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From Assistive to Inclusive? A Systematic Review of the Uses and Effects of Technology to Support People with Pervasive Support Needs
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Lotte 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
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
Increased Life Expectancy of People with Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?
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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
A Systematic Review of Research on Staff Training as an Intervention to Develop Communication in Children and Adults with Profound Intellectual and Multiple Disabilities
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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
Parental Experiences of Quality of Life When Caring for Their Children with Intellectual Disability: A Meta-Aggregation Systematic Review
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Macey Barratt; Peter Lewis; Natalie Duckworth; Natasha Jojo; Viktorija Malecka; Signe Tomsone; Dita Rituma; Nathan J. Wilson – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children. Method: A qualitative…
Descriptors: Parent Attitudes, Quality of Life, Child Rearing, Parent Child Relationship
School Satisfaction Predicts Quality of Life for Children with Severe Developmental Disabilities and Their Families
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Sarah E. Bjornson; Adrienne Perry – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Children with severe developmental disabilities are frequently excluded from research, and little is known about their quality of life (QoL). Using a mixed-methods approach, this study examined relationships between school factors and QoL for these children and their families. Method: 171 parents of children with severe developmental…
Descriptors: Students with Disabilities, Developmental Disabilities, Severe Disabilities, Quality of Life
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
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
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
"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
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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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
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)
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