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Beyond the Frame: A Photo-Elicitation Study of Sibling Experiences on the Stay of Their Sibling with a Moderate to Profound Intellectual Disability in Group Homes
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Sien 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
The Use of Snoezelen to Support People with Profound Intellectual and Multiple Disabilities: An International Survey Describing the Perspectives of Support Persons
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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
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
Discovering the Current 'State of Play' in Pain Recognition and Assessment for People with Profound Intellectual Disabilities by Nurses: An Appreciative Inquiry Approach
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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
Development of an Online Training Course for Government Employees to Support Families with a Child with Profound Intellectual and Multiple Disabilities
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Sim̩on T. A. Lahaije; Jorien Luijkx; Aly Waninge; Annette A. J. van der Putten РJournal 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
"What if I'm No Longer Around?": An Evaluative Description of a Structured Group Conversation about the Care for Persons with Profound Intellectual and Multiple Disabilities When They Outlive Their Parents
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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
Behavioural Interventions to Treat Anxiety in Adults with Autism and Moderate to Severe Intellectual Disabilities: The BEAMS-ID Feasibility Study
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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
Organisational Culture in 'Better' Group Homes for Adults with Intellectual and Developmental Disabilities in England: A Qualitative Study
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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
Behavioural Activation for Depressive Symptoms in Adults with Severe to Profound Intellectual Disabilities: Modelling and Initial Feasibility Study
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Amanda Gillooly; Dave Dagnan; Richard Hastings; Chris Hatton; Nicola McMeekin; Susie Baines; S. -A. Cooper; Lucy Crawford; David Gillespie; Jenny Miller; Andrew Jahoda – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Almost no research has been published reporting on evaluations of the effectiveness of psychological interventions for people with severe to profound intellectual disabilities and depression. This paper describes the development and initial feasibility testing of an adapted Behavioural Activation therapy (BeatIt2) for this population.…
Descriptors: Severe Intellectual Disability, Psychological Needs, Intervention, Depression (Psychology)
Outcomes of a Creative Ability-Based Intervention: Advancing Independence in Learners with Severe Intellectual Disability
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Annamarie Elisabet Wyngaard; Catharina Jacoba Elizabeth Uys – Journal of Applied Research in Intellectual Disabilities, 2025
Background: When supporting learners with severe intellectual disabilities, teaching methods needs to be adapted. Vona du Toit Model of Creative Ability (VdTMoCA) aims to enhance participation and facilitate adaptive responses through targeted intervention principles. This study aimed to develop and evaluate the impact of an intervention programme…
Descriptors: Intellectual Disability, Independent Living, Severe Intellectual Disability, Students with Disabilities
Adapting Psychological Interventions for People with Severe and Profound Intellectual Disabilities: A Behavioural Activation Exemplar
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Andrew Jahoda; Dave Dagnan; Richard Hastings; Amanda Gillooly; Jenny Miller; Susie Baines; Chris Hatton – Journal of Applied Research in Intellectual Disabilities, 2024
Background: People with severe to profound intellectual disabilities experience similar or higher levels of depression than those with more mild intellectual disabilities. Yet, there is an absence of evidence about how to adapt existing psychological therapies for this population. Method: A behavioural activation intervention (BeatIt) for people…
Descriptors: Intellectual Disability, Severe Intellectual Disability, Depression (Psychology), Intervention
Assessing the Reliability and Validity of a Health-Related Quality of Life Instrument, CPADULT, in a Dutch Sample of Adults with Severe Disabilities Who Are Non-Ambulatory
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Zalmstra, Trees A. L.; Reinders-Messelink, Heleen A.; Elema, Agnes; Van Gils, Willemijn; Van Der Sluis, Corry K.; Van Der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2024
Background: A measure to provide insight regarding health-related quality of life of adults with severe motor and intellectual disabilities was lacking. For this reason, the CPADULT was developed. This measure includes domains relating to an individual's physical, mental, and social functioning. The purpose of this study was to assess the…
Descriptors: Test Validity, Test Reliability, Quality of Life, Adults