Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life.
Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life.
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DOI：
10.1186/s12913-021-07019-6
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发表时间：
2021-09-21
影响因子：
2.8
通讯作者：
Kupeli N
中科院分区：
文献类型：
--
作者：
Aker N;West E;Davies N;Moore KJ;Sampson EL;Nair P;Kupeli N
痴呆症患者占COVID-19死亡人数的很大比例。在大流行期间，家庭照顾者面临着作出重大和情绪化的决定，包括关于生命结束的决定。我们的目的是探索在英格兰第一波COVID-19大流行期间，痴呆症患者的家庭照顾者所面临的挑战，正如慈善电话支持热线工作人员所报告的那样，他们能够客观地讨论许多不同照顾者拨打电话的一系列不同经历。特别是，我们专注于生命末期的关键问题和决策领域。我们进行了一项定性研究，使用半结构化的采访与8个电话支持线的工作人员从两个英国的慈善机构谁支持照顾者的人生活与痴呆症和那些在生命的尽头。于二零二零年五月至六月英格兰第一波疫情期间进行了访谈。确定了危机期间的不确定性和反应性的总体主题，并在此范围内确定了五个主要主题：对护理过渡的担忧，参与支持和帮助的不确定性，流行病驱动的护理规划，维护痴呆症患者的福祉，以及信任，代理和混乱的损失。家庭照顾者可能不愿意寻求支持，因为担心他们的亲属可能会发生什么，这可能包括住院和患上COVID-19，护理院安置，或在生命结束时无法与亲属在一起。在某些情况下，缺乏信任已经发展，而不是照顾者正在寻求他们信任的替代服务，如全国知名的慈善机构的支持。这项研究被用来通知决策援助的发展，以支持家庭照顾者作出决定照顾他们的亲属与痴呆症在大流行期间，谁缺乏能力作出自己的决定。
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. 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. 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. 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.
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影响因子：
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作者：
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通讯作者：
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