终末期痴呆患者的家庭照护者在 COVID-19 大流行期间面临的挑战。
Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life.
机构信息
Centre for Ageing Population Studies, Research Department of Primary Care and Population Health, University College London, London, UK.
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
出版信息
BMC Health Serv Res. 2021 Sep 21;21(1):996. doi: 10.1186/s12913-021-07019-6.
BACKGROUND
People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life.
METHODS
We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May-June 2020.
RESULTS
An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion.
CONCLUSIONS
Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.
背景
死于 COVID-19 的人群中，有很大一部分是痴呆症患者。在大流行期间，家庭护理人员面临着重大而情绪化的决策，包括临终决策。我们旨在探索在英格兰 COVID-19 大流行的第一波期间，家庭护理人员所面临的挑战，这些护理人员是慈善电话支持热线的工作人员，他们能够客观地讨论许多不同护理人员的不同经历，这些护理人员拨打了求助热线。特别是，我们关注的是生命末期的关键关注点和决策领域。
方法
我们使用半结构化访谈，对来自英国两家支持痴呆症患者及其临终护理人员的慈善电话支持热线的 8 名工作人员进行了定性研究。访谈是在英格兰 COVID-19 大流行的第一波期间于 2020 年 5 月至 6 月进行的。
结果
确定了一个危机中不确定性和反应性的总体主题，并在其中确定了五个主要主题：对护理过渡的担忧、在获得支持和帮助方面的不确定性、大流行推动的护理计划、维持痴呆症患者的幸福感、信任、失去代理和困惑。
结论
家庭护理人员可能因为担心亲人可能发生的事情而不愿意寻求支持，这些事情可能包括住院和感染 COVID-19、入住养老院，或者在亲人临终时无法陪伴在他们身边。在某些情况下，缺乏信任已经产生，相反，护理人员正在从他们信任的替代服务中寻求支持，例如全国知名的慈善机构。本研究用于为在大流行期间为其痴呆症亲属做出护理决策的家庭护理人员开发决策辅助工具提供信息，这些家庭护理人员没有做出自己决定的能力。
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