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Holli M. Holmes; W. Ben Mortenson – Journal of Applied Research in Intellectual Disabilities, 2024
Background: People with intellectual disabilities are rarely involved in research on quality of life. The study sought to answer the question: what do people with intellectual disabilities believe improves or hinders their quality of life? Method: Using an inclusive, accessible research design, 18 participants met in small groups to answer the…
Descriptors: Quality of Life, Intellectual Disability, Attitudes, Beliefs
Corrina Alex Bebbington; Elizabeth Croot – Journal of Applied Research in Intellectual Disabilities, 2025
Background: People with intellectual disabilities face inequities in access to end-of-life care and inequalities in its quality and delivery. This review aimed to synthesise qualitative evidence to understand their own perspectives about what contributes to optimal end-of-life care. Methodology: Data from 93 participants in five qualitative…
Descriptors: Intellectual Disability, Terminal Illness, Death, Quality of Life
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
Sara Ryan; Rosaleen O'Brien – Journal of Applied Research in Intellectual Disabilities, 2024
Background: People with intellectual disabilities remain disadvantaged in many aspects of everyday life. Capability approach is an underused approach in social care research and has at its core the importance of having capabilities or opportunities to do what we value. We use this approach to explore how people with intellectual disabilities can…
Descriptors: Intellectual Disability, Quality of Life, Psychological Patterns, Empowerment
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
Helen Buxton; Manuel Gomes; Rafael Gafoor; Zac Taylor; Vaso Totsika – Journal of Applied Research in Intellectual Disabilities, 2024
Background: The Personal Outcomes Scale (POS) is a scale developed to measure quality of life of adults (18+) with intellectual disability. Previous studies have reported good fit for Spanish and Portuguese language versions of POS. Aims: This study aimed to evaluate the factor structure of the English language version of POS when used to measure…
Descriptors: Foreign Countries, Quality of Life, Intellectual Disability, Adults
Victoria Hogan; Martin Power; Michael Hogan; Margaret Hodgins – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Scant attention has been paid to the quality of working life of social care workers in Ireland. This study sought to characterise both the quality of working life and the well-being of social care workers in the disability sector. Method: A cross-sectional survey of social care workers (n = 307) was conducted. Measures of work-related…
Descriptors: Quality of Life, Job Satisfaction, Social Services, Disabilities
Angus Y. K. Lam; Matthew K. S. Yau; Richard C. Franklin; Peter A. Leggat – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Sexual well-being significantly impacts the overall quality of life for individuals with and without intellectual disabilities. Notably, parents play a pivotal role in influencing their children's sexual development, and their attitudes towards this topic are shaped by Chinese sociocultural values. Methods: This study employed…
Descriptors: Foreign Countries, Well Being, Quality of Life, Intellectual Disability
Suze van Wijngaarden; Marja W. Hodes; Leo Cardinaal; Mark Koning; Alice Schippers – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Families of parents with intellectual disabilities still face discrimination, stigma and inadequate support, placing them in vulnerable positions. Social assistive robotics offers promising support. This study investigates the possible impact of social assistive robotics on family quality of life (FQoL). Method: An inclusive, iterative…
Descriptors: Parents with Disabilities, Intellectual Disability, Attitudes toward Disabilities, Social Bias
Lauren Schwartz; Caroline J. Vrana-Diaz; Jessica E. Bohonowych; Lisa Matesevac; Theresa V. Strong – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Prader-Willi syndrome (PWS) is a rare neurodevelopmental disorder with symptoms that impact health and quality of life (QOL). There is limited data on global health, QOL and the relationship with mood in individuals with PWS. Methods: Parents completed three validated assessments, the Glasgow Depression Scale-Carer Supplement (GDS-CS),…
Descriptors: Life Satisfaction, Health, Psychological Patterns, Genetic Disorders
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
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
Kimberly J. Cheah; Vivienne Riches; Vimallan Manokara – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Despite various government initiatives, people with disabilities all over the world face some degree of hindrance when they try to contribute to society. Aim: This project sought to give voice to and understand the perceptions and experiences of persons with disabilities in Singapore when contributing to society through volunteerism…
Descriptors: Foreign Countries, Adults, Disabilities, Volunteers
Bruinsma, Eke; van den Hoofdakker, Barbara J.; Hoekstra, Pieter J.; de Kuijper, Gerda M.; de Bildt, Annelies A. – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Effects of staff provided positive behaviour support (PBS) for individuals with intellectual disabilities are unclear. Method: Using a multicentre non-randomised cluster controlled design, 26 teams of residential group homes, including 245 staff members of 167 individuals with intellectual disabilities, were allocated to a PBS or…
Descriptors: Adults, Intellectual Disability, Positive Behavior Supports, Allied Health Personnel
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
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