Caitlin A. Murray, Nikita K. Hayden, Alex Gordon-Brown, Samantha Flynn, Clare Bonetree, Andrew Harper, Clare Kassa, David Mahon, Catherine McGee, Richard P. Hastings
Background
There is promising evidence for the adaptation of online mindfulness interventions for parent carers of individuals with intellectual and developmental disabilities by including supplementary peer support sessions. However, there remain questions about wider implementation beyond the research setting and the inclusion of more diverse populations of family caregivers, including adult siblings and family carers who less typically receive support and are often under-represented in research.
Method
One hundred and one family carers (n = 58 parents, n = 43 adult siblings) were provided with access to Be Mindful (an online mindfulness intervention) with additional telephone peer mentor support. Participants were asked to complete baseline and follow-up questionnaires before and after the intervention in a pre-post pre-experimental design, and engagement with the intervention and peer support was examined.
Results
Recruitment was successful in targeting more diverse groups, including adult siblings. Intervention completion was low overall (n = 37). Parent and sibling carers made differing levels of progress with the intervention and peer support calls, although 81.8% of those who completed the intervention before the end of the project had also received all three support calls. Preliminary follow-up data, though with low retention, indicated improvements in psychological wellbeing for family carers over time.
Conclusions
The intervention and additional telephone-guided support were received well by family carers of people with intellectual and developmental disabilities, although further work is needed to determine the feasibility of future implementation.
{"title":"Implementation of Online Mindfulness With Peer Mentoring for Parent and Sibling Carers of People With Intellectual and Developmental Disabilities","authors":"Caitlin A. Murray, Nikita K. Hayden, Alex Gordon-Brown, Samantha Flynn, Clare Bonetree, Andrew Harper, Clare Kassa, David Mahon, Catherine McGee, Richard P. Hastings","doi":"10.1111/jir.70057","DOIUrl":"10.1111/jir.70057","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>There is promising evidence for the adaptation of online mindfulness interventions for parent carers of individuals with intellectual and developmental disabilities by including supplementary peer support sessions. However, there remain questions about wider implementation beyond the research setting and the inclusion of more diverse populations of family caregivers, including adult siblings and family carers who less typically receive support and are often under-represented in research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>One hundred and one family carers (<i>n</i> = 58 parents, <i>n</i> = 43 adult siblings) were provided with access to Be Mindful (an online mindfulness intervention) with additional telephone peer mentor support. Participants were asked to complete baseline and follow-up questionnaires before and after the intervention in a pre-post pre-experimental design, and engagement with the intervention and peer support was examined.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Recruitment was successful in targeting more diverse groups, including adult siblings. Intervention completion was low overall (<i>n</i> = 37). Parent and sibling carers made differing levels of progress with the intervention and peer support calls, although 81.8% of those who completed the intervention before the end of the project had also received all three support calls. Preliminary follow-up data, though with low retention, indicated improvements in psychological wellbeing for family carers over time.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The intervention and additional telephone-guided support were received well by family carers of people with intellectual and developmental disabilities, although further work is needed to determine the feasibility of future implementation.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 3","pages":"337-344"},"PeriodicalIF":2.0,"publicationDate":"2025-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12872373/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145329326","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}
Mirthe J. Klein Haneveld, Katarzyna Świeczkowska, Tomasz Grybek, Kinga Labunets, Thérèse A. M. J. van Amelsvoort, Maria F. Bedeschi, Claire Behan, Andreas Dufke, Juliette Dupont, Charlotte M. W. Gaasterland, Livia Garavelli, Sissel B. Helverschou, Susan McAnallen, Katarzyna A. Milska-Musa, AnneLoes van Staa, Ioana Streață, Connie T. R. M. Stumpel, Federica Tamburrino, Mary Vasseghi, Klea Vyshka, Jolanta M. Wierzba, ERN-ITHACA Guideline Working Group, Agnies M. van Eeghen
Background
For young people with rare genetic neurodevelopmental disorders associated with intellectual disabilities, the transfer from paediatric to adult healthcare providers is often complicated. The European Reference Network ERN-ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) on Rare Congenital Malformations and Rare Intellectual Disability aims to improve this transition through the development of a guideline.
Method
Population-specific recommendations for the optimal transition to adult healthcare were developed by an interdisciplinary consortium, representing clinical, scientific and lived experience experts from nine European countries. Recommendations of the 2016 National Institute for Health and Care Excellence (NICE) guideline ‘Transition From Children's to Adults' Services for Young People Using Health or Social Care Services’ (NG43) were adapted, based on a literature review, expert opinion and lived experiences gathered through a survey, focus groups and discussions with self-advocates. A consensus meeting was held in Gdańsk, Poland, in October 2024.
Results
NICE guideline recommendations were adopted or adapted to the target population where necessary. New recommendations were formulated regarding the involvement of and assistance for young people and their families/caregivers, the coordination of interdisciplinary care, the role of centres of expertise, recommended interventions and psychosocial support.
Conclusions
Planned, coordinated, specialised, individualised and interdisciplinary healthcare is required to support young people with (genetic) intellectual disabilities. Active collaboration between healthcare providers, researchers and individuals with lived experience is essential both to improve current healthcare and to build a stronger evidence base for successful transition interventions going forward.
{"title":"Transition From Children's to Adults' Healthcare for Youth With (Genetic) Intellectual Disabilities: An ERN-ITHACA Guideline","authors":"Mirthe J. Klein Haneveld, Katarzyna Świeczkowska, Tomasz Grybek, Kinga Labunets, Thérèse A. M. J. van Amelsvoort, Maria F. Bedeschi, Claire Behan, Andreas Dufke, Juliette Dupont, Charlotte M. W. Gaasterland, Livia Garavelli, Sissel B. Helverschou, Susan McAnallen, Katarzyna A. Milska-Musa, AnneLoes van Staa, Ioana Streață, Connie T. R. M. Stumpel, Federica Tamburrino, Mary Vasseghi, Klea Vyshka, Jolanta M. Wierzba, ERN-ITHACA Guideline Working Group, Agnies M. van Eeghen","doi":"10.1111/jir.70049","DOIUrl":"10.1111/jir.70049","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>For young people with rare genetic neurodevelopmental disorders associated with intellectual disabilities, the transfer from paediatric to adult healthcare providers is often complicated. The European Reference Network ERN-ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) on Rare Congenital Malformations and Rare Intellectual Disability aims to improve this transition through the development of a guideline.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Population-specific recommendations for the optimal transition to adult healthcare were developed by an interdisciplinary consortium, representing clinical, scientific and lived experience experts from nine European countries. Recommendations of the 2016 National Institute for Health and Care Excellence (NICE) guideline ‘Transition From Children's to Adults' Services for Young People Using Health or Social Care Services’ (NG43) were adapted, based on a literature review, expert opinion and lived experiences gathered through a survey, focus groups and discussions with self-advocates. A consensus meeting was held in Gdańsk, Poland, in October 2024.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>NICE guideline recommendations were adopted or adapted to the target population where necessary. New recommendations were formulated regarding the involvement of and assistance for young people and their families/caregivers, the coordination of interdisciplinary care, the role of centres of expertise, recommended interventions and psychosocial support.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Planned, coordinated, specialised, individualised and interdisciplinary healthcare is required to support young people with (genetic) intellectual disabilities. Active collaboration between healthcare providers, researchers and individuals with lived experience is essential both to improve current healthcare and to build a stronger evidence base for successful transition interventions going forward.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 1","pages":"29-47"},"PeriodicalIF":2.0,"publicationDate":"2025-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70049","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145337104","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}
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.
Method
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.
Results
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.
Conclusions
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.
{"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":"10.1111/jir.70056","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 2","pages":"162-170"},"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}
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, ENCORE group, André Rietman
Background
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).
Method
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.
Results
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.
Conclusions
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.
{"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, ENCORE group, André Rietman","doi":"10.1111/jir.70026","DOIUrl":"10.1111/jir.70026","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 12","pages":"1382-1393"},"PeriodicalIF":2.0,"publicationDate":"2025-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70026","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":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
Method
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.
Results
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.
Conclusions
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.
{"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":"10.1111/jir.70048","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 3","pages":"242-261"},"PeriodicalIF":2.0,"publicationDate":"2025-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12872379/pdf/","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":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Alexandra I Haenen, Noud Frielink, Jans S van Ool, Francesca M Snoeijen-Schouwenaars, Petri J C M Embregts
Background: 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.
Methods: 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.
Results: 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).
Discussion: 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.
背景：癫痫是一种常见于智力残疾人群的慢性神经系统疾病，深刻影响着生活的各个方面。了解癫痫与这一人群生活质量下降之间的关系，可以从探索生活质量的一个关键方面——自我决定中获益。自我决定在一生中不断发展，受到个人和环境因素的影响，包括智力残疾和获得支持性干预措施的机会。本综述旨在梳理现有研究，以确定影响智力残疾和癫痫患者自我决定的个人和环境因素。方法：于2022年12月系统检索Embase、MEDLINE ALL、PsycINFO、CINAHL、Cochrane Central Register of Controlled Trials、Web of Science、ERIC和谷歌Scholar 8个电子数据库，并于2024年10月2日再次检索，更新之前检索的内容。所有提供关于智力残疾和癫痫患者（10岁以上）自我决定的原始研究数据的英语研究均被纳入，没有日期限制。使用混合方法评估工具（MMAT）评估纳入研究的方法学质量。为了提取数据，我们使用了PCC（人口、概念和上下文）框架。为了分析数据，我们采用了描述性专题分析。结果：在确定的1485份记录中，有9项研究符合条件。这些研究采用定性设计（n = 7）或定量案例研究（n = 2）。这些研究总共包括68名不同程度的智力残疾和癫痫类型的参与者和115名护理人员。确定了五个总体主题：(1)管理癫痫的不同方法（n = 4）；(2)与卫生保健专业人员的信息共享和协作信任（n = 5）；(3)在保健和支助方面需要得到承认和自主（n = 5）；(4)父母和专业人员接管决策的倾向及其相关的担忧、责任和情绪（n = 6）；(5)在护理和支持中考虑个人偏好的重要性（n = 5）。讨论：本综述揭示了个人因素（即个人应对策略）和环境因素（即与父母和专业人员的关系特征）在塑造智力残疾和癫痫患者自我决定方面的复杂相互作用。这些见解强调了开发干预措施以提高自我效能的重要性，以及为护理人员和专业人员提供自主支持技能的具体培训的重要性，以改善个人层面的福祉。本综述还强调需要进行定量研究，以提高研究结果的普遍性。
{"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}
Sara Lindstedt, Christian Rück, Tatja Hirvikoski, Emma Hintze, Johan Lundin Kleberg, Leoni Grossmann, John Wallert, Johan Bjureberg, Oskar Flygare
Background: 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.
Methods: 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.
Results: 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%).
Conclusion: 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.
背景：智力残疾（ID）的个体不成比例地暴露于几种自杀风险因素中。然而，目前还没有荟萃分析量化这一人群中自杀和自残（包括自杀企图）的相对风险。这个项目的目的是汇集和综合对ID患者自杀行为的研究。方法：进行系统综述和荟萃分析。Medline, Embase， Web of Science和PsycInfo从创立到2025年8月4日进行了检索。采用定量设计的观察性研究，评估有或没有身份证的人自杀或自残的相对风险，包括自杀企图。偏倚风险评估采用缩短版的非随机暴露研究偏倚风险（ROBINS-E）检查表。随机效应模型用于综合结果。结果：综述纳入了11项初步研究（n = 241 438）。ID的严重程度仅在两篇文章中出现。与一般人群相比，自杀死亡的总相对风险为0.54 (95% CI 0.33 ~ 0.89, k = 6, I2 = 77%)，自残的相对风险为3.16 （95% CI 2.3 ~ 4.35, k = 6, I2 = 89%）。结论：研究结果表明，与一般人群相比，ID患者有较高的自残风险，但死于自杀的风险较低。然而，由于初步研究数量有限，且研究间存在较大异质性，因此对这些结果的解释应谨慎。此外，有必要对轻度与中度至深度的ID进行单独分析。
{"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, I<sup>2</sup> = 77%) and the relative risk for self-harm was 3.16, (95% CI 2.3 to 4.35, k = 6, I<sup>2</sup> = 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}
<p>The intellectual disability (ID) research landscape has seen a considerable transformation over the past decade, with a new emphasis on inclusive and open research practices being prioritised (de Haas et al. <span>2022</span>). Inclusivity in research is an umbrella construct that at its heart requires research to be truly collaborative, accessible and driven by the interests of the population for whom it is about (Garratt et al. <span>2022</span>; Walmsley and Johnson <span>2003</span>), with evidence of inclusivity in practice increasing throughout the field of ID research. Concomitant with this transformation in ID research have been paradigmatic shifts to the wider research landscape over the past 4 years, with many research studies requiring wholesale redesign to be compatible with the remote, restricted environment conferred by the Covid-19 pandemic. Common adaptations include research studies moving online (Song et al. <span>2020</span>), utilising remote technology to collate data (eye tracking—[Vos et al. <span>2022</span>; Fraser et al. <span>2025</span>]; video conferencing software—[Humphries et al. <span>2022</span>]; mobile apps—[Wijesooriya et al. <span>2020</span>]) and adopting a citizen science approach to minimise researcher contact with participants (Dow et al. <span>2022</span>). We discuss how these research design adaptations, necessary for research to be compatible with a remote context, may have inadvertently had widescale benefit for children with ID for whom traditional research practices were often inaccessible. First, we will highlight adaptations necessary for ID research to be compatible with the remote context of the pandemic, before discussing how these approaches may support wider research adaptations seen across the research landscape to promote more replicable and open science. Finally, we will provide practical suggestions for ID researchers, discussing how these two approaches are compatible to promote better research practices. ID researchers designing future studies should endeavour to incorporate some of the lessons learned from research designs created within the context of the Covid-19 pandemic to promote a more accessible and inclusive environment for people with ID overall.</p><p>Adapting research protocols to be inclusive and accessible for children with ID is not a new idea. Historically, the traditional approach has been to subtly adapt research paradigms to be more suitable for the specific needs of children with ID. Examples of such adaptations include the addition of easy-read information sheets into existing protocols (Chinn and Homeyard <span>2017</span>), transformation of ‘traditional’ psychological tasks such as the ‘tower of London’ (Masson et al. <span>2010</span>) and creating alternate survey instruments specifically for people with ID (Nicolaidis et al. <span>2020</span>). These subtle shifts in research design reflect a direct challenge that cuts across ID research; that of ensuring
在过去十年中，智障（ID）研究领域发生了相当大的变化，新的重点是包容和开放的研究实践（de Haas et al. 2022）。研究中的包容性是一个伞形结构，其核心要求研究真正具有协作性、可访问性，并受研究对象的利益驱动（Garratt et al. 2022; Walmsley and Johnson 2003），在整个ID研究领域，实践中的包容性越来越多。在过去4年里，与ID研究的这种转变相伴随的是向更广泛的研究领域的范式转变，许多研究需要全面重新设计，以适应Covid-19大流行带来的偏远、受限的环境。常见的调整包括在线研究（Song等人，2020），利用远程技术整理数据（眼动追踪- [Vos等人，2022；Fraser等人，2025]；视频会议软件- [Humphries等人，2022]；移动应用程序- [Wijesooriya等人，2020]），并采用公民科学方法尽量减少研究人员与参与者的接触（Dow等人，2022）。我们讨论了这些研究设计的适应，对于研究与远程环境相兼容是必要的，可能无意中对具有ID的儿童产生了广泛的好处，因为传统的研究实践通常是无法获得的。首先，我们将强调ID研究与大流行的远程背景相兼容所需的适应，然后讨论这些方法如何支持整个研究领域中看到的更广泛的研究适应，以促进更具可复制性和开放性的科学。最后，我们将为ID研究人员提供实用建议，讨论这两种方法如何兼容以促进更好的研究实践。设计未来研究的ID研究人员应努力从2019冠状病毒病大流行的背景下创建的研究设计中吸取一些经验教训，为ID患者提供一个更容易获得和包容的环境。调整研究方案，使其对患有身份证的儿童具有包容性和可及性，并不是一个新想法。从历史上看，传统的方法是巧妙地调整研究范式，使其更适合患有ID的儿童的特定需求。这种调整的例子包括在现有协议中添加易于阅读的信息表（Chinn and Homeyard 2017），改造“传统”心理任务，如“伦敦塔”（Masson et al. 2010），以及专门为ID患者创建替代调查工具（Nicolaidis et al. 2020）。这些研究设计上的微妙变化反映了贯穿ID研究的直接挑战；确保适应保持任务的有效性，同时使研究能够满足患有ID的儿童的个人需求。这种考虑通常意味着，尽管一些研究确实适用于某些患有ID的儿童，但通常结果并不完全适用于所有患有ID的儿童。对于有最严重的智力障碍或更复杂的个人需求的人来说，微妙的设计变化并不总是足够容易实现的。对于患有ID和并发疾病（如自闭症、多动症、癫痫或罕见遗传综合征）的儿童，这种困难会加剧，因此这些儿童往往被排除在研究之外（Russell et al. 2019）。这些任务管理的微妙变化并没有减少在参加面对面研究（通常被认为是参与者研究的“黄金标准”）的旅行中隐含的情感、身体和感官障碍。因此，尽管知情且有力的研究的证据基础不断增长，但如果这项研究仅代表能够切实参与的ID儿童的比例，则潜在的偏见也会增加。与研究设计的细微变化形成鲜明对比的是，为使研究与Covid-19大流行相兼容，必须进行调整。这场大流行影响了全球生活的方方面面，从医疗保健、教育、经济到日常研究的开展（世界卫生组织，2020年）。在此期间，研究人员面临着一个决定，要么暂停与必要的社会距离和流行病限制不相容的“传统”研究设计，要么完全重新设计和调整计划以适应新的环境。许多研究人员选择进行调整，通常的做法是成为完全在线交付的协议（Torrentira 2020），设计优先考虑视频会议软件而不是面对面的评估，并尽量减少有形的研究设备，例如转向使用移动应用程序而不是参与者的文书工作（Tiersma et al. 2022）。 设计了进行直接临床评估的全新方法（例如，创建“BOSA”作为黄金标准“ADOS”的替代方法[Dow et al. 2022]）。这些方法的主要目的是确保研究能够在大流行带来的新的限制性环境中继续进行。然而，应该承认，这些变化的另一个无意的影响是向无法进入传统研究环境的儿童开放研究参与。因此，向远程交付研究的转变可能反映了研究方法的缩小，但为那些偏好和唯一的访问方法是在自己熟悉的环境中参与的人开辟了研究。更广泛地说，在整个研究领域，向预注册和开放研究设计的转变（因Covid-19大流行而加速）意味着所有人都可以看到研究人员做出的许多调整。大力鼓励并越来越广泛地采用研究注册（Simmons et al. 2021），允许研究人员在开始数据收集之前记录精确的计划和假设。这一过程对科学领域和ID研究有两个直接的好处。首先，研究人员在数据收集和随后的科学文章之前清楚地记录了原始假设和分析方法，减少了不良研究实践的风险，增加了研究结果的可信度。糟糕的研究实践，如在结果已知后进行假设（“HARKing”）、寻找重要结果（p-hacking）或缺乏说服力的分析，可以巧妙地渗透到研究设计中，损害研究结果的有效性和可靠性。这在临床和罕见人群中尤其令人担忧，如患有ID的儿童，其结果具有相当大的临床意义。其次，预注册的使用允许更广泛的科学领域看到并从其他研究人员描述的当前适应中学习，赋予进步渐进的优势，并促进更多的合作方法来解决复杂的科学问题。例如，表1提供了在开放科学框架[OSF]网站上提供的用于研究患有ID的儿童的远程研究设计预注册的一些示例的非详尽列表。专门针对ID儿童的研究的注册数量每年都在增加，这表明ID研究越来越倾向于采用开放和可复制的研究实践。最后，使用包含“公民科学”方法的协议是一个关键的创新，它使患有ID的儿童能够特别容易地进行研究。公民科学方法可以通过非专业公众成员的参与（例如，患有ID的儿童的主要照顾者）与科学家合作管理研究协议来实施（Bonney et al. 2009）。在整个大流行期间，这种方法往往是必要的，因为偏远地区有时是收集符合社交距离限制的数据的唯一途径。然而，公民科学方法现在正被越来越广泛地采用，特别是作为对普遍存在的普遍性和可复制性问题的潜在解决方案，这些问题已经给心理学研究带来了危机（Yarkoni 2022）。在对典型发育儿童的研究中，公民科学方法现在得到了很好的利用，例如，父母提交婴儿的视频片段供研究人员研究笑声（Addyman and Addyman 2013），获得大型数据集来描述婴儿的发声（Semenzin et al. 2021），并探索课堂内短暂活动的价值（Booth et al. 2020）。通常，这些方法将科学协议带入日常环境。因此，这种方法似乎完全有利，并且与旨在对患有身份证的人更具包容性的研究相兼容，然而，在大流行的必要远程研究背景之外，很少对患有身份证的儿童采用公民科学方法。当然，非专业人员参与科学设计也会带来挑战，其中最明显的两个问题是缺乏潜在的严谨性和控制力（Nov et al. 2014）。然而，当考虑到迄今为止提到的更广泛的问题（传统研究设计缺乏可及性，研究的普遍性和可靠性的更广泛问题）时，将公民科学方法纳入ID研究是研究人员考虑提高研究的可及性和可靠性的一个令人兴奋的领域。在整个心理学研究中，人们普遍认为可复制和开放的研究确实推动了科学发展，改善了理论发展，增强了研究的稳健性（Nosek et al
{"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":"10.1111/jir.70055","url":null,"abstract":"<p>The intellectual disability (ID) research landscape has seen a considerable transformation over the past decade, with a new emphasis on inclusive and open research practices being prioritised (de Haas et al. <span>2022</span>). Inclusivity in research is an umbrella construct that at its heart requires research to be truly collaborative, accessible and driven by the interests of the population for whom it is about (Garratt et al. <span>2022</span>; Walmsley and Johnson <span>2003</span>), with evidence of inclusivity in practice increasing throughout the field of ID research. Concomitant with this transformation in ID research have been paradigmatic shifts to the wider research landscape over the past 4 years, with many research studies requiring wholesale redesign to be compatible with the remote, restricted environment conferred by the Covid-19 pandemic. Common adaptations include research studies moving online (Song et al. <span>2020</span>), utilising remote technology to collate data (eye tracking—[Vos et al. <span>2022</span>; Fraser et al. <span>2025</span>]; video conferencing software—[Humphries et al. <span>2022</span>]; mobile apps—[Wijesooriya et al. <span>2020</span>]) and adopting a citizen science approach to minimise researcher contact with participants (Dow et al. <span>2022</span>). We discuss how these research design adaptations, necessary for research to be compatible with a remote context, may have inadvertently had widescale benefit for children with ID for whom traditional research practices were often inaccessible. First, we will highlight adaptations necessary for ID research to be compatible with the remote context of the pandemic, before discussing how these approaches may support wider research adaptations seen across the research landscape to promote more replicable and open science. Finally, we will provide practical suggestions for ID researchers, discussing how these two approaches are compatible to promote better research practices. ID researchers designing future studies should endeavour to incorporate some of the lessons learned from research designs created within the context of the Covid-19 pandemic to promote a more accessible and inclusive environment for people with ID overall.</p><p>Adapting research protocols to be inclusive and accessible for children with ID is not a new idea. Historically, the traditional approach has been to subtly adapt research paradigms to be more suitable for the specific needs of children with ID. Examples of such adaptations include the addition of easy-read information sheets into existing protocols (Chinn and Homeyard <span>2017</span>), transformation of ‘traditional’ psychological tasks such as the ‘tower of London’ (Masson et al. <span>2010</span>) and creating alternate survey instruments specifically for people with ID (Nicolaidis et al. <span>2020</span>). These subtle shifts in research design reflect a direct challenge that cuts across ID research; that of ensuring","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 1","pages":"68-75"},"PeriodicalIF":2.0,"publicationDate":"2025-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70055","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":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
Method
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.
Results
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.
Conclusions
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.
{"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":"10.1111/jir.70050","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>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>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 1","pages":"48-57"},"PeriodicalIF":2.0,"publicationDate":"2025-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70050","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":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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