Tuffrey-Wijne, Irene;
Bruun, Andrea;
Tilley, Elizabeth;
Giles, Jo;
Gibson, Sarah;
Cresswell, Amanda;
Keagan-Bull, Richard;
... Anderson-Kittow, Rebecca; + view all
(2025)
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.
Journal of Applied Research in Intellectual Disabilities
, 38
(1)
, Article e70019. 10.1111/jar.70019.
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Abstract
BACKGROUN: 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.
| Type: | Article |
|---|---|
| Title: | 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 |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1111/jar.70019 |
| Publisher version: | https://doi.org/10.1111/jar.70019 |
| Language: | English |
| Additional information: | © 2025 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/). |
| Keywords: | Social Sciences, Science & Technology, Life Sciences & Biomedicine, Psychology, Educational, Rehabilitation, Psychology, advance care planning, end-of-life decisions, intellectual disability, palliative care, shared decision making, DEATH, STAFF, EXPERIENCES |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Language and Cognition |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10209851 |
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