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Increased Life Expectancy of People with Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?
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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
A Family Peer Advocate Model to Address Disparities in Access to Care for Minority Autistic Children with Co-Occurring Attention-Deficit/Hyperactivity Disorder
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Pilar Trelles; Behrang Mahjani; Emma Wilkinson; Nicholas Buonagura; Lauren Donnelly; Jennifer Foss Feig; Danielle Halpern; Mary McKay; Paige Siper; Joseph D. Buxbaum; Alexander Kolevzon – Journal of Developmental and Physical Disabilities, 2025
Purpose: Family Peer Advocates (FPA) are used in healthcare broadly to facilitate engagement and address disparities in care. We previously reported on the benefit of FPAs in the care of autistic children on caregiver stress. Caregivers of autistic children report significant levels of caregiver stress, in particular when associated with…
Descriptors: Autism Spectrum Disorders, Attention Deficit Hyperactivity Disorder, Multiple Disabilities, Advocacy
Health Status, Social Support, and Quality of Life among Family Carers of Adults with Profound Intellectual and Multiple Disabilities (PIMD) in Taiwan
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Chou, Yueh-Ching; Chiao, Chi; Fu, Li-Yeh – Journal of Intellectual & Developmental Disability, 2011
Background: Primary family carers of adults with profound intellectual and multiple disabilities (PIMD) experience a range of considerable demands. Method: A census survey was conducted in a city of Taiwan; 796 family carers of adults (aged 18 or older) diagnosed with intellectual disability and/or with multiple disabilities living with the family…
Descriptors: Family Income, Severe Disabilities, Multiple Disabilities, Mental Retardation
Daily Stressors, Coping Responses, and Uplifts of Adolescents with Disabilities.
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Boyce, Glenna C.; Marshall, Elaine Sorensen; Peters, Mary – Education and Training in Mental Retardation and Developmental Disabilities, 1999
Content analysis was used to evaluate diary entries of six adolescents with physical and cognitive disabilities. Themes concerning daily stress-coping phenomena were identified including time and task management, awareness of limitations caused by disability, and intense, yet naive, concern about boy-girl relationships. (DB)
Descriptors: Adolescent Development, Adolescents, Content Analysis, Coping