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Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning with People with Intellectual Disabilities within Adult Social Care Settings: A Multi-Phase Study
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Irene Tuffrey-Wijne; Andrea Bruun; Elizabeth Tilley; Jo Giles; Sarah Gibson; Amanda Cresswell; Richard Keagan-Bull; Leon Jordan; Gemma Allen; Sarah Swindells; Nicola Payne; Rhidian Hughes; Rebecca Anderson-Kittow – Journal of Applied Research in Intellectual Disabilities, 2025
Background: People with intellectual disabilities are rarely involved in end-of-life decisions. This study investigated and further developed approaches and resources to enable inclusive end-of-life care planning. Methods: A multi-centre, multi-method four-phase study, involving 195 researchers, participants, advisors and co-design members,…
Descriptors: Terminal Illness, Older Adults, Planning, Intellectual Disability
The Views of People with Intellectual Disabilities about What Contributes towards Optimal End-of-Life Care: A Qualitative Evidence Synthesis
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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