BACKGROUND:Youth with intellectual disabilities are at increased risk of developing anxiety disorders. Adapted CBT shows potential for youth with intellectual disabilities, but evidence for effectiveness is limited and mixed, urging the need for further optimisation. This study aims to develop a peer-mentored CBT intervention, together with and for youth with mild-to-borderline intellectual disability and anxiety, based on scientific evidence, clinical expertise and patient preferences. METHODS:In the intervention development phase, 40 stakeholders (youth with intellectual disability, parents, therapists, experts by experience) took part in focus groups and interviews, providing insight into clinical expertise and patient preferences. RESULTS:Stakeholders expected peer-mentored CBT to result in anxiety reduction and increased self-esteem, due to maximised exposure and inclusion of a peer-mentor. Stakeholders identified barriers and provided their views on solutions. CONCLUSIONS:Stakeholders see potential in peer-mentored CBT. Including youth with intellectual disability was feasible and led to important insights for intervention development.
INTRODUCTION:Adults with intellectual disability (ID) have high rates of urinary incontinence, yet objective neuromuscular data are limited. We compared pelvic floor muscle (PFM) activation using surface electromyography (sEMG) in adults with ID versus matched controls. METHODS:In this cross-sectional study, 104 participants were recruited to an ID group (n = 52) and a matched control group (n = 52). Perianal sEMG recorded five maximal voluntary contractions following a standardised protocol. Intensity, variability, contraction onset and relaxation times were analysed using t or Mann-Whitney tests, MANOVA and multiple regression. RESULTS:Compared with controls, the ID group showed lower mean activity (5.3 ± 6.0 vs. 8.8 ± 7.2 μV; p < 0.001; d = 0.52), lower peaks, longer onset and greater variability; relaxation parameters did not differ. MANOVA indicated a significant global group effect (Wilks' λ = 0.801, p = 0.003). Regression identified ID as the sole independent predictor of reduced activation. CONCLUSIONS:Adults with ID exhibit weaker, less stable and delayed PFM activation, supporting tailored physiotherapy.
BACKGROUND:Despite growing global interest in participatory research, the practice of including persons with intellectual disabilities as co-researchers remains largely underexplored within the African context. This paper reflects on the methodological processes of implementing inclusive research with youth with intellectual disabilities, including the lessons learned during this process. METHODS:Youth with intellectual disabilities were recruited and trained as co-researchers to conduct interviews as part of a pilot study for the qualitative evaluation of the Special Olympics Healthy Communities Programme in South Africa. The core team consisted of four co-researchers and three university researchers. RESULTS AND CONCLUSIONS:The reflections and lessons learned from the research team demonstrated that conducting inclusive research with youth with intellectual disabilities is beneficial to all involved. It is achievable and speaks to the reciprocity of equity, inclusion, empowerment and social justice.
BACKGROUND:To date, little research has explored children with intellectual disabilities' own experience of the Covid-19 pandemic. The current study used photovoice to explore the impact of Covid-19 on children with intellectual disabilities. METHOD:Sessions were carried out with (n = 13) children aged 8-16 years across five sessions with five small groups (either face-to-face or video calls) between November 2021-March 2022. RESULTS:Three main themes (1) "Nobody likes the lockdown"; (2) "You don't want the Covid [to] get you"; (3) Everything is Different Now were connected to an overarching theme of (Im)Permanence. CONCLUSIONS:Children with intellectual disabilities were anxious during the Covid-19 pandemic and employed numerous coping strategies (such as distracting themselves with sensory-based activities). Despite looking forward to seeing family/friends, children reported worries and hesitancy about returning to 'normal', indicating potential lasting effects of the lockdown.
BACKGROUND:Supported decision-making is central to rights-based practice, but psychometric evidence in Catalan and Spanish is limited. METHODS:The Supported Decision Making Inventory (SDMI) was translated and adapted for use in Catalan and Spanish. Content validity, internal structure, reliability, measurement invariance and construct-related evidence were examined in 510 adults with intellectual and developmental disabilities receiving services from providers in Catalonia. RESULTS:Expert ratings provided content validity evidence. Confirmatory factor analysis supported the six-factor model (CFI = 0.925, TLI = 0.916, RMSEA = 0.055 and SRMR = 0.055) and scalar invariance across interview language. Reliability evidence varied across domains and subscales, with stronger estimates for environmental demands and decision-making supports than for personal factors. Construct-related evidence was stronger for environmental demands and decision-making supports than for personal factors. CONCLUSIONS:Findings support interpreting Catalan and Spanish SDMI scores at domain and subscale levels to assess supported decision-making and inform support planning.
BACKGROUND:The transition to adulthood for individuals with intellectual disabilities (ID) is a complex process marked by significant challenges for families. METHOD:Using semi-structured interviews and thematic analysis with 17 parents of individuals with ID, this qualitative research examined transition obstacles, support systems, and emotional responses impacting family reorganization and life projects (LP) definition. RESULTS:Parents reported difficulties in planning and implementing LP due to standardized approaches, a lack of structured employment pathways, and challenges navigating fragmented services. Emotionally, parents exhibited resilience, pride, and hope, alongside anxiety, frustration, and powerlessness regarding their children's future and the adequacy of support. CONCLUSIONS:The findings emphasize the need for holistic, family-centered support systems addressing practical and emotional needs. The LP framework is promising, but successful implementation requires bridging systemic gaps, enhancing service coordination, and empowering parents to improve outcomes for individuals with ID.
BACKGROUND:Assessment of adaptive functioning is part of the classification of intellectual disability and borderline intellectual functioning and important in estimating support needs. Adaptive functioning may be impaired in clients with psychiatric comorbidity. We investigated relationships between adaptive functioning and psychiatric comorbidity in individuals with intellectual disabilities or borderline intellectual functioning using the ADAPT. METHOD:ADAPT scores of clients with comorbid psychiatric disorders were compared with those of clients without comorbidity (N = 4376). RESULTS:In clients with intellectual disabilities, ASD was associated with lower ADAPT scores while depressive mood disorder was associated with higher ADAPT scores. We found a negative relationship between number of psychiatric disorders and mean total ADAPT score. CONCLUSION:When determining the severity of an intellectual disability or using the V-code borderline intellectual functioning, ASD and multiple comorbidities must be taken into account to prevent an intellectual disability or borderline intellectual functioning from being incorrectly classified.
PURPOSE:Neurodivergent teens experience elevated emotion dysregulation yet are excluded from treatment trials designed to address these challenges. Guided by implementation science, social model of disability and Dialectical Behaviour Therapy (DBT)'s biosocial model, this study explores the fit of DBT for neurodivergent youth, focusing on teens with fetal alcohol spectrum disorder (FASD). METHODS:A needs assessment was conducted with teens with FASD, their caregivers, and DBT clinicians. The survey assessed fit of DBT, barriers/facilitators and adaptation priorities. Data analysis employed RADaR (rigorous and accelerated data reduction) and thematic narrative analysis. RESULTS:Community members viewed DBT as promising for teens with FASD. They identified key barriers, including material complexity and a lack of neurodiversity-affirming practices. Clinicians reported limited training in FASD and offered concrete adaptation suggestions. DISCUSSION:Findings highlight the value of living experience in informing inclusive intervention design and provide a foundation for adapting DBT to better support neurodivergent adolescents.
BACKGROUND AND AIMS:In Vietnam, limited empirical research on families in which parents have intellectual disabilities constrains understanding of their circumstances and effective support strategies. Meanwhile, professionals working with these families play a key role in informing policy, developing interventions and providing support. METHODS:This study employed a survey based on a questionnaire developed by the authors and administered to 182 professionals, including researchers, intervention specialists, managers and teachers with experience working in special education. RESULTS:The main findings indicated that 54.4% of participants reported professional contact with such families and more than 80% endorsed the right of individuals with mild intellectual disabilities to marry. Reported forms of support primarily included counselling, parenting guidance and emotional or material assistance. CONCLUSIONS:The findings underscore the urgent need for in-depth research on parents with intellectual disabilities, their family circumstances and support needs to inform practical solutions and policy recommendations.
BACKGROUND:The employment rates among people with intellectual disabilities are relatively low globally. Given that, the study aimed to determine why individuals with intellectual disabilities who received training at Polish Vocational Training Centres were willing or reluctant to take a job in the future and how their motivations for either were related to their socio-demographic characteristics. METHODS:The study sample consisted of 1000 adults with intellectual disability, 547 men and 453 women aged 19-67 years, enrolled in VTC socio-occupational rehabilitation programmes. Their intentions regarding future employment were determined during one-on-one semi-structured interviews utilising the Me and My Work questionnaires. RESULTS:The quantitative analysis of the interview data showed equal numbers of study participants who wanted to work after training and those who did not consider this option, preferring to stay at a VTC. The qualitative analysis provided more knowledge of what specifically motivated each group's preferences.
BACKGROUND:People with intellectual disabilities often experience challenges to participation in psychosocial research. This review examined the barriers and facilitators affecting their participation. METHODS:Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. Databases searched included: PsycINFO, PubMed, Web of Science, and Scopus. A narrative synthesis structured using the Socio-Ecological Model, considering levels of influence-intrapersonal, interpersonal, institutional, community, and policy-was used. RESULTS:There were specific and shared barriers and facilitators for different levels of influence involved in psychosocial research. Contradictions between levels of influence, including beliefs about attitudes, views around harms, and the use of incentives, are discussed. CONCLUSIONS:The importance of targeting levels of influence utilising different methods to improve the participation of adults with intellectual disabilities in psychosocial research is highlighted.
BACKGROUND AND AIM:The number of children with intellectual disability has increased and remains a phenomenon that requires attention in research. Hence, the current study sought to explore challenges faced by parents raising children with intellectual disability at Tshisaulu village in Thulamela Municipality. METHODS:A qualitative method using an exploratory design was used to gain an understanding of participants' views and experiences of challenges faced in raising a child with intellectual disability. A total of 10 participants at Tshisaulu village were purposively sampled. Data was collected through interviews and analysed using reflexive analysis. RESULTS:The study findings revealed that parents face psychosocial isolation, stigma and unacceptance by society. CONCLUSION:It was recommended that awareness campaigns about intellectual disability be rendered in the community. Social workers, psychologists or mental health workers could work together with the community to conduct educational campaigns about disability in the community.
BACKGROUND AND AIMS:Down syndrome (DS) is associated with intellectual disability, with particular difficulties in expressive language and gross motor abilities, and relative strengths in receptive language. Here, we examine how this profile arises over the first five years of life. METHODS:A total of 104 children with DS (6-63 months) participated in a standardised developmental assessment (Mullen Scales of Early Learning; MSEL). Developmental trajectories were analysed cross-sectionally and validated with a longitudinal subsample. RESULTS:The trajectories gradually diverged from typical development, with an uneven pattern across domains. As children with DS get older, their gross motor difficulties persist, their expressive language becomes a relative weakness, and their receptive language becomes an area of emerging relative strength. Longitudinal data revealed limited stability of individual differences except for visual reception. CONCLUSION:Understanding how the DS profile emerges, as well as how stable individual differences are, presents important steps towards tailored support.
BACKGROUND AND AIMS:Bruxism is frequent in individuals with Down syndrome (DS), and there is a need to identify patient profiles to develop treatment plans that meet their specific needs. METHODS:Cluster analysis was applied on clinical, dentofacial, sleep, pharmacotherapy, and screen use cross-sectional data from 101 children/adolescents with DS (5-18 years). RESULTS:Cardiopathy and thyroid dysfunction were the most frequent health conditions. Centrally acting medications use increased with increasing age. Proxy-reported and clinically based sleep bruxism (SB) was found in 5% of children and 46% of adolescents. Three clusters were generated: 'children without SB', 'children/adolescents with lower frequency of SB', and 'adolescents with high frequency of SB'. SB, age, reflux, antidepressant use, snoring, sleep time, and smartphone/tablet use contributed most to cluster classification. CONCLUSION:The group of adolescents with high frequency of SB was characterized by antidepressant use, snoring, reflux, shorter sleep, and longer screen usage time.
BACKGROUND:Promoting self-determination during adolescence is crucial for enhancing academic engagement and social inclusion. This study examined the effects of the Self-Determined Learning Model (SDLMI) on the self-determination of students with and without intellectual disability (ID). METHODS:A randomised parallel-group trial involved 90 adolescents aged 13-17 years (M = 14.05, SD = 1.39), including students with (n = 41, 45.6%) and without ID (n = 49, 54.4%). Participants were randomly allocated to either the experimental (n = 41) group-which received the 12-week SDLMI intervention or the control group (n = 49), which followed standard school activities. Total composite self-determination scores and its components-constructs and essential characteristics were assessed pre- and post-intervention using the Self-Determination Inventory: Student Report (SDI:SR). RESULTS:Linear mixed-effects models were employed as the primary inferential analysis to examine Group × Time interaction effects. Baseline equivalence between groups was confirmed. Linear mixed-effects modelling revealed significant effects for the total composite self-determination score, demonstrating significantly greater improvements in the experimental group compared to the control group. Improvements were particularly evident in components-construct of autonomy (p = 0.001, d = 0.89) and self-realisation (p = 0.05, d = 0.56). Effect sizes indicated small-to-moderate gains, suggesting significant but incremental changes over the intervention period. No statistically significant changes were observed in the control group. CONCLUSIONS:The findings provide robust evidence for the causal efficacy of SDLMI as a viable instructional framework to foster self-determination skills for students with and without ID in mainstream inclusive classrooms.
BACKGROUND:Adults with intellectual disabilities from minority ethnic communities face intersectional disadvantage in social care. However, there is limited research on social care for these communities, with more studies focused on health care. METHOD:This rapid review aimed to map UK research on the social care experiences of adults with intellectual disabilities from minority ethnic communities. A total of 19 studies (2009-2025) were synthesised. RESULTS:While these communities face similar barriers to social care as majority communities, these are compounded by intersectional disadvantage, including difficulty navigating complex services, experiences of racism and lack of trust, and services that fail to meet cultural and religious needs. Limited support for family carers persists. CONCLUSIONS:The sparse evidence base has limited demographic, topic and methodological diversity. Some evidence argues for relational, person-centred cultural competence in care. More research is needed on structural and intersectional inequalities, with participation of people with intellectual disabilities from diverse communities.
BACKGROUND:Establishing the effectiveness of interventions to promote quality of life is essential to providing evidence-based care, optimising outcomes and justifying expenditure on such provision. This review explores how quality of life for adults with profound intellectual disabilities is characterised, measured and utilised to evaluate health interventions in the research literature. METHODS:A scoping review of primary research published 2010-2024 was conducted in CINAHL, MEDLINE, APA PsycINFO, APA SocIndex, Education Source, PUBMED, Web of Science and Scopus. 31 publications met inclusion criteria. RESULTS:Quality of life is multifaceted. No agreed definition or parameters of good, poor, or meaningful changes to quality of life exist for people with profound intellectual disabilities. Existing quality of life scales are not responsive enough to detect changes brought about by health interventions. CONCLUSION:More effective tools are needed to provide meaningful quality of life information in relation to health interventions for people with profound intellectual disabilities.
BACKGROUND:In Japan, providing reasonable accommodation for people with intellectual disabilities became mandatory on 1 April 2024, but evidence from non-psychiatric hospital care is limited. METHOD:We conducted semi-structured interviews with nine hospital-based non-psychiatric physicians in Japan (October 2023-March 2024) and analysed data using inductive thematic analysis. RESULTS:Physicians described accommodations in (1) medication management tailored to understanding, preferences, and home support; (2) relationship-centred communication to elicit symptoms and confirm comprehension; and (3) flexible care processes, including time, environment, and team roles. They mitigated risks through witnessed explanations, clear documentation, and proactive coordination with nurses and family members. CONCLUSIONS:Practical, workflow-embedded accommodations are common in non-psychiatric settings and could be strengthened by structured communication supports and systematic information sharing.
BACKGROUND:People with intellectual disabilities remain under-represented in architectural design and research. This paper draws on a doctoral study that explored how people with intellectual disabilities experience shopping centres. It aims to present an inclusive methodological framework that supports their meaningful participation in architectural research. METHODS:The study followed a Participatory Action Research approach supported by ethnographic methods. Data was generated through interviews, walking interviews, focus groups and co-design workshops and the data was analysed using reflexive thematic analysis. RESULTS:The analysis identified enabling measures that shaped an inclusive research environment, including collaboration with a self-advocacy organisation, the involvement of a co-researcher with lived experience, the use of prompts and flexible timelines. CONCLUSION:The resulting framework offers practical guidance for researchers seeking to embed inclusive approaches within architectural research and related fields. The article is co-authored by academic researchers and a co-researcher with lived experience of an intellectual disability.
