Jessica Keeley, Zhenmei Yeap, Rachel Skoss, Thomas Nevill, Susan Hunt, Jacinta Saldaris, Jenny Downs
Background
People with intellectual disability experience higher rates of physical and mental health problems than those without intellectual disability. Health literacy includes accessing, understanding, appraising and applying health information. Improving health literacy is associated with better health outcomes. The internet is a primary source of health information for many people. This study aimed to evaluate available online health resources for people with intellectual disability and their families to understand information gaps.
Method
A scoping review of grey literature was conducted using two searches: a targeted search of disability organisation websites and an advanced Google search using key terms. The methods were guided by a modified version of Arksey and O'Malley's methodological approach.
Results
A total of 1165 health resources for people with intellectual disability and their families were identified. Tests, checks and procedures were the most common category of health addressed (n = 227, 19.5%) and most content was directed at the individual with intellectual disability (n = 837, 71.9%). Resources addressed the health literacy domains of accessing (n = 1165, 100%) and understanding (n = 1132, 97.2%) information more often than appraising (n = 575, 49.5%) and applying (n = 415, 35.6%).
Conclusions
Improving the health literacy of people with intellectual disability is an important part of addressing health disparities and requires understanding of the available information. Some information gaps were identified, including limited sexual health resources and mental health resources for adolescents.
{"title":"Online Health Literacy Resources for People With Intellectual Disability: A Grey Literature Scoping Review","authors":"Jessica Keeley, Zhenmei Yeap, Rachel Skoss, Thomas Nevill, Susan Hunt, Jacinta Saldaris, Jenny Downs","doi":"10.1111/jir.70028","DOIUrl":"10.1111/jir.70028","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disability experience higher rates of physical and mental health problems than those without intellectual disability. Health literacy includes accessing, understanding, appraising and applying health information. Improving health literacy is associated with better health outcomes. The internet is a primary source of health information for many people. This study aimed to evaluate available online health resources for people with intellectual disability and their families to understand information gaps.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A scoping review of grey literature was conducted using two searches: a targeted search of disability organisation websites and an advanced Google search using key terms. The methods were guided by a modified version of Arksey and O'Malley's methodological approach.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A total of 1165 health resources for people with intellectual disability and their families were identified. Tests, checks and procedures were the most common category of health addressed (<i>n</i> = 227, 19.5%) and most content was directed at the individual with intellectual disability (<i>n</i> = 837, 71.9%). Resources addressed the health literacy domains of accessing (<i>n</i> = 1165, 100%) and understanding (<i>n</i> = 1132, 97.2%) information more often than appraising (<i>n</i> = 575, 49.5%) and applying (<i>n</i> = 415, 35.6%).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Improving the health literacy of people with intellectual disability is an important part of addressing health disparities and requires understanding of the available information. Some information gaps were identified, including limited sexual health resources and mental health resources for adolescents.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 2","pages":"121-129"},"PeriodicalIF":2.0,"publicationDate":"2025-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70028","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144768668","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}
Paula Resina, Marcela Mezzatesta, Neus Elias, Melina Aparici, Maria A. Mairena
Background
Children with complex communication needs (CCN), particularly those with autism spectrum disorder (ASD), experience significant communication challenges. This scoping review analyses the existing literature on clinical interventions designed to enhance communication in these children. The aim was to describe which intervention models are being evaluated in studies, which treatments have shown positive effects and what the clinical profile of children and adolescents who benefit from these interventions is.
Method
The scoping review was conducted following the methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR).
Results
The search strategy identified 797 records; eight records met all eligibility criteria and were included for review. The review found that multimodal interventions combining augmentative and alternative communication (AAC), naturalistic strategies and parent training were the most effective in improving both expressive and receptive communication.
Conclusions
Despite the limited existing research, studies suggest that multimodal interventions can effectively enhance communication in children with CCN. This review highlights significant gaps in the literature, including the scarcity of studies with appropriate methodological rigour and the lack of standardised protocols for CCN interventions. There is a critical need for evidence-based guidelines, professional training and policy development to ensure equitable access to effective interventions.
{"title":"Identifying and Describing Best Clinical Practices for Children and Adolescents With Complex Communication Needs: A Scoping Review of Healthcare-Based Interventions","authors":"Paula Resina, Marcela Mezzatesta, Neus Elias, Melina Aparici, Maria A. Mairena","doi":"10.1111/jir.70022","DOIUrl":"10.1111/jir.70022","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with complex communication needs (CCN), particularly those with autism spectrum disorder (ASD), experience significant communication challenges. This scoping review analyses the existing literature on clinical interventions designed to enhance communication in these children. The aim was to describe which intervention models are being evaluated in studies, which treatments have shown positive effects and what the clinical profile of children and adolescents who benefit from these interventions is.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The scoping review was conducted following the methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The search strategy identified 797 records; eight records met all eligibility criteria and were included for review. The review found that multimodal interventions combining augmentative and alternative communication (AAC), naturalistic strategies and parent training were the most effective in improving both expressive and receptive communication.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Despite the limited existing research, studies suggest that multimodal interventions can effectively enhance communication in children with CCN. This review highlights significant gaps in the literature, including the scarcity of studies with appropriate methodological rigour and the lack of standardised protocols for CCN interventions. There is a critical need for evidence-based guidelines, professional training and policy development to ensure equitable access to effective interventions.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 10","pages":"1081-1096"},"PeriodicalIF":2.0,"publicationDate":"2025-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70022","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144760323","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}
Marina Antoniadou, Vaso Totsika, Emma Langley, Richard P. Hastings, Caitlin A. Williams
Background
Positive mental health is experienced by parents of children with intellectual disability and has been shown to be associated with child mental health outcomes in these families. There is a dearth of evidence on mother–father differences in levels of positive mental health, despite evidence of differences in levels of mental health problems. This study aimed to compare levels of positive mental health, namely life satisfaction and mental well-being, between mothers and fathers of children with an intellectual disability.
Method
Participants were 85 mother–father dyads participating in the 1000 Families Study, a UK-based cohort study of families of children with intellectual disability. Approximately 92% of the dyads were a couple, while the rest reported they were divorced, separated or not living with the child's other parent. Over 90% of participants were the child's biological parent. The mean age of mothers and fathers was 45 years old and 50.5 years old, respectively. Children were on average 14.8 years old (ages ranged from 9 to 20 years old) and over 70% were boys.
Results
Multilevel models initially showed no differences between mothers' and fathers' mental well-being and life satisfaction. After controlling for other factors potentially related to positive mental health, findings indicated that life satisfaction was reported at higher levels by mothers compared with fathers of children with intellectual disability.
Conclusions
Subject to replication in future studies, initial evidence of gender differences in life satisfaction highlights that fathers of children with an intellectual disability may be particularly vulnerable to lower levels of positive mental health. Fathers may require additional support for achieving positive mental health.
{"title":"Comparing Levels of Positive Mental Well-Being and Life Satisfaction Between Mothers and Fathers of Children With an Intellectual Disability","authors":"Marina Antoniadou, Vaso Totsika, Emma Langley, Richard P. Hastings, Caitlin A. Williams","doi":"10.1111/jir.70021","DOIUrl":"10.1111/jir.70021","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Positive mental health is experienced by parents of children with intellectual disability and has been shown to be associated with child mental health outcomes in these families. There is a dearth of evidence on mother–father differences in levels of positive mental health, despite evidence of differences in levels of mental health problems. This study aimed to compare levels of positive mental health, namely life satisfaction and mental well-being, between mothers and fathers of children with an intellectual disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Participants were 85 mother–father dyads participating in the 1000 Families Study, a UK-based cohort study of families of children with intellectual disability. Approximately 92% of the dyads were a couple, while the rest reported they were divorced, separated or not living with the child's other parent. Over 90% of participants were the child's biological parent. The mean age of mothers and fathers was 45 years old and 50.5 years old, respectively. Children were on average 14.8 years old (ages ranged from 9 to 20 years old) and over 70% were boys.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Multilevel models initially showed no differences between mothers' and fathers' mental well-being and life satisfaction. After controlling for other factors potentially related to positive mental health, findings indicated that life satisfaction was reported at higher levels by mothers compared with fathers of children with intellectual disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Subject to replication in future studies, initial evidence of gender differences in life satisfaction highlights that fathers of children with an intellectual disability may be particularly vulnerable to lower levels of positive mental health. Fathers may require additional support for achieving positive mental health.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 10","pages":"1172-1180"},"PeriodicalIF":2.0,"publicationDate":"2025-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70021","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144717957","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}
Lamya Al Shuhaimi, Ian D. Maidment, Martin C. Henman, Phyo K. Myint, Juliette O'Connell, Caitríona Ryan, Philip McCallion, Mary McCarron, Maire O'Dwyer
Background
People with intellectual disability are frequently exposed to medication with anticholinergic activity. In the general population, the long-term exposure to anticholinergics has been associated with declines in both physical and cognitive function. This study aimed to examine anticholinergic exposure longitudinally in a cohort of older adults with intellectual disability (aged 40 years or over).
Method
The study examined individuals with intellectual disability aged 40 and over, who participated at two time points (Waves 1 and 4), 10 years apart, in the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). The Anticholinergic Cognitive Burden (ACB) scale was used to quantify anticholinergic exposure. Logistic regression analysis was employed to examine the adverse outcomes reported at time point 2 in relation to ACB scores at time point 1. Models were adjusted for age, gender, level of intellectual disability, residence, epilepsy and polypharmacy.
Results
The study included 487 participants who provided medication data at both time points. Anticholinergic exposure remained consistent over the studied period, with approximately 30% having no exposure, 40% having mild exposure (ACB = 1–4) and 30% having high exposure (ACB = 5+). Antipsychotic medications contributed the most to the total score at both time points (Wave 1 = 35%, Wave 4 = 37%), with other anticholinergics, antiepileptics and antidepressant medications contributing 10%–16% each. Mild and high ACB scores at time point 1 were significantly associated with a higher risk of falls (odds ratio [OR] = 1.86, 95% CI: 1.03–3.38) and mental health conditions (ACB 1–4; OR = 6.60, 95% CI: 3.69–11.77; ACB 5+, OR = 17.38, 95% CI: 8.97–33.61) and lower OR for reporting dementia/Alzheimer's disease (ACB 1–4; OR = 0.39, 95% CI: 0.15–0.97; ACB 5+; OR = 0.21, 95% CI: 0.07–0.64).
Conclusion
Older adults with intellectual disability are exposed to high anticholinergic burden at the two time points, 10 years apart. Being exposed to anticholinergics at Wave 1 is significantly associated with a higher risk of falls and reporting mental health conditions at Wave 4. A review of antipsychotic prescribing practice is urgently needed to reduce the anticholinergic exposure and its adverse outcomes among older adults with intellectual disability.
{"title":"Ten-Year Outcomes of Anticholinergic Use Among Older Adults With Intellectual Disability: Findings From the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA)","authors":"Lamya Al Shuhaimi, Ian D. Maidment, Martin C. Henman, Phyo K. Myint, Juliette O'Connell, Caitríona Ryan, Philip McCallion, Mary McCarron, Maire O'Dwyer","doi":"10.1111/jir.70018","DOIUrl":"10.1111/jir.70018","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disability are frequently exposed to medication with anticholinergic activity. In the general population, the long-term exposure to anticholinergics has been associated with declines in both physical and cognitive function. This study aimed to examine anticholinergic exposure longitudinally in a cohort of older adults with intellectual disability (aged 40 years or over).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The study examined individuals with intellectual disability aged 40 and over, who participated at two time points (Waves 1 and 4), 10 years apart, in the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). The Anticholinergic Cognitive Burden (ACB) scale was used to quantify anticholinergic exposure. Logistic regression analysis was employed to examine the adverse outcomes reported at time point 2 in relation to ACB scores at time point 1. Models were adjusted for age, gender, level of intellectual disability, residence, epilepsy and polypharmacy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The study included 487 participants who provided medication data at both time points. Anticholinergic exposure remained consistent over the studied period, with approximately 30% having no exposure, 40% having mild exposure (ACB = 1–4) and 30% having high exposure (ACB = 5+). Antipsychotic medications contributed the most to the total score at both time points (Wave 1 = 35%, Wave 4 = 37%), with other anticholinergics, antiepileptics and antidepressant medications contributing 10%–16% each. Mild and high ACB scores at time point 1 were significantly associated with a higher risk of falls (odds ratio [OR] = 1.86, 95% CI: 1.03–3.38) and mental health conditions (ACB 1–4; OR = 6.60, 95% CI: 3.69–11.77; ACB 5+, OR = 17.38, 95% CI: 8.97–33.61) and lower OR for reporting dementia/Alzheimer's disease (ACB 1–4; OR = 0.39, 95% CI: 0.15–0.97; ACB 5+; OR = 0.21, 95% CI: 0.07–0.64).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Older adults with intellectual disability are exposed to high anticholinergic burden at the two time points, 10 years apart. Being exposed to anticholinergics at Wave 1 is significantly associated with a higher risk of falls and reporting mental health conditions at Wave 4. A review of antipsychotic prescribing practice is urgently needed to reduce the anticholinergic exposure and its adverse outcomes among older adults with intellectual disability.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1284-1294"},"PeriodicalIF":2.0,"publicationDate":"2025-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70018","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144717958","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}
Katrina Byrne, Dominika Lisiecka, Gary Moran, Blánaid Daly, Isabel Fleischmann, Philip McCallion, Mary McCarron, Caoimhin Mac Giolla Phadraig
Introduction
Pneumonia is a leading cause of death for people with intellectual and developmental disabilities (IDD), who also have increased risk of oral disease. Given the known relationship between oral disease and pneumonia in similar populations, this review aims to explore what is known about the association between oral health and pneumonia among people with IDD.
Methods
This systematic scoping review was carried out in accordance with the Joanna Briggs Institute methods and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist (PRISMA-ScR). A systematic search of Medline (Ovid), Embase, Cochrane Trials, Cochrane Review, CINAHL and PubMed was conducted, guided by a registered protocol. The PCC framework informed the search and inclusion criteria. Titles and abstracts were independently screened by two reviewers, with full texts assessed for relevance to oral health and pneumonia in adults with IDD.
Results
Following a protocol and defined criteria, (2544) articles were abstract screened; a further (31) reached full-text review, with (7) included in this review. Study designs included cross-sectional studies (2), retrospective cohorts (2), prospective cohorts (2) and one RCT pilot (1). Six studies reported oral carriage of respiratory pathogens such as Streptococcus pneumoniae, Pseudomonas aeruginosa and Klebsiella pneumoniae. Two studies reported predictive relationships between oral pathogens and pneumonia, with increased odds of respiratory illness associated with positive PCR results for specific pathogens (OR 9.0, 95% confidence interval [CI] 2.3–38.8). Two studies identified poor oral health as a predictor of pneumonia, using validated tools such as the ROAG (OR 1.6, 95% CI 1.1–2.5). Mediating factors included enteral feeding, level of IDD, and history of oral disease.
Conclusions
Research consistently finds carriage of potential respiratory pathogens in the oral microbiome of people with IDD. Despite this, there is a significant lack of research into the relationship between the oral microbiome, poor oral health, and pneumonia in this population, though the latter two are both prevalent and consequential. There is an urgent need for further research exploring the role that oral health and the oral microbiome play in pneumonia among people with IDD.
{"title":"Oral Health and Pneumonia in Adults With Intellectual and Developmental Disabilities: A Scoping Review","authors":"Katrina Byrne, Dominika Lisiecka, Gary Moran, Blánaid Daly, Isabel Fleischmann, Philip McCallion, Mary McCarron, Caoimhin Mac Giolla Phadraig","doi":"10.1111/jir.70013","DOIUrl":"10.1111/jir.70013","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Pneumonia is a leading cause of death for people with intellectual and developmental disabilities (IDD), who also have increased risk of oral disease. Given the known relationship between oral disease and pneumonia in similar populations, this review aims to explore what is known about the association between oral health and pneumonia among people with IDD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This systematic scoping review was carried out in accordance with the Joanna Briggs Institute methods and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist (PRISMA-ScR). A systematic search of Medline (Ovid), Embase, Cochrane Trials, Cochrane Review, CINAHL and PubMed was conducted, guided by a registered protocol. The PCC framework informed the search and inclusion criteria. Titles and abstracts were independently screened by two reviewers, with full texts assessed for relevance to oral health and pneumonia in adults with IDD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Following a protocol and defined criteria, (2544) articles were abstract screened; a further (31) reached full-text review, with (7) included in this review. Study designs included cross-sectional studies (2), retrospective cohorts (2), prospective cohorts (2) and one RCT pilot (1). Six studies reported oral carriage of respiratory pathogens such as <i>Streptococcus pneumoniae</i>, <i>Pseudomonas aeruginosa</i> and <i>Klebsiella pneumoniae</i>. Two studies reported predictive relationships between oral pathogens and pneumonia, with increased odds of respiratory illness associated with positive PCR results for specific pathogens (OR 9.0, 95% confidence interval [CI] 2.3–38.8). Two studies identified poor oral health as a predictor of pneumonia, using validated tools such as the ROAG (OR 1.6, 95% CI 1.1–2.5). Mediating factors included enteral feeding, level of IDD, and history of oral disease.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Research consistently finds carriage of potential respiratory pathogens in the oral microbiome of people with IDD. Despite this, there is a significant lack of research into the relationship between the oral microbiome, poor oral health, and pneumonia in this population, though the latter two are both prevalent and consequential. There is an urgent need for further research exploring the role that oral health and the oral microbiome play in pneumonia among people with IDD.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 1","pages":"16-28"},"PeriodicalIF":2.0,"publicationDate":"2025-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70013","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144637228","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}
Lina R. Patel, Meghan O'Neill, Gabriel Anzueto, Darren Olsen, Katherine Pawlowski, Jonathan D. Santoro, Georgios Sideridis, Noemi Spinazzi, Nicole T. Baumer
Background
Autism spectrum disorder (ASD) is common in Down syndrome (DS). There are no standardised screening/assessment tools for evaluating ASD in DS.
Methods
We utilised a novel validated questionnaire, the ND-PROM, to investigate differences in developmental skills and behaviours among children with DS only, ASD only and DS + ASD.
Results
Data analysis using ANOVA tests and post hoc t-tests revealed item-level differences between groups in domains specific to ASD (nonverbal communication, social–emotional understanding, social interaction, independent play, restrictive and repetitive behaviours and interests and sensory processes) and not specific to ASD (expressive language, receptive language, adaptive/toileting, challenging behaviours, mental health and impulse/ADHD).
Conclusion
ASD-specific symptoms best distinguished DS only and DS + ASD groups, while non-ASD symptoms best distinguished ASD only and DS + ASD groups. Items that best differentiate groups are presented.
{"title":"Neurobehavioural Patterns in the Diagnosis of Autism Spectrum Disorder in Down Syndrome","authors":"Lina R. Patel, Meghan O'Neill, Gabriel Anzueto, Darren Olsen, Katherine Pawlowski, Jonathan D. Santoro, Georgios Sideridis, Noemi Spinazzi, Nicole T. Baumer","doi":"10.1111/jir.70015","DOIUrl":"10.1111/jir.70015","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Autism spectrum disorder (ASD) is common in Down syndrome (DS). There are no standardised screening/assessment tools for evaluating ASD in DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We utilised a novel validated questionnaire, the ND-PROM, to investigate differences in developmental skills and behaviours among children with DS only, ASD only and DS + ASD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Data analysis using ANOVA tests and post hoc <i>t</i>-tests revealed item-level differences between groups in domains specific to ASD (nonverbal communication, social–emotional understanding, social interaction, independent play, restrictive and repetitive behaviours and interests and sensory processes) and not specific to ASD (expressive language, receptive language, adaptive/toileting, challenging behaviours, mental health and impulse/ADHD).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>ASD-specific symptoms best distinguished DS only and DS + ASD groups, while non-ASD symptoms best distinguished ASD only and DS + ASD groups. Items that best differentiate groups are presented.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 9","pages":"809-821"},"PeriodicalIF":2.0,"publicationDate":"2025-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70015","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144637227","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}
Amanda Gillooly, Paul Thompson, Jill Bradshaw, Sue Caton, Chris Hatton, Andrew Jahoda, Rosemary Kelly, Roseann Maguire, Edward Oloidi, Laurence Taggart, Stuart Todd, the Coronavirus and People With Learning Disabilities Study Team, Richard P. Hastings
Background
Research concerning the impact of the COVID-19 pandemic on the mental health and well-being of adults with intellectual disabilities has been cross-sectional and small scale. We examined the trajectory of mental health and well-being across the pandemic period across the UK and the factors which predicted different mental health trajectories.
Method
Adults with intellectual disabilities participated in co-designed structured interviews. Four waves of data were collected between December 2020 and late 2022. At Wave 1, 621 adults with intellectual disabilities participated, with 355 at Wave 4. Well-being, pandemic anxiety, depression, anxiety, anger and loneliness outcomes were measured. Latent class mixed modelling was used to identify subgroups and within-group trajectories.
Results
Well-being and pandemic anxiety remained relatively stable across time, but levels of anger, depression, anxiety and loneliness reduced gradually over time. Overall patterns masked trajectory subgroups, with differences in intercept and steepness of decline or increase in mental health problems. Different factors were generally influential for trajectory class membership and overall change across time for outcomes. Leaving the house for exercise or green spaces reported increasing well-being and reduced loneliness. Similarly, those working, volunteering or in education at Wave 1 were found to have increasing well-being and reduced loneliness, sadness and worry, and increasing wellbeing and reducing anger if they were working pre-pandemic.
Conclusions
Social connection and engagement in purposeful activity were vital to maintaining the mental health and well-being of people with intellectual disabilities. Factors that were found to reduce mental well-being during the pandemic should be considered in planning for future major public health challenges and in promoting better mental well-being for people with intellectual disabilities in everyday life.
{"title":"The Mental Health and Well-Being of Adults With Intellectual Disabilities During the COVID-19 Pandemic Across the UK: A Four-Wave Longitudinal Analysis","authors":"Amanda Gillooly, Paul Thompson, Jill Bradshaw, Sue Caton, Chris Hatton, Andrew Jahoda, Rosemary Kelly, Roseann Maguire, Edward Oloidi, Laurence Taggart, Stuart Todd, the Coronavirus and People With Learning Disabilities Study Team, Richard P. Hastings","doi":"10.1111/jir.70006","DOIUrl":"10.1111/jir.70006","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Research concerning the impact of the COVID-19 pandemic on the mental health and well-being of adults with intellectual disabilities has been cross-sectional and small scale. We examined the trajectory of mental health and well-being across the pandemic period across the UK and the factors which predicted different mental health trajectories.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Adults with intellectual disabilities participated in co-designed structured interviews. Four waves of data were collected between December 2020 and late 2022. At Wave 1, 621 adults with intellectual disabilities participated, with 355 at Wave 4. Well-being, pandemic anxiety, depression, anxiety, anger and loneliness outcomes were measured. Latent class mixed modelling was used to identify subgroups and within-group trajectories.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Well-being and pandemic anxiety remained relatively stable across time, but levels of anger, depression, anxiety and loneliness reduced gradually over time. Overall patterns masked trajectory subgroups, with differences in intercept and steepness of decline or increase in mental health problems. Different factors were generally influential for trajectory class membership and overall change across time for outcomes. Leaving the house for exercise or green spaces reported increasing well-being and reduced loneliness. Similarly, those working, volunteering or in education at Wave 1 were found to have increasing well-being and reduced loneliness, sadness and worry, and increasing wellbeing and reducing anger if they were working pre-pandemic.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Social connection and engagement in purposeful activity were vital to maintaining the mental health and well-being of people with intellectual disabilities. Factors that were found to reduce mental well-being during the pandemic should be considered in planning for future major public health challenges and in promoting better mental well-being for people with intellectual disabilities in everyday life.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 10","pages":"1132-1142"},"PeriodicalIF":2.0,"publicationDate":"2025-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70006","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144637229","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}
T. I. M. Hilgenkamp, A. Oppewal, M. N. Bohmer, A. Paul, C. Ryan, E. Burke, M. McCarron, P. McCallion, D. A. M. Maes-Festen, F. O'Brien
Background
Older adults with intellectual disabilities are at a higher cardiovascular risk than their peers in the general population. Investigating central blood pressure and augmentation index is necessary to better understand the risk of cardiovascular disease, to better identify those individuals at risk and to potentially change pharmacological treatment regimens. We therefore aim to investigate central blood pressure and augmentation index in two large cohorts (total N = 237) of older adults with intellectual disabilities, across different age ranges and sexes. Additionally, we will explore the cross-sectional relationships of central blood pressure and augmentation index with other cardiovascular risk factors and the presence of cardiovascular disease across a broad age range.
Method
Collected data of two cohorts of older adults with intellectual disabilities were included: n = 121 individuals with intellectual disabilities of ≥ 60 years from the Healthy Ageing and Intellectual Disabilities (HA-ID) study, and n = 115 individuals with intellectual disabilities ≥ 40 years from The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) study. The Mobil-O-Graph was used to measure central blood pressure and augmentation index. The distribution of haemodynamic measures across different sex and age groups was reported, and bivariate correlations were calculated to explore associations between haemodynamic measures, cardiovascular risk factors and history of CVD.
Results
Mean brachial pressures for the HA-ID cohort (mean age 71 ± 6 years) was 133/81 mmHg. The slightly younger IDS-TILDA cohort (mean age 60 ± 9 years) had a median brachial blood pressure of 127/81. Mean central SBP (cSBP) in the older HA-ID cohort was 122 mmHg versus 120 mmHg in the younger IDS-TILDA cohort, with a central DBP (cDBP) of 82 mmHg in both cohorts, and a central pulse pressure (cPP, cSBP-cDBP) of 40 mmHg for the HA-ID cohort and 38 mmHg for the IDS-TILDA cohort.
Conclusions
Females with intellectual disabilities had higher central blood pressures, augmentation pressure and augmentation index than males, and females showed an age-related increase in central blood pressures.
{"title":"Central Blood Pressure and Augmentation Index in Older Adults With Intellectual Disabilities","authors":"T. I. M. Hilgenkamp, A. Oppewal, M. N. Bohmer, A. Paul, C. Ryan, E. Burke, M. McCarron, P. McCallion, D. A. M. Maes-Festen, F. O'Brien","doi":"10.1111/jir.70002","DOIUrl":"10.1111/jir.70002","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Older adults with intellectual disabilities are at a higher cardiovascular risk than their peers in the general population. Investigating central blood pressure and augmentation index is necessary to better understand the risk of cardiovascular disease, to better identify those individuals at risk and to potentially change pharmacological treatment regimens. We therefore aim to investigate central blood pressure and augmentation index in two large cohorts (total <i>N</i> = 237) of older adults with intellectual disabilities, across different age ranges and sexes. Additionally, we will explore the cross-sectional relationships of central blood pressure and augmentation index with other cardiovascular risk factors and the presence of cardiovascular disease across a broad age range.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Collected data of two cohorts of older adults with intellectual disabilities were included: <i>n</i> = 121 individuals with intellectual disabilities of ≥ 60 years from the Healthy Ageing and Intellectual Disabilities (HA-ID) study, and <i>n</i> = 115 individuals with intellectual disabilities ≥ 40 years from The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) study. The Mobil-O-Graph was used to measure central blood pressure and augmentation index. The distribution of haemodynamic measures across different sex and age groups was reported, and bivariate correlations were calculated to explore associations between haemodynamic measures, cardiovascular risk factors and history of CVD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Mean brachial pressures for the HA-ID cohort (mean age 71 ± 6 years) was 133/81 mmHg. The slightly younger IDS-TILDA cohort (mean age 60 ± 9 years) had a median brachial blood pressure of 127/81. Mean central SBP (cSBP) in the older HA-ID cohort was 122 mmHg versus 120 mmHg in the younger IDS-TILDA cohort, with a central DBP (cDBP) of 82 mmHg in both cohorts, and a central pulse pressure (cPP, cSBP-cDBP) of 40 mmHg for the HA-ID cohort and 38 mmHg for the IDS-TILDA cohort.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Females with intellectual disabilities had higher central blood pressures, augmentation pressure and augmentation index than males, and females showed an age-related increase in central blood pressures.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 11","pages":"1237-1250"},"PeriodicalIF":2.0,"publicationDate":"2025-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70002","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144626559","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}
Eva Kühl, Ina M. Koning, Maja Deković, Sander Thomaes, Juliëtte M. Liber
Objectives
This meta-analysis examined the effectiveness of psychosocial interventions for youth with mild intellectual disabilities or borderline intellectual functioning (MID-BIF) and externalising problems.
Methods
We assessed 2221 studies for eligibility and included seven studies containing 14 effect sizes. We used a multilevel modelling approach to analyse the data and calculated two different types of effect sizes: one for controlled trials and one for intervention pre-test to post-test effects (across all studies).
Results
Both controlled trial effect sizes (g = 0.49) and pre-test to post-test effect sizes were significant (g = 0.53). We were unable to detect heterogeneity of effects because of the small number of eligible studies. The risk of bias was generally high.
Discussion
Results suggest that psychosocial interventions decrease externalising problems among youth with MID-BIF. Effect sizes appear similar to those for youth without MID-BIF. We discuss recommendations for how the field can move forward.
{"title":"Effectiveness of Psychosocial Interventions for Youth With Mild Intellectual Disabilities or Borderline Intellectual Functioning and Externalising Problems: A Multilevel Meta-Analysis","authors":"Eva Kühl, Ina M. Koning, Maja Deković, Sander Thomaes, Juliëtte M. Liber","doi":"10.1111/jir.70014","DOIUrl":"10.1111/jir.70014","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>This meta-analysis examined the effectiveness of psychosocial interventions for youth with mild intellectual disabilities or borderline intellectual functioning (MID-BIF) and externalising problems.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We assessed 2221 studies for eligibility and included seven studies containing 14 effect sizes. We used a multilevel modelling approach to analyse the data and calculated two different types of effect sizes: one for controlled trials and one for intervention pre-test to post-test effects (across all studies).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Both controlled trial effect sizes (<i>g</i> = 0.49) and pre-test to post-test effect sizes were significant (<i>g</i> = 0.53). We were unable to detect heterogeneity of effects because of the small number of eligible studies. The risk of bias was generally high.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>Results suggest that psychosocial interventions decrease externalising problems among youth with MID-BIF. Effect sizes appear similar to those for youth without MID-BIF. We discuss recommendations for how the field can move forward.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 9","pages":"795-808"},"PeriodicalIF":2.0,"publicationDate":"2025-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70014","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144637226","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}
Satu Peltomäki, Sirpa Granö, Ella Rönkkö, Raija Pirttimaa, Kirsi Pyhältö, Elina Kontu
Background
Children with moderate to profound intellectual disabilities are not usually invited to share their lived experiences through research. In addition to their difficulties in communication and cognitive functions, their exclusion is caused by the lack of suitable data collection instruments. Since the 1990s, more research has focused on the lived experiences of people with intellectual disabilities. The aim of this review is to examine how the experiences of children with moderate to profound intellectual disabilities have been studied.
Method
A systematic review was conducted in accordance with the PRISMA statement. Studies were searched from CINAHL, Education Collection, Sociology Collection, Social Science Database and PsycINFO in November 2023 and January 2025. Eligible studies had been published since the year 2000 in English or Finnish, included at least one child with moderate to profound intellectual disabilities and aimed to collect their experiences. General study details, population characteristics, and data collection details were extracted. The methodological quality was assessed with the Mixed Methods Appraisal Tool (MMAT). The analysis included a descriptive summary and inductive content analysis with intercoder reliability assessment.
Results
The eligible studies (n = 41) used individual interviews, questionnaires, task-based approaches, observations and focus groups. Participants were mainly 12 years or older, had moderate intellectual disabilities, and could communicate with speech. The adaptations (i.e., any adjustments made for specific needs) comprised four top-level categories and 27 subcategories. The most commonly used adaptations and adaptations for different participant groups are presented.
Conclusions
Individual interviews and questionnaires with simple adaptations usually suit children with moderate intellectual disabilities who use speech to communicate. Individual interviews with multiple adaptations can be suitable for a wider group. Some task-based approaches and profound and long-lasting observations can be considered with children with non-symbolic communication and severe or profound intellectual disabilities.
{"title":"Studying the Experiences of Children With Moderate to Profound Intellectual Disabilities in Research: A Systematic Review","authors":"Satu Peltomäki, Sirpa Granö, Ella Rönkkö, Raija Pirttimaa, Kirsi Pyhältö, Elina Kontu","doi":"10.1111/jir.70009","DOIUrl":"10.1111/jir.70009","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with moderate to profound intellectual disabilities are not usually invited to share their lived experiences through research. In addition to their difficulties in communication and cognitive functions, their exclusion is caused by the lack of suitable data collection instruments. Since the 1990s, more research has focused on the lived experiences of people with intellectual disabilities. The aim of this review is to examine how the experiences of children with moderate to profound intellectual disabilities have been studied.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A systematic review was conducted in accordance with the PRISMA statement. Studies were searched from CINAHL, Education Collection, Sociology Collection, Social Science Database and PsycINFO in November 2023 and January 2025. Eligible studies had been published since the year 2000 in English or Finnish, included at least one child with moderate to profound intellectual disabilities and aimed to collect their experiences. General study details, population characteristics, and data collection details were extracted. The methodological quality was assessed with the Mixed Methods Appraisal Tool (MMAT). The analysis included a descriptive summary and inductive content analysis with intercoder reliability assessment.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The eligible studies (<i>n</i> = 41) used individual interviews, questionnaires, task-based approaches, observations and focus groups. Participants were mainly 12 years or older, had moderate intellectual disabilities, and could communicate with speech. The adaptations (i.e., any adjustments made for specific needs) comprised four top-level categories and 27 subcategories. The most commonly used adaptations and adaptations for different participant groups are presented.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Individual interviews and questionnaires with simple adaptations usually suit children with moderate intellectual disabilities who use speech to communicate. Individual interviews with multiple adaptations can be suitable for a wider group. Some task-based approaches and profound and long-lasting observations can be considered with children with non-symbolic communication and severe or profound intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"70 1","pages":"1-15"},"PeriodicalIF":2.0,"publicationDate":"2025-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.70009","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144618616","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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