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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
Mediating Effects of Family Functioning on the Relationship between Care Burden and Family Quality of Life of Caregivers of Children with Intellectual Disabilities in Mongolia
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Kim, Jinhee; Kim, Hyunlye; Park, Seojin; Yoo, Jaeyong; Gelegjamts, Delgersuren – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Intellectual disabilities are characterized by constant and complex needs for care that place a heavy burden on the families of affected individuals and affect their overall quality of life. We evaluated the mediating effects of family functioning on the relationship between care burden and the family quality of life of caregivers of…
Descriptors: Family Relationship, Family Life, Quality of Life, Child Caregivers
Stressed Parents, Happy Parents. An Assessment of Parenting Stress and Family Quality of Life in Families with a Child with Phelan-McDermid Syndrome
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Droogmans, Gilles; Vergaelen, Elfi; Van Buggenhout, Griet; Swillen, Ann – Journal of Applied Research in Intellectual Disabilities, 2021
Background Individuals with Phelan-McDermid syndrome (PMS) are characterised by phenotypical traits that can be experienced as challenging by their environment. This study assessed parenting stress and Family Quality of Life (FQOL) in parents of individuals with PMS and identified potential contributing variables. Method: Mothers (n = 14) and…
Descriptors: Genetic Disorders, Child Rearing, Stress Variables, Family Environment
Staff Stress and Burnout in Intellectual Disability Services: Work Stress Theory and Its Application
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Devereux, Jason; Hastings, Richard; Noone, Steve – Journal of Applied Research in Intellectual Disabilities, 2009
Background: Staff in intellectual disability services can be at risk of stress and burnout at work. Given that staff well-being has implications for the quality of life of the staff themselves and people with intellectual disabilities themselves, this is an important research and practical topic. In this paper, we review work stress theories that…
Descriptors: Mental Retardation, Burnout, Quality of Life, Stress Variables
Families of 30-35-Year Olds with Down's Syndrome
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Carr, Janet – Journal of Applied Research in Intellectual Disabilities, 2005
Background: The families of a population sample of people with Down's syndrome (DS), and of their non-disabled controls, have been followed since early childhood, and the families have now been seen again as their sons and daughters reached age 30 and 35 years. Methods: A semi-structured interview schedule was used, including items from the…
Descriptors: Siblings, Sibling Relationship, Social Life, Quality of Life