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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
Wessels, Marleen D.; Van Assen, Arjen A. G.; Post, Wendy J.; Van der Putten, Annette A. J. – Journal of Intellectual & Developmental Disability, 2023
Background: There are no psychometrically validated instruments available to measure motor skills of children with profound intellectual and multiple disabilities (PIMD). In this study, the construct validity and reliability (Rho) of the Motor Development List for children with PIMD (MDL-PIMD), a proxy-reported measure, was investigated. Methods:…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Psychomotor Skills, Test Validity
Kasper 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
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
den Boer, M. C.; Voermans, M. A. C.; Embregts, P. J. C. M. – Journal of Intellectual & Developmental Disability, 2023
Background: Mothers of young adults with profound intellectual and multiple disabilities that live at home are less likely to be on the radar of formal services. We explored the experience of these mothers over the course of the COVID-19 pandemic. Methods: A qualitative study using three case studies. Transcripts were analysed using Interpretative…
Descriptors: Mothers, Young Adults, Severe Intellectual Disability, Multiple Disabilities
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
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
Nieuwenhuijse, A. M.; Willems, D. L.; van Goudoever, J. B.; Olsman, E. – International Journal of Developmental Disabilities, 2022
Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Caregiver Attitudes, Caregivers
Lindenschot, Marieke; de Groot, Imelda J. M.; Nijhuis-van der Sanden, Maria W. G.; Steultjens, Esther M. J.; Koene, Saskia; Graff, Maud J. L. – Journal of Occupational Therapy, Schools & Early Intervention, 2022
In pediatric health care there is increasing attention for a child-centered approach, also referred to as personalized care (Coyne, Hallstrom, & Soderback, 2016). In this care it is essential to assess personal relevant functioning, hence, to explore which activities are important for a child and to assess the quality of performance of these…
Descriptors: Intervention, Intellectual Disability, Communication Disorders, Multiple Disabilities
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
van Delden, R. W.; Wintels, S. C.; van Oorsouw, W. M. W. J.; Evers, V.; Embregts, P. J. C. M.; Heylen, D. K. J.; Reidsma, D. – Journal of Intellectual & Developmental Disability, 2020
Background: New technology may stimulate active leisure activities for people with profound intellectual and multiple disabilities (PIMD). We conducted a study of an interactive ball that responded to gross body movement, focus of attention, and vocalisations of users with PIMD. The aim was to increase alertness and body movement and elicit more…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Recreational Activities, Physical Activities
Wissing, Maureen B. G.; Dijkstra, Roos; van der Wal, Ina A.; Grootendorst, Esther S.; Hobbelen, Johannes S.M.; van der Putten, Annette A. J.; De Deyn, Peter P.; Waninge, Aly; Dekker, Alain D. – Journal of Mental Health Research in Intellectual Disabilities, 2022
Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia…
Descriptors: Dementia, Severe Intellectual Disability, Multiple Disabilities, Screening Tests
Dhondt, Ann; Van keer, Ines; Nijs, Sara; van der Putten, Annette; Maes, Bea – Augmentative and Alternative Communication, 2021
The aim of this study was to develop a coding scheme that enables researchers and practitioners to conduct a detailed analysis of the communicative behavior of young children with significant cognitive and motor developmental delays. Currently, there is a paucity of methods to do conduct such an analysis. For the study, video observations of three…
Descriptors: Preschool Children, Interpersonal Communication, Developmental Delays, Physical Disabilities
Nieuwenhuijse, Appolonia M.; Willems, Dick L.; Olsman, Erik – Journal of Intellectual & Developmental Disability, 2020
Background: Quality of Life (QoL) may be a factor in physicians' decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD. Method: We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD,…
Descriptors: Physicians, Attitudes, Quality of Life, Severe Intellectual Disability
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
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