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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
Nijs, S.; Zijlmans, M.; Schuengel, C.; Embregts, P. J. C. M. – Journal of Intellectual & Developmental Disability, 2023
Background: The high support needs of persons with profound intellectual and multiple disabilities hamper their possibilities for self-determination. To support their self-determination understanding of what this means for this group is necessary. Method: A three-round Delphi procedure with international experts was undertaken to operationalise…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Self Determination, Individual Characteristics
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
Maria Baranowski; Margherita Cameranesi; Javier Mignone; Lindsay McCombe; Kayla Kostal; Jenna Heschuk; Shahin Shooshtari – Journal of Intellectual & Developmental Disability, 2024
Background: Deinstitutionalisation refers to the transition of individuals with intellectual and developmental disabilities from large institutions to smaller homes in the community. The purpose of this study was to explore how family members of persons with intellectual and developmental disabilities perceived their loved ones' community…
Descriptors: Severe Intellectual Disability, Severe Disabilities, Developmental Disabilities, Family Attitudes
Marie Matérne; Marie Holmefur – Journal of Intellectual & Developmental Disability, 2024
Introduction: There is little research regarding quality of health care for people with profound intellectual and multiple disabilities (PIMD), who often are represented by their relatives, because of their limited communication. The aim of this study was to explore experiences and perspectives of relatives regarding healthcare services for adults…
Descriptors: Access to Health Care, Adults, Severe Intellectual Disability, Multiple Disabilities
Vandesande, Sien; Bosmans, Guy; Sterkenburg, Paula; Schuengel, Carlo; Maes, Bea – Journal of Intellectual & Developmental Disability, 2022
Background: The feasibility and acceptability was explored of the newly-constructed Attachment Strengths and Needs Interview for parents of children with severe or profound intellectual disabilities. Method: A partially mixed methods approach (with focus on the quantitative data) was used to clarify parents' and professionals' viewpoints regarding…
Descriptors: Childhood Needs, Attachment Behavior, Parents, Children
Wessels, Marleen D.; Paap, Muirne C. S.; Van der Putten, Annette A. J. – Journal of Intellectual & Developmental Disability, 2021
Background: Research about the psychometric properties of the Behavioural Appraisal Scales (BAS) in people with profound intellectual and multiple disabilities (PIMD) is limited. This study evaluates invariance in factor structure, item bias and convergent validity of the BAS. Methods: Data on the BAS from two studies (n = 25; n = 52) were…
Descriptors: Test Validity, Ability Identification, Severe Intellectual Disability, Multiple Disabilities
Delany, C.; Diocera, M.; Lewin, J. – Journal of Intellectual & Developmental Disability, 2023
Background: People with intellectual disability who require cancer services face several barriers and inequities, including delayed or unrecognised cancer diagnosis and inadequate attention paid to their specific concerns, needs and preferences about care. Methods: In this case report, we present a case report of a 33-year-old male with severe…
Descriptors: Intellectual Disability, Cancer, Barriers, Access to Health Care
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
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
Kildahl, Arvid Nikolai; Jørstad, Ingvild – Journal of Intellectual & Developmental Disability, 2022
Background: Autistic adults with intellectual disabilities (ID) seem to be particularly vulnerable to potentially traumatic experiences and post-traumatic stress disorder (PTSD). Furthermore, this population may be at risk for a different set of traumatic experiences than the general population. However, knowledge is sparse concerning PTSD symptom…
Descriptors: Adults, Autism Spectrum Disorders, Severe Intellectual Disability, Violence
Nieuwenhuijse, Appolonia M.; Willems, Dick L.; van Goudoever, Johannes B.; Echteld, Michael A.; Olsman, Erik – Journal of Intellectual & Developmental Disability, 2019
Background: The objective of this study was to provide an overview of concepts, methods of assessment and assessors in empirical studies on quality of life (QoL) of persons with Profound Intellectual and Multiple Disabilities (PIMD). Method: A narrative literature review was conducted by searching electronic databases until December 2016, and the…
Descriptors: Quality of Life, Severe Intellectual Disability, Multiple Disabilities, Evaluation Methods
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
