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ERIC Number: EJ1461135
Record Type: Journal
Publication Date: 2025-Jan
Pages: 11
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: EISSN-1468-3148
Available Date: 2025-02-10
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
Irene Tuffrey-Wijne1; Andrea Bruun1; Elizabeth Tilley2; Jo Giles1; Sarah Gibson1; Amanda Cresswell1; Richard Keagan-Bull1; Leon Jordan1; Gemma Allen3; Sarah Swindells4; Nicola Payne5; Rhidian Hughes6; Rebecca Anderson-Kittow1
Journal of Applied Research in Intellectual Disabilities, v38 n1 e70019 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, including 36 people with intellectual disabilities: (i) evidence review; (ii) stakeholder focus groups; (iii) Experience-Based Co-Design and (iv) testing of co-designed resources. Results: There was little empirical evidence regarding the efficacy of existing resources. Focus group participants signalled overwhelming support for inclusive end-of-life care planning but notable variance around where/what/when/who/how. The co-design group developed a toolkit of existing and new resources. Feedback from toolkit testers was positive but barriers to staff engagement through the testing period were noted. Conclusions: Flexible, creative and interactive approaches that open up conversations are the building blocks for inclusive end-of-life care planning. Barriers include lack of staff confidence, time and resources and a death avoidance culture.
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.bibliotheek.ehb.be/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: 1Kingston University, London, UK; 2The Open University, Milton Keynes, UK; 3The Mary Stevens Hospice, Stourbridge, UK; 4Dimensions UK Ltd, Reading, UK; 5MacIntyre, Milton Keynes, UK; 6Voluntary Organisations Disability Group, London, UK