Journal of Applied Research in Intellectual Disabilities最新文献

{"title":"Narratives From Female Siblings of Adults With Intellectual and Developmental Disabilities: A Photovoice Study on Identity and Growth Experiences in South Korea","authors":"Min Ah Kim,&nbsp;Jaehee Yi,&nbsp;Shinyeong Hwang,&nbsp;Jimin Sung,&nbsp;Seong Young Lee,&nbsp;Heejin Kim","doi":"10.1111/jar.70029","DOIUrl":"https://doi.org/10.1111/jar.70029","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study sought a holistic understanding of lived experiences of individuals with a sibling who has intellectual and developmental disabilities using photovoice.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Seven adult female siblings of individuals with intellectual and developmental disabilities in South Korea engaged in six weekly photovoice sessions, including an orientation session, phototaking on participant-driven themes, and four group discussion sessions in which they shared their photos.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Thirteen subthemes related to four primary themes highlighted their experiences. Although these siblings faced pressure from the responsibilities of caregiving, they described growth and reflection on their identities, subsequent shifts in perspectives, and finding a balance between self-care and fulfilling responsibilities to maintain their love for their sibling.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Social work professionals should acknowledge their challenges and growth and help them find balance in their life and caregiving role. It is also important to address their unique needs by considering the intersection of gender, culture, and disability.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143554583","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}

{"title":"Semi-Structured Interview Guide Development and Validation to Explore Parental Experiences and Expectations From Physiotherapy for Children With Down Syndrome","authors":"Fathimath Akhila,&nbsp;Asir John Samuel","doi":"10.1111/jar.70030","DOIUrl":"https://doi.org/10.1111/jar.70030","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Existing literature failed to explore the parental expectations and experiences from physiotherapy for children with Down syndrome. Hence, we aimed to validate a semi-structured interview guide to explore parental experiences and expectations from physiotherapy for children with Down syndrome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A 28-item interview guide was reduced to a six-item interview guide and validated through three rounds of Delphi survey in experts with prior experience in children with disabilities. The first and second rounds failed to meet the S-CVI/Ave threshold of 0.90, leading to revisions based on feedback.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>After suggestions were received from 10 experts with an average of 2 years of experience in dealing with children with Down syndrome, a six-item interview guide was finalised, with I-CVI of 0.78–1 and S-CVI of 0.9.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The generated interview guide aimed to explore the experiences and expectations of parents of children with Down syndrome undergoing physiotherapy, found to be valid.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143555014","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}

{"title":"Evaluating Patients With Mucopolysaccharidosis Type III: A Scoping Review on Diagnostic and Follow-Up Approaches","authors":"Agustina Sabino Romagnoli,&nbsp;Letícia Nunes Campos,&nbsp;Daniel Fernandez-Guzman,&nbsp;Sofia Wagemaker,&nbsp;Federico Fernandez Zelcer,&nbsp;Carlos Stegmann,&nbsp;Carina F. Argüelles,&nbsp;Laura F. Sosa,&nbsp;Ayla Gerk,&nbsp;Jorgelina Stegmann","doi":"10.1111/jar.70024","DOIUrl":"https://doi.org/10.1111/jar.70024","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Mucopolysaccharidosis type III (MPS III) is a rare lysosomal storage disease with systemic complications. This scoping review aimed to synthesise evidence regarding methods to diagnose and monitor MPS III.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We searched 10 databases for English and Spanish citations published from 2017 to 2022. Our study focused on human-based research that reported methods to diagnose and monitor MPS III, including experimental, quasi-experimental, observational studies, reviews, and guidelines. We followed PRISMA-ScR guidelines for screening and data extraction. Descriptive statistics and qualitative synthesis were used for analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We included 35 eligible articles. Most studies were conducted in Europe and Central Asia (17/35, 48.6%) and constituted case reports (19/37, 51.4%). Clinical symptoms were reported in 30 articles and predominantly pertained to the nervous system (25/30, 83.3%), including intellectual disability (19/30, 63.3%), movement incoordination (17/30, 56.6%), and behavioural issues (16/30, 53.3%). Diagnostic methods (23/35, 65.7%) featured genetic testing and biochemical assays, including GAG measurement in urine. Brain MRI was the most recorded imaging study (11/20, 55.0%), while electrographic studies (10/35, 28.5%) encompassed electrocardiogram (5/10, 50%), electroencephalogram, and audiometry (3/10, 30% each). Scales and questionnaires (8/35, 22.8%) were reported, with the Bayley Scales of Infant Development being the most described (4/8, 50%).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Our study comprehensively overviews the contributions of diagnostic and monitoring methods for MPS III. Our findings can guide clinicians in providing evidence-based care for this rare disease.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143533952","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}

{"title":"The Effects of Single Bouts of Physical Activity on Cognition in Adolescents and Young Adults With Intellectual Disabilities: A Systematic Review","authors":"Ting-Yu Chueh,&nbsp;Jia-Hao Wu,&nbsp;Wei-Kang Hung,&nbsp;Cheng-Chen Pan,&nbsp;Chien-Chih Chou,&nbsp;Chung-Ju Huang,&nbsp;Chien-Ting Wu","doi":"10.1111/jar.70026","DOIUrl":"https://doi.org/10.1111/jar.70026","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disabilities (ID) typically exhibit cognitive deficits. While single bouts of physical activity (PA) have shown cognitive benefits in typically developing individuals, the effects on those with ID are unclear. This study aimed to investigate the effectiveness of single bouts of PA on cognition in individuals with ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This registered review followed the PRISMA guidelines and searched for eligible studies on PubMed and Scopus.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Eight studies were included, showing that participants demonstrated transient improvements in cognition, including information processing speed, inhibition and working memory, following moderate aerobic-based intensity PA. However, findings regarding the optimal intensity or types of PA for enhancing specific cognitions, and the effects on higher-level cognition (e.g., planning), are limited.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Single bouts of PA may transiently enhance cognition in adolescents and young adults with mild to moderate ID, but more rigorous research with a feasible protocol is required to refine exercise prescriptions for maximal cognitive benefits.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143534032","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}

{"title":"Frontline Staff and Trainer Perspectives on Implementing and Adhering to Positive Behaviour Support in Intellectual Disabilities Care: A Mixed-Methods Study","authors":"Eke Bruinsma,&nbsp;Annelies A. de Bildt,&nbsp;Pieter J. Hoekstra,&nbsp;Gerda M. de Kuijper,&nbsp;Barbara J. van den Hoofdakker","doi":"10.1111/jar.70023","DOIUrl":"https://doi.org/10.1111/jar.70023","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>We aimed to identify key factors in implementing and adhering to positive behaviour support (PBS), provided by frontline staff, targeting challenging behaviours of people with intellectual disabilities living in residential group homes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Using semi-structured interviews with 12 frontline staff members, we collected perspectives on a PBS training that they received. In two separate focus groups with nine frontline staff members and nine PBS trainers, we discussed factors perceived to influence PBS implementation and adherence. Hybrid coding and thematic analysis were employed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Frontline staff were positive about the content of the training and noticed improvements in challenging behaviours of the people they cared for. Key factors for implementation and adherence included organisation-wide embedding of PBS, management support, motivating staff, clear documentation, regular evaluations, and additional training sessions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study provides valuable insights for the implementation of and adherence to frontline staff-provided PBS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70023","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143475424","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}

{"title":"Supporting Parents of Adolescents With Intellectual Disabilities: A Systematic Review of Interventions","authors":"Emma Scripps,&nbsp;Daniel Sutherland,&nbsp;Peter E. Langdon,&nbsp;Richard P. Hastings,&nbsp;Kylie M. Gray","doi":"10.1111/jar.70004","DOIUrl":"https://doi.org/10.1111/jar.70004","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This review aimed to synthesise the literature about interventions for parents of adolescents with intellectual disability, including parental experience of receiving interventions and intervention effectiveness.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Eligible interventions aimed to improve parenting skills and/or parent–adolescent relationships, adolescent behavioural/emotional problems and/or parent well-being. ASSIA, EMBASE, Medline, PsycINFO and Web of Science were last searched on 11 July 2024. The TIDieR checklist and the MMAT were used for quality appraisal. A narrative synthesis was conducted. (Pre-registration: PROSPERO CRD42022384409).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Twelve studies with 1041 families were included. Intervention descriptions were detailed; however, study quality was mixed. Nearly all studies reported the intervention was associated with positive effects on parenting, parent–adolescent relationships, adolescent behaviour/emotional problems or parent well-being. Three randomised controlled trials (RCTs) offer the strongest evidence but are limited in quality. All studies investigating parent experiences reported positive responses.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>High-quality studies (e.g., RCTs) are needed to enable conclusions about efficacy and effectiveness.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70004","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143438790","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}

{"title":"Easy Read… Easy English… Plain Language? Decision-Making in the Production of ‘Easy’ Information in Australia","authors":"Ariella Meltzer,&nbsp;Emma Barnes,&nbsp;Ayah Wehbe","doi":"10.1111/jar.70021","DOIUrl":"https://doi.org/10.1111/jar.70021","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>In Australia, several formats of written information are made for people with intellectual disability and/or low literacy, such as Easy Read, Easy English and Plain Language. More understanding is however required about the decision-making behind their features, as it is not always clear which formats use which features or for what reasons.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Twelve semi-structured interviews were conducted with leaders/senior staff in Australian accessible information provider organisations who make ‘easy’ information. Data were thematically-analysed, via a two-stage deductive-inductive process.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The results show overlaps between different ‘easy’ information formats in Australia. ‘Easy’ information provider organisations make choices about what reading-level and images to use based <i>how</i> they see their envisioned audience <i>using</i> the information and <i>what</i> will make their envisioned audience feel <i>recognised/empowered</i>.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>No single ‘easy’ format will suit everyone. ‘Easy’ information providers need to be more specific about the audience and associated features of their products.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70021","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143431454","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}

{"title":"Using Experience Based Co-Design to Develop a Novel Psychological Intervention With People With Intellectual Disabilities and Stakeholders","authors":"Olivia Hewitt,&nbsp;Peter E. Langdon,&nbsp;Michael Larkin","doi":"10.1111/jar.70022","DOIUrl":"https://doi.org/10.1111/jar.70022","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Psychological interventions need to be adapted for use with people with intellectual disabilities to ensure they are engaging, accessible and effective. Co-design allows the experiences of service users and stakeholders to actively shape and develop interventions, to ensure their accessibility.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>An adapted model of Experience Based Co-Design (EBCD) was used to co-develop a novel, mental imagery-based psychological intervention for people with mild to moderate intellectual disabilities and anxiety. Involvement in EBCD was evaluated for people with intellectual disabilities and stakeholders using both quantitative and qualitative methods.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Numerous concrete and specific intervention adaptations arose and were implemented. Our findings indicated that all participants were able to engage fully with EBCD, and that participants found the process a positive experience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>EBCD has likely resulted in a more accessible and engaging intervention which can be now tested within a larger study.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70022","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143404469","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}

{"title":"‘What Matters, Doctor?’ A Qualitative and Inclusive Study of the Experience of Mainstream Healthcare Among People With Intellectual Disabilities in Belgium","authors":"A. Miceli,&nbsp;L. Lucassen,&nbsp;R. Rinaldi,&nbsp;N. Van Ooteghem,&nbsp;D. Walter,&nbsp;M. Perau,&nbsp;C. Kahwaji,&nbsp;A. Mayart,&nbsp;E. Batselé","doi":"10.1111/jar.70020","DOIUrl":"https://doi.org/10.1111/jar.70020","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study investigates the healthcare needs and experiences of adults with intellectual disabilities, focusing on identifying areas for improvement. Its innovation lies in including individuals with intellectual disabilities as co-researchers in the research process.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Thematic analysis was performed on five focus groups with 30 participants, exploring access to healthcare. Three co-researchers played active roles in reviewing the interview, recruitment, facilitation and co-analysis of results.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three types of specific needs emerged: communication, relational and support needs, as well as challenges in empowerment and shortcomings in the skills of professionals.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Intervention programmes aimed at training doctors and healthcare professionals should consider the specific difficulties and needs of people with intellectual disability, and their input should be prioritised in the design of these interventions.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143389132","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}

{"title":"Increased Life Expectancy of People With Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?","authors":"Karine Baumstarck,&nbsp;Sibylle Del Duca,&nbsp;Houria El Ouazzani,&nbsp;Ilyes Hamouda,&nbsp;Any Beltran Anzola,&nbsp;Marie-Anastasie Aim,&nbsp;Marie-Christine Rousseau","doi":"10.1111/jar.70018","DOIUrl":"https://doi.org/10.1111/jar.70018","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger parents.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The participants were parents of people included in the French EVAL-PLH cohort. Psychological status, quality of life and coping were compared between (i) parents of the youngest persons (&lt; 20 years) versus parents of the oldest persons (≥ 35 years); (ii) youngest (&lt; 45 years) versus oldest parents (≥ 55 years).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Compared with the youngest parents, the oldest parents did not differ in anxiety–mood disorders, quality of life or coping strategies used.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>We did not confirm that ageing generates psychological changes for parents. Future qualitative studies should deeply examine this underexplored issue.</p>\u0000 \u0000 <p><b>Trial Registration:</b> Clinical trial number: NCT02400528</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-02-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70018","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143389131","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}