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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
Communicating about Death and Dying with Adults with Intellectual Disabilities Who Are Terminally Ill or Bereaved: A UK-Wide Survey of Intellectual Disability Support Staff
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Tuffrey-Wijne, Irene; Finlayson, Janet; Bernal, Jane; Taggart, Laurence; Lam, Claire Kar Kei; Todd, Stuart – Journal of Applied Research in Intellectual Disabilities, 2020
Background: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. Method: Staff who support people with intellectual disability in the UK (n = 690)…
Descriptors: Death, Adults, Terminal Illness, Grief
Caring for a Child with a Life Limiting Condition: The Experiences of Nurses in an Intellectual Disability Service Provider
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Connor, Eilis O.; Corcoran, Yvonne – Journal of Intellectual Disabilities, 2022
This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful sampling recruited 10 participants. Data was collected using one to one semi-structured interviews and…
Descriptors: Nurses, Children, Intellectual Disability, At Risk Persons
Breaking Bad News to People with Learning Disabilities: A Literature Review
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Brownrigg, Sophie – British Journal of Learning Disabilities, 2018
Background: This article provides a literature review exploring reasons for disclosure and nondisclosure of bad news to people with learning disabilities. Connections are made to current policy, law and ethics to highlight the complexity of this issue. Methods: This review examines literature on disclosing bad news to people with learning…
Descriptors: Intellectual Disability, Disclosure, Policy, Laws
Ageing, End-of-Life Care, and the National Disability Insurance Scheme: What Can We Learn from Overseas?
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Wark, Stuart – Journal of Intellectual & Developmental Disability, 2015
The author of this conceptual article was awarded a Churchill Fellowship to travel to the United States, Ireland, and United Kingdom to meet with researchers, practitioners, and community agencies and review how support for people with intellectual disability is provided. A specific focus was upon provision of care for individuals who were either…
Descriptors: Aging (Individuals), Older Adults, Terminal Illness, Health Services