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Adapted Support to Families Headed by Parents with Intellectual Disability through Support to Practitioners: SUF Resource Centre and Examples from Uppsala, Sweden
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Tommie Forslund; Sandra Melander; Lydia Springer; Laila Dahlström Stolpe; Karin Jöreskog – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Parents with intellectual disability and their children are entitled to adapted support, but practitioners lack knowledge, have scarce access to adapted methods, and work in siloed organisations with limited resources. SUF resource centre was therefore formed, in Region Uppsala, Sweden, to support families headed by parents with…
Descriptors: Parents with Disabilities, Intellectual Disability, Resources, Allied Health Personnel
Quality of Life and Mental Health in Caregivers of Children with Down Syndrome and Sleep Problems
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Kasey Fullwood; Andrew Collaro; Lachlan Power; Jasneek Chawla – Journal of Applied Research in Intellectual Disabilities, 2025
Introduction: Children with Down Syndrome are more likely to experience sleep issues throughout their life compared to typically developing children. Sleep difficulties also affect caregivers, who are at increased risk of sleep disturbances, mood disturbances and poorer wellbeing. However, the impact of poor sleep in this cohort of children on…
Descriptors: Down Syndrome, Children, Sleep, Quality of Life
Community Participation of Families of Children with Profound Intellectual and Multiple Disabilities in South Africa
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McKenzie, Judith Anne; Kahonde, Callista; Mostert, Karen; Aldersey, Heather Michelle – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Families struggle to support family members with profound intellectual and multiple disabilities (PIMD), especially in low resourced settings where formal services may not be available. Method: The adapted Family Community Participation survey, measuring perceptions of community participation, was administered to 67 primary caregivers…
Descriptors: Family Involvement, Family Needs, Community Services, Child Caregivers
"I Wanted to Come Here Because of My Child": Stories of Migration Told by Turkish-Speaking Families Who Have a Son or Daughter with Intellectual Disabilities
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Sandhu, Prabhleen; Ibrahim, Jeyda; Chinn, Deborah – Journal of Applied Research in Intellectual Disabilities, 2017
Background: Despite growing interest in the experiences and social barriers experienced by people with intellectual disabilities from ethnic minorities, the specific challenges associated with migration from abroad faced by these individuals and their families have been overlooked. This research focuses on narratives told by Turkish-speaking…
Descriptors: Intellectual Disability, Minority Groups, Turkish, Immigrants
Needs and Supports of People with Intellectual Disability and Their Families in Catalonia
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Vilaseca, Rosa; Gràcia, Marta; Beltran, Francesc S.; Dalmau, Mariona; Alomar, Elisabeth; Adam-Alcocer, Ana Luisa; Simó-Pinatella, David – Journal of Applied Research in Intellectual Disabilities, 2017
Background: The study assesses the support needs of individuals with intellectual disability and their families in Catalonia. The present authors examine family quality of life (FQoL), identify the individual services required and assess families' perceptions of the extent to which their family member with intellectual disability and they…
Descriptors: Foreign Countries, Intellectual Disability, Needs Assessment, Family Needs
The Role of the External Personal Assistants for Children with Profound Intellectual and Multiple Disabilities Working in the Children's Home
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Axelsson, Anna Karin – Journal of Applied Research in Intellectual Disabilities, 2015
Background: Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods: A mixed method study was performed including qualitative data from interviews with 11…
Descriptors: Severe Mental Retardation, Severe Disabilities, Multiple Disabilities, Mixed Methods Research
Unmet Needs of Families of School-Aged Children with an Autism Spectrum Disorder
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Brown, Hilary K.; Ouellette-Kuntz, Helene; Hunter, Duncan; Kelley, Elizabeth; Cobigo, Virginie – Journal of Applied Research in Intellectual Disabilities, 2012
Background: To aid decision making regarding the allocation of limited resources, information is needed on the perceived unmet needs of parents of school-aged children with an autism spectrum disorder. Materials and Methods: A cross-sectional survey was conducted of 101 Canadian families of school-aged children with an autism spectrum disorder.…
Descriptors: Children, Autism, Foreign Countries, Resource Allocation