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

IF 2.1 3区 医学 Q2 PSYCHOLOGY, EDUCATIONAL
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
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引用次数: 0

摘要

智障人士很少参与临终决定。本研究调查并进一步开发方法和资源,以实现包容性的临终关怀计划。方法采用多中心、多方法、四阶段研究,包括195名研究人员、参与者、顾问和共同设计成员,包括36名智障人士:(1)证据回顾;(ii)利益相关者焦点小组;(iii)基于经验的共同设计和(iv)共同设计资源的测试。结果现有资源的有效性缺乏实证证据。焦点小组的参与者表示对包容性临终关怀计划的压倒性支持,但在地点/内容/时间/谁/如何方面存在显著差异。共同设计小组开发了一个现有资源和新资源的工具包。工具包测试人员的反馈是积极的,但注意到在测试期间员工参与的障碍。灵活、创新和互动的方法可以开启对话,是包容性临终关怀计划的基石。障碍包括缺乏工作人员的信心、时间和资源以及避免死亡的文化。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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.

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来源期刊
CiteScore
4.70
自引率
12.50%
发文量
79
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.
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