{"title":"Disability hate speech: Social, cultural and political contexts By Mark Sherry, Terje Olsen, Janikke Solstad Vedeler, and John Eriksen Abingdon (Eds.), Routledge. 2021. pp. 268","authors":"David Wilkin","doi":"10.1111/bld.12539","DOIUrl":"10.1111/bld.12539","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"609-610"},"PeriodicalIF":1.5,"publicationDate":"2023-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46872557","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}
Damien Brennan, Maureen D'Eath, Philip McCallion, Mary McCarron
Background
As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well-being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) provides a unique insight into the health and well-being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS-TILDA Carer's Study.
Methods
The IDS-TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3-yearly cycle. The family carers complete a self-administered, mixed-methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS.
Findings
In each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard.
Conclusions
There is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well-being as they provide care for an increasingly ageing sibling.
{"title":"Health and well-being of sibling carers of adults with an intellectual disability in Ireland: Four waves of data","authors":"Damien Brennan, Maureen D'Eath, Philip McCallion, Mary McCarron","doi":"10.1111/bld.12532","DOIUrl":"10.1111/bld.12532","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well-being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) provides a unique insight into the health and well-being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS-TILDA Carer's Study.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The IDS-TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3-yearly cycle. The family carers complete a self-administered, mixed-methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>In each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>There is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well-being as they provide care for an increasingly ageing sibling.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"534-543"},"PeriodicalIF":1.5,"publicationDate":"2023-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49212951","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}
Darren Chadwick, Cameron Richards, Martin Molin, Iva Strnadová
<p>We are delighted to bring you this special edition of the <i>British Journal of Learning Disabilities</i> focussed on digital inclusion. This editorial is split into six sections. Following this introduction, it provides an overview of the special issue. Third, it summarises some of the key themes and findings arising from the work presented in this issue. Fourth, the reflections of Cameron Richards, our editor who has a learning disability, are presented. Fifth, we introduce the In Response article written by people with learning disabilities about one of the articles in this special edition. We close with some reflections on contemporary topics of interest, the current state of research in the field and provide some suggestions for future research endeavours to enhance the digital inclusion of people with learning disabilities.</p><p>Digital citizenship is the current state for many within society. Much of our lives is spent engaging with internet-enabled technology, and many are constantly connected and occupied by their digital devices and the activities and pastimes they pursue upon them. Many everyday tasks have moved or developed counterparts online, and there is an ever-increasing pressure to ‘keep up’. Hence, the societal demands and expectations for people to be digitally switched on constantly increase.</p><p>Recent figures from ‘we are social’ (<span>2022</span>) report that those using the internet do so for an average of 6 hours and 37 minutes per day, and our technology use continues to increase. Societally, people's online lives are viewed, by some, as equivalent to, or of even greater significance than, their offline lives. Despite this, digital exclusion and disadvantage remain unevenly distributed across society and markedly higher for people from particular groups, including people with learning disabilities. Moreover, in light of the current coronavirus disease 2019 (COVID-19) pandemic, there has been a rise in reliance on online methods of communication and interaction to maintain social networks and social capital (Caton et al., <span>2022</span>; Chadwick et al., <span>2022</span>).</p><p>How digital inclusion has been researched has developed over time. Initial work focussed on access to information and communication technologies (ICTs), including the internet (Chadwick et al., <span>2013</span>). Although these questions of access and inequity remain important, recent conceptualisations have begun to adopt more nuanced and complex considerations of digital participation (Ågren et al., <span>2020</span>). This includes looking at the ways in which people with learning disabilities engage in digital spaces and places, how they interact with ICT and how ICT is involved and embedded, or not, in their everyday lives.</p><p>Hence, digital inclusion describes a range of topics concerned with equality of access to ICT and its associated benefits and is a core component of social inclusion in the world today (DiMaggio & Ga
{"title":"Digital inclusion and people with learning disabilities","authors":"Darren Chadwick, Cameron Richards, Martin Molin, Iva Strnadová","doi":"10.1111/bld.12530","DOIUrl":"10.1111/bld.12530","url":null,"abstract":"<p>We are delighted to bring you this special edition of the <i>British Journal of Learning Disabilities</i> focussed on digital inclusion. This editorial is split into six sections. Following this introduction, it provides an overview of the special issue. Third, it summarises some of the key themes and findings arising from the work presented in this issue. Fourth, the reflections of Cameron Richards, our editor who has a learning disability, are presented. Fifth, we introduce the In Response article written by people with learning disabilities about one of the articles in this special edition. We close with some reflections on contemporary topics of interest, the current state of research in the field and provide some suggestions for future research endeavours to enhance the digital inclusion of people with learning disabilities.</p><p>Digital citizenship is the current state for many within society. Much of our lives is spent engaging with internet-enabled technology, and many are constantly connected and occupied by their digital devices and the activities and pastimes they pursue upon them. Many everyday tasks have moved or developed counterparts online, and there is an ever-increasing pressure to ‘keep up’. Hence, the societal demands and expectations for people to be digitally switched on constantly increase.</p><p>Recent figures from ‘we are social’ (<span>2022</span>) report that those using the internet do so for an average of 6 hours and 37 minutes per day, and our technology use continues to increase. Societally, people's online lives are viewed, by some, as equivalent to, or of even greater significance than, their offline lives. Despite this, digital exclusion and disadvantage remain unevenly distributed across society and markedly higher for people from particular groups, including people with learning disabilities. Moreover, in light of the current coronavirus disease 2019 (COVID-19) pandemic, there has been a rise in reliance on online methods of communication and interaction to maintain social networks and social capital (Caton et al., <span>2022</span>; Chadwick et al., <span>2022</span>).</p><p>How digital inclusion has been researched has developed over time. Initial work focussed on access to information and communication technologies (ICTs), including the internet (Chadwick et al., <span>2013</span>). Although these questions of access and inequity remain important, recent conceptualisations have begun to adopt more nuanced and complex considerations of digital participation (Ågren et al., <span>2020</span>). This includes looking at the ways in which people with learning disabilities engage in digital spaces and places, how they interact with ICT and how ICT is involved and embedded, or not, in their everyday lives.</p><p>Hence, digital inclusion describes a range of topics concerned with equality of access to ICT and its associated benefits and is a core component of social inclusion in the world today (DiMaggio & Ga","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 2","pages":"119-124"},"PeriodicalIF":1.5,"publicationDate":"2023-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12530","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42520393","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}
Julie Eshleman, Jane Seale, Kate Lunness, Ellie Blackburn, Jane Gaunt, Alistair Hammond, Sean Waldron
{"title":"Supporting people with learning disabilities to use technology, frameworks and toolkits, By Jane Seale","authors":"Julie Eshleman, Jane Seale, Kate Lunness, Ellie Blackburn, Jane Gaunt, Alistair Hammond, Sean Waldron","doi":"10.1111/bld.12533","DOIUrl":"10.1111/bld.12533","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 2","pages":"279-282"},"PeriodicalIF":1.5,"publicationDate":"2023-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44094233","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}
Psychogenic nonepileptic seizures (PNES) are attacks that often look like epileptic seizures (ES). Unlike ES, PNES are not triggered by underlying neurological factors. PNES are relatively rare in the general population; however, their prevalence in people with learning disabilities is much higher—up to 10%. Individuals with PNES and learning disabilities often have psychiatric comorbidities, such as anxiety disorders, depression and posttraumatic stress disorder. There are currently no treatment guidelines for PNES in people with or without learning disabilities. However, talking therapies, such as cognitive-behavioural therapy (CBT), are recommended. This study explores the effectiveness of CBT for the treatment of PNES in a woman (Susan) with PNES and learning disabilities.
Methods
We used a single-case experimental design (SCED) to investigate the effectiveness of CBT intervention. Specifically, the withdrawal (also known as ABA) design was applied. The patient's average PNES frequency, as well as idiosyncratic mood measure and standardised outcome measures for people with learning disabilities (Glasgow Anxiety Scale for People with an Intellectual Disability and Mini-Maslow Assessment of Needs Scale-Learning Disabilities), were used to assess the effectiveness of treatment.
Findings
Results show that Susan's monthly PNES frequency reduced from phase A1 (assessment phase) to phase B (treatment phase), and this persisted to the follow-up phase (phase A2). However, the reduction was not statistically significant. The intervention was associated with improvements in Susan's mood, anxiety and quality of life. Reduction of Susan's anxiety was clinically significant.
Conclusions
This SCED study demonstrates that CBT might be associated with reduction of PNES frequency and improvements in general functioning in people with PNES and learning disabilities; however, further research, especially around confounding variables is needed.
{"title":"Cognitive behavioural therapy for psychogenic nonepileptic seizures (PNES) in an adult with a learning disability: A case study","authors":"Jerica Radez, Tom Crossland, Louise Johns","doi":"10.1111/bld.12531","DOIUrl":"10.1111/bld.12531","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Psychogenic nonepileptic seizures (PNES) are attacks that often look like epileptic seizures (ES). Unlike ES, PNES are not triggered by underlying neurological factors. PNES are relatively rare in the general population; however, their prevalence in people with learning disabilities is much higher—up to 10%. Individuals with PNES and learning disabilities often have psychiatric comorbidities, such as anxiety disorders, depression and posttraumatic stress disorder. There are currently no treatment guidelines for PNES in people with or without learning disabilities. However, talking therapies, such as cognitive-behavioural therapy (CBT), are recommended. This study explores the effectiveness of CBT for the treatment of PNES in a woman (Susan) with PNES and learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We used a single-case experimental design (SCED) to investigate the effectiveness of CBT intervention. Specifically, the withdrawal (also known as ABA) design was applied. The patient's average PNES frequency, as well as idiosyncratic mood measure and standardised outcome measures for people with learning disabilities (Glasgow Anxiety Scale for People with an Intellectual Disability and Mini-Maslow Assessment of Needs Scale-Learning Disabilities), were used to assess the effectiveness of treatment.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Results show that Susan's monthly PNES frequency reduced from phase A1 (assessment phase) to phase B (treatment phase), and this persisted to the follow-up phase (phase A2). However, the reduction was not statistically significant. The intervention was associated with improvements in Susan's mood, anxiety and quality of life. Reduction of Susan's anxiety was clinically significant.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This SCED study demonstrates that CBT might be associated with reduction of PNES frequency and improvements in general functioning in people with PNES and learning disabilities; however, further research, especially around confounding variables is needed.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"586-596"},"PeriodicalIF":1.5,"publicationDate":"2023-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44073733","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":"In response to ‘Use of technology by older adults with an intellectual disability in Ireland to support health, well-being and social inclusion during the COVID-19 pandemic’, by Darren McCausland, Mary McCarron and Philip McCallion","authors":"Gosia Kwiatkowska, Satvinder Kaur Dhillon, Kanchan Kerai","doi":"10.1111/bld.12529","DOIUrl":"10.1111/bld.12529","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 2","pages":"191-194"},"PeriodicalIF":1.5,"publicationDate":"2023-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12529","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42276640","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}
Olivia Hewitt, Jon Codd, Karla Maguire, Mathumeera Balendra, Saffiya Tariq
Background
This study investigated the use of a Compassion-Focused Therapy (CFT) group as a psychological intervention for a group of adults with an intellectual disability with a range of psychological issues.
Method
Four clients attended the group, which was facilitated by three trainee Clinical Psychologists. The group consisted of 8 weekly sessions.
Findings
Standardised outcome measures showed an increase in psychological well-being and self-compassion for all participants postintervention. Two participants showed an increase in psychological distress, while two participants reported decreases in this area. Scores on measures of self-criticism fell for two participants, increased for one participant and showed no change for one participant. Qualitative interviews were conducted with postgroup with all group members (clients and facilitators). Thematic analysis identified two superordinate themes relating to the accessibility of the group content, and interpersonal aspects of the group.
Conclusion
The results suggest that clients enjoyed and benefitted from the group. Challenges, such as lack of carer involvement, were identified, and recommendations for future CFT groups are made.
{"title":"A mixed methods evaluation of a compassion-focused therapy group intervention for people with an intellectual disability","authors":"Olivia Hewitt, Jon Codd, Karla Maguire, Mathumeera Balendra, Saffiya Tariq","doi":"10.1111/bld.12528","DOIUrl":"10.1111/bld.12528","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study investigated the use of a Compassion-Focused Therapy (CFT) group as a psychological intervention for a group of adults with an intellectual disability with a range of psychological issues.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Four clients attended the group, which was facilitated by three trainee Clinical Psychologists. The group consisted of 8 weekly sessions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Standardised outcome measures showed an increase in psychological well-being and self-compassion for all participants postintervention. Two participants showed an increase in psychological distress, while two participants reported decreases in this area. Scores on measures of self-criticism fell for two participants, increased for one participant and showed no change for one participant. Qualitative interviews were conducted with postgroup with all group members (clients and facilitators). Thematic analysis identified two superordinate themes relating to the accessibility of the group content, and interpersonal aspects of the group.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The results suggest that clients enjoyed and benefitted from the group. Challenges, such as lack of carer involvement, were identified, and recommendations for future CFT groups are made.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"522-533"},"PeriodicalIF":1.5,"publicationDate":"2023-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44328345","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}
Katie Langer-Shapland, Stephen J. Minton, Nel Richards
Background
There is little research into experiences of menopause voiced by women with learning disabilities, who can be neglected in academic research. There is a particular lack of knowledge around the psychological and social experiences of menopause in this population, and how changes are managed. This study sought to explore these experiences.
Methods
Experiences of five women with lived experience of menopause, being seen by community National Health Services specialising in learning disabilities, were captured with semistructured interviews and analysed using interpretive phenomenological analysis.
Findings
Five superordinate themes were identified, involving the importance of having information about menopause, challenges of periods, observable changes in menopause, the importance of social connection, and managing menopause independently.
Conclusions
This study highlights the need for clinicians and carers to understand the variety of impacts menopause can have on women with learning disabilities, including emotional and social aspects, and the need to initiate conversations regarding menopause and available treatments.
{"title":"‘It should be more outspoken and not hushed away, not like put in a dark box’: An interpretative phenomenological analysis of experiences of menopause voiced by women with learning disabilities","authors":"Katie Langer-Shapland, Stephen J. Minton, Nel Richards","doi":"10.1111/bld.12527","DOIUrl":"10.1111/bld.12527","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>There is little research into experiences of menopause voiced by women with learning disabilities, who can be neglected in academic research. There is a particular lack of knowledge around the psychological and social experiences of menopause in this population, and how changes are managed. This study sought to explore these experiences.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Experiences of five women with lived experience of menopause, being seen by community National Health Services specialising in learning disabilities, were captured with semistructured interviews and analysed using interpretive phenomenological analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Five superordinate themes were identified, involving the importance of having information about menopause, challenges of periods, observable changes in menopause, the importance of social connection, and managing menopause independently.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study highlights the need for clinicians and carers to understand the variety of impacts menopause can have on women with learning disabilities, including emotional and social aspects, and the need to initiate conversations regarding menopause and available treatments.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"509-521"},"PeriodicalIF":1.5,"publicationDate":"2023-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48507273","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}
Inclusive research advocates for the involvement of people with intellectual disabilities to be more than passive participants within the research process.
Methods
This study used a participatory design with proxies to consult with 13 people with profound intellectual and multiple disabilities, on their musical preferences. Four instrumental listening tracks were created for consideration. The expected outcome was that people with profound intellectual and multiple disabilities would contribute to the codesign and development of a Musical Play framework. The study took place in England.
Findings
Proxy reports suggested that elements of music such as the tempo, tonality and instrumentation influenced the participants' responses. Responses were mixed across all tracks, indicating that the musical preferences of people with profound intellectual and multiple disabilities are variable and individualised.
Conclusion
Further exploration of how people with profound intellectual and multiple disabilities can contribute to inclusive research is recommended.
{"title":"Musical preferences of people with profound intellectual and multiple disabilities: A participatory design with proxies","authors":"Rosie Rushton, Lila Kossyvaki, Emmanouela Terlektsi","doi":"10.1111/bld.12524","DOIUrl":"10.1111/bld.12524","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Inclusive research advocates for the involvement of people with intellectual disabilities to be more than passive participants within the research process.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study used a participatory design with proxies to consult with 13 people with profound intellectual and multiple disabilities, on their musical preferences. Four instrumental listening tracks were created for consideration. The expected outcome was that people with profound intellectual and multiple disabilities would contribute to the codesign and development of a Musical Play framework. The study took place in England.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Proxy reports suggested that elements of music such as the tempo, tonality and instrumentation influenced the participants' responses. Responses were mixed across all tracks, indicating that the musical preferences of people with profound intellectual and multiple disabilities are variable and individualised.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Further exploration of how people with profound intellectual and multiple disabilities can contribute to inclusive research is recommended.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"489-498"},"PeriodicalIF":1.5,"publicationDate":"2023-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48414942","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}
Residential transitions have long been recognised as challenging for people with learning disabilities and can be packed with problem stories. Narrative Therapy practices have the potential to centre the voice of people with learning disabilities; to enable alternative stories to be told; and to shine a light on their own and their support system's resources for change.
Methods
Colin, a 36-year-old man with Down syndrome and a learning disability, met with the first author for nine sessions. Narrative Therapy practices (also drawing on systemic ideas) were used, including the Tree of Life, Outsider Witness Practice, Therapeutic Documentation and Definitional Ceremony. Feedback from Colin and the staff team was gathered through qualitative and quantitative means.
Findings
Colin was keen to share his life stories and explored ideas about his “new life”, wanting to “stay strong” and “stay happy”. Staff noted an improvement in household stress and perceived ability to support Colin. An improvement in quality of life was also demonstrated with a self-report questionnaire.
Conclusions
By acknowledging the power of language, narrative practices offer tools to help people with learning disabilities and their support system in making sense of and navigating important life transitions.
{"title":"“I'm a man now”: Using Narrative Therapy to support an adult with Down syndrome transition to a new life","authors":"Alex Lau-Zhu, Judith Mann","doi":"10.1111/bld.12526","DOIUrl":"10.1111/bld.12526","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Residential transitions have long been recognised as challenging for people with learning disabilities and can be packed with problem stories. Narrative Therapy practices have the potential to centre the voice of people with learning disabilities; to enable alternative stories to be told; and to shine a light on their own and their support system's resources for change.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Colin, a 36-year-old man with Down syndrome and a learning disability, met with the first author for nine sessions. Narrative Therapy practices (also drawing on systemic ideas) were used, including the Tree of Life, Outsider Witness Practice, Therapeutic Documentation and Definitional Ceremony. Feedback from Colin and the staff team was gathered through qualitative and quantitative means.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Colin was keen to share his life stories and explored ideas about his “new life”, wanting to “stay strong” and “stay happy”. Staff noted an improvement in household stress and perceived ability to support Colin. An improvement in quality of life was also demonstrated with a self-report questionnaire.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>By acknowledging the power of language, narrative practices offer tools to help people with learning disabilities and their support system in making sense of and navigating important life transitions.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"577-585"},"PeriodicalIF":1.5,"publicationDate":"2023-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45576929","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}
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