Background:

Advance Care Planning (ACP) allows people the opportunity to plan for a time when they may lose capacity. The aim of this study was to determine the extent people with Parkinson’s disease (PD) were aware of ACP, existing plans they held and to explore their own views, as well as their relatives, on planning for the future.

Methods:

This was a sequential explanatory mixed methods study with a postal quantitative survey to establish awareness and engagement with planning for the future; and qualitative semi-structured interviews to explore the views of people with PD and their relatives on ACP and future plans.

Results:

104 questionnaires were analyzed. 76% of respondents had not heard of ACP, while 69% expressed an interest in finding out more about ACP. 78% had a will, and 23% had appointed lasting power of attorneys. All interviewees acknowledged engaging in some aspect of planning. Plans were mostly practical as opposed to health-care related. Interviewees expressed a preference for ACP to be carried out by their PD team, at home, and at a time relevant to their condition.

Conclusion:

The awareness and understanding of ACP in people with PD is low. While there is desire to be better informed about ACP, this did not translate into desire to engage in ACP. Health professionals should identify people for whom ACP may serve a positive purpose, and proactively address ACP as a continuum with them, while ensuring awareness is raised about ACP, and there is access for who are interested.

中文翻译：

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帕金森病患者如何提前制定护理计划？基于英国的混合方法研究

背景：

预先护理计划 (ACP) 让人们有机会计划他们可能失去能力的时间。本研究的目的是确定帕金森病 (PD) 患者对 ACP 的了解程度、他们持有的现有计划，并探讨他们自己以及他们的亲属对未来规划的看法。

方法：

这是一项连续的解释性混合方法研究，通过邮政定量调查来建立对未来规划的认识和参与；和定性的半结构化访谈，以探讨 PD 患者及其亲属对 ACP 和未来计划的看法。

结果：

分析了104份问卷。76% 的受访者没有听说过 ACP，而 69% 的受访者表示有兴趣了解更多关于 ACP 的信息。78% 的人有遗嘱，23% 的人指定了持久授权书。所有受访者都承认参与了规划的某些方面。与医疗保健相关的计划大多是实用的。受访者表示更愿意由他们的 PD 团队在家中并在与他们的状况相关的时间进行 ACP。

结论：

PD 患者对 ACP 的认识和理解较低。虽然希望更好地了解 ACP，但这并没有转化为参与 ACP 的愿望。卫生专业人员应确定 ACP 可能为他们服务的积极目的的人，并主动将 ACP 视为与他们的连续体，同时确保提高对 ACP 的认识，并且有兴趣的人可以访问。