoz La Rivera, Leyre Álvarez Aguado
Background
Women with intellectual disabilities confront distinct challenges as they age, compounded by cognitive and adaptive constraints. These challenges encompass heightened health risks, barriers to social support and susceptibility to violence, underscoring the critical role of self-determination in enhancing their quality of life.
Method
This quantitative study utilised a scale based on the Functional Model of Self-Determination to assess self-determination levels in 218 Chilean women aged 45 to 80 with intellectual disabilities. The research also explored potential personal and environmental factors influencing these levels.
Findings
Employed participants and those in supportive family environments demonstrated higher self-determination levels. Moreover, women without mental health issues exhibited advanced skills in self-regulation, empowerment and self-realisation. Significant disparities were noted based on varying levels of intellectual disability, types of support received and socioeconomic status, highlighting the necessity for tailored and diversified support systems.
Conclusion
Developing personalised support programs that address individual and contextual differences is crucial. Despite limitations, this study emphasises the urgency for inclusive public policies aimed at eliminating socioeconomic and cultural barriers, thereby fostering environments conducive to community engagement and autonomous decision-making.
{"title":"Self-Determination Skills in Ageing Women With Intellectual Disabilities","authors":"Izaskun Álvarez-Aguado, Vanessa Vega Córdova, Miguel Roselló-Peñaloza, Félix González-Carrasco, Maryam Farhang, Karla Campaña Vilo, Herbert Spencer, Felipe Muñoz La Rivera, Leyre Álvarez Aguado","doi":"10.1111/bld.12630","DOIUrl":"https://doi.org/10.1111/bld.12630","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Women with intellectual disabilities confront distinct challenges as they age, compounded by cognitive and adaptive constraints. These challenges encompass heightened health risks, barriers to social support and susceptibility to violence, underscoring the critical role of self-determination in enhancing their quality of life.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This quantitative study utilised a scale based on the Functional Model of Self-Determination to assess self-determination levels in 218 Chilean women aged 45 to 80 with intellectual disabilities. The research also explored potential personal and environmental factors influencing these levels.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Employed participants and those in supportive family environments demonstrated higher self-determination levels. Moreover, women without mental health issues exhibited advanced skills in self-regulation, empowerment and self-realisation. Significant disparities were noted based on varying levels of intellectual disability, types of support received and socioeconomic status, highlighting the necessity for tailored and diversified support systems.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Developing personalised support programs that address individual and contextual differences is crucial. Despite limitations, this study emphasises the urgency for inclusive public policies aimed at eliminating socioeconomic and cultural barriers, thereby fostering environments conducive to community engagement and autonomous decision-making.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"248-258"},"PeriodicalIF":1.2,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091296","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}
Jennifer Threlfall, Hannah Jobling, Katherine Graham
Background
Parents with learning disabilities are often assessed as lacking the capacity to parent effectively; however, ecological models of parenting indicate that support from informal social networks (ISNs) can help them successfully maintain family life. This systematic review examined evidence regarding (1) parent and child outcomes associated with support from ISNs and (2) perceptions of the roles of ISNs for parents with learning disabilities.
Methods
Peer-reviewed quantitative and qualitative literature was identified through a search of six databases, and a narrative synthesis was subsequently conducted.
Results
Twenty-six articles were included in the review. Findings of the quantitative synthesis provided preliminary evidence for a positive relationship between support from ISNs and parental mental health, positive parenting practices and child wellbeing. The qualitative synthesis indicated that parents benefited from ISNs through their provision of practical and emotional support and learning skills. Network characteristics that divided supportive from unsupportive members were also identified.
Conclusion
Parents with learning disabilities receive the same positive outcomes from ISNs as other parents, although unique contextual and social challenges may affect their experiences. Future research should explore interventions to build ISNs of parents with learning disabilities that acknowledge their existing strengths as parents and community members.
{"title":"The Role of Informal Social Networks in Supporting Parents With Learning Disabilities: A Systematic Review","authors":"Jennifer Threlfall, Hannah Jobling, Katherine Graham","doi":"10.1111/bld.12628","DOIUrl":"https://doi.org/10.1111/bld.12628","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Parents with learning disabilities are often assessed as lacking the capacity to parent effectively; however, ecological models of parenting indicate that support from informal social networks (ISNs) can help them successfully maintain family life. This systematic review examined evidence regarding (1) parent and child outcomes associated with support from ISNs and (2) perceptions of the roles of ISNs for parents with learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Peer-reviewed quantitative and qualitative literature was identified through a search of six databases, and a narrative synthesis was subsequently conducted.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Twenty-six articles were included in the review. Findings of the quantitative synthesis provided preliminary evidence for a positive relationship between support from ISNs and parental mental health, positive parenting practices and child wellbeing. The qualitative synthesis indicated that parents benefited from ISNs through their provision of practical and emotional support and learning skills. Network characteristics that divided supportive from unsupportive members were also identified.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Parents with learning disabilities receive the same positive outcomes from ISNs as other parents, although unique contextual and social challenges may affect their experiences. Future research should explore interventions to build ISNs of parents with learning disabilities that acknowledge their existing strengths as parents and community members.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"230-247"},"PeriodicalIF":1.2,"publicationDate":"2024-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12628","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091364","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}
Third-level education is a relatively new opportunity for people with intellectual disabilities. The development of third-level educational opportunities for this population rests on understanding their experiences and suggestions for programme development and improvement. The aim of this study is to establish how inclusive third-level education is experienced by people with intellectual disabilities.
Method
A scoping review was conducted using Arksey and O'Malley's framework of peer-reviewed empirical research published between 2002 and 2023 that reported on the experience of third-level education for people with intellectual disabilities.
Findings
People with intellectual disabilities are engaging in third-level education courses within University Campuses. They consider such programmes as opportunities to meet aspirations and to enable independent living especially through employment. Their experiences are influenced by supportive staff, initiatives and challenges and they have opinions on how to improve third-level programmes.
Conclusions
People with intellectual disabilities value and embrace the opportunities to engage in third-level education. Their experience is mixed with positive personal outcomes and challenges. Future research is needed to examine effective approaches to overcoming challenges and finding ways to develop programmes that meet the needs of adults with intellectual disabilities.
{"title":"How People With an Intellectual Disability Experience Inclusive Third-Level Education: A Scoping Review","authors":"Therese Hennessy, Jennifer McMahon, Owen Doody","doi":"10.1111/bld.12626","DOIUrl":"https://doi.org/10.1111/bld.12626","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Third-level education is a relatively new opportunity for people with intellectual disabilities. The development of third-level educational opportunities for this population rests on understanding their experiences and suggestions for programme development and improvement. The aim of this study is to establish how inclusive third-level education is experienced by people with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A scoping review was conducted using Arksey and O'Malley's framework of peer-reviewed empirical research published between 2002 and 2023 that reported on the experience of third-level education for people with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>People with intellectual disabilities are engaging in third-level education courses within University Campuses. They consider such programmes as opportunities to meet aspirations and to enable independent living especially through employment. Their experiences are influenced by supportive staff, initiatives and challenges and they have opinions on how to improve third-level programmes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>People with intellectual disabilities value and embrace the opportunities to engage in third-level education. Their experience is mixed with positive personal outcomes and challenges. Future research is needed to examine effective approaches to overcoming challenges and finding ways to develop programmes that meet the needs of adults with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"158-191"},"PeriodicalIF":1.2,"publicationDate":"2024-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12626","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446826","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}
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