{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,5]],"date-time":"2026-09-05T22:46:59Z","timestamp":1788648419267,"version":"build-2803163510"},"reference-count":48,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2024,8,8]],"date-time":"2024-08-08T00:00:00Z","timestamp":1723075200000},"content-version":"vor","delay-in-days":7,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2024,8]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Support staff within social care settings have expressed a need for resources to facilitate end\u2010of\u2010life care planning with people with intellectual disabilities. This study aimed to co\u2010design a preliminary toolkit of end\u2010of\u2010life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>An adapted Experience\u2010Based Co\u2010Design process was applied to develop a toolkit for end\u2010of\u2010life care planning with people with intellectual disabilities. A co\u2010design group (the \u2018All Together Group\u2019) met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co\u2010facilitated the workshops), five family members, five intellectual disability support staff including two intellectual disability service managers,\u00a0and five healthcare professionals.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The All Together Group tested resources for and approaches to end\u2010of\u2010life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy\u2010read end\u2010of\u2010life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) \u2018When I'm ill\u2019 thinking cards; (ii) \u2018Let's Talk About Funerals\u2019 conversation\u2010starter pictures; and (iii) \u2018My funeral\u2019 planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end\u2010of\u2010life care planning with people with intellectual disabilities.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Through an iterative, flexible, inclusive,\u00a0and comprehensive co\u2010design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end\u2010of\u2010life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online.<\/jats:p><\/jats:sec><jats:sec><jats:title>Patient or Public Contribution<\/jats:title><jats:p>The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.\u2010B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co\u2010design group as well. Two of these representatives were also co\u2010applicants in the overall project (N.P. and S.S.). The co\u2010design group included people with intellectual disabilities, families, intellectual disability support staff\u00a0and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations,\u00a0and policymakers.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hex.14174","type":"journal-article","created":{"date-parts":[[2024,8,8]],"date-time":"2024-08-08T09:02:30Z","timestamp":1723107750000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["The All Together Group: Co\u2010Designing a Toolkit of Approaches and Resources for End\u2010of\u2010Life Care Planning With People With Intellectual Disabilities in Social Care Settings"],"prefix":"10.1111","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9620-0290","authenticated-orcid":false,"given":"Andrea","family":"Bruun","sequence":"first","affiliation":[{"name":"Department of Public Health, Children's, Learning Disability and Mental Health, School of Nursing, Allied and Public Health Kingston University London Kingston Upon Thames UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amanda","family":"Cresswell","sequence":"additional","affiliation":[{"name":"Department of Public Health, Children's, Learning Disability and Mental Health, School of Nursing, Allied and Public Health Kingston University London Kingston Upon Thames UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Jeffrey","sequence":"additional","affiliation":[{"name":"Department of Public Health, Children's, Learning Disability and Mental Health, School of Nursing, Allied and Public Health Kingston University London Kingston Upon Thames UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Leon","family":"Jordan","sequence":"additional","affiliation":[{"name":"Department of Public Health, Children's, Learning Disability and Mental Health, School of Nursing, Allied and Public Health Kingston University London Kingston Upon Thames UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-0278-8112","authenticated-orcid":false,"given":"Richard","family":"Keagan\u2010Bull","sequence":"additional","affiliation":[{"name":"Department of Public Health, Children's, Learning Disability and Mental Health, School of Nursing, Allied and Public Health Kingston University London Kingston Upon Thames UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-9472-7001","authenticated-orcid":false,"given":"Jo","family":"Giles","sequence":"additional","affiliation":[{"name":"Department of Public Health, Children's, Learning Disability and Mental Health, School of Nursing, Allied and Public Health Kingston University London Kingston Upon Thames 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