Emily K. Schworer, Matthew D. Zammit, Benjamin L. Handen, Brianna Piro-Gambetti, Melissa R. Jenkins, Courtney Brothers, Ozioma C. Okonkwo, Christy L. Hom, Beau M. Ances, Bradley T. Christian, Sigan L. Hartley
Background
People with Down syndrome (DS) have a high risk for Alzheimer's disease (AD). Identifying resiliency factors for AD is of critical importance to the DS community.
Method
Participants were 63 adults with DS. Measures included amyloid-beta PET scans (amyloid age), National Task Group-Early Detection Screen for Dementia (NTG-EDSD), and Down Syndrome Mental Status Examination (DSMSE). Lifestyle composites were created by assessing time spent in leisure, employment, and physical activity across 7 days through informant reports and accelerometry.
Results
There was a significant moderation effect of the lifestyle composite on the association between amyloid age and the NTG-EDSD and DSMSE. Participants with a higher lifestyle composite (higher leisure, employment engagement, and physical activity) had fewer dementia symptoms than those with a lower lifestyle composite score of a similar amyloid age.
Conclusions
Modifiable lifestyle factors may allow adults with DS to maintain cognitive functioning for longer in the face of AD pathology.
{"title":"Lifestyle Composite and Resilience to Alzheimer's Disease Pathology in Down Syndrome","authors":"Emily K. Schworer, Matthew D. Zammit, Benjamin L. Handen, Brianna Piro-Gambetti, Melissa R. Jenkins, Courtney Brothers, Ozioma C. Okonkwo, Christy L. Hom, Beau M. Ances, Bradley T. Christian, Sigan L. Hartley","doi":"10.1111/jar.70109","DOIUrl":"https://doi.org/10.1111/jar.70109","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with Down syndrome (DS) have a high risk for Alzheimer's disease (AD). Identifying resiliency factors for AD is of critical importance to the DS community.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Participants were 63 adults with DS. Measures included amyloid-beta PET scans (amyloid age), National Task Group-Early Detection Screen for Dementia (NTG-EDSD), and Down Syndrome Mental Status Examination (DSMSE). Lifestyle composites were created by assessing time spent in leisure, employment, and physical activity across 7 days through informant reports and accelerometry.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>There was a significant moderation effect of the lifestyle composite on the association between amyloid age and the NTG-EDSD and DSMSE. Participants with a higher lifestyle composite (higher leisure, employment engagement, and physical activity) had fewer dementia symptoms than those with a lower lifestyle composite score of a similar amyloid age.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Modifiable lifestyle factors may allow adults with DS to maintain cognitive functioning for longer in the face of AD pathology.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70109","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144832932","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}
Parents in England with an intellectual disability may be eligible for support with parenting from Local Authority's Adult services under the Care Act (2014).
Method
This study investigated how adult social workers support these parents through 18 interviews with managers and commissioners and focus groups with 52 social workers, analysed using thematic analysis.
Results
Parents with a diagnosed ‘intellectual disability’ accessed ‘gold standard of support’ from intellectual disability teams. Parents with a milder or borderline intellectual disability accessed support from the ‘general’ team if they had two eligible needs under the Care Act. There were inclusive and more restrictive approaches, related to a lack of resources and social worker knowledge and skills, to the recognition of two eligible needs.
Conclusions
Parents with milder intellectual disabilities are rendered invisible to services due to not having a ‘label’ or ‘obvious’ eligibility for support under the Care Act.
{"title":"Unseen and Invisible? Issues of Recognition for Parents With Intellectual Disabilities Accessing Social Work and Social Care Services for Adults in England","authors":"Beth Tarleton, Gillian MacIntyre, Danielle Turney, Rhian Fawcett","doi":"10.1111/jar.70075","DOIUrl":"https://doi.org/10.1111/jar.70075","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Parents in England with an intellectual disability may be eligible for support with parenting from Local Authority's Adult services under the Care Act (2014).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This study investigated how adult social workers support these parents through 18 interviews with managers and commissioners and focus groups with 52 social workers, analysed using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Parents with a diagnosed ‘intellectual disability’ accessed ‘gold standard of support’ from intellectual disability teams. Parents with a milder or borderline intellectual disability accessed support from the ‘general’ team if they had two eligible needs under the Care Act. There were inclusive and more restrictive approaches, related to a lack of resources and social worker knowledge and skills, to the recognition of two eligible needs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Parents with milder intellectual disabilities are rendered invisible to services due to not having a ‘label’ or ‘obvious’ eligibility for support under the Care Act.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70075","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144767514","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}
Eve Müller, Kelly Offutt, Michael Stromberg, Ann Kern, Jessica Oginz
Introduction
Many students with intellectual/developmental disabilities (I/DD) and co-occurring communication challenges have trouble accessing mental health services, especially traditional talk therapies.
Methods
This study is based on interviews with 19 school mental health providers (MHPs), speech-language therapists (SLPs), and administrators working in a school that recently added MHP/SLP co-therapy as a service delivery option.
Results
Following COVID, MHPs reported an increased need for mental health support, specifically language support to help students access mental health concepts. Interviewees found MHP/SLP co-therapy to be a highly beneficial model resulting in both direct benefits (i.e., student progress, generalisation of skills, and access to the expertise of two disciplines at once) and indirect benefits (i.e., greater confidence and competence of MHPs providing mental health supports to their I/DD students).
Conclusion
MHP/SLP co-therapy may offer a promising means of helping individuals with I/DD and co-occurring communication challenges access appropriate mental health therapies in schools.
{"title":"Provider Perspectives on Using School-Based Mental Health/Speech Co-Therapy to Meet the Mental Health Needs of Students With Intellectual/Developmental Disabilities","authors":"Eve Müller, Kelly Offutt, Michael Stromberg, Ann Kern, Jessica Oginz","doi":"10.1111/jar.70104","DOIUrl":"https://doi.org/10.1111/jar.70104","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Many students with intellectual/developmental disabilities (I/DD) and co-occurring communication challenges have trouble accessing mental health services, especially traditional talk therapies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study is based on interviews with 19 school mental health providers (MHPs), speech-language therapists (SLPs), and administrators working in a school that recently added MHP/SLP co-therapy as a service delivery option.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Following COVID, MHPs reported an increased need for mental health support, specifically language support to help students access mental health concepts. Interviewees found MHP/SLP co-therapy to be a highly beneficial model resulting in both direct benefits (i.e., student progress, generalisation of skills, and access to the expertise of two disciplines at once) and indirect benefits (i.e., greater confidence and competence of MHPs providing mental health supports to their I/DD students).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>MHP/SLP co-therapy may offer a promising means of helping individuals with I/DD and co-occurring communication challenges access appropriate mental health therapies in schools.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144758539","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}
Sophie C. Westrop, Ailsa Niven, Craig Melville, Donna-Marie Speir, Arlene M. McGarty
Background
This study aimed to apply the COM-B model to understand the capabilities, opportunities, and motivations for walking behaviour among adults with intellectual disabilities.
Methods
A qualitative study was conducted with adults (≥ 18 years) with mild to moderate intellectual disabilities living in Greater Glasgow using one-to-one interviews (n = 12; women = 5) and a photo-elicitation activity followed by a focus group discussion (n = 5; women = 1). The framework approach to analysis allowed for the influences of walking to be mapped onto the COM-B model.
Results
Walking is a complex behaviour with many capabilities, opportunities and motivations to consider. Adults with intellectual disabilities were involved in making decisions about what results should be prioritised.
Conclusions
The COM-B model is a flexible framework that can be applied to understand health behaviours of adults with intellectual disabilities. It is imperative to work with adults with intellectual disabilities throughout the research process.
{"title":"Understanding Capabilities, Opportunities, and Motivations of Walking for Physical Activity Among Adults With Intellectual Disabilities: A Qualitative Theory-Based Study","authors":"Sophie C. Westrop, Ailsa Niven, Craig Melville, Donna-Marie Speir, Arlene M. McGarty","doi":"10.1111/jar.70105","DOIUrl":"https://doi.org/10.1111/jar.70105","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study aimed to apply the COM-B model to understand the <b>c</b>apabilities, <b>o</b>pportunities, and <b>m</b>otivations for walking <b>b</b>ehaviour among adults with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative study was conducted with adults (≥ 18 years) with mild to moderate intellectual disabilities living in Greater Glasgow using one-to-one interviews (<i>n</i> = 12; women = 5) and a photo-elicitation activity followed by a focus group discussion (<i>n</i> = 5; women = 1). The framework approach to analysis allowed for the influences of walking to be mapped onto the COM-B model.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Walking is a complex behaviour with many capabilities, opportunities and motivations to consider. Adults with intellectual disabilities were involved in making decisions about what results should be prioritised.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The COM-B model is a flexible framework that can be applied to understand health behaviours of adults with intellectual disabilities. It is imperative to work with adults with intellectual disabilities throughout the research process.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70105","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144725405","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}
Iva Obrusnikova, Ashley M. Steinbrecher, Albert R. Cavalier, Richard R. Suminski, Cora J. Firkin
Background
Adults with intellectual disability do not meet recommended physical activity (PA) levels, contributing to sedentary lifestyles and health disparities. Community fitness facilities (CFFs) present valuable opportunities for engagement but are often underutilised.
Method
This mixed-methods study, grounded in Social Cognitive Theory, combined semi-structured interviews and quantitative functional assessments to examine the perceived benefits, costs, barriers, and facilitators of aerobic exercise amongst 20 adults with intellectual disability, aged 19–43. Associations between perceptions, PA, and exercise performance were examined.
Results
Participants perceived substantial health benefits from aerobic exercise. However, physical discomfort and environmental constraints were commonly cited and were associated with lower PA levels and performance. Some perceived facilitators were unexpectedly correlated with increased sedentariness and lower functional performance, possibly due to programme design misalignments.
Conclusions
To enhance participation and health outcomes, CFF programmes must be tailored to address individual psychological needs and physical capabilities, whilst also improving accessibility and support.
{"title":"Perceptions of Barriers, Facilitators, and Outcomes of Aerobic Exercise in Community Fitness Facilities by Adults With Intellectual Disability","authors":"Iva Obrusnikova, Ashley M. Steinbrecher, Albert R. Cavalier, Richard R. Suminski, Cora J. Firkin","doi":"10.1111/jar.70108","DOIUrl":"https://doi.org/10.1111/jar.70108","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with intellectual disability do not meet recommended physical activity (PA) levels, contributing to sedentary lifestyles and health disparities. Community fitness facilities (CFFs) present valuable opportunities for engagement but are often underutilised.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This mixed-methods study, grounded in Social Cognitive Theory, combined semi-structured interviews and quantitative functional assessments to examine the perceived benefits, costs, barriers, and facilitators of aerobic exercise amongst 20 adults with intellectual disability, aged 19–43. Associations between perceptions, PA, and exercise performance were examined.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Participants perceived substantial health benefits from aerobic exercise. However, physical discomfort and environmental constraints were commonly cited and were associated with lower PA levels and performance. Some perceived facilitators were unexpectedly correlated with increased sedentariness and lower functional performance, possibly due to programme design misalignments.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>To enhance participation and health outcomes, CFF programmes must be tailored to address individual psychological needs and physical capabilities, whilst also improving accessibility and support.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144725741","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}
Jackie Ryan, Heather M. Brown, Anne Borden, Christina Devlin, Adam Kedmy, Austin Lee, David B. Nicholas, Sandy Thompson-Hodgetts
Background
Autonomy is a crucial component of self-determination, yet it is limited for Autistic individuals, especially those with co-occurring intellectual disabilities. We explored how professionals supported Autistic people with intellectual disabilities' autonomy.
Materials and Methods
This qualitative study used a community-based participatory approach. Nine staff who worked within a post-secondary transition programme to support Autistic young adults with intellectual disabilities were interviewed. Data were analysed using reflexive thematic analysis.
Results
The quality and depth of relationships between staff and Autistic adults with intellectual disabilities, and a safe, supportive environment, were critical to supporting autonomy. Staff also identified several skill areas that would benefit program participants to exert their autonomy, including self-advocacy, interoceptive awareness, working with others, and understanding choices.
Conclusions
This crucial information for supporting autonomy for Autistic adults with intellectual disabilities provides a basis for enacting programme change to promote self-determination. Recommendations for staff and programme development are provided.
{"title":"‘It's Really Who They Are and What They Want’: Staff Perspectives on Supporting Autonomy for Autistic Adults With Intellectual Disabilities","authors":"Jackie Ryan, Heather M. Brown, Anne Borden, Christina Devlin, Adam Kedmy, Austin Lee, David B. Nicholas, Sandy Thompson-Hodgetts","doi":"10.1111/jar.70106","DOIUrl":"https://doi.org/10.1111/jar.70106","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Autonomy is a crucial component of self-determination, yet it is limited for Autistic individuals, especially those with co-occurring intellectual disabilities. We explored how professionals supported Autistic people with intellectual disabilities' autonomy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Materials and Methods</h3>\u0000 \u0000 <p>This qualitative study used a community-based participatory approach. Nine staff who worked within a post-secondary transition programme to support Autistic young adults with intellectual disabilities were interviewed. Data were analysed using reflexive thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The quality and depth of relationships between staff and Autistic adults with intellectual disabilities, and a safe, supportive environment, were critical to supporting autonomy. Staff also identified several skill areas that would benefit program participants to exert their autonomy, including self-advocacy, interoceptive awareness, working with others, and understanding choices.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This crucial information for supporting autonomy for Autistic adults with intellectual disabilities provides a basis for enacting programme change to promote self-determination. Recommendations for staff and programme development are provided.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70106","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144725740","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}
Chelsea Marlborough, Katja Lemermeyer, Daniel J. Coletti, Chris P. Madsen, Caleb Polley, Garrett Sharp, Adam E. Block
Background
Children with neurodisabilities, including those with intellectual and developmental disabilities (IDD), autism and other complex needs, frequently experience sleep disturbances, impacting their health, behaviour and caregiver well-being. This study evaluates the effectiveness of Cubby Beds, sensory safety beds designed to improve sleep quality and safety for children with neurodisabilities.
Methods
A survey of 225 caregivers assessed changes before and after Cubby Bed adoption using multiple-choice and Likert-scale questions. A Wilcoxon signed-rank test was used to analyse key outcomes.
Results
Caregivers reported significant improvements in sleep duration (median increase from 4–6 to 8–10 h per night, p < 0.001) and reductions in self-injurious behaviours, minor injuries and elopement incidents (p < 0.001). Effects on medical procedures, seizures and life-threatening events were mixed.
Conclusions
Findings suggest Cubby Beds enhance sleep and safety for children with neurodisability. Further research is needed to assess long-term impacts and integration into healthcare strategies.
{"title":"Brief Report: Caregiver-Reported Effects of Sensory Safety Beds on Paediatric Sleep Quality","authors":"Chelsea Marlborough, Katja Lemermeyer, Daniel J. Coletti, Chris P. Madsen, Caleb Polley, Garrett Sharp, Adam E. Block","doi":"10.1111/jar.70096","DOIUrl":"https://doi.org/10.1111/jar.70096","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with neurodisabilities, including those with intellectual and developmental disabilities (IDD), autism and other complex needs, frequently experience sleep disturbances, impacting their health, behaviour and caregiver well-being. This study evaluates the effectiveness of Cubby Beds, sensory safety beds designed to improve sleep quality and safety for children with neurodisabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A survey of 225 caregivers assessed changes before and after Cubby Bed adoption using multiple-choice and Likert-scale questions. A Wilcoxon signed-rank test was used to analyse key outcomes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Caregivers reported significant improvements in sleep duration (median increase from 4–6 to 8–10 h per night, <i>p</i> < 0.001) and reductions in self-injurious behaviours, minor injuries and elopement incidents (<i>p</i> < 0.001). Effects on medical procedures, seizures and life-threatening events were mixed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Findings suggest Cubby Beds enhance sleep and safety for children with neurodisability. Further research is needed to assess long-term impacts and integration into healthcare strategies.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70096","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144714834","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}
Jennifer Christianson-Barker, Arielle Lomness, Nour Youssef, Dina Yaghi, Florence Ng, Laura Hockman, Rachel Mills, Rachelle Hole
Background
Canadians with intellectual disabilities experience barriers in accessing federal government services and programmes. Evolving from established models of patient navigation, service navigation has emerged as a potential way to address systematic barriers.
Methods
A scoping review was conducted with a search strategy implemented across six databases, including APA PsycInfo, Medline, CINAHL, Embase, Scopus, and ProQuest Sociology Collection.
Results
One hundred and twelve studies were identified as relevant to the research question. Despite variance in terminology, definition, and practice, included studies affirm the need for navigational support and highlight the potential impact of support.
Conclusions
The included literature identifies navigation support as a promising practice to remove barriers and advance access to programs and services for people with intellectual disabilities. Additional study is needed to specify the impact related to accessing federal programs and services in a Canadian context.
{"title":"Scoping Review on the Use of Navigation Services to Improve Accessibility of Programming for People With Intellectual Disabilities","authors":"Jennifer Christianson-Barker, Arielle Lomness, Nour Youssef, Dina Yaghi, Florence Ng, Laura Hockman, Rachel Mills, Rachelle Hole","doi":"10.1111/jar.70101","DOIUrl":"https://doi.org/10.1111/jar.70101","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Canadians with intellectual disabilities experience barriers in accessing federal government services and programmes. Evolving from established models of patient navigation, service navigation has emerged as a potential way to address systematic barriers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A scoping review was conducted with a search strategy implemented across six databases, including APA PsycInfo, Medline, CINAHL, Embase, Scopus, and ProQuest Sociology Collection.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>One hundred and twelve studies were identified as relevant to the research question. Despite variance in terminology, definition, and practice, included studies affirm the need for navigational support and highlight the potential impact of support.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The included literature identifies navigation support as a promising practice to remove barriers and advance access to programs and services for people with intellectual disabilities. Additional study is needed to specify the impact related to accessing federal programs and services in a Canadian context.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70101","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144705313","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}
Shin Ying Chu, Jaehoon Lee, Dini Sofea Binti Zamsyari, Chun Hong Gan, Pui Juan Woi, Agnes Shu Sze Chong, Maria Garraffa, Ling-Yi Lin
Background
To examine the relationship between affiliate stigma, stress and perceived quality of life amongst parents of children with Down syndrome (DS).
Method
Seventy-eight parents of children with DS completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI) and Care-related Quality of Life (CarerQol) scales.
Results
Pearson correlations revealed that parents did not feel stigmatised for having a child with DS (M = 30.51, SD = 10.47) and reported a low caregiver burden (CBI Total M = 19.73, SD = 12.72). The relatively lower caregiving burden, challenges and future barriers in the DS group explained its lesser stigma, higher quality of life and greater happiness compared to the ASD and CP groups.
Conclusion
Healthcare professionals who provide rehabilitation services to children with DS need to be more aware of the needs of families and caregivers and educated about how to best support them.
背景：研究唐氏综合症（DS）患儿父母的附属污名、压力和感知生活质量之间的关系。方法78例退行性痴呆患儿家长分别完成附属病耻感量表（ASS）、照顾者负担量表（CBI）和护理相关生活质量量表（CarerQol）。结果Pearson相关性显示，父母没有因为孩子患有退行性痴呆而感到耻辱（M = 30.51, SD = 10.47），并且报告了较低的照顾负担（CBI Total M = 19.73, SD = 12.72）。与ASD和CP组相比，DS组相对较低的照顾负担、挑战和未来障碍解释了其较少的耻辱、更高的生活质量和更大的幸福感。结论为退行性残疾儿童提供康复服务的医护人员需要更多地了解家庭和照顾者的需求，并了解如何最好地支持他们。
{"title":"Relationship Between Affiliate Stigma, Stress and Perceived Quality of Life Among Parents of Children With Down Syndrome","authors":"Shin Ying Chu, Jaehoon Lee, Dini Sofea Binti Zamsyari, Chun Hong Gan, Pui Juan Woi, Agnes Shu Sze Chong, Maria Garraffa, Ling-Yi Lin","doi":"10.1111/jar.70099","DOIUrl":"https://doi.org/10.1111/jar.70099","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>To examine the relationship between affiliate stigma, stress and perceived quality of life amongst parents of children with Down syndrome (DS).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Seventy-eight parents of children with DS completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI) and Care-related Quality of Life (CarerQol) scales.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Pearson correlations revealed that parents did not feel stigmatised for having a child with DS (<i>M</i> = 30.51, SD = 10.47) and reported a low caregiver burden (CBI Total <i>M</i> = 19.73, SD = 12.72). The relatively lower caregiving burden, challenges and future barriers in the DS group explained its lesser stigma, higher quality of life and greater happiness compared to the ASD and CP groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Healthcare professionals who provide rehabilitation services to children with DS need to be more aware of the needs of families and caregivers and educated about how to best support them.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144705682","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}
Mary Witt, Anna J. Esbensen, Ayesha Harisinghani, Nicolas M. Oreskovic, Michelle Palumbo, Stephanie L. Santoro
Introduction
The Anxiety, Depression and Mood Scale (ADAMS), a mental health screening tool developed for individuals with intellectual disabilities, has yet to be evaluated in adults with Down syndrome. We included the ADAMS in a Dementia Protocol.
Method
We reviewed the charts of 71 adults with Down syndrome seen in a specialty clinic and collected ADAMS data from our quality improvement project. We evaluated the sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV) of the ADAMS at five cutoff points to identify optimal screening thresholds for adults with Down syndrome.
Results
Cutoff points set at two points below the 75th percentile scores of the original ADAMS publication presented optimal sensitivity of 81.82%, specificity of 82.93%, PPV of 72.00% and NPV of 89.47%.
Conclusion
For adults with Down syndrome, we suggest alternate thresholds, generally two points below the original ADAMS thresholds, to adequately capture mental health concerns.
{"title":"The Use of the Anxiety, Depression and Mood Scale (ADAMS) as a Screening Instrument for Depression and Mental Health Diagnoses in a Down Syndrome Specialty Clinic","authors":"Mary Witt, Anna J. Esbensen, Ayesha Harisinghani, Nicolas M. Oreskovic, Michelle Palumbo, Stephanie L. Santoro","doi":"10.1111/jar.70097","DOIUrl":"https://doi.org/10.1111/jar.70097","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>The Anxiety, Depression and Mood Scale (ADAMS), a mental health screening tool developed for individuals with intellectual disabilities, has yet to be evaluated in adults with Down syndrome. We included the ADAMS in a Dementia Protocol.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>We reviewed the charts of 71 adults with Down syndrome seen in a specialty clinic and collected ADAMS data from our quality improvement project. We evaluated the sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV) of the ADAMS at five cutoff points to identify optimal screening thresholds for adults with Down syndrome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Cutoff points set at two points below the 75th percentile scores of the original ADAMS publication presented optimal sensitivity of 81.82%, specificity of 82.93%, PPV of 72.00% and NPV of 89.47%.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>For adults with Down syndrome, we suggest alternate thresholds, generally two points below the original ADAMS thresholds, to adequately capture mental health concerns.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 4","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144687864","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}
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