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Direct linkFemmianne Bredewold; Simon van der Weele – Journal of Intellectual & Developmental Disability, 2025
Background: Researching the perspectives of people with profound intellectual and multiple disabilities (PIMD) presents complexity and uncertainty. Traditional research often prioritises rational, objectivist methods, which may overlook this complexity. Aims: This study aimed to develop methodological cues for researchers studying the perspectives…
Descriptors: Research Methodology, Cues, Family Influence, Caregivers
Ilse 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
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
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
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
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
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
Kamstra, A.; van der Putten, A. A. J.; Maes, B.; Vlaskamp, C. – Journal of Intellectual & Developmental Disability, 2019
Background: Peers living in the same group form important interaction partners for people with profound intellectual and multiple disabilities (PIMD). Given the severity of their disabilities, direct support persons (DSPs) play a significant role in facilitating interactions between these peers. This study explores the spontaneous interactions…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Interaction, Peer Relationship
van den Bosch, Kirsten A.; Andringa, Tjeerd C.; Peterson, Wolter; Ruijssenaars, Wied A. J. J. M.; Vlaskamp, Carla – Journal of Intellectual & Developmental Disability, 2017
Background: Previous research indicates that there is a relationship between the auditory environment and the core affects (or mood) of people with severe or profound intellectual disability. We conducted a systematic study to further explore this relationship. Method: Thirteen participants with severe or profound intellectual disability and…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Auditory Stimuli, Sensory Experience
Embregts, Petri J. C. M.; van Oorsouw, Wietske M. W. J.; Wintels, Sophie C.; van Delden, Robby W.; Evers, Vanessa; Reidsma, Dennis – Journal of Intellectual & Developmental Disability, 2020
Background: New technologies could broaden activities for people with profound intellectual and multiple disabilities (PIMD). This study compared watching television with a newly-developed interactive ball. Method: The ball responded with sounds, lights, and wiggling to the player's voice and movements. Five control sessions (watching television)…
Descriptors: Severe Intellectual Disability, Manipulative Materials, Interaction, Television Viewing
Jansen, Suzanne L. G.; van der Putten, Annette A. J.; Post, Wendy J.; Vlaskamp, Carla – Journal of Intellectual & Developmental Disability, 2018
Background: The aim of this study was to explore agreements in the way parents of a person with profound intellectual and multiple disabilities and professionals perceive the support in terms of its family-centredness in order to gain a better understanding of their collaboration. Method: An adapted version of the Dutch Measure of Processes of…
Descriptors: Parents, Parent Attitudes, Multiple Disabilities, Foreign Countries
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