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-Kittow
{"title":"在成人社会护理环境中,与智障人士共同设计临终关怀计划的方法和资源工具包:一项多阶段研究","authors":"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-Kittow","doi":"10.1111/jar.70019","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>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.</p>\n </section>\n </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1000,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70019","citationCount":"0","resultStr":"{\"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\",\"authors\":\"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-Kittow\",\"doi\":\"10.1111/jar.70019\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Background</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>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. 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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
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.
期刊介绍:
JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.