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Direct linkJakub Niedbalski – Journal of Intellectual & Developmental Disability, 2025
Background: The aim of this study was to establish the perceived quality of life in twin siblings of individuals with profound intellectual and multiple disabilities (PIMD) living in Poland. Method: Semi-structured interviews were conducted with siblings of people with PMID. The interviews were subjected to thematic analysis according to grounded…
Descriptors: Twins, Quality of Life, Siblings, Severe Intellectual Disability
Kruithof, Kasper; IJzerman, Lisa; Nieuwenhuijse, Appolonia; Huisman, Sylvia; Schippers, Alice; Willems, Dick; Olsman, Erik – Journal of Intellectual & Developmental Disability, 2021
Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings' role regarding future care/support for their family member, we interviewed eight…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Siblings, Role
Geuze, Liesbeth; Goossensen, Anne; Schrevel, Samuel – Journal of Intellectual & Developmental Disability, 2023
Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon "parenting a child with PIMD." Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used. Findings: The essential meaning of the…
Descriptors: Foreign Countries, Children, Parent Attitudes, Child Rearing
Luijkx, Jorien; van der Putten, Annette A. J.; Vlaskamp, Carla – Journal of Intellectual & Developmental Disability, 2016
Background: Many previous family quality of life studies have relied on parental information for understanding if and how having a sibling with profound intellectual and multiple disabilities (PIMD) influences the sibling's quality of life. In the current study, children had the opportunity to describe both positive and negative aspects of having…
Descriptors: Siblings, Severe Intellectual Disability, Multiple Disabilities, Sibling Relationship
Walker, Ellen M.; Crawford, Frances; Leonard, Helen – Journal of Intellectual & Developmental Disability, 2014
Background: People who have profound intellectual and multiple disabilities face significant challenges to participating in their community and are reported to have few friends. In this paper, the issue of how this is addressed by parent-carers of young women with Rett syndrome is explored. Method: Transcripts of in-depth interviews with 6…
Descriptors: Parents, Genetic Disorders, Daughters, Interpersonal Relationship
