Rosemary MacHale, Emma NíNeill, Cathy Wyer, Emma Corley, Brian E. McGuire
Background
Despite the increased risk for people with an intellectual disability developing dementia, post-diagnostic psychosocial supports such as cognitive stimulation therapy (CST) are not routinely offered and there is limited research examining this intervention with people with intellectual disabilities. The aim of this study was to explore the feasibility of CST for older adults with intellectual disability to support active ageing.
Methods
Five client participants attended a 14-session CST group and four staff attended a focus group. Reflexive thematic analysis was used to investigate the client and staff narratives.
Results
Three key themes were generated: (1) Brain Health, (2) Connecting with others, and (3) Barriers and Enablers.
Conclusion
Findings indicated the suitability of CST as a way of supporting active ageing for older adults with intellectual disability. This study adds to the growing knowledge about service provision for older adults and their changing needs as they age and identifies clinical implications such as staff training to support intervention adherence.
{"title":"Preliminary feasibility study of a cognitive stimulation therapy programme for older adults with an intellectual disability","authors":"Rosemary MacHale, Emma NíNeill, Cathy Wyer, Emma Corley, Brian E. McGuire","doi":"10.1111/jar.13291","DOIUrl":"10.1111/jar.13291","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Despite the increased risk for people with an intellectual disability developing dementia, post-diagnostic psychosocial supports such as cognitive stimulation therapy (CST) are not routinely offered and there is limited research examining this intervention with people with intellectual disabilities. The aim of this study was to explore the feasibility of CST for older adults with intellectual disability to support active ageing.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Five client participants attended a 14-session CST group and four staff attended a focus group. Reflexive thematic analysis was used to investigate the client and staff narratives.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three key themes were generated: (1) Brain Health, (2) Connecting with others, and (3) Barriers and Enablers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Findings indicated the suitability of CST as a way of supporting active ageing for older adults with intellectual disability. This study adds to the growing knowledge about service provision for older adults and their changing needs as they age and identifies clinical implications such as staff training to support intervention adherence.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13291","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141984120","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Deborah Chinn, Tony Levitan, Andrew Power, Katy Brickley, Shalim Ali
Background
Shared housing for adults with intellectual disabilities with staff support, is a common housing model internationally. We explored an overlooked aspect of group homes, namely the extent to which they enable a sense of ‘feeling at home’ for residents.
Method
A diverse group of 19 housemates participated in a photovoice study. Participants took photos in their homes and discussed them in individual interviews and in groups. Data was analysed using reflexive thematic analysis.
Results
Residents' experience of home was multi-dimensional. ‘Feeling at home’ related to home as a site of identity cultivation (personal home); physical comfort or ‘misfitting’ (physical home) and home as the locus of key relationships (social home).
Conclusion
Achieving a sense of ‘feeling at home’ requires engagement in practices of home-making. Many of our participants required support from staff to engage in these practices. For some housemates their experience of home was conditional and precarious.
{"title":"What does ‘feeling at home’ mean for adults with intellectual disabilities living in group homes in England?","authors":"Deborah Chinn, Tony Levitan, Andrew Power, Katy Brickley, Shalim Ali","doi":"10.1111/jar.13274","DOIUrl":"10.1111/jar.13274","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Shared housing for adults with intellectual disabilities with staff support, is a common housing model internationally. We explored an overlooked aspect of group homes, namely the extent to which they enable a sense of ‘feeling at home’ for residents.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A diverse group of 19 housemates participated in a photovoice study. Participants took photos in their homes and discussed them in individual interviews and in groups. Data was analysed using reflexive thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Residents' experience of home was multi-dimensional. ‘Feeling at home’ related to home as a site of identity cultivation (personal home); physical comfort or ‘misfitting’ (physical home) and home as the locus of key relationships (social home).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Achieving a sense of ‘feeling at home’ requires engagement in practices of home-making. Many of our participants required support from staff to engage in these practices. For some housemates their experience of home was conditional and precarious.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13274","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141984121","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Kaya A, Yıldız G. “I think they do not know how to lie:” The perceptions of legal support staff about person with intellectual disabilities/autism in Turkish legal system. Journal of Applied Research in Intellectual Disabilities. 2023;36(3):516–528.
We apologise very much for this error.
Kaya A, Yıldız G. "我认为他们不知道如何撒谎："法律支持人员对土耳其法律系统中智障/自闭症患者的看法。智障应用研究期刊》。2023;36(3):516-528.We apologize very much for this error.
{"title":"Correction to “I think they do not know how to lie:” The perceptions of legal support staff about person with intellectual disabilities/autism in Turkish legal system","authors":"","doi":"10.1111/jar.13271","DOIUrl":"10.1111/jar.13271","url":null,"abstract":"<p>Kaya A, Yıldız G. “I think they do not know how to lie:” The perceptions of legal support staff about person with intellectual disabilities/autism in Turkish legal system. <i>Journal of Applied Research in Intellectual Disabilities</i>. 2023;36(3):516–528.</p><p>We apologise very much for this error.</p>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13271","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141977365","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Individuals with intellectual disabilities experience barriers to quality healthcare. To reduce this disparity, equipping medical trainees with the knowledge and skills required for treating this patient population is critical. Our aim is to describe the breadth of instructional interventions and identify gaps in intellectual disability medical education curricula.
Method
Using scoping review methods, the intellectual disability programmes described in 27 articles were evaluated and their coverage of the six core competencies on disability for health care education was examined.
Results
The most frequently represented core competencies were disability conceptual frameworks, professionalism and communication, and clinical assessment, which were, in most programmes, fulfilled by activities involving individuals with intellectual disabilities. Uneven competency coverage warrants consideration.
Conclusions
Considerable variabilities exist in medical school curricula on intellectual disabilities. Using core competencies on disability for health care education for curricular design and evaluation would provide a coherent training experience in this important area.
{"title":"How are medical students learning to care for patients with intellectual disabilities? A scoping review","authors":"Hana Anderson, Amy C. Studer","doi":"10.1111/jar.13290","DOIUrl":"10.1111/jar.13290","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disabilities experience barriers to quality healthcare. To reduce this disparity, equipping medical trainees with the knowledge and skills required for treating this patient population is critical. Our aim is to describe the breadth of instructional interventions and identify gaps in intellectual disability medical education curricula.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Using scoping review methods, the intellectual disability programmes described in 27 articles were evaluated and their coverage of the six core competencies on disability for health care education was examined.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The most frequently represented core competencies were disability conceptual frameworks, professionalism and communication, and clinical assessment, which were, in most programmes, fulfilled by activities involving individuals with intellectual disabilities. Uneven competency coverage warrants consideration.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Considerable variabilities exist in medical school curricula on intellectual disabilities. Using core competencies on disability for health care education for curricular design and evaluation would provide a coherent training experience in this important area.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-08-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13290","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141918255","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ariana M. Mastrogiannis, Caren Steinway, Telmo C. Santos, Jack Chen, John Berens, Thomas Davis, Michelle Cornacchia, Jason Woodward, Ilka Riddle, Brittany Spicer, Charmaine Wright, Lee A. Lindquist, Sophia Jan
Background
Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood.
Method
Caregivers (n = 405) of individuals with intellectual and developmental disabilities across four states (NY, OH, TX, and PA) completed an online survey.
Results
Caregivers reported a moderate degree of burden and susceptibility of stress-induced health breakdown. Despite controlling for the activities of daily living of the care recipient, caregivers of individuals with Medicaid Waiver services reported greater difficulty managing medications (p = .013) and finding paid help (p < .001) than caregivers of individuals without services.
{"title":"Medicaid long-term services and supports and caregiving needs of caregivers of individuals with intellectual and developmental disabilities","authors":"Ariana M. Mastrogiannis, Caren Steinway, Telmo C. Santos, Jack Chen, John Berens, Thomas Davis, Michelle Cornacchia, Jason Woodward, Ilka Riddle, Brittany Spicer, Charmaine Wright, Lee A. Lindquist, Sophia Jan","doi":"10.1111/jar.13289","DOIUrl":"10.1111/jar.13289","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Caregivers (<i>n</i> = 405) of individuals with intellectual and developmental disabilities across four states (NY, OH, TX, and PA) completed an online survey.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Caregivers reported a moderate degree of burden and susceptibility of stress-induced health breakdown. Despite controlling for the activities of daily living of the care recipient, caregivers of individuals with Medicaid Waiver services reported greater difficulty managing medications (<i>p</i> = .013) and finding paid help (<i>p</i> < .001) than caregivers of individuals without services.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13289","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141894955","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
R. C. Asher, V. A. Shrewsbury, B. Innes, A. Fitzpatrick, S. Simmonds, V. Cross, A. Rose, E. Hinton, C. E. Collins
Background
Culinary nutrition education can support improved diet-related health and wellbeing. This pre-post pilot study aimed to assess feasibility and acceptability of an eight-session culinary nutrition programme, the Food and Lifestyle Information Programme (FLIP), for adults with mild-to-moderate intellectual disability. A secondary aim was to evaluate preliminary programme effectiveness.
Method
Participants were recruited through a disability service provider. Feasibility measures were: recruitment and retention; implementation; engagement and participation; adverse outcomes; and feasibility of outcome measures. Acceptability was assessed using an interactive process evaluation. Effectiveness measures included cooking frequency, cooking and food skill confidence and diet quality.
Results
Six of eight participants completed the intervention with high attendance and programme engagement. FLIP was well received by participants and support workers. No adverse outcomes occurred. Diet quality was feasible to assess.
Conclusions
Findings can inform content, delivery and evaluation of future culinary nutrition programmes for adults with mild-to-moderate intellectual disability.
{"title":"Feasibility and acceptability of a culinary nutrition programme for adults with mild-to-moderate intellectual disability: FLIP Food and Lifestyle Information Programme","authors":"R. C. Asher, V. A. Shrewsbury, B. Innes, A. Fitzpatrick, S. Simmonds, V. Cross, A. Rose, E. Hinton, C. E. Collins","doi":"10.1111/jar.13281","DOIUrl":"10.1111/jar.13281","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Culinary nutrition education can support improved diet-related health and wellbeing. This pre-post pilot study aimed to assess feasibility and acceptability of an eight-session culinary nutrition programme, the Food and Lifestyle Information Programme (FLIP), for adults with mild-to-moderate intellectual disability. A secondary aim was to evaluate preliminary programme effectiveness.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Participants were recruited through a disability service provider. Feasibility measures were: recruitment and retention; implementation; engagement and participation; adverse outcomes; and feasibility of outcome measures. Acceptability was assessed using an interactive process evaluation. Effectiveness measures included cooking frequency, cooking and food skill confidence and diet quality.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Six of eight participants completed the intervention with high attendance and programme engagement. FLIP was well received by participants and support workers. No adverse outcomes occurred. Diet quality was feasible to assess.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Findings can inform content, delivery and evaluation of future culinary nutrition programmes for adults with mild-to-moderate intellectual disability.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13281","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141894954","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Research suggests that a better awareness of how staff who directly support people with intellectual disabilities experience their working relationships, will contribute to understanding staff wellbeing and the quality of care they offer. This study aimed to gain insights into the lived experiences of support workers in supported living services in England.
Method
Six support workers participated in semi-structured interviews, about their working relationships with service-users and colleagues. Data was analysed using interpretative phenomenological analysis.
Results
Six interconnected themes emerged: The essence of good relationships; a trusting relationship as the vehicle for meeting service-users' needs; belonging to the support team; the organisational context of relationships; the social context of relationships; ‘a fine balancing act’.
Conclusions
The findings provide insights into staff wellbeing, indicating that developing supportive, trusting relationships with both service-users and colleagues, plays an important role in delivering effective care. Potential implications for service providers are discussed.
{"title":"Exploring the experience of working relationships for support workers of adults with intellectual disabilities","authors":"Rachel D'Sa, Ian Fletcher, Stephen Field","doi":"10.1111/jar.13285","DOIUrl":"10.1111/jar.13285","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Research suggests that a better awareness of how staff who directly support people with intellectual disabilities experience their working relationships, will contribute to understanding staff wellbeing and the quality of care they offer. This study aimed to gain insights into the lived experiences of support workers in supported living services in England.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Six support workers participated in semi-structured interviews, about their working relationships with service-users and colleagues. Data was analysed using interpretative phenomenological analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Six interconnected themes emerged: The essence of good relationships; a trusting relationship as the vehicle for meeting service-users' needs; belonging to the support team; the organisational context of relationships; the social context of relationships; ‘a fine balancing act’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings provide insights into staff wellbeing, indicating that developing supportive, trusting relationships with both service-users and colleagues, plays an important role in delivering effective care. Potential implications for service providers are discussed.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13285","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141876897","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Marleen F. Westerveld, Stephanie A. Malone, Sally Clendon, Rachael Bowen, Georgia Hayley, Jessica Paynter
Background
As a group, autistic children with high support needs (with adaptive functioning in the range of an intellectual disability) are at risk of significant literacy difficulties. We investigated the parent-reported home literacy environment of this group of children.
Method
Sixty-two parents of autistic children (4.5 to 18.25 years) attending an autism-specific school completed a home literacy survey reporting on their child's: (1) alphabet knowledge, (2) interest in reading, (3) activities/interactions around books, (4) reading ability, and (5) writing ability.
Results
We found significant positive correlations between parent-reported child interest in reading and literacy-related interactions and skills, but not with child age. Children using spoken words to communicate obtained significantly greater scores on four home-literacy subscales, but not on reading interest.
Conclusions
A better understanding of the home literacy activities of autistic children with high-support needs is needed to inform educational practices aimed at promoting literacy development in this vulnerable population.
{"title":"The home literacy environment of school-age autistic children with high support needs","authors":"Marleen F. Westerveld, Stephanie A. Malone, Sally Clendon, Rachael Bowen, Georgia Hayley, Jessica Paynter","doi":"10.1111/jar.13284","DOIUrl":"10.1111/jar.13284","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>As a group, autistic children with high support needs (with adaptive functioning in the range of an intellectual disability) are at risk of significant literacy difficulties. We investigated the parent-reported home literacy environment of this group of children.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Sixty-two parents of autistic children (4.5 to 18.25 years) attending an autism-specific school completed a home literacy survey reporting on their child's: (1) alphabet knowledge, (2) interest in reading, (3) activities/interactions around books, (4) reading ability, and (5) writing ability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We found significant positive correlations between parent-reported child interest in reading and literacy-related interactions and skills, but not with child age. Children using spoken words to communicate obtained significantly greater scores on four home-literacy subscales, but not on reading interest.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>A better understanding of the home literacy activities of autistic children with high-support needs is needed to inform educational practices aimed at promoting literacy development in this vulnerable population.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13284","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141876898","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Katherine L. Long, Atefeh Karimi, Antonella Mini, Dionne P. Stephens, Eliza L. Nelson
Background
Parents' conceptualizations of adulthood for their emerging adults with Down syndrome have the potential to impact the transition planning process as families prepare for life after graduation.
Aims
This study aimed to explore parent perceptions of the meaning of adulthood for their emerging adults with Down syndrome.
Methods
In this qualitative study, we interviewed 11 parents of emerging adults with Down syndrome using phenomenological methodology and analysed these data using thematic analysis.
Results
Three topics emerged: (1) Parents' constructions of the meaning of adulthood; (2) Parents' perceptions about the transition to adulthood; and (3) Parents' perceptions of current adult life skills. Ten themes arose out of these topics.
Conclusions
Parents expressed ambivalence about the meaning of adulthood for their emerging adults with Down syndrome, sharing that in some ways they were adults and in others they were not. The meaning of adulthood was closely tied to obtained skills, particularly those related to personal safety.
{"title":"The meaning of adulthood for emerging adults with Down syndrome: Parent perspectives on relevant skills","authors":"Katherine L. Long, Atefeh Karimi, Antonella Mini, Dionne P. Stephens, Eliza L. Nelson","doi":"10.1111/jar.13286","DOIUrl":"10.1111/jar.13286","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Parents' conceptualizations of adulthood for their emerging adults with Down syndrome have the potential to impact the transition planning process as families prepare for life after graduation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aims</h3>\u0000 \u0000 <p>This study aimed to explore parent perceptions of the meaning of adulthood for their emerging adults with Down syndrome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>In this qualitative study, we interviewed 11 parents of emerging adults with Down syndrome using phenomenological methodology and analysed these data using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three topics emerged: (1) Parents' constructions of the meaning of adulthood; (2) Parents' perceptions about the transition to adulthood; and (3) Parents' perceptions of current adult life skills. Ten themes arose out of these topics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Parents expressed ambivalence about the meaning of adulthood for their emerging adults with Down syndrome, sharing that in some ways they were adults and in others they were not. The meaning of adulthood was closely tied to obtained skills, particularly those related to personal safety.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141794193","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Peter E. Langdon, Magdalena M. Apanasionok, Emma Scripps, Alastair Barrowcliff, Asit Biswas, Karen Bunning, Cheryl Burbidge, Katherine Byron-Daniel, Alex Cookson, Sarah Croom, Malwina Filipczuk, David Gillespie, Richard P. Hastings, Andrew Jahoda, Rachel McNamara, Lawrence Patterson, Dheeraj Rai, Robyn Steward, Kylie M. Gray
Background
The aim of this feasibility study was to adapt and model a behavioural intervention for anxiety with autistic adults with moderate to severe intellectual disabilities.
Method
Twenty-eight autistic adults with moderate or severe intellectual disabilities, 37 carers, and 40 therapists took part in this single-group non-randomised feasibility study designed to test intervention feasibility and acceptability, outcome measures, and research processes.
Results
The intervention was judged as feasible and acceptable by autistic adults with intellectual disabilities, carers, and therapists. Minor intervention revisions were suggested. Carers completed 100% of outcome measures and the missing data rate was low. Complying with legislation governing the inclusion of participants who lack capacity to decide whether they wanted to take part in this study led to an average 5-week enrolment delay.
Conclusion
The intervention and associated study processes were judged to be feasible and acceptable and should now be tested within a larger randomised trial.
{"title":"Behavioural interventions to treat anxiety in adults with autism and moderate to severe intellectual disabilities: The BEAMS-ID feasibility study","authors":"Peter E. Langdon, Magdalena M. Apanasionok, Emma Scripps, Alastair Barrowcliff, Asit Biswas, Karen Bunning, Cheryl Burbidge, Katherine Byron-Daniel, Alex Cookson, Sarah Croom, Malwina Filipczuk, David Gillespie, Richard P. Hastings, Andrew Jahoda, Rachel McNamara, Lawrence Patterson, Dheeraj Rai, Robyn Steward, Kylie M. Gray","doi":"10.1111/jar.13282","DOIUrl":"10.1111/jar.13282","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The aim of this feasibility study was to adapt and model a behavioural intervention for anxiety with autistic adults with moderate to severe intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Twenty-eight autistic adults with moderate or severe intellectual disabilities, 37 carers, and 40 therapists took part in this single-group non-randomised feasibility study designed to test intervention feasibility and acceptability, outcome measures, and research processes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The intervention was judged as feasible and acceptable by autistic adults with intellectual disabilities, carers, and therapists. Minor intervention revisions were suggested. Carers completed 100% of outcome measures and the missing data rate was low. Complying with legislation governing the inclusion of participants who lack capacity to decide whether they wanted to take part in this study led to an average 5-week enrolment delay.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The intervention and associated study processes were judged to be feasible and acceptable and should now be tested within a larger randomised trial.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"37 5","pages":""},"PeriodicalIF":2.1,"publicationDate":"2024-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13282","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141794192","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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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