Lauren Schwartz, Abigail TurnWald, Madelyn Roth, Theresa V Strong
{"title":"Lived Experiences of Teens and Adults in North America Who Grew Up With a Sibling Diagnosed With Prader Willi Syndrome.","authors":"Lauren Schwartz, Abigail TurnWald, Madelyn Roth, Theresa V Strong","doi":"10.1111/jar.70263","DOIUrl":"10.1111/jar.70263","url":null,"abstract":"<p><strong>Background: </strong>Prader-Willi syndrome (PWS) is a complex disorder with severe behavioural symptoms that affects the entire family. Relatively little research has focused on the lived experiences of siblings growing up in this unique family environment.</p><p><strong>Method: </strong>Semi-structured interviews were performed with 25 siblings of individuals with PWS from North America. Participants reflected on their experiences including interpersonal relationships, impacts on well-being, coping, and relationship with food.</p><p><strong>Results: </strong>Using inductive thematic analysis, we identified several themes: (a) emotion and well-being impacts, (b) impacts on their relationship with food, and (c) relational/social issues. Positive aspects of their family experience and impacts on job path were identified. Key coping resources were highlighted.</p><p><strong>Conclusions: </strong>This study can inform more family-oriented support efforts in PWS care models to include sibling support. The findings suggest sibling support should focus on addressing difficult emotional experiences, problematic eating behaviours, and seeking connection with other siblings with similar experiences.</p>","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"39 3","pages":"e70263"},"PeriodicalIF":1.9,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13263404/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148240768","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Irene Tuffrey-Wijne, Andrea Bruun, Rebecca Anderson-Kittow
{"title":"Using Non-Standard Research Methods to Explore the Perspectives of People With Intellectual Disabilities on Sensitive Topics: A Discussion of the Research Paradigm, Data Collection Methods and Data Analysis.","authors":"Irene Tuffrey-Wijne, Andrea Bruun, Rebecca Anderson-Kittow","doi":"10.1111/jar.70232","DOIUrl":"10.1111/jar.70232","url":null,"abstract":"<p><strong>Background: </strong>To make research on sensitive topics accessible to participants with intellectual disabilities, researchers have used innovative, non-standard data collection methods. However, there is a lack of information about data analysis, validity and reliability.</p><p><strong>Methods: </strong>Using the example of a focus group study on end-of-life care planning with people with intellectual disabilities, the development and implementation of several creative data collection methods and the process of data analysis are described and discussed.</p><p><strong>Results: </strong>Newly developed data collection tools were presented as 'games' that successfully elicited participant perspectives. Data analysis involved the Framework method within an interpretivist phenomenological research paradigm. It incorporated extensive team discussions, including researchers and advisors with intellectual disabilities.</p><p><strong>Conclusion: </strong>Any activity can become a valid data collection tool if it fits the study's research paradigm, has a clear rationale, is co-developed and tested with people with intellectual disabilities and if the analytical process is clearly described.</p>","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"39 3","pages":"e70232"},"PeriodicalIF":1.9,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13128306/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147791274","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
T I M Hilgenkamp, A Oppewal, L C Chien, D A M Maes-Festen
{"title":"Immediate and Underlying Causes of Death and Survival Rates in Aging Adults With Down Syndrome.","authors":"T I M Hilgenkamp, A Oppewal, L C Chien, D A M Maes-Festen","doi":"10.1111/jar.70246","DOIUrl":"10.1111/jar.70246","url":null,"abstract":"<p><strong>Background: </strong>To describe immediate and underlying causes of mortality (using ICD-10 codes) and survival rates of aging adults with Down syndrome (Ds).</p><p><strong>Method: </strong>This secondary analysis used the Healthy Aging and Intellectual Disabilities cohort. Adults with Ds (n = 149, ≥ 50 years at baseline) were matched 1:1 to adults with intellectual disabilities without Ds on age, sex and level of intellectual disability. Follow-up was ~10 years post-baseline, or at death.</p><p><strong>Results: </strong>The most common immediate and underlying causes of death in adults with Ds were respiratory diseases/infections, followed by cardiovascular disease and neuropsychiatric conditions. Unknown causes accounted for 29%-50% of deaths. Adults with Ds had higher mortality than matched comparators (HR = 5.05, 95% CI 3.10-7.47), increasing significantly with each year of age (HR = 1.08/year, 95% CI 1.04-1.11).</p><p><strong>Conclusion: </strong>Respiratory diseases, cardiovascular and neuropsychiatric conditions are important contributors to mortality in older adults with Ds, but large numbers of missing causes warrant cautious interpretation.</p>","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"39 3","pages":"e70246"},"PeriodicalIF":1.9,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13170638/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147935655","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Avra Selick, Soumya Mishra, Louisa Lok Yee Man, Lee Steel, Yona Lunsky, Carly Magnacca, Melanie Penner, Jonathan Weiss, Nicole Bobbette, Kendra Thomson, Kenneth Fung, Johanna Lake
{"title":"Community Implementation of a Clinician and Caregiver Co-Led Programme to Promote the Wellbeing of Family Caregivers of Individuals With Intellectual and Developmental Disabilities.","authors":"Avra Selick, Soumya Mishra, Louisa Lok Yee Man, Lee Steel, Yona Lunsky, Carly Magnacca, Melanie Penner, Jonathan Weiss, Nicole Bobbette, Kendra Thomson, Kenneth Fung, Johanna Lake","doi":"10.1111/jar.70233","DOIUrl":"10.1111/jar.70233","url":null,"abstract":"<p><strong>Background: </strong>This study evaluated the feasibility of implementing Caring for the Caregiver-Acceptance and Commitment Training (CC-ACT), an evidence-based programme to improve the wellbeing of caregivers of individuals with intellectual and developmental disabilities.</p><p><strong>Methods: </strong>Guided by the RE-AIM framework, this study utilised participant surveys, focus groups with programme providers and fidelity checklists to evaluate CC-ACT implementation in 11 Canadian organisations.</p><p><strong>Results: </strong>Across participating organisations, 18 programmes were delivered to 195 caregivers. Programme fidelity was generally high, with a mean fidelity score across organisations of 91.8%. Organisations expressed strong alignment between the CC-ACT model and their values, citing benefits of the co-facilitation approach. Participants similarly reported high acceptability of the model. However, some concerns were reported related to programme accessibility and sustainability.</p><p><strong>Conclusion: </strong>CC-ACT is feasible to implement in diverse community settings, though adaptation may be required to ensure accessibility for all caregivers. Centralised infrastructure is needed for long-term sustainability.</p>","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"39 3","pages":"e70233"},"PeriodicalIF":1.9,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13125383/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147791333","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Carmen Gutiérrez-Cruz, Francisco J Ruiz-Perálvarez, Indya Del-Cuerpo, Luis Javier Chirosa-Ríos, Danica Janicijevic
{"title":"Effect of Dual-Task Training on Cognitive Function and Physical Condition in Adults With Intellectual Disabilities.","authors":"Carmen Gutiérrez-Cruz, Francisco J Ruiz-Perálvarez, Indya Del-Cuerpo, Luis Javier Chirosa-Ríos, Danica Janicijevic","doi":"10.1111/jar.70227","DOIUrl":"10.1111/jar.70227","url":null,"abstract":"<p><strong>Background: </strong>This randomized controlled trial with repeated measures examined the effects of a 21-week dual-task training (DTT) program on choice reaction time (CRT), postural control, strength and body composition in individuals with intellectual disabilities.</p><p><strong>Method: </strong>Fifty-seven participants with mild to moderate intellectual disability were assigned to an experimental or control group. The experimental group completed 63 training sessions, with evaluations at 12 and 21 weeks, while the control group carried out their regular activities.</p><p><strong>Results: </strong>A significant reduction in CRT (p < 0.005) and improvements in postural control under dual-task (DT) conditions (p ≤ 0.041) were observed with no benefits for DT cost. Mean and maximum strength increased after 12 and 21 weeks (p ≤ 0.001). Changes in body composition were characterized by an increase in the percentage of muscle mass (p ≤ 0.001) and a reduction in fat mass (p = 0.010).</p><p><strong>Conclusions: </strong>These findings support the effectiveness of DTT for improving CRT and strength in individuals with intellectual disabilities.</p>","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"39 2","pages":"e70227"},"PeriodicalIF":1.9,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13088943/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147701051","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Kim Ulvin, Laila Tingvold, Karina Aase, Siv Fladsrud Magnussen
{"title":"Residential Transitions in Supported Living: Experiences of Adults With Intellectual Disabilities and Parents.","authors":"Kim Ulvin, Laila Tingvold, Karina Aase, Siv Fladsrud Magnussen","doi":"10.1111/jar.70225","DOIUrl":"10.1111/jar.70225","url":null,"abstract":"<p><strong>Background: </strong>This article explores how adults with intellectual disabilities and a corresponding parent group experience residential transitions to and within co-located supported housing in Norway.</p><p><strong>Method: </strong>We conducted 12 semi-structured interviews and a supplementary focus group interview and analysed the data using reflexive thematic analysis.</p><p><strong>Results: </strong>Two overarching themes were developed, (1) First, find a place: a long and uncertain search marked by scarce options, opaque entitlements, and unclear responsibilities. (2) Settling in(to) a constructed home: evolving negotiation around role and agency, negotiations over who has to adjust to whom, and coping with aspirations and limitations related to future mobility amid the immersive potential of co-located supported housing.</p><p><strong>Conclusion: </strong>Residential transitions shape more than a single move. They influence perspectives on future residential mobility and aspirations for living arrangements. Improved communication about rights, eligibility thresholds, and realistic timelines may reduce disillusionment and improve experiences with transitions.</p>","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"39 2","pages":"e70225"},"PeriodicalIF":1.9,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13058510/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147635217","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jaehee Yi, Min Ah Kim, Seong Young Lee, Shinyeong Hwang, Chaerim Park
{"title":"'I Know Death': Perceptions and Attitudes Towards Death Among Middle-Aged Adults With Intellectual Disabilities in South Korea.","authors":"Jaehee Yi, Min Ah Kim, Seong Young Lee, Shinyeong Hwang, Chaerim Park","doi":"10.1111/jar.70230","DOIUrl":"10.1111/jar.70230","url":null,"abstract":"<p><strong>Background: </strong>For adults with intellectual disabilities, their understanding of and preparation for death present unique challenges. This study explored how middle-aged adults with intellectual disabilities perceive death.</p><p><strong>Method: </strong>Using purposive sampling, 21 middle-aged adults with intellectual disabilities who had experienced parental bereavement were recruited for interviews.</p><p><strong>Results: </strong>Participants conveyed diverse interpretations and understandings of death. The reflective process deepened their emotional engagement with the concept and fostered acceptance of their mortality. They integrated the reflections into their life, striving to live with purpose and seek a fulfilling life.</p><p><strong>Conclusions: </strong>Study findings emphasise how death perceptions, both cognitive and emotional, shaped participants' attitudes towards mortality and influenced their approach to daily life. The resulting insights can inform the development of culturally tailored interventions that promote communication about death and dying while encouraging acceptance of mortality in later life.</p>","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"39 2","pages":"e70230"},"PeriodicalIF":1.9,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13088944/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147700998","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mary Bushell, Teresa Winata, Donna Gillies, Macey Barratt
{"title":"An Australian Co-Designed Template for Accessible Medicines Information for People With Intellectual Disability.","authors":"Mary Bushell, Teresa Winata, Donna Gillies, Macey Barratt","doi":"10.1111/jar.70231","DOIUrl":"10.1111/jar.70231","url":null,"abstract":"<p><strong>Background: </strong>People with intellectual disability often experience barriers to accessing and understanding medicines information, limiting informed decision-making and safe medicine use. This study aimed to co-design an accessible, easy-read medicines information leaflet template using psychotropic medicines as an initial case study.</p><p><strong>Method: </strong>A qualitative constructivist grounded theory approach was used. Six focus groups were conducted (n = 31). Participants reviewed existing medicine leaflets and provided feedback on readability, format, and content. Data was analysed thematically to identify key features required for accessible design.</p><p><strong>Results: </strong>Two core domains were identified: how information is presented and what information is included. Participants prioritised short sentences, large font, supportive visuals, and easy-read language, alongside practical, personalised content about medicine purpose, dosing, side effects, and help seeking.</p><p><strong>Conclusions: </strong>Co-designed with people with intellectual disability, this template aims to improve health literacy and support informed medicines use. Policy reform and outcomes focused evaluation are warranted.</p>","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"39 2","pages":"e70231"},"PeriodicalIF":1.9,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13092644/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147724832","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hayley Kavanagh, Sarah Meegan, Nathan Gavigan, Valerie Carson, Morgan Potter, Mika Manninen
{"title":"Fundamental Movement Skill Development in Children With Intellectual Disabilities: An 8-Week Coach-Led and Parent-Supported Intervention.","authors":"Hayley Kavanagh, Sarah Meegan, Nathan Gavigan, Valerie Carson, Morgan Potter, Mika Manninen","doi":"10.1111/jar.70228","DOIUrl":"10.1111/jar.70228","url":null,"abstract":"<p><strong>Background: </strong>Given the heightened risk of poor motor skill development in children with intellectual disabilities, fundamental movement skill (FMS) interventions have become a critical approach for improving their motor competence, aiming to bridge the proficiency gap and mitigate the negative health outcomes associated with motor skill deficits.</p><p><strong>Method: </strong>This study evaluated the effectiveness of an 8-week intervention designed to improve the FMS proficiency of children with intellectual disabilities (n = 82) across three conditions, with active involvement of both trained coaches (n = 23) and parents (n = 16). Participants were assessed using TGMD-3 and BOT-2. Parents completed bi-weekly check-ins to report on adherence.</p><p><strong>Results: </strong>Compared with the control group, children in the FMS + Parents condition demonstrated significant improvements in object control skills, from pre to post-intervention.</p><p><strong>Conclusions: </strong>Parents play a crucial role in the FMS development of children with intellectual disabilities with improvements seen in just 8 weeks.</p>","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"39 2","pages":"e70228"},"PeriodicalIF":1.9,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13086564/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147700981","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lucy Yates, Andrea Flood, Grace Talbot, Alys Wyn Griffiths
{"title":"Exploring the Experiences of Caring for a Family Member With Intellectual Disabilities Displaying Behaviours That Challenge and/or Mental Health Difficulties Within the United Kingdom: A Meta-Ethnographic Review.","authors":"Lucy Yates, Andrea Flood, Grace Talbot, Alys Wyn Griffiths","doi":"10.1111/jar.70226","DOIUrl":"10.1111/jar.70226","url":null,"abstract":"<p><strong>Introduction: </strong>This review aims to synthesise qualitative literature of experiences of caregiving for family members with intellectual disabilities displaying behaviours that challenge and/or mental health difficulties, within the United Kingdom.</p><p><strong>Method: </strong>Following Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, five electronic databases (APA PsychInfo, Web of Science, PubMed, MedLine and CINAHL) were systematically searched. Analysis followed a meta-ethnographic approach.</p><p><strong>Results: </strong>Fourteen studies were included. Three key themes and a line of argument were developed: (i) Carers Wear Many Hats; (ii) Square Services, Round Needs; (iii) A Journey of Many Lows and Some Highs.</p><p><strong>Conclusions: </strong>Carers highlighted psychosocial strains of the multi-faceted caregiving roles-including advocacy, education and protection. One-size-fits-all approaches meant support services were more burdensome than helpful, leaving carers feeling powerless and marginalised, with limited reports of good practice. The findings can inform care services about supporting these families and individuals with idiosyncratic and intersecting needs.</p>","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"39 2","pages":"e70226"},"PeriodicalIF":1.9,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13088942/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147700967","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}