School of Social Work, 5620McGill University, Montreal, Quebec, Canada.
Special Care Counselling, 91424Vanier College, Montreal, Quebec, Canada.
Dementia (London). 2021 Aug;20(6):1859-1874. doi: 10.1177/1471301220973059. Epub 2020 Dec 8.
This study reports findings from a series of focus groups with persons with dementia and family caregivers intended to explore: (1) perceptions of and experiences with advance care planning (ACP); (2) concerns related to future care including, but not limited to, end-of-life care; and (3) practices that may support positive engagement with ACP. A total of 18 participants including 10 persons with dementia and eight family caregivers participated in five focus groups held in two urban cities in Canada. All focus group deliberations were audio recorded, transcribed verbatim, and analyzed in five stages using a semantic thematic approach. All participants expressed some form of engagement in ACP, but understandings were limited and divergence was expressed regarding the timing of more expansive conversations about future care. Although some persons with dementia were ready to engage in future care discussions, most preferred focusing on the present and suggested their families did not require direction. This placed families in the complex dilemma of protecting their loved ones while compromising their own needs for dialogue. Although individually focused models of ACP engagement hold promise for those persons with dementia ready to engage in future planning, our findings suggest that early engagement of families in the reflective process may go a long way in supporting ACP activation. Our findings further suggest that persons with dementia who do not have close family/friends may require extensive ACP encouragement and support from service providers.
本研究报告了一系列针对痴呆症患者和家庭照顾者的焦点小组的研究结果，旨在探讨：(1) 对预先医疗指示(ACP)的看法和经验；(2) 与未来护理相关的担忧，包括但不限于临终护理；(3) 可能支持积极参与 ACP 的做法。共有 18 名参与者参加了五个焦点小组，其中包括 10 名痴呆症患者和 8 名家庭照顾者，分别在加拿大的两个城市举行。所有焦点小组的讨论都被录音、逐字转录，并使用语义主题方法分五个阶段进行分析。所有参与者都表示在某种程度上参与了 ACP，但理解有限，对于更广泛的未来护理对话的时间存在分歧。虽然一些痴呆症患者已经准备好参与未来的护理讨论，但大多数人更愿意关注现在，并表示他们的家人不需要指导。这使家庭陷入了保护亲人的复杂困境，同时又损害了他们自己对话的需求。虽然针对那些准备好参与未来规划的痴呆症患者的个人重点 ACP 参与模式有一定的前景，但我们的研究结果表明，提前让家庭参与反思过程可能会极大地支持 ACP 的启动。我们的研究结果还表明，那些没有亲密家人/朋友的痴呆症患者可能需要服务提供者提供广泛的 ACP 鼓励和支持。
