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Transition to Adulthood of Adolescents with Profound Intellectual and Multiple Disabilities: Content Validation of the SGU-PIMD to Support Families
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Luitwieler, Nicole; Luijkx, Jorien; Stege, Heleen A.; Grootoonk, Anneke; Schans, Cees P.; Putten, Annette A. J.; Waninge, Aly – Journal of Applied Research in Intellectual Disabilities, 2024
Background: For families with adolescent children, the transition to adulthood is usually challenging. This period may be extra demanding for families with a child with profound intellectual and multiple disabilities due to the child's strong and persistent support needs. To support these families during this phase and to facilitate the transition…
Descriptors: Adolescents, Adolescent Development, Family Role, Severe Intellectual Disability
The Roles of Adult Siblings of Individuals with a Profound Intellectual Disability
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Dorsman, Naomi I.; Waninge, Aly; van der Schans, Cees P.; Luijkx, Jorien; Van der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume. Method: We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire. Results: Most participants (89.7%) assumed…
Descriptors: Foreign Countries, Adults, Siblings, Severe Intellectual Disability
A Valuable Burden? The Impact of Children with Profound Intellectual and Multiple Disabilities on Family Life
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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
"I Love My Sister, but Sometimes I Don't": A Qualitative Study into the Experiences of Siblings of a Child with Profound Intellectual and Multiple Disabilities
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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