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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
Parental Experiences of Quality of Life When Caring for Their Children with Intellectual Disability: A Meta-Aggregation Systematic Review
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Macey Barratt; Peter Lewis; Natalie Duckworth; Natasha Jojo; Viktorija Malecka; Signe Tomsone; Dita Rituma; Nathan J. Wilson – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children. Method: A qualitative…
Descriptors: Parent Attitudes, Quality of Life, Child Rearing, Parent Child Relationship
School Satisfaction Predicts Quality of Life for Children with Severe Developmental Disabilities and Their Families
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Sarah E. Bjornson; Adrienne Perry – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Children with severe developmental disabilities are frequently excluded from research, and little is known about their quality of life (QoL). Using a mixed-methods approach, this study examined relationships between school factors and QoL for these children and their families. Method: 171 parents of children with severe developmental…
Descriptors: Students with Disabilities, Developmental Disabilities, Severe Disabilities, Quality of Life
Beyond the Frame: A Photo-Elicitation Study of Sibling Experiences on the Stay of Their Sibling with a Moderate to Profound Intellectual Disability in Group Homes
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Sien Vandesande; Evy Meys; Bea Maes – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Parents' decisions to use out-of-home support for children with intellectual disabilities significantly impact all family members, including siblings. However, siblings' perspectives on this transition to group homes remain underexplored. This study examines siblings' emotional experiences and changes in their personal and family lives…
Descriptors: Siblings, Children, Adolescents, Emotional Response
Development of an Online Training Course for Government Employees to Support Families with a Child with Profound Intellectual and Multiple Disabilities
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Siméon T. A. Lahaije; Jorien Luijkx; Aly Waninge; Annette A. J. van der Putten – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Families with a child with profound intellectual and multiple disabilities have to manage the pervasive support needs of their child, which is a complex task. By properly supporting them, we can ensure these families live a positive and meaningful life. Method: A product to support these families was developed using the method of…
Descriptors: Curriculum Development, Online Courses, Training, Government Employees
Outcomes of a Creative Ability-Based Intervention: Advancing Independence in Learners with Severe Intellectual Disability
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Annamarie Elisabet Wyngaard; Catharina Jacoba Elizabeth Uys – Journal of Applied Research in Intellectual Disabilities, 2025
Background: When supporting learners with severe intellectual disabilities, teaching methods needs to be adapted. Vona du Toit Model of Creative Ability (VdTMoCA) aims to enhance participation and facilitate adaptive responses through targeted intervention principles. This study aimed to develop and evaluate the impact of an intervention programme…
Descriptors: Intellectual Disability, Independent Living, Severe Intellectual Disability, Students with Disabilities