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‐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
Abstract
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.