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Marissa A Diaz; Fionn Crombie Angus; Jerome E Bickenbach – Journal of Applied Research in Intellectual Disabilities, 2024
Background: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. Method: This qualitative study used reflexive thematic analysis. Two focus groups were held via…
Descriptors: Intellectual Disability, Affordances, Barriers, Death
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Oulton, Kate; Gibson, Faith; Kenten, Charlotte; Russell, Jessica; Carr, Lucinda; Hassiotis, Angela; Kelly, Paula; Kerry, Sam; Tuffrey-Wijne, Irene; Whiting, Mark; Wray, Jo – Journal of Applied Research in Intellectual Disabilities, 2024
Background: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities. Aim: To share rich detail of the emotional and…
Descriptors: Children, Intellectual Disability, Hospitalized Children, Hospitals
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Karine Baumstarck; Sibylle Del Duca; Houria El Ouazzani; Ilyes Hamouda; Any Beltran Anzola; Marie-Anastasie Aim; Marie-Christine Rousseau – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger…
Descriptors: Quality of Life, Severe Disabilities, Multiple Disabilities, Intellectual Disability
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Shannon Sinnott; Cliodhna O'Donovan; Suzanne Guerin – British Journal of Learning Disabilities, 2025
Background: The present study investigated staff perspectives on supporting individuals with intellectual disabilities with mental health relapse prevention. Methods: Eight staff with experience working with or supporting individuals engaged with a specialist mental health in intellectual disability (MHID) service (team member = 2, management…
Descriptors: Intellectual Disability, Mental Health, Health Promotion, Prevention
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Femke Scheffers; Eveline van Vugt; Xavier Moonen – Journal of Intellectual Disabilities, 2024
In people with intellectual disabilities research and policy are often still focused on risks or the prevention of risks. Research on the process of resilience is in its infancy in the care for people with intellectual disabilities. In the current study, applying a guided photovoice procedure, people with intellectual disabilities were asked what…
Descriptors: Foreign Countries, Intellectual Disability, Resilience (Psychology), Coping
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Mary Girgis; Josephine Paparo; Lynette Roberts; Ian Kneebone – Journal of Mental Health Research in Intellectual Disabilities, 2024
Background: Children and adolescents with intellectual disabilities commonly experience emotion regulation difficulties. To better understand emotion regulation in this population, the views of their teachers were considered. Methods: Twenty-nine teachers participated in two focus groups. This study utilized qualitative methods to determine if the…
Descriptors: Students with Disabilities, Intellectual Disability, Emotional Response, Self Control
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Ariel Schwartz; Nikola Davern; Alix Herer; Micah Peace-Urquilla; Jesse Corey; Dheva Muthuramalingam; Neha Vallabhaneni – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Young adults with intellectual and/or developmental disabilities lack access to mental health supports. Peer-delivered services may fill this gap. We adapted a theory-driven and evidence-based peer mentoring intervention for virtual-delivery and investigated its acceptability and participants' preliminary response. Methods: Twelve…
Descriptors: Intellectual Disability, Developmental Disabilities, Access to Health Care, Mental Health
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Caitlin Gray; Helen Leonard; Kingsley Wong; Sally Reed; Kate Schmidt; Rachel Skoss; Jianghong Li; Alison Salt; Jenny Bourke; Emma J. Glasson – Journal of Intellectual & Developmental Disability, 2024
Background: Siblings of children with intellectual disability have unique family experiences, varying by type of disability. Methods: Parents of children with Down syndrome (156) or with Rett syndrome (149) completed questionnaires relating to sibling advantages and disadvantages, experiences of holidays and recreation, and perceived availability…
Descriptors: Intellectual Disability, Children, Genetic Disorders, Siblings
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Lena Grüter – Insights into Learning Disabilities, 2024
Little is known about OCD in people with learning disabilities (LD) in general and in terms of current and professional support. In this study, we examined caregivers' perceived challenges and strategies practiced in institutionalized settings in managing OCD in people with LD and derived implications for research and practice. We studied…
Descriptors: Anxiety Disorders, Intellectual Disability, Foreign Countries, Caregivers
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Caroline L. Roberts; Ashleigh H. Avina; Frank J. Symons – Journal of Mental Health Research in Intellectual Disabilities, 2024
Introduction: There is evidence of a gap between individuals with intellectual and developmental disabilities (IDD) who need treatment for self-injurious behavior (SIB) and those who receive treatment. The purpose of this study (n = 15) was to begin to understand the treatment gap from the perspective of family caregivers. Methods: In…
Descriptors: Intellectual Disability, Family Role, Caregivers, Developmental Disabilities
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Esther Vela Llauradó; Laura Serrano Fernández; Laura Martín Martínez – SAGE Open, 2025
The impact of disability on families can vary greatly and depends directly on the coping ability of each family system. The purpose of this research is to analyze the functioning of 535 families of children with intellectual disability using the FACES-20Esp scale, identifying different types of families according to the variables of cohesion and…
Descriptors: Intellectual Disability, Family (Sociological Unit), Coping, Family Life
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Hannah Singer; Elaine B. Clarke; Hillary K. Schiltz; Catherine Lord – American Journal on Intellectual and Developmental Disabilities, 2025
This 10-year study followed 134 caregivers of young adults with autism and intellectual disability, examining the effects of caregivers' coping strategies, sociodemographic features, and young adult symptomatology on caregiver well-being and depression. Lower caregiver education and higher young adult externalizing behaviors predicted lower…
Descriptors: Caregivers, Coping, Developmental Disabilities, Young Adults
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Crystian Moraes Silva Gomes; Arthur Cassa Macedo; Evelyn Brunorio Salamão; Kellen Valladão Schiavo; Lilian Gazzoli Zanotelli – International Journal of Developmental Disabilities, 2024
Studies on the COVID-19 pandemic highlight detrimental effects of social distancing on mental health. These effects were also observed among caregivers of people with intellectual and developmental disabilities (IDD), who undergo particular challenges in this context. This study aimed to identify the coping strategies adopted by caregivers of…
Descriptors: Mental Health, Coping, Caregivers, Intellectual Disability
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Eunyoung Son; Donghyun Ahn; Johanna Inhyang Kim; Sojung Kim – Journal of Intellectual & Developmental Disability, 2024
Background: Limited data exist on problematic sexual behaviour (PSB) in youth with developmental disabilities in South Korea. Method: Sixty-one parents of children with intellectual disabilities or autism spectrum disorder (aged 13-30) reported children's PSB and emotional, behavioural, cognitive, and interpersonal factors. The frequency of PSB in…
Descriptors: Foreign Countries, Behavior Problems, Sexuality, Developmental Disabilities