Journal of Intellectual Disability Research最新文献

{"title":"Feasibility of Physical Fitness Measurements in Older Adults With Intellectual Disabilities Within Two Large Cohort Studies: The HA-ID and IDS-TILDA Study","authors":"Alyt Oppewal,&nbsp;Louise Lynch,&nbsp;Eilish Burke","doi":"10.1111/jir.70103","DOIUrl":"10.1111/jir.70103","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Research has shown significant underdiagnoses in adults with intellectual disabilities, highlighting the need for objective health measurements to prevent overshadowing. Physical fitness, crucial for health and functioning, is consistently poor in this population, increasing the risk of adverse outcomes. Fitness tests are promising but to date lack specific reference values from large datasets for broader applicability. This study examines the feasibility of four physical fitness tests in two large European cohort studies, IDS-TILDA in Ireland and the HA-ID study in the Netherlands, to address barriers and improve inclusion in research and care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This study used data from IDS-TILDA (40+ years) and HA-ID (60+ years) cohort studies. Static balance was measured by the capability of maintaining three stances; muscle strength was measured as grip strength; muscular endurance was measured with the Five-Times Chair Stand; and cardiorespiratory fitness was measured with the Two-Minute Step Test. Reasons for non-compliance were documented. The feasibility of these tests and reasons for non-successful performance were described for the total group and across participant characteristics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The IDS-TILDA sample was younger than the HA-ID sample, with more participants being independent in mobility. All fitness tests showed moderate to good feasibility, except the Full-Tandem stance in the IDS-TILDA sample. Lower feasibility was found in adults with severe and profound intellectual disabilities, walking aids and wheelchair users. Key barriers for participation were physical limitations and difficulties understanding the task.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study showed overall moderate to good feasibility. Physical limitations and difficulties understanding the task were important barriers, emphasising the need for the person-centred approach taken by both studies. Feasibility for including standardised physical fitness assessments, with a person-centred approach, in large cohort studies is shown. Including physical fitness assessment is recommended to allow for comparability and combining of data for more knowledge on physical fitness in adults with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 7","pages":"688-699"},"PeriodicalIF":2.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70103","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147645523","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Development and Validation of Models of Risk for Behaviours That Challenge in Children With Developmental Disabilities: A Novel Machine Learning Approach","authors":"Laura Groves,&nbsp;Guy Davies,&nbsp;Chris Oliver,&nbsp;Debbie Allen,&nbsp;Charlie Bamford,&nbsp;Louise Bell,&nbsp;Chloe Brown,&nbsp;Vivian Cooper,&nbsp;Louise Daniel,&nbsp;Jo Garstang,&nbsp;Chris Jones,&nbsp;Joseph P. McCleery,&nbsp;Ashley Liew,&nbsp;John Rose,&nbsp;Doug Simkiss,&nbsp;Catherine Steenfeldt-Kristensen,&nbsp;Alice Welham,&nbsp;Caroline Richards","doi":"10.1111/jir.70105","DOIUrl":"10.1111/jir.70105","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with developmental disabilities show a high prevalence of behaviours that challenge (BtC). Thus, harnessing known risk markers to target early intervention to children at the greatest risk of BtC is essential. In this study, machine learning techniques were used to develop prediction models of risk (no, low and high severity behaviour) for different BtC (self-injurious behaviour, aggression, property destruction, ‘any BtC’). A secondary aim was to assess the external validation of these models to predict future behaviour.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Caregivers of individuals with developmental disabilities completed the Self-injury, Aggression and Destruction Screening Questionnaire. One dataset (<i>n</i> = 778) was used to train and test models to establish internal validation. Algorithms were created using random forest classifiers, K-nearest neighbours, multiple logistic regressions and Gaussian mixture models (GMM) for each type of behaviour. External validation utilising a second dataset of caregivers (<i>n</i> = 121) completing the SAD-SQ at baseline and 12 months later was then conducted.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Outcomes</h3>\u0000 \u0000 <p>Across internal and external validation, the random forest classifiers and GMM algorithms for <i>any BtC</i> showed the highest number of correct classifications with fair to good recall and precision, with 83.5% of people at risk of BtC correctly predicted. Predictions of persistence and incidence of behaviour over 12 months was also good (83.5% and 83.3%, respectively).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Interpretation</h3>\u0000 \u0000 <p>The novel prediction models showed the ability to predict BtC for children with developmental disabilities. Such models have applicability to clinical practice to inform provision of early preventative interventions for BtC.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 7","pages":"700-708"},"PeriodicalIF":2.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70105","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147729199","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Trajectories of Mother–Child Closeness and Child Behavioural and Emotional Outcomes in Families of Children With Intellectual Disabilities","authors":"Emma L. Taylor,&nbsp;Paul A. Thompson,&nbsp;Samantha Flynn,&nbsp;Kylie M. Gray,&nbsp;Richard P. Hastings","doi":"10.1111/jir.70110","DOIUrl":"10.1111/jir.70110","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with intellectual disabilities display fewer prosocial behaviours and increased behavioural and emotional problems compared to children without intellectual disabilities. Mother–child closeness may be an important factor in improving behavioural and emotional outcomes in children with intellectual disabilities over time. We aimed to examine the covarying relationship between mother–child closeness and child externalising and internalising behaviour problems, and child prosocial behaviour, respectively, over time.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Parallel process growth modelling was conducted using data from 353 maternal primary caregivers who took part in three waves of the 1000 Families Study. Mother–child closeness was measured at each wave using the Child–Parent Relationship Scale. Child behavioural and emotional outcomes were measured using the Strengths and Difficulties Questionnaire. We controlled for time-varying and time-invariant covariates including the child's level of communication skills, autism diagnosis, maternal psychological distress and family economic adversity.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The trajectory of mother–child closeness remained relatively stable across the three waves. After controlling for covariates, the trajectories of mother–child closeness and child prosocial behaviour significantly covaried. However, the trajectory of mother–child closeness did not significantly covary with the trajectory of either child internalising or externalising behaviour problems.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Interventions aiming to improve child prosocial behaviour and/or mother–child closeness in families of children with intellectual disabilities may benefit from considering the relationship between mother–child closeness and child prosocial behaviour. Findings highlight the need for additional research to understand the relationship between these factors and further examine underlying individual differences in these families.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 7","pages":"709-724"},"PeriodicalIF":2.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70110","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147838875","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Intellectual Disability Frailty Index Predicts 10-Year Mortality Within the HA-ID Cohort","authors":"Marco C. van Maurik,&nbsp;Mylène N. Böhmer,&nbsp;Patrick J. E. Bindels,&nbsp;Dederieke A. M. Festen,&nbsp;Alyt Oppewal","doi":"10.1111/jir.70111","DOIUrl":"10.1111/jir.70111","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with intellectual disability (ID) experience frailty up to 20 years earlier than the general population, potentially increasing their risk of age-related comorbidities and mortality at a younger age. This study investigates the relationship between frailty, assessed with the Intellectual Disability Frailty Index (ID-FI) and its Short Form, and all-cause mortality over 10 years in older adults with ID. Accurate mortality prediction may help identify high-risk individuals and assist in creating targeted interventions for adults with ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Data from 982 participants aged ≥ 50 years (mean age = 61.6 ± 8 years) with borderline to profound ID were analysed over a 10-year follow-up within the Healthy Ageing and Intellectual Disabilities (HA-ID) cohort. Frailty was assessed using the 51-item ID-FI and the 17-item ID-FI Short Form, which measure frailty scores that can be classified into five categories: relatively fit, prefrail, mildly frail, moderately frail and severely frail. Cox proportional hazards models were used to assess the predictive validity of both indices for all-cause mortality.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Of 982 study participants, 433 (44.1%) were deceased during 10-year follow-up. Higher frailty scores were significantly associated with increased mortality risk, independent of age, sex, level of ID and Down syndrome. Compared to relatively fit participants, the hazard ratios (HRs) for mortality for the ID-FI were as follows: 1.53 (95% CI = 1.14–2.05) for prefrail, 3.17 (95% CI = 2.31–4.36) for mildly frail, 5.37 (95% CI = 3.66–7.89) for moderately frail and 10.00 (95% CI = 6.49–15.43) for severely frail participants. A similar pattern was demonstrated for the ID-FI Short Form. Both indices demonstrated fair predictive accuracy (AUC = 0.72) for 10-year all-cause mortality.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Both the ID-FI and ID-FI Short Form are predictive for 10-year mortality risk in adults with ID. Future research should investigate how frailty changes over time and develop strategies to improve care for adults with ID.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 7","pages":"725-733"},"PeriodicalIF":2.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70111","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147838940","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correction to 'Off-Label Antipsychotic Withdrawal in People With Intellectual Disabilities: Development and Internal Validation of a Prediction Model'.","authors":"","doi":"10.1111/jir.70100","DOIUrl":"10.1111/jir.70100","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"664"},"PeriodicalIF":2.4,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13652182/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147774031","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Values of Individuals With Rare Genetic Neurodevelopmental Disorders and Their Family/Caregivers in Healthcare: A Scoping Review to Inform Guideline Development.","authors":"Mirthe J Klein Haneveld, Louise Cox, Petri J C M Embregts, Alistair R Niemeijer, Martina C Cornel, Charlotte M W Gaasterland, Agnies M van Eeghen","doi":"10.1111/jir.70097","DOIUrl":"10.1111/jir.70097","url":null,"abstract":"<p><strong>Background: </strong>Healthcare decision-making for individuals with rare genetic neurodevelopmental disorders (RGNDs) associated with intellectual disabilities (ID) can be complex due to the intersection of lifelong care needs, limited medical expertise and communication barriers. Clinical practice guideline recommendations for managing RGNDs should align with the values of individuals and their families/caregivers; this requires the use of an appropriate Evidence-to-Decision framework in guideline development. This review aims to describe what individuals with RGNDs associated with ID and their family/caregivers value in healthcare and healthcare decision-making.</p><p><strong>Methods: </strong>This scoping review aimed to map the available evidence on individual and family/caregiver values in healthcare for RGNDs to inform guideline development. MEDLINE, Embase, PsycINFO and CINAHL were systematically searched for literature published from 2000 to 2025, with the final search conducted on 1 June 2025. Studies reporting primary qualitative data on individuals with RGNDs and/or their family/caregivers in the context of healthcare were eligible for inclusion. Inductive content analysis was conducted to map values in healthcare and healthcare decision-making.</p><p><strong>Results: </strong>One hundred twenty-five articles were included. Most studies reported on the perspectives of families/caregivers and on relatively more common conditions, in particular Down syndrome. Important values included autonomy, person-centredness, feasibility, competence of and connection with the healthcare professional and accessibility, coordination and absence of stigma on the level of the healthcare system and society. In healthcare decision-making, benefits and harms both on an individual and on the family level were balanced alongside uncertainty, priority of health issues and identity-related considerations.</p><p><strong>Discussion: </strong>Guideline developers should address issues that matter to individuals with RGNDs and their families/caregivers during Evidence-to-Decision processes, such as family-level impact and identity-related considerations. Further research is needed to capture perspectives of individuals with ID, which are underrepresented compared to family/caregivers.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"608-652"},"PeriodicalIF":2.4,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13143496/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147365423","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Association Between 24-h Movement Behaviours and Fundamental Motor Skills of Children With Intellectual Disabilities Based on Compositional Data Analyses.","authors":"Yang Liu, Glenn Roswal, Jianing Ding, Yaqing Yuan","doi":"10.1111/jir.70096","DOIUrl":"10.1111/jir.70096","url":null,"abstract":"<p><strong>Objective: </strong>To explore the association between 24-h movement behaviours and fundamental motor skills in children with intellectual disabilities using compositional data analyses and to investigate the 'dose-effect' characteristics of the reallocation between 24-h movement behaviours and fundamental motor skills.</p><p><strong>Methods: </strong>A cross-sectional study was conducted among 306 children with intellectual disabilities aged 6-10 years from 12 special education schools in Beijing and Jinan between 10 September 2023 and 27 March 2024. The ActiGraph GT3X+ accelerometer was used to estimate the amount of time spent in 24-h movement behaviours. The Test of Gross Motor Development-2 was applied to assess fundamental motor skills. The compositional isotemporal substitution was utilized to analyse the relationship between 24-h movement behaviours and fundamental motor skills.</p><p><strong>Results: </strong>(1) After controlling the gender, age and intellectual disability level, MVPA of children with intellectual disabilities was positively associated with their FMS total score, locomotor skills and object control skills (β_FMS = 7.70, β_locomotor = 3.68, β_{object control} = 4.01, all p < 0.01). Additionally, SB was negatively correlated with their FMS total score, locomotor skills and object control skills (β_FMS = -5.40, β_locomotor = -2.00, β_{object control} = -3.39, all p < 0.01). (2) According to the 'dose-response' curves, the mutual substitution of MVPA and other movement behaviours had an asymmetric effect on FMS, while the mutual substitution of LPA and SB had a symmetrical effect on FMS among children with intellectual disabilities. Furthermore, it was demonstrated that replacing SB with MVPA had the best-improving effect on the FMS of children with intellectual disabilities.</p><p><strong>Conclusion: </strong>Special education school administrators, teachers, parents and guardians should consider 24-h movement behaviours as a whole and pay attention to their impact on children with intellectual disabilities. In the process of promoting FMS in children with intellectual disabilities, ensuring adequate sleep and trying to reallocate time from SB to MVPA and LPA may be effective methods.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"599-607"},"PeriodicalIF":2.4,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147316960","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and Validation of the Outcomes of WeLlbeing and Distress Scale for Adults With an Intellectual Disability (OWLS-ID), Formally Known as the PTOS-ID.","authors":"Emily Kerry, Nigel Beail, Nik Vlissides, Chris Gaskell, Gregg Harry Rawlings","doi":"10.1111/jir.70099","DOIUrl":"10.1111/jir.70099","url":null,"abstract":"<p><strong>Background: </strong>The Psychological Therapies Outcome Scale-Intellectual Disabilities-II (PTOS-ID-II) is a 29-item self-report measure developed to assess psychological distress and positive well-being in people with an intellectual disability. While initial validation demonstrated promising psychometric properties, further replication in a larger sample was needed, and incorporating insights gained from routine clinical use over the years since its initial implementation.</p><p><strong>Method: </strong>A quantitative cross-sectional design was utilised to test the psychometric properties of the PTOS-ID-II using data collected from routine clinical practice from adults with intellectual disabilities (n = 879) accessing a community health service. Subsequent analyses included dimensionality reduction (via principal component analysis and confirmatory factor analysis), assessment of internal consistency, concurrent validity and receiver operating characteristic analysis. Analyses were guided by a primer on the development of health outcome measures.</p><p><strong>Results: </strong>Exploration of the proposed factor structure of the PTOS-ID-II indicated that two of the items were problematic and subsequently removed. The new 27-item measure was rebranded 'the Outcomes for Wellbeing and Distress Scale' (OWLS-ID). Analysis of the measure identified and confirmed a three-component model: (1) Positive Well-being, (2) Emotional and Behavioural Discomfort and (3) Anxiety. Internal consistency was good to acceptable. Items related to Emotional and Behavioural Discomfort and Anxiety were combined to create a measure of psychological distress. Concurrent validity between distress as measured using the OWLS-ID and Brief Symptoms Inventory was strong. A cut of 11.5 had acceptable sensitivity (0.85) and specificity (0.9). Analysis of missing data suggested that item acceptability was high.</p><p><strong>Conclusion: </strong>The OWLS-ID is one of the most comprehensively tested patient-reported outcome measures to date, which was developed specifically for individuals with an intellectual disability. Its implications for clinical practice and future research are discussed.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"653-663"},"PeriodicalIF":2.4,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147467083","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Continued Involvement: A Scoping Review on Family Members' Needs and Experiences Collaborating With Support Staff for Relatives With Intellectual Disabilities Living Outside the Family Home.","authors":"Frances R Vereijken, Noud Frielink, Andrew Jahoda, Petri J C M Embregts","doi":"10.1111/jir.70074","DOIUrl":"10.1111/jir.70074","url":null,"abstract":"<p><strong>Background: </strong>Family members' involvement in the care for their relative often continues after their relative has moved out of the family home. However, little is known about the needs of family members when collaborating specifically with support staff caring for their relative. This scoping review provides an overview of existing literature to inform future research.</p><p><strong>Method: </strong>The review was conducted in accordance with the PRISMA for Scoping Review statement. Seven databases were systematically searched in April 2022 (with a final update in May 2025). Studies that were published in English in peer-reviewed journals and examined the needs and experiences of family members collaborating with support staff in residential care settings were considered for inclusion. The Mixed Methods Appraisal Tool was used to assess risk of bias and a thematic synthesis was conducted to analyse the data.</p><p><strong>Results: </strong>Ten articles met the inclusion criteria. Four studies focused on family members' experiences following a relative's transition from institutional or hospital settings, one study on sibling-staff collaboration, one on the roles of adult siblings, one exploring family experiences during the COVID-19 pandemic, one on parental perceptions of communication, one on family experiences postabuse inquiry and one focused on collaboration within hospital settings. The studies involved relatives with severe (n = 1), mild, severe and profound (n = 1), severe to profound (n = 1) or profound intellectual disabilities (n = 3). Four did not mention the level of intellectual disability. The synthesis yielded four analytical themes: (1) complexities in building personal relationships amidst changing contexts (n = 8), (2) navigating how to address unmet needs and the vulnerability it exposes (n = 3), (3) a desire for partnership and recognition (n = 10) and (4) a desire for staff to uphold their relative's quality of life (n = 10).</p><p><strong>Discussion: </strong>This review highlights key areas for future research, including how family characteristics, disability severity and living arrangement can influence needs and experiences when collaborating with support staff. Additionally, further insight is needed on what impacts the dynamic nature of family-staff relationships. Lastly, understanding the views and experiences of support staff regarding family involvement is important, as it can aid the development of collaboration that is sensitive to their specific needs.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"561-578"},"PeriodicalIF":2.4,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13143495/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145804693","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Parents' Experiences and Expectations From Physiotherapy for Children With Down Syndrome: A Scoping Review.","authors":"Fathimath Akhila, Asir John Samuel","doi":"10.1111/jir.70088","DOIUrl":"10.1111/jir.70088","url":null,"abstract":"<p><strong>Background: </strong>Physiotherapy plays a vital role in the care and development of children with Down syndrome (CDS), especially in addressing related health issues. Understanding caregivers' perspectives on physiotherapy for CDS is essential for enhancing service delivery. This scoping review aims to synthesize research on parental experiences and expectations concerning physiotherapy for CDS.</p><p><strong>Method: </strong>Scoping review methodology follows the recommendations of Arksey and O'Malley and the steps described by the Joanna Briggs Institute. A comprehensive search strategy was employed across four electronic databases: PubMed, Scopus, Web of Science and CINAHL, as well as relevant grey literature sources.</p><p><strong>Results: </strong>Out of the 97 studies screened, five met the inclusion criteria and were included in the review. Parents widely viewed physiotherapy as essential for their child's development, reporting benefits in motor skills, confidence and independence. However, they also faced challenges such as limited access, emotional strain and service dissatisfaction.</p><p><strong>Conclusions: </strong>This review enhances our understanding of the experiences and expectations of parents concerning physiotherapy for children with Down syndrome. It identifies important areas where future research and clinical practice can improve developmental outcomes and the quality of life for CDS.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":"579-587"},"PeriodicalIF":2.4,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146202032","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}