Elizabeth Croot, Alice Dunning, Andrew Booth, Clare Tarling
Background
Individual service funds (ISFs) in England aim to provide self-directed support without the challenge of procuring support and managing a budget. However, few local authorities offer ISFs and some do not offer more choice and control than a council-managed budget.
Methods
This participatory realist review followed RAMESES publication standards. We developed and refined theories using published and grey literature, expert stakeholders and personal narratives (written and video case studies).
Results
We identified eight initial programme theories, forming a programme theory explaining how ISFs generate successful outcomes for adults with intellectual disabilities. These included: involvement in support planning; accessible budget information; flexible use of budgets; outcome-focused support planning; ‘live’ support plans; non-traditional support; positive risk management and trusting relationships.
Conclusion
Our programme theory elucidates causal pathways for successful ISF outcomes, connecting mechanisms to contextual factors. This guides ISF development and implementation and helps adults with intellectual disabilities make informed decisions about ISFs.
{"title":"Using Individual Service Funds (ISFs) to Improve Access to Self-Directed Support for Adults With Intellectual Disabilities: A Participatory Realist Review","authors":"Elizabeth Croot, Alice Dunning, Andrew Booth, Clare Tarling","doi":"10.1111/jar.70148","DOIUrl":"10.1111/jar.70148","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individual service funds (ISFs) in England aim to provide self-directed support without the challenge of procuring support and managing a budget. However, few local authorities offer ISFs and some do not offer more choice and control than a council-managed budget.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This participatory realist review followed RAMESES publication standards. We developed and refined theories using published and grey literature, expert stakeholders and personal narratives (written and video case studies).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We identified eight initial programme theories, forming a programme theory explaining how ISFs generate successful outcomes for adults with intellectual disabilities. These included: involvement in support planning; accessible budget information; flexible use of budgets; outcome-focused support planning; ‘live’ support plans; non-traditional support; positive risk management and trusting relationships.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Our programme theory elucidates causal pathways for successful ISF outcomes, connecting mechanisms to contextual factors. This guides ISF development and implementation and helps adults with intellectual disabilities make informed decisions about ISFs.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12686772/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145710402","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tamar Rutter, Richard Hastings, Nicola Enoch, Samantha Flynn, Matthew Randell, Chris Stinton
Background
Parental experiences of prenatal testing and receiving a Down syndrome diagnosis for their child are impacted by the quality of information and support available. We explored the care experiences of mothers living in Great Britain who received a prenatal or postnatal Down syndrome diagnosis.
Method
Mothers (N = 280) of children with Down syndrome born between 2019 and 2022 completed an online survey about being offered prenatal diagnostic testing and receiving a prenatal or postnatal diagnosis.
Results
Qualitative findings underscored the impact of sensitive, supportive care and communication on participants' sense of autonomy and emotional adjustment. However, many participants felt information about Down syndrome was imbalanced, outdated, or insufficient. Some also reported feeling pressured to undergo diagnostic testing or pregnancy termination.
Conclusions
The findings highlight the importance of communication that prioritises individual needs, and of ensuring healthcare professionals are equipped to support parents as they begin their parenting journey.
{"title":"Down Syndrome in British Maternity Care: Mothers' Experiences of Prenatal Testing and Receiving a Prenatal or Postnatal Diagnosis","authors":"Tamar Rutter, Richard Hastings, Nicola Enoch, Samantha Flynn, Matthew Randell, Chris Stinton","doi":"10.1111/jar.70160","DOIUrl":"10.1111/jar.70160","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Parental experiences of prenatal testing and receiving a Down syndrome diagnosis for their child are impacted by the quality of information and support available. We explored the care experiences of mothers living in Great Britain who received a prenatal or postnatal Down syndrome diagnosis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Mothers (<i>N</i> = 280) of children with Down syndrome born between 2019 and 2022 completed an online survey about being offered prenatal diagnostic testing and receiving a prenatal or postnatal diagnosis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Qualitative findings underscored the impact of sensitive, supportive care and communication on participants' sense of autonomy and emotional adjustment. However, many participants felt information about Down syndrome was imbalanced, outdated, or insufficient. Some also reported feeling pressured to undergo diagnostic testing or pregnancy termination.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings highlight the importance of communication that prioritises individual needs, and of ensuring healthcare professionals are equipped to support parents as they begin their parenting journey.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12683471/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145703238","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Andrew Jahoda, Kelly Vinquist, Audrey Blakeley-Smith, Caitlin M. Conner
{"title":"Adaptations to Psychological Therapies for People With Intellectual Disabilities","authors":"Andrew Jahoda, Kelly Vinquist, Audrey Blakeley-Smith, Caitlin M. Conner","doi":"10.1111/jar.70158","DOIUrl":"10.1111/jar.70158","url":null,"abstract":"","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145679885","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
This brief report examines the challenges faced by adults with intellectual disabilities in Southern Africa regarding intimate relationships, parenthood and access to reproductive health services. Despite cultural values like Ubuntu emphasising interconnectedness, stigma, remnants of colonialism and underdeveloped service systems continue to marginalise individuals with intellectual disabilities.
Method
This report synthesises existing literature to explore how cultural, historical and systemic factors shape the experiences of adults with intellectual disabilities.
Results
Findings reveal that cultural and religious beliefs stigmatise persons with intellectual disabilities and that this impacts opportunities for intimate relationships and parenthood. Inadequate reproductive health services and untrained healthcare providers perpetuate misconceptions and neglect, impacting the realisation of social roles for persons with intellectual disabilities.
Conclusions
Culturally responsive, disability-inclusive policies must address systemic exclusions. Future research should document lived experiences and develop targeted interventions, fostering a more inclusive environment where individuals and parents with intellectual disabilities can thrive.
{"title":"Barriers to Reproductive Health Access and Parenthood for Persons With Intellectual Disabilities in Southern Africa","authors":"S. Moyo, L. Pacheco, P. B. Adjei","doi":"10.1111/jar.70159","DOIUrl":"10.1111/jar.70159","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This brief report examines the challenges faced by adults with intellectual disabilities in Southern Africa regarding intimate relationships, parenthood and access to reproductive health services. Despite cultural values like Ubuntu emphasising interconnectedness, stigma, remnants of colonialism and underdeveloped service systems continue to marginalise individuals with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This report synthesises existing literature to explore how cultural, historical and systemic factors shape the experiences of adults with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Findings reveal that cultural and religious beliefs stigmatise persons with intellectual disabilities and that this impacts opportunities for intimate relationships and parenthood. Inadequate reproductive health services and untrained healthcare providers perpetuate misconceptions and neglect, impacting the realisation of social roles for persons with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Culturally responsive, disability-inclusive policies must address systemic exclusions. Future research should document lived experiences and develop targeted interventions, fostering a more inclusive environment where individuals and parents with intellectual disabilities can thrive.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145672432","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Linda Monterroso Hurtado, Zachary Rossetti, Joyce Maring
Background
This study aimed to understand the well-being, caregiver burden and support of sibling caregivers of individuals with intellectual and developmental disabilities.
Method
This survey study gathered insights from adult sibling caregivers about their well-being, caregiver burden and sources of support. Demographic information was collected. Self-reported well-being measures were assessed. A descriptive analysis of the quantitative data was conducted. Qualitative data was analysed thematically. Differences and associations in scores related to income level were explored.
Results
Sibling caregivers reported taking care of their well-being but report high caregiver burden. As caregiver burden increases, well-being decreases (p = 0.001). Siblings with higher income report a significantly higher sense of well-being (p = 0.033). Qualitative responses highlight the need for sibling caregiver support.
Conclusion
The findings indicate relatively high caregiver burden and the importance of support for sibling caregivers. Future research is warranted focused on strategies to lessen caregiver burden and increase sibling well-being.
{"title":"Assessing Well-Being, Caregiver Burden and Support in Sibling Caregivers of Individuals With Intellectual and Developmental Disabilities","authors":"Linda Monterroso Hurtado, Zachary Rossetti, Joyce Maring","doi":"10.1111/jar.70154","DOIUrl":"10.1111/jar.70154","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study aimed to understand the well-being, caregiver burden and support of sibling caregivers of individuals with intellectual and developmental disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This survey study gathered insights from adult sibling caregivers about their well-being, caregiver burden and sources of support. Demographic information was collected. Self-reported well-being measures were assessed. A descriptive analysis of the quantitative data was conducted. Qualitative data was analysed thematically. Differences and associations in scores related to income level were explored.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Sibling caregivers reported taking care of their well-being but report high caregiver burden. As caregiver burden increases, well-being decreases (<i>p</i> = 0.001). Siblings with higher income report a significantly higher sense of well-being (<i>p</i> = 0.033). Qualitative responses highlight the need for sibling caregiver support.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The findings indicate relatively high caregiver burden and the importance of support for sibling caregivers. Future research is warranted focused on strategies to lessen caregiver burden and increase sibling well-being.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145650250","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Individuals with intellectual disabilities face increased risks of obesity and health issues. Carers in residential settings play a crucial role in shaping their dietary habits. This study explores how carers influence eating behaviours to identify strategies for healthy eating.
Method
Seventeen semi-structured interviews were conducted with carers from three community homes. Thematic analysis identified three key themes: (i) whose responsibility is it?; (ii) food autonomy and choice in the context of caring relationships; (iii) opportunities for working together to support dietary choices.
Results
Carers strive to encourage healthy eating while respecting residents' autonomy, particularly in those with cognitive impairments or on psychotropic medications. They use strategies like rapport-building, personalised care, and nutrition education. However, these efforts are limited by gaps in knowledge, time constraints, and variation in application and impact.
Conclusions
Findings highlight the practice gap and the need for better training and resources to support carers in promoting healthy food choices while respecting residents' autonomy.
{"title":"Eating Well When Living With an Intellectual Disability—Exploring the Carer: Client Relationship in Residential Settings","authors":"Aslıhan Özdemir, Hazel Chapman, Rebecca Hall, Basma Ellahi","doi":"10.1111/jar.70157","DOIUrl":"10.1111/jar.70157","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disabilities face increased risks of obesity and health issues. Carers in residential settings play a crucial role in shaping their dietary habits. This study explores how carers influence eating behaviours to identify strategies for healthy eating.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Seventeen semi-structured interviews were conducted with carers from three community homes. Thematic analysis identified three key themes: (i) whose responsibility is it?; (ii) food autonomy and choice in the context of caring relationships; (iii) opportunities for working together to support dietary choices.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Carers strive to encourage healthy eating while respecting residents' autonomy, particularly in those with cognitive impairments or on psychotropic medications. They use strategies like rapport-building, personalised care, and nutrition education. However, these efforts are limited by gaps in knowledge, time constraints, and variation in application and impact.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Findings highlight the practice gap and the need for better training and resources to support carers in promoting healthy food choices while respecting residents' autonomy.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-11-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12665284/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145643703","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
C. Peña-Salazar, N. Kazah, B. Carrillo, M. Pugés, I. Lupiañez, M. Irazábal, M. Lleonart, S. Ángel, S. Ochoa
Background
People with intellectual disabilities often present a discrepancy between emotional and cognitive development, which may play a role in the presence of some psychiatric disorders and problem behaviour (PB).
Method
Observational, cross-sectional study of 192 adults with intellectual disabilities and psychiatric disorders.
Results
We found a statistically significant relationship between level of emotional development (ED) and degree of intellectual disability, as well as with severity of PB and some kinds of neuropsychiatric and neurodevelopmental disorders. In a regression model, 61% of the variance in the global emotional development variable is explained by the variables: Intellectual disability mild–moderate and severe (B = −1.058; p < 0.001), Intellectual disability mild and moderate–severe (B = −0.118; p < 0.05), PB (B = −0.352; p < 0.005), autism spectrum disorder (ASD) (B = −0.129; p < 0.05) and adaptive behaviour (B = 0.017; p < 0.001).
Conclusions
Level of ED could be a key factor in the severity of PB and in the presence of some psychiatric disorders in people with intellectual disabilities.
智力障碍患者往往表现出情感和认知发展的差异，这可能与某些精神障碍和问题行为（PB）的存在有关。方法对192例成人智力障碍和精神障碍患者进行观察性横断面研究。结果情绪发展水平与智力残疾程度、PB严重程度及某些神经精神和神经发育障碍之间存在显著相关。在回归模型中，全球情绪发展变量中61%的方差可以用以下变量来解释：智力残疾轻中度和重度（B = - 1.058; p < 0.001）、智力残疾轻中度和重度（B = - 0.118; p < 0.05）、PB （B = - 0.352; p < 0.005）、自闭症谱系障碍（ASD） （B = - 0.129; p < 0.05）和适应行为（B = 0.017; p < 0.001）。结论ED水平可能是影响智障患者PB严重程度和存在某些精神障碍的关键因素。
{"title":"The Influence of the Level of Emotional Development on Neuropsychiatric Disorders and Problem Behaviour in People With Intellectual Disability. A Cross-Sectional Study in a Spanish Context","authors":"C. Peña-Salazar, N. Kazah, B. Carrillo, M. Pugés, I. Lupiañez, M. Irazábal, M. Lleonart, S. Ángel, S. Ochoa","doi":"10.1111/jar.70138","DOIUrl":"https://doi.org/10.1111/jar.70138","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities often present a discrepancy between emotional and cognitive development, which may play a role in the presence of some psychiatric disorders and problem behaviour (PB).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Observational, cross-sectional study of 192 adults with intellectual disabilities and psychiatric disorders.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We found a statistically significant relationship between level of emotional development (ED) and degree of intellectual disability, as well as with severity of PB and some kinds of neuropsychiatric and neurodevelopmental disorders. In a regression model, 61% of the variance in the global emotional development variable is explained by the variables: Intellectual disability mild–moderate and severe (<i>B</i> = −1.058; <i>p</i> < 0.001), Intellectual disability mild and moderate–severe (<i>B</i> = −0.118; <i>p</i> < 0.05), PB (<i>B</i> = −0.352; <i>p</i> < 0.005), autism spectrum disorder (ASD) (B = −0.129; <i>p</i> < 0.05) and adaptive behaviour (<i>B</i> = 0.017; <i>p</i> < 0.001).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Level of ED could be a key factor in the severity of PB and in the presence of some psychiatric disorders in people with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145626601","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Louise Allan, Nicola Roberts, Nicola Ring, Lisa O'Leary
Background
Respiratory-related illness including asthma is a leading cause of avoidable higher mortality in those with intellectual disabilities. International guidelines stress the importance of good self-management in avoiding asthma-related deaths but give no guidance on how this is achieved with this vulnerable population.
Method
A scoping review of published research to identify barriers and facilitators to promoting asthma self-management in people with intellectual disabilities.
Results
Only six studies published from 2015 to 2022 met study inclusion criteria. Studies commonly reported that the education of patients and caregivers was critical, with a lack of education being a barrier to good asthma control. Three studies also highlighted the importance of caregivers and support workers in helping those with intellectual disabilities to self-manage their asthma.
Conclusions
This review highlights the paucity of research in this area. Further research is urgently needed to improve asthma self-management in those with intellectual disabilities thereby reducing asthma-related deaths.
{"title":"Barriers and Enablers of Delivering Asthma Self-Management to Those With Intellectual Disabilities: A Scoping Review","authors":"Louise Allan, Nicola Roberts, Nicola Ring, Lisa O'Leary","doi":"10.1111/jar.70155","DOIUrl":"10.1111/jar.70155","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Respiratory-related illness including asthma is a leading cause of avoidable higher mortality in those with intellectual disabilities. International guidelines stress the importance of good self-management in avoiding asthma-related deaths but give no guidance on how this is achieved with this vulnerable population.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A scoping review of published research to identify barriers and facilitators to promoting asthma self-management in people with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Only six studies published from 2015 to 2022 met study inclusion criteria. Studies commonly reported that the education of patients and caregivers was critical, with a lack of education being a barrier to good asthma control. Three studies also highlighted the importance of caregivers and support workers in helping those with intellectual disabilities to self-manage their asthma.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This review highlights the paucity of research in this area. Further research is urgently needed to improve asthma self-management in those with intellectual disabilities thereby reducing asthma-related deaths.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70155","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145607868","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Peter Baker, Nick Gore, Suzi Sapiets, Jill Chaplin, Mark Murphy, Ceridwen Evans
Background
People with intellectual disabilities are at increased risk of presenting behaviours that challenge. Behaviour support plans (BSPs) guide the use of bespoke strategies to maximise life quality and reduce the risk of behaviours that challenge. The behaviour support plan content appraisal tool (BSP-CAT) was developed to assess and improve the quality of BSPs. The aim of this study was to examine the reliability of the BSP-CAT.
Method
Test–retest and inter-rater reliability were examined with the assistance of practitioners that supported adults with intellectual disabilities and behaviour that challenges. All participants received prior training and independently used the measure to score BSPs available to them.
Results
Participants provided 98 BSP-CAT scores for 47 behaviour support plans. Good to moderate reliability was established at the total and strand level.
Conclusions
Preliminary analysis suggests the BSP-CAT has encouraging reliability.
{"title":"The Behaviour Support Plan Content Appraisal Tool (BSP-CAT): A New Tool for Assessing and Improving the Quality of Behavioural Support Plans","authors":"Peter Baker, Nick Gore, Suzi Sapiets, Jill Chaplin, Mark Murphy, Ceridwen Evans","doi":"10.1111/jar.70153","DOIUrl":"10.1111/jar.70153","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities are at increased risk of presenting behaviours that challenge. Behaviour support plans (BSPs) guide the use of bespoke strategies to maximise life quality and reduce the risk of behaviours that challenge. The behaviour support plan content appraisal tool (BSP-CAT) was developed to assess and improve the quality of BSPs. The aim of this study was to examine the reliability of the BSP-CAT.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Test–retest and inter-rater reliability were examined with the assistance of practitioners that supported adults with intellectual disabilities and behaviour that challenges. All participants received prior training and independently used the measure to score BSPs available to them.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Participants provided 98 BSP-CAT scores for 47 behaviour support plans. Good to moderate reliability was established at the total and strand level.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Preliminary analysis suggests the BSP-CAT has encouraging reliability.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12641237/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145590132","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ellinor Nilsson, Stefan Johansson, Kristin Alfredsson Ågren, Ulrika Müssener
Background
People with intellectual disabilities experience significant health inequities. Digital interventions for health promotion are rarely designed from their specific needs. This study aimed to uncover core qualities of digital interventions for health promotion by exploring factors influencing health behaviours amongst people with intellectual disabilities.
Methods
This study was conducted in Sweden. Co-design was used across 10 workshops with 18 people with intellectual disabilities, five relatives, and 12 professionals. Verbal and visual data were analyzed using qualitative content analysis.
Results
Three categories were generated as factors influencing health behaviours: Integrating a Sense of Belonging, Building Confidence Through Involvement, and Ensuring Structural and Contextual Coherence. For each category, two core qualities for digital interventions were uncovered.
Conclusions
Digital interventions for health promotion targeting people with intellectual disabilities should integrate accessible design with social, emotional, and structural support, and be embedded within everyday contexts to foster empowerment, meaningful participation, and social connectedness.
{"title":"Uncovering Core Qualities of Digital Interventions for Health Promotion: Perspectives From People With Intellectual Disabilities, Relatives, and Professionals","authors":"Ellinor Nilsson, Stefan Johansson, Kristin Alfredsson Ågren, Ulrika Müssener","doi":"10.1111/jar.70151","DOIUrl":"10.1111/jar.70151","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities experience significant health inequities. Digital interventions for health promotion are rarely designed from their specific needs. This study aimed to uncover core qualities of digital interventions for health promotion by exploring factors influencing health behaviours amongst people with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study was conducted in Sweden. Co-design was used across 10 workshops with 18 people with intellectual disabilities, five relatives, and 12 professionals. Verbal and visual data were analyzed using qualitative content analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three categories were generated as factors influencing health behaviours: Integrating a Sense of Belonging, Building Confidence Through Involvement, and Ensuring Structural and Contextual Coherence. For each category, two core qualities for digital interventions were uncovered.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Digital interventions for health promotion targeting people with intellectual disabilities should integrate accessible design with social, emotional, and structural support, and be embedded within everyday contexts to foster empowerment, meaningful participation, and social connectedness.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 6","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12631160/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145558531","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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