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Direct linkLotte Piekema; Annet ten Brug; Aly Waninge; Annette van der Putten – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Although particular technologies can enhance the quality of life (QoL) of people with profound intellectual and multiple disabilities (we use the term pervasive support needs), their objectives and outcomes are understudied. A systematic literature review was therefore conducted to explore this topic. Method: A search of four databases…
Descriptors: Quality of Life, Disabilities, Intellectual Disability, Assistive Technology
Karine Baumstarck; Sibylle Del Duca; Houria El Ouazzani; Ilyes Hamouda; Any Beltran Anzola; Marie-Anastasie Aim; Marie-Christine Rousseau – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger…
Descriptors: Quality of Life, Severe Disabilities, Multiple Disabilities, Intellectual Disability
Gemma Testerink; Annet ten Brug; Gerdine Douma; Annette van der Putten – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Snoezelen is often used for people with profound intellectual and multiple disabilities, but scarcely evaluated. This study aimed to provide insight into the application and perceived effects of snoezelen from the perspective of support persons. Method: We conducted an international survey with professionals (n = 130) and relatives (n…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Program Effectiveness, Professional Personnel
Enninga, Annemieke; Waninge, Aly; Post, Wendy J.; van der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Persons with profound intellectual and multiple disabilities (PIMD) are vulnerable when it comes to experiencing pain. Reliable assessment of pain-related behaviour in these persons is difficult. "Aim" To determine how pain items can be reliably scored in adults with PIMD. Methods: We developed an instruction protocol for the…
Descriptors: Test Reliability, Pain, Behavior, Adults
Petitpierre, Geneviève; Dind, Juliane; De Blasio, Catherine; Gremaud, Germaine – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Olfaction provides information on very important dimensions of the environment; however the olfactory abilities of children and young people with profound intellectual and multiple disabilities (PIMD) remain largely unknown. This within-subjects study explores olfactory detection abilities in children with PIMD. Method: Twenty-two…
Descriptors: Olfactory Perception, Children, Adolescents, Stimuli
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
Jean Ware; Susan Buell; Darren D. Chadwick; Jill Bradshaw; Juliet Goldbart – Journal of Applied Research in Intellectual Disabilities, 2024
Introduction: This paper aims to identify to what extent staff training interventions are successful in enhancing the development of communication skills in people with profound intellectual and multiple disabilities. Methods: A systematic review was undertaken, conforming to PRISMA guidelines. English language, peer reviewed, empirical studies of…
Descriptors: Children, Adults, Intellectual Disability, Severe Disabilities
Siméon T. A. Lahaije; Jorien Luijkx; Aly Waninge; Annette A. J. van der Putten – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Families with a child with profound intellectual and multiple disabilities have to manage the pervasive support needs of their child, which is a complex task. By properly supporting them, we can ensure these families live a positive and meaningful life. Method: A product to support these families was developed using the method of…
Descriptors: Curriculum Development, Online Courses, Training, Government Employees
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
Hoogsteyns, Maartje; Zaal-Schuller, Ilse; Huisman, Sylvia; Nieuwenhuijse, Appolonia Marga; Etten-Jamaludi, Faridi; Willems, Dick; Kruithof, Kasper – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Caring for persons with profound intellectual and multiple disabilities (PIMD) demands specific expertise. Tacit knowledge seems to play an important role, but little is known about its nature, including what is necessary for its development and transfer. Aim: To gain understanding of the nature and development of tacit knowledge…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Severe Disabilities, Knowledge Level
Griffin, Joanna; Gore, Nick – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Most parents of children with an intellectual disability or who are autistic identify positives in their family life and their own wellbeing, in addition to reported mental health challenges. Several models and interventions have been developed in relation to parent carer wellbeing. Few studies have asked parent carers how they support…
Descriptors: Parents, Children, Intellectual Disability, Autism Spectrum Disorders
Wessels, Marleen D.; van der Putten, Annette A. J.; Paap, Muirne C. S. – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Knowledge about the quality of assessment methods used in the support of people with profound intellectual and multiple disabilities (PIMD) is scarce. This study aimed to provide an overview of the assessment methods used in practice and to examine whether these instruments were studied for their psychometric properties for people with…
Descriptors: Foreign Countries, Severe Intellectual Disability, Multiple Disabilities, Evaluation Methods
Maes, Bea; Nijs, Sara; Vandesande, Sien; Van keer, Ines; Arthur-Kelly, Michael; Dind, Juliane; Goldbart, Juliet; Petitpierre, Geneviève; Van der Putten, Annette – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Within the context of the Special Interest Research Group (SIRG) on Persons with Profound Intellectual and Multiple Disabilities (PIMD), researchers often discuss the methodological problems and challenges they are confronted with. The aim of the current article was to give an overview of these challenges. Methods: The challenges are…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Research Methodology, Barriers
van Alphen, Helena J. M.; Waninge, Aly; Minnaert, Alexander E. M. G.; Post, Wendy J.; van der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Valid measures to assess either small or assisted performed movements of people with profound intellectual and multiple disabilities (PIMD) are required. We analysed the construct validity of the Actiwatch-2 to assess movement in people with PIMD. Method: Twenty-two persons with PIMD were video recorded while wearing an Actiwatch-2. We…
Descriptors: Construct Validity, Measurement Equipment, Motion, Severe Intellectual Disability
Dekker, Alain D.; Wissing, Maureen B. G.; Ulgiati, Aurora M.; Bijl, Bas; van Gool, Gaby; Groen, Marieke R.; Grootendorst, Esther S.; van der Wal, Ina A.; Hobbelen, Johannes S. M.; De Deyn, Peter P.; Waninge, Aly – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.…
Descriptors: Dementia, Severe Intellectual Disability, Multiple Disabilities, Clinical Diagnosis
