Journal of Intellectual Disability Research最新文献

{"title":"SSBP 26th International Research Symposium, Bali, Indonesia: Abstracts for presentation","authors":"","doi":"10.1111/jir.13174","DOIUrl":"10.1111/jir.13174","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142017767","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":"Early identification and treatment of genetic and neurodevelopmental disorders","authors":"T. I. Winarni, A. Utari, N. Maharani, T. A. Sumekar, N. R. B. Sihombing, R. J. Hagerman","doi":"10.1111/jir.13175","DOIUrl":"10.1111/jir.13175","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142017765","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":"SSBP 26th International Research Symposium, Bali, Indonesia: Keynote Abstracts for presentation","authors":"","doi":"10.1111/jir.13173","DOIUrl":"10.1111/jir.13173","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142017766","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":"Immersive virtual reality is more effective than non-immersive devices for developing real-world skills in people with intellectual disability.","authors":"A Franze, T Loetscher, N C Gallomarino, A Szpak, G Lee, S C Michalski","doi":"10.1111/jir.13177","DOIUrl":"https://doi.org/10.1111/jir.13177","url":null,"abstract":"<p><strong>Background: </strong>People with intellectual disability (ID) demonstrate persistent challenges around developing life skills. Immersive virtual reality (IVR) is gaining interest as a tool for training life skills as it enables individuals to engage in hands-on learning in a safe, controlled and repeatable environment. However, there are concerns about the potential drawbacks of IVR, such as cybersickness and practical challenges with using the equipment, which may hinder its widespread adoption in educational settings. The current study aimed to compare the effectiveness of training in IVR and a non-immersive virtual environment for improving real-world skills in people with ID.</p><p><strong>Methods: </strong>In the present study, 36 adults (16 female, 20 male) with ID were recruited from a disability organisation. Participants completed a real-world assessment of waste management skills before and after training in either the IVR or non-immersive group.</p><p><strong>Results: </strong>Consistent with our hypotheses, the IVR group scored significantly higher in the real-world assessment after virtual training (d = 1), and at the 1-week follow-up (d = 1.12), compared with the non-immersive group. Further analyses showed that the IVR group, but not the non-immersive group, significantly improved performance in the real-world assessment across timepoints.</p><p><strong>Conclusions: </strong>The findings indicate that IVR was more effective for improving and retaining real-world waste management skills. This study supports IVR as a viable tool for professionals and caregivers to develop skills for independent living among people with ID.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2024-08-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142017764","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":"Feasibility and findings of electrocardiogram recording in older adults with intellectual disabilities: results of the Healthy Ageing and Intellectual Disabilities study.","authors":"M J de Leeuw, M N Böhmer, M J G Leening, J A Kors, P J E Bindels, A Oppewal, D A M Maes-Festen","doi":"10.1111/jir.13181","DOIUrl":"https://doi.org/10.1111/jir.13181","url":null,"abstract":"<p><strong>Background: </strong>Older adults with intellectual disabilities (ID) have a high risk of cardiovascular diseases (CVD). At the same time, challenging diagnostic work-up increases the likelihood of underdiagnosis of CVD in this population. To limit this underdiagnosis, it would be beneficial to use objective measures such as the electrocardiogram (ECG). However, little is known about the feasibility of ECG recording and the prevalence of ECG abnormalities in this population. Therefore, the aims of this study were to investigate the feasibility of resting ECG recording, to study the prevalence of ECG abnormalities, and to compare the frequency of ECG abnormalities with medical records in older adults with ID.</p><p><strong>Method: </strong>A cross-sectional study was performed within a cohort of older adults (≥60 years) with ID as part of the Healthy Ageing and Intellectual Disabilities (HA-ID) study. A resting 12-lead ECG was attempted, and the ECG recording was considered feasible if the recording could be made and if the ECG could be interpreted by a cardiologist and the Modular ECG Analysis System (MEANS). ECGs were assessed for the presence of ECG abnormalities and medical record review was performed. If the cardiologist or MEANS concluded that there was evidence of myocardial infarction, atrial fibrillation or QTc prolongation on the ECG in the absence of this ECG diagnosis in the participant's medical record, this was classified as a previously undiagnosed ECG diagnosis.</p><p><strong>Results: </strong>ECG recording was feasible in 134 of the 200 participants (67.0%). Of these 134 participants (70.6 ± 5.8 years; 52.2% female), 103 (76.9%) had one or more ECG abnormality, with the most prevalent being prolonged P-wave duration (27.6%), QTc prolongation (18.7%), minor T-wave abnormalities (17.9%), first degree atrioventricular block (12.7%) and myocardial infarction (6.7%). Eight out of 9 (88.9%) myocardial infarctions and all cases of (significant) QTc prolongation (100%) were previously undiagnosed.</p><p><strong>Conclusions: </strong>This study showed that ECG recording is feasible in the majority of older adults with ID and revealed a substantial underdiagnosis of ECG abnormalities. These results stress the importance of ECG recording and warrant further research into the yield of opportunistic ECG screening in older adults with ID.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2024-08-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141988112","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":"Description and predictors of self-determination in males and females with fragile X syndrome on the verge of adulthood","authors":"L. Friedman,&nbsp;C. Moser,&nbsp;A. J. Thurman,&nbsp;J. L. Taylor,&nbsp;L. Abbeduto,&nbsp;J. Klusek","doi":"10.1111/jir.13182","DOIUrl":"10.1111/jir.13182","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Self-determination refers to setting goals and making decisions regarding one's own life with support from others as needed. Research on people with intellectual and developmental disabilities has established the importance of self-determination for quality of life outcomes, such as increased independence and life satisfaction. However, self-determination has not been characterised specifically in fragile X syndrome (FXS), the leading inherited cause of intellectual disability. Relative to youth with other forms of intellectual and developmental disabilities, youth with FXS may face exceptional barriers to the development of self-determined behaviour. In addition to intellectual disability, the FXS behavioural profile is characterised by high rates of autism and anxiety that may further limit opportunities for youth with FXS. The heritable nature of the condition can also yield a distinctive family environment, with siblings and parents also living with fragile X or its associated conditions. Considering these unique challenges, the present study examined self-determination in young adult males and females with FXS and explored whether factors such as language skills, adaptive behaviour and autism traits were associated with self-determination capacity and opportunities.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The present study included 9 females and 36 males with FXS between the ages of 17 and 25 years. Caregivers (mothers or fathers) completed the American Institute for Research Self-Determination Assessment, which is a questionnaire that yields three scores: self-determination capacity, opportunities for self-determination at home and opportunities for self-determination at school.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Caregivers endorsed a wide range of self-determination capacity and opportunities, with ratings for opportunities at home and school exceeding ratings of capacity. Better adaptive behaviour skills were associated with more self-determination capacity, and the presence of more autism traits was associated with fewer opportunities at school.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Results from this study contribute to our understanding of avenues to best support young adults with FXS as they transition to adulthood. Our findings also have implications for practice, such that interventions targeting adaptive behaviours and self-determination may be an effective approach for promoting autonomy and independence for young adults with FXS. Additionally, caregivers and educat","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2024-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13182","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141971296","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":"Stressful life events, post-traumatic stress disorder symptoms and mental health in individuals with intellectual disabilities: a scoping review","authors":"M. Rouleaux,&nbsp;N. Peters-Scheffer,&nbsp;R. Lindauer,&nbsp;L. Mevissen,&nbsp;R. Didden","doi":"10.1111/jir.13178","DOIUrl":"10.1111/jir.13178","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Stressful life events are events that do not fulfil the A criterion of PTSD in the DSM-5(TR) but are perceived as negative by the person. There is an ongoing debate about the usefulness of the A criterion as a gate criterion for PTSD, and especially regarding which events qualify as traumatic or stressful life events. This debate is particularly important for individuals with intellectual disabilities (ID) or borderline intellectual functioning (BIF), as they seem to be more likely to experience traumatic and stressful life events than their peers without ID-BIF and appear to be more susceptible to the disruptive effects of these events. As a result, people with ID-BIF are more likely to develop mental health and behavioural problems. There is insufficient knowledge about how the relationship between stressful life events and PTSD symptoms should be interpreted, how traumatic and stressful life events are defined and distinguished in people with ID, and whether the A criterion should be broadened for individuals with ID-BIF. The aim of this scoping review was to understand stressful life events and their relationship with PTSD symptoms, other mental health and/or behavioural problems in individuals with ID-BIF.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The scoping review was conducted in accordance with the JBI methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR).&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Thirty-eight studies were included. Five studies focused on stressful life events and PTSD symptoms. The other studies examined associations between stressful life events and other mental health and/or behavioural problems. Most of the studies did not clearly differentiate between stressful and traumatic events according to the A criterion of PTSD in the DSM-IV (TR) or DSM-5(TR). Of the six studies in which stressful life events were specified and could be distinguished from traumatic events, one found a positive association between PTSD symptoms and stressful life events and five showed weak to strong positive associations with other mental health and/or behavioural problems.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;PTSD symptoms following stressful life events in individuals with ID-BIF are underrepresented in the literature. The lack of a clear definition of stressful life events leads to a gap in the knowledge on whether and how stressful life events may lead to PTSD symptoms, other mental he","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2024-08-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13178","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141916944","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":"Laboratory-based measures of executive function and daily living skills in young children with Down syndrome: informing future interventions","authors":"K. Van Deusen,&nbsp;M. A. Prince,&nbsp;M. M. Walsh,&nbsp;A. J. Esbensen,&nbsp;L. R. Patel,&nbsp;M. E. Pinks,&nbsp;A. J. Thurman,&nbsp;L. Abbeduto,&nbsp;L. A. Daunhauer,&nbsp;D. J. Fidler","doi":"10.1111/jir.13176","DOIUrl":"10.1111/jir.13176","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adaptive behaviour refers to the practical skills necessary for independence and is considered a high-priority intervention target for children with neurogenetic conditions associated with intellectual disability, like Down syndrome (DS). Daily living skills (DLS) are a critical aspect of adaptive behaviour, but they have received little intervention attention, possibly because they involve a wide variety of skills across many settings. The present study aimed to advance DLS intervention science by examining the concurrent and longitudinal association between DLS performances and a cognitive skillset hypothesised to support DLS skill acquisition, executive function (EF).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participants were 71 children with DS between the ages of 2.5 and 8.7 years (M = 5.23 years; standard deviation = 1.65) who completed a battery of adapted EF tasks and a primary caregiver who completed the Vineland Adaptive Behavior Scales 3rd Edition Parent/Caregiver Comprehensive Report Form. A subset of caregivers also provided 6- and 12-month follow-up adaptive behaviour information.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Results demonstrated a positive association between EF task performance and DLS standard scores and <i>v</i>-scores both concurrently and longitudinally.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings have implications for potential future intervention approaches that aim to strengthen DLS performances by advancing EF skills in this population.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2024-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13176","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141901966","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":"Characterising repetitive behaviours in children and adolescents with Down syndrome","authors":"E. Fucà,&nbsp;F. Costanzo,&nbsp;S. Vicari","doi":"10.1111/jir.13179","DOIUrl":"10.1111/jir.13179","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disability, including people with Down syndrome (DS), often exhibit restricted and repetitive behaviours (RRBs). However, RRBs have not been deeply characterised in children and adolescents with DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The study encompassed a cohort of 151 participants aged 4 to 18 years with DS. RRBs were assessed utilising the Repetitive Behaviour Scale-Revised. Additionally, data pertaining to cognitive and adaptive functioning, linguistic abilities, sleep patterns and emotional/behavioural issues were gathered.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Self-injurious behaviours were reported less frequently whereas parents most commonly endorsed items related to behaviours associated with the need for sameness and ritualistic behaviours. We observed very few gender differences, whereas some age-related differences emerged, with adolescents exhibiting higher scores in items related with higher-level RRBs. The analysis of the association between RRBs and clinical features revealed that RRBs were associated with parent-reported sleep difficulties, as well as with internalising and externalising problems. We also observed a negative correlation with IQ whereas associations with adaptive skills emerged mainly for lower-level RRBs, such as motor stereotypies. Finally, RRBs were negatively associated with linguistic abilities, both expressive and receptive.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>RRBs in children and adolescents with DS are of significant clinical interest due to their associations with various clinical dimensions. Therefore, psychological and neuropsychiatric assessment should include an accurate evaluation of RRBs for young people with DS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2024-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13179","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141893571","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":"IASSIDD 2024","authors":"","doi":"10.1111/jir.13166","DOIUrl":"10.1111/jir.13166","url":null,"abstract":"","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141792645","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}