Journal of Intellectual Disability Research最新文献

{"title":"Navigating Conviviality and Co-Viviality: Persons With Intellectual Disabilities and Mental Health Problems' Home Making in Residential Care.","authors":"Toon Benoot, Laurine Bourgonjon, Dries Cautreels, Griet Roets","doi":"10.1111/jir.70056","DOIUrl":"https://doi.org/10.1111/jir.70056","url":null,"abstract":"<p><strong>Background: </strong>Recent numbers of the share of residential services in the Flemish care reveal that implementing personal budgets did not ignite a large-scale departure from residential care and that the use of full-time residential care even increased. Despite incentives to leave residential care, people with intellectual disabilities and mental health problems (PIDMHP) in particular continue to keep living there (or choose to keep living there). Gaining insight into the possibilities PIDMHP living in residential care have for making a home is of importance in the ever-continuing inquiry and discussion of how to contribute to enhancing service quality and spatial living conditions for PIDMHP.</p><p><strong>Method: </strong>This contribution is built around shadowing activities with 20 PIDMHP living in a residential care facility in Flanders (Belgium), as a form of one-on-one ethnography, coupled with go-along interviews with 12 professional carers.</p><p><strong>Results: </strong>PIDMHP showcases a myriad of socio-spatial strategies relating to co-viviality and conviviality to make sense of 'a good home' in residential care. These strategies emerge within power dynamics and, in the process, are not always recognised by professionals as meaningful/significant or supported to come into being.</p><p><strong>Conclusions: </strong>The conducts of the residents and support workers are not passive by-products of the building design but constitute active shaping of that living environment themselves by means of socio-spatial strategies. The strategies employed by residents are embedded within rules and structures established by professionals. These power dynamics within which 'home-making' takes shape are especially relevant when considering the transformation of residential care facilities and challenging prevailing institutional logics.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145292458","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":"Criterion Validity, Scalability and Stability of Scoring on the Bayley-III in Children With Angelman Syndrome.","authors":"Maartje Ten Hooven-Radstaake, Sabine Herrman-Mous, Anjali Sadhwani, Anne Wheeler, Margaret DeRamus, Gwen Dieleman, Cindy Navis, Jeroen Legerstee, Leontine Ten Hoopen, Jan van der Ende, Casey Okoniewski, Laura Hiruma, André Rietman","doi":"10.1111/jir.70026","DOIUrl":"https://doi.org/10.1111/jir.70026","url":null,"abstract":"<p><strong>Background: </strong>The Bayley Scales of Infant Development is used in many studies and clinical trials in children with developmental disabilities, including children with Angelman syndrome (AS).</p><p><strong>Method: </strong>We assessed 142 children with AS in an international multicentre study with the Bayley Scales of Infant Development III, of which 52 children were tested more than once. We assessed criterion validity using proportion analysis, scalability using Mokken analyses and stability of scoring by counting pass-to-fail and fail-to-pass items.</p><p><strong>Results: </strong>Results revealed good scalability in all scales but the expressive language scale, indicating that the items of these scales measured one underlying trait. In the expressive language scale, the AS-related speech difficulties invalidated scoring. Scoring within children across assessments was unstable for all scales except the gross motor scale, as more than half of the children made one or more errors in previously correct items. Loss or regression of skills does not fully explain this finding. Alternative explanations including motivation, concentration, on-task behaviour and anxiety should also be considered when scores decline.</p><p><strong>Conclusions: </strong>This study shows that caution should be taken when interpreting single and successive scores of children with AS on the Bayley-III and that other forms of assessment should complement assessment in children with AS.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145286455","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":"Clinical Models of Care for Adults With Intellectual Disabilities in Forensic Mental Health Services: A Scoping Review.","authors":"Alina Haines-Delmont, Dineesha Georgeena Rajan, Sian Cooper, Faye McLoughlin, Sahrish Ali, Katie Goodall, Joy Duxbury, Faith Hurley, Camilla Lindekilde, Michaela Thomson, Rachel Whyte, Erica Hateley, Tella Lantta","doi":"10.1111/jir.70048","DOIUrl":"https://doi.org/10.1111/jir.70048","url":null,"abstract":"<p><strong>Background: </strong>People with intellectual disabilities (ID) and forensic histories face significant health inequalities, including reduced quality of life and prolonged stays in mental health hospitals. This is a global health issue, and there is an urgent need for evidence-based specific forensic interventions, models of care and service models to allow for effective discharge in the community, improve long-term outcomes and reduce healthcare costs.</p><p><strong>Method: </strong>This scoping review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Extension for Scoping Reviews. We have adapted Morrisey's framework to report outcomes of clinical models of care to include (i) effectiveness of treatment; (ii) patient safety; (iii) patient and family experience of care; and (iv) staff outcomes, skills and attributes.</p><p><strong>Results: </strong>Fifty-six studies were included in this review, reporting on 49 interventions, models of care and service models (referred to as 'models'). Four forensic models of care were identified as best practice: the Discharge Pathway Protocol, the Care Pathway-Based Approach, the Psychological Treatment Pathway and the Forensic Intellectual Disability Secure Services (FIDSS) Model of Care. The first three have demonstrated effectiveness in reducing length of stay, facilitating timely discharges and improving patient outcomes for individuals with ID, while the FIDSS Model of Care represents a holistic and culturally sensitive approach emphasising person-centred care, rehabilitation and quality of life. The findings underscore the need for larger studies to explore predictors of successful discharge and long-term outcomes.</p><p><strong>Conclusions: </strong>This is the first review to bring together 'clinical effectiveness' studies and those reporting on patient and family experience, as well as staff's needs, attributes and experiences. Policymakers and practitioners should consider the models identified here as frameworks for developing effective, person-centred care pathways, ensuring appropriate staff training and support, meaningful communication and work with the patient and their family/peers/support network and integrating community services to address the complex needs of this vulnerable population.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145286494","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":"Personal and Environmental Factors Influencing Self-Determination of People With Intellectual Disabilities and Epilepsy: A Scoping Review.","authors":"Alexandra I Haenen, Noud Frielink, Jans S van Ool, Francesca M Snoeijen-Schouwenaars, Petri J C M Embregts","doi":"10.1111/jir.70051","DOIUrl":"https://doi.org/10.1111/jir.70051","url":null,"abstract":"<p><strong>Background: </strong>Epilepsy is a chronic neurological disorder that is prevalent among people with intellectual disabilities, profoundly affecting various aspects of life. Understanding the association between epilepsy and reduced quality of life in this population may benefit from exploring self-determination, a key dimension of quality of life. Self-determination evolves throughout life, shaped by personal and environmental factors, including intellectual disabilities and access to supportive interventions. This review aims to map existing research to identify the personal and environmental factors that affect self-determination among people with intellectual disabilities and epilepsy.</p><p><strong>Methods: </strong>Eight electronic databases (Embase, MEDLINE ALL, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials, Web of Science, ERIC and Google Scholar) were systematically searched in December 2022 and again on 2 October 2024 to update the previous search. All English-language studies presenting original research data on self-determination among people (above age 10) with intellectual disabilities and epilepsy were included, without date restrictions. The methodological quality of included studies was assessed using the Mixed Methods Appraisal Tool (MMAT). To extract the data, we used the PCC (population, concept and context) framework. To analyse the data, we employed descriptive thematic analysis.</p><p><strong>Results: </strong>Of the 1485 records identified, nine studies were eligible. These studies employed a qualitative design (n = 7) or were quantitative case studies (n = 2). Together, the studies included 68 participants with varying levels of intellectual disabilities and types of epilepsy and 115 caregivers. Five overarching themes were identified: (1) different approaches to managing epilepsy (n = 4); (2) information sharing and a trust in the collaboration with health care professionals (n = 5); (3) the need for recognition and autonomy in health care and support (n = 5); (4) the tendency of parents and professionals to take over decision making and associated concerns, responsibilities and emotions (n = 6); (5) the importance of considering personal preferences in care and support (n = 5).</p><p><strong>Discussion: </strong>This review reveals the complex interplay between personal factors (i.e., individual coping strategies) and environmental factors (i.e., characteristics of the relationships with parents and professionals) in shaping self-determination among people with intellectual disabilities and epilepsy. These insights stress the importance of developing interventions to enhance self-efficacy and of specific training to equip caregivers and professionals with autonomy supportive skills to improve well-being at the individual level. This review also highlights a need for quantitative studies to enhance generalisability of findings.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145244599","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":"Suicide and Self-Harm in Intellectual Disability: A Systematic Review and Meta-Analysis.","authors":"Sara Lindstedt, Christian Rück, Tatja Hirvikoski, Emma Hintze, Johan Lundin Kleberg, Leoni Grossmann, John Wallert, Johan Bjureberg, Oskar Flygare","doi":"10.1111/jir.70052","DOIUrl":"https://doi.org/10.1111/jir.70052","url":null,"abstract":"<p><strong>Background: </strong>Individuals with intellectual disabilities (ID) are disproportionately exposed to several risk factors for suicidality. However, no meta-analysis has yet quantified the relative risk of suicide and self-harm, including suicide attempts, within this population. The aim of this project was to bring together and synthesise the research on suicidality among individuals with ID.</p><p><strong>Methods: </strong>A systematic review and meta-analysis was carried out. Medline, Embase, Web of Science and PsycInfo were searched from inception through 4 August 2025. Observational studies with a quantitative design, evaluating the relative risk of suicide or self-harm, including suicide attempts, in individuals with and without ID, were included. Risk of bias was assessed using a shortened version of the Risk Of Bias In Non-randomized Studies-of Exposure (ROBINS-E) checklist. A random effects model was used to synthesise the results.</p><p><strong>Results: </strong>Eleven primary studies were included in the review (n = 241 438). The level of ID severity was only presented in two articles. Compared to the general population, the pooled relative risk for death by suicide was 0.54 (95% CI 0.33 to 0.89, k = 6, I² = 77%) and the relative risk for self-harm was 3.16, (95% CI 2.3 to 4.35, k = 6, I² = 89%).</p><p><strong>Conclusion: </strong>The findings suggest that individuals with ID have an elevated risk of self-harm but a lower risk of dying by suicide compared to the general population. However, these results should be interpreted with caution due to the limited number of primary studies and substantial between-study heterogeneity. Further, separate analyses of mild versus moderate-to-profound ID are warranted.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145225514","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":"Promoting Accessible Research for Children With Intellectual Disabilities; Lessons Learnt From Adaptations Through the Covid-19 Pandemic.","authors":"Catherine Laverty, Caroline Richards","doi":"10.1111/jir.70055","DOIUrl":"https://doi.org/10.1111/jir.70055","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145213057","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":"Exploring the Predictive Role of Lexical Stress Discrimination in the Phonological and Grammatical Skills of Teenagers With Down Syndrome.","authors":"Elena López-Riobóo, Pastora Martínez-Castilla","doi":"10.1111/jir.70050","DOIUrl":"https://doi.org/10.1111/jir.70050","url":null,"abstract":"<p><strong>Background: </strong>Temporal-sampling theory suggests that lexical stress discrimination plays an important role in language disorders. This study explored whether this is also the case in Down syndrome (DS) and, particularly, whether lexical stress discrimination could contribute to accounting for the phonological and grammatical skills of teenagers with this syndrome.</p><p><strong>Method: </strong>Lexical stress discrimination, along with a range of phonological and grammatical skills, was assessed in a group of 27 teenagers with DS. The differential predictive role of lexical stress discrimination in phonology and grammar was studied, taking into account the potential effect of other relevant variables, namely, hearing thresholds, verbal short-term memory, chronological age and non-verbal cognition.</p><p><strong>Results: </strong>Regression models revealed that, for the phonological measurements, only verbal short-term memory emerged as a significant predictor. For grammatical integration and sentence repetition, both verbal short-term memory and lexical stress discrimination played a predictive role. For grammar comprehension, lexical stress discrimination was the only significant predictor.</p><p><strong>Conclusions: </strong>The results regarding grammar are consistent with a temporal-sampling framework. Given the observed predictive role of lexical stress discrimination in the grammatical skills of teenagers with DS, this prosodic skill could potentially be examined and incorporated as a prospective target in intervention programmes.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145206699","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":"JIDR Editorial: Special Issue.","authors":"Ken Courtenay","doi":"10.1111/jir.70046","DOIUrl":"https://doi.org/10.1111/jir.70046","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145199541","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":"Keynotes.","authors":"","doi":"10.1111/jir.70045","DOIUrl":"https://doi.org/10.1111/jir.70045","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145191726","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":"Brief Report: The Vocational and Educational Activities of Transition-Aged Autistic Youth With Low IQ.","authors":"Carly Moser, Ryan Adams, Shuting Zheng, Somer Bishop, Julie Lounds Taylor","doi":"10.1111/jir.70054","DOIUrl":"https://doi.org/10.1111/jir.70054","url":null,"abstract":"<p><strong>Background: </strong>Previous research has shown that autistic transition-aged youth with low IQ experience low rates of integrated employment and postsecondary education (PSE) enrolment. Notably, much of this work was conducted over a decade ago, and the landscape of opportunities has changed since that time. Therefore, the present study described the rate of involvement in vocational and PSE activities among a contemporary sample of autistic youth with low IQ residing in the United States.</p><p><strong>Method: </strong>Online survey responses were collected from 91 caregivers of autistic youth with low IQ residing in the United States. The survey gathered demographic information and assessed the behavioural functioning of the youth, along with their vocational and educational experiences.</p><p><strong>Results: </strong>Thirty-five per cent of autistic youth with low IQ were not involved in any vocational/PSE activity. Approximately 15% of youth were participating in integrated employment (with or without supports), and 5% were enrolled in a range of degree- and non-degree-seeking PSE programmes. In a follow-up analysis, we found that youth who were engaged in vocational/PSE activities had higher family incomes, higher daily living skills, and lower rates of borderline-to-clinical levels of internalising and externalising behaviours than those who were not engaged in any vocational or PSE activity.</p><p><strong>Conclusions: </strong>Our findings indicate low participation (~20%) in integrated employment and PSE programmes, despite national efforts to increase these types of activities, and highlight the continued need to remove barriers that prevent engagement in vocational and PSE activities among autistic youth with low IQ.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145191766","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}