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Direct linkKasper Kruithof; Maartje Hoogsteyns; Ilse Zaal-Schuller; Sylvia Huisman; Dick Willems; Appolonia Nieuwenhuijse – Journal of Intellectual & Developmental Disability, 2024
Background: Parents' tacit knowledge plays an important role in the care of persons with profound intellectual and multiple disabilities (PIMD). As little is known about its nature and use, we aimed to explore this parental tacit knowledge. Method: We conducted semi-structured interviews with parents (n = 11) about their tacit knowledge of their…
Descriptors: Parents, Parent Child Relationship, Knowledge Level, Children
Željka Nikolaševic; Karolina Cuckovic; Ksenija Gebauer-Bukurov; Vojislava Bugarski Ignjatovic – Journal of Intellectual & Developmental Disability, 2024
Background: Multiple disabilities represent separate entities that cannot be reduced to the sum of disabilities or the main disability. This study compared the health-related quality of life (HRQoL) of children and adolescents with multiple disabilities and those with one developmental disability. We further assessed how comorbidities and…
Descriptors: Multiple Disabilities, Quality of Life, Children, Adolescents
Kruithof, Kasper; Olsman, Erik; Nieuwenhuijse, Appolonia; Willems, Dick – Journal of Intellectual & Developmental Disability, 2022
Background: The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method: We interviewed 27 parents of persons with PIMD and analysed the data…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Parent Attitudes, Children
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, 2019
Background: This study analysed parents' positive and negative appraisals of the impact of raising children with profound intellectual and multiple disabilities (PIMD) on family life. Method: Mothers (n = 52) and fathers (n = 27) of 56 children with PIMD completed a questionnaire focused on their positive and negative appraisals of the impact of…
Descriptors: Parent Attitudes, Child Rearing, Severe Intellectual Disability, Multiple Disabilities
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
