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ERIC Number: EJ1474921
Record Type: Journal
Publication Date: 2025-May
Pages: 15
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: EISSN-1468-3148
Available Date: 2025-06-11
The Views of People with Intellectual Disabilities about What Contributes towards Optimal End-of-Life Care: A Qualitative Evidence Synthesis
Corrina Alex Bebbington1; Elizabeth Croot1
Journal of Applied Research in Intellectual Disabilities, v38 n3 e70067 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 studies were thematically synthesised to identify optimal care and inform recommendations. Results: Four overarching and interrelated analytical themes were generated. (1) Optimal care recognises heterogeneity and is person-centred. It aligns with individuals' wishes and preferences which are established through 'active' communication. (2) This enables an individual's holistic support needs to be identified. (3) It fulfils ethical obligations around autonomy, equity and a person's 'right to know'. (4) It involves the necessary people to ensure all needs are met. Conclusion: Optimal end-of-life care is person-centred, holistic, uses 'active' communication, meets ethical obligations and involves the necessary people in care.
Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A
Author Affiliations: 1Sheffield Centre for Health and Related Research, University of Sheffield, Sheffield, UK