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Direct linkIlse Harmina Zaal-Schuller; K. Kruithof; M. Hoogsteyns; A.M. Nieuwenhuijse; D.L. Willems; S.A. Huisman – Journal of Intellectual & Developmental Disability, 2025
Background: Patients with profound intellectual and multiple disabilities (PIMD) cannot clearly express themselves. Therefore, tacit knowledge (TK) is crucial in caring for individuals with PIMD, while it possibly also plays a significant role in medical consultations. Method: A qualitative inductive, thematic analysis was performed of 14…
Descriptors: Patients, Severe Intellectual Disability, Multiple Disabilities, Knowledge Level
Kasper Kruithof; Erik Olsman; Dick Willems; Karin Volkers; Bas Kleijwegt; Appolonia Nieuwenhuijse – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. Method: We conducted a mixed methods study,…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Family Needs, Parent Role
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
Siméon T. A. Lahaije; Jorien Luijkx; Aly Waninge; Annette A. J. van der Putten – International Journal of Developmental Disabilities, 2024
Families with a child with profound intellectual and multiple disabilities (PIMD) have to manage the child's pervasive support needs. To ensure that families are able to manage these needs, they should be properly supported. However, knowledge about the specific support needs of these families is sparse and fragmented, nor is it known if and which…
Descriptors: Family Needs, Children, Severe Intellectual Disability, Multiple Disabilities
Download full textValcourt-Pearce, Catherine C. – Odyssey: New Directions in Deaf Education, 2022
Since March 2020, when the worldwide COVID-19 pandemic hit, education in the United States has undergone significant change. As both a deaf professional in deaf education and as the parent of an OHKODA (only hearing kid of deaf adults) teenage son, a deafdisabled tween son, and deaf elementaryage fraternal twin sons, I have been in the unique…
Descriptors: COVID-19, Pandemics, Deafness, Students with Disabilities
Pancsofar, Nadya; Petroff, Jerry G.; Carlani, Joshuah – Young Exceptional Children, 2022
Although discussions around family support in early intervention and early childhood special education have often been framed to include all caregivers, recent research suggests that, in practice, professionals most often interact with children's mothers, and that fathers have been left feeling like the "odd man out" (Mueller &…
Descriptors: Early Intervention, Well Being, Fathers, Young Children
