Research Department of Primary Care and Population Health, Centre for Ageing Population Studies, University College London, London, UK.
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Health Expect. 2024 Jun;27(3):e14123. doi: 10.1111/hex.14123.
To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life.
We conducted semi-structured interviews with a sample of family carers enroled into a 6-month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self-reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021-July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results.
Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity.
An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning.
Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis.
探索针对终末期痴呆患者家属的决策辅助工具的使用体验、可接受性和实用性。
我们对参加英格兰为期 6 个月可行性研究的家庭照护者进行了半结构化访谈，根据与他们照顾的人（如配偶、成年子女）的关系、年龄、性别以及在可行性研究期间是否使用决策辅助工具等因素进行抽样，以获取各种不同的体验和观点。访谈于 2021 年 3 月至 7 月进行，并采用反思性主题分析进行分析。我们使用 COREQ 清单报告我们的方法和结果。
家庭照护者认为决策辅助工具是可以接受的，他们形容其内容全面、易于获取相关信息，其呈现方式便于良好的参与。对决策辅助工具的体验涵盖了四个主要主题，展示了其可接受性和实用性：1. 支持和安慰的来源；2. 赋能的对话和信心；3. 纳入患有痴呆症的人；4. 分解复杂性。
专注于痴呆症临终关怀决策的辅助工具支持家庭照护者分解复杂和情绪化的决策，不仅在当下决策时，而且在未来规划时也能如此。
我们的 3 名患者和公众参与（PPI）成员（均为前家庭照护者）在整个更广泛的研究中至关重要。PPI 支持了主题指南的开发，支持了主题指南和访谈程序的试用，最后支持了主题的发展，作为分析的一部分。
