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Reliable Assessment of Pain Behaviour in Adults with Profound Intellectual and Multiple Disabilities: The Development of an Instruction Protocol
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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
Transition to Adulthood of Adolescents with Profound Intellectual and Multiple Disabilities: Content Validation of the SGU-PIMD to Support Families
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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
The Roles of Adult Siblings of Individuals with a Profound Intellectual Disability
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Dorsman, Naomi I.; Waninge, Aly; van der Schans, Cees P.; Luijkx, Jorien; Van der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume. Method: We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire. Results: Most participants (89.7%) assumed…
Descriptors: Foreign Countries, Adults, Siblings, Severe Intellectual Disability
The Neglected Puzzle of Dementia in People with Severe/Profound Intellectual Disabilities: A Systematic Literature Review of Observable Symptoms
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Wissing, Maureen B. G.; Ulgiati, Aurora M.; Hobbelen, Johannes S. M.; De Deyn, Peter P.; Waninge, Aly; Dekker, Alain D. – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature. Method: A systematic…
Descriptors: Dementia, Severe Intellectual Disability, Disability Identification, Identification
Use of Behaviour Change Techniques by Direct Support Professionals to Support Healthy Lifestyle Behaviour for People with Moderate to Profound Intellectual Disabilities
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Overwijk, Annelies; van der Putten, Annette A. J.; van der Schans, Cees P.; Willems, Mariël; Hilgenkamp, Thessa I. M.; Waninge, Aly – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Behaviour change techniques (BCTs) can be employed to support a healthy lifestyle for people with intellectual disabilities. The aim of this study is to determine whether and which BCTs are used by direct support professionals (DSPs) for supporting healthy lifestyle behaviour of people with moderate to profound intellectual…
Descriptors: Behavior Modification, Behavior Change, Health Promotion, Moderate Intellectual Disability
Construct Validity of the Actiwatch-2 for Assessing Movement in People with Profound Intellectual and Multiple Disabilities
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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
Intervention Effects on Professionals' Attitudes towards the Participation of Adults with Visual and Severe or Profound Intellectual Disabilities
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Hanzen, Gineke; Waninge, Aly; van Nispen, Ruth M. A.; Vlaskamp, Carla; Post, Wendy J.; van der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2021
Background: We investigated the effects of the "Care for Participation+" (CFP+) intervention on direct support professionals' (DSPs') attitudes regarding the participation of adults with visual and severe or profound intellectual disabilities (VSPID). Methods: We implemented a pilot non-randomized controlled trial with two control groups…
Descriptors: Intervention, Allied Health Personnel, Caregiver Attitudes, Attitudes toward Disabilities
Dementia in People with Severe or Profound Intellectual (and Multiple) Disabilities: Focus Group Research into Relevance, Symptoms and Training Needs
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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
Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Applicability of Items in Dementia Screening Instruments for People with Intellectual Disabilities
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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
Dementia in People with Severe/Profound Intellectual (And Multiple) Disabilities: Practice-Based Observations of Symptoms
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Wissing, Maureen B. G.; Fokkens, Andrea S.; Dijkstra, Roos; 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: Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population. Methods: Care professionals and family…
Descriptors: Dementia, Severe Intellectual Disability, Multiple Disabilities, Symptoms (Individual Disorders)