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Direct linkSien Vandesande; Evy Meys; Bea Maes – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Parents' decisions to use out-of-home support for children with intellectual disabilities significantly impact all family members, including siblings. However, siblings' perspectives on this transition to group homes remain underexplored. This study examines siblings' emotional experiences and changes in their personal and family lives…
Descriptors: Siblings, Children, Adolescents, Emotional Response
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
Maeve Goodall; Kate Irving; Mary Nevin – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Pain recognition and assessment in individuals with profound intellectual disabilities are challenging. Exploring effective methods of addressing this is essential. This study aims to discover current nursing practice in this area of care as the first of a four-phased appreciative inquiry study, to inform further research and practice.…
Descriptors: Pain, Severe Intellectual Disability, Nurses, Role
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
Doodeman, Tanja W. M.; Schuengel, Carlo; Sterkenburg, Paula S. – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Sensitive responsiveness is an important aspect in affect-regulation of people with severe to profound intellectual disabilities. Aim: This randomized controlled trial evaluated the Attune & Stimulate-checklist, a tool for detecting subtle and idiosyncratic communicative behaviours and responding adequately. Methods: Effects on the…
Descriptors: Severe Intellectual Disability, Interpersonal Communication, Responses, Caregivers
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
Peter E. Langdon; Magdalena M. Apanasionok; Emma Scripps; Alastair Barrowcliff; Asit Biswas; Karen Bunning; Cheryl Burbidge; Katherine Byron-Daniel; Alex Cookson; Sarah Croom; Malwina Filipczuk; David Gillespie; Richard P. Hastings; Andrew Jahoda; Rachel McNamara; Lawrence Patterson; Dheeraj Rai; Robyn Steward; Kylie M. Gray – Journal of Applied Research in Intellectual Disabilities, 2024
Background: The aim of this feasibility study was to adapt and model a behavioural intervention for anxiety with autistic adults with moderate to severe intellectual disabilities. Method: Twenty-eight autistic adults with moderate or severe intellectual disabilities, 37 carers, and 40 therapists took part in this single-group non-randomised…
Descriptors: Autism Spectrum Disorders, Adults, Severe Intellectual Disability, Moderate Intellectual Disability
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
Penninga, Wieneke; Nijs, Sara L. P.; Bakel, Hedwig J. A.; Embregts, Petri J. C. M. – Journal of Applied Research in Intellectual Disabilities, 2022
Background; High-quality, affective relationships are built on meaningful moments of interaction, which are challenging for support staff to establish with people with profound intellectual disabilities. Therefore, we explored what makes a moment of interaction meaningful to support staff and what circumstances facilitate meaningful moments of…
Descriptors: Interaction, Interpersonal Relationship, Caregivers, Employees
Diane Fox; Julie Beadle-Brown; Jill Bradshaw; Christine Bigby; Lisa Richardson – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Previous research identifies organisational culture as one of a number of factors associated with the quality of life outcomes of group home residents' with intellectual and developmental disabilities. This study aims to elaborate on the dimensions of group home culture in settings in England. Method: Participant observations and…
Descriptors: Intellectual Disability, Group Homes, Developmental Disabilities, Organizational Culture
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
