Rapid development of a COVID-19 care planning decision-aid for family carers of people living with dementia.
Rapid development of a COVID-19 care planning decision-aid for family carers of people living with dementia.
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DOI：
10.1111/hex.13552
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发表时间：
2022-08
期刊：
影响因子：
--
通讯作者：
Davies N
中科院分区：
文献类型：
--
作者：
West E;Nair P;Aker N;Sampson EL;Moore K;Manthorpe J;Rait G;Walters K;Kupeli N;Davies N
新冠肺炎对痴呆症患者和他们的照顾者的影响不成比例。它对保健和社会保健系统的影响要求对这一人群的保健规划和决策采取快速反应办法，其核心是对不断变化的个人和系统需求的反身性和反应能力。考虑到这一点，开发了一种帮助痴呆症患者家庭的决策辅助工具。与痴呆症患者和照顾他们的人共同制作，为痴呆症患者的家庭照顾者提供决策援助，以支持在新冠肺炎大流行期间及以后的决策。2020年进行了半结构化访谈：(1)来自两个英国国家临终关怀和支持性护理组织的工作人员；(2)痴呆症患者和家庭护理人员。同时，对关于老年人在生命末期作出决定的现有证据进行了快速审查。来自这些投入的证据被结合起来，通过与关键利益攸关方举行的一系列研讨会来形成决策援助，其中包括我们的患者和公众参与小组，该小组由一名痴呆症患者和家庭护理人员组成；一组临床和学术专家；以及一组政策和慈善领导。对现有证据的快速审查突出表明，必须同时考虑决策的过程和结果要素及其对痴呆症患者及其家人的影响。定性访谈讨论了广泛的话题，包括信任、中介机构和在新冠肺炎背景下做出决策的困惑。决策援助主要集中在关怀行动、法律问题、照顾者福祉和求助。将不同来源和形式的证据结合在一起是一个强大和系统的过程，事实证明，这一过程在新冠肺炎的背景下为家庭护理人员创造了一种新的决策辅助工具，是有效和有价值的。这一过程的成果是与痴呆症患者、家庭护理人员、临床和学术专家以及领先的国家痴呆和姑息治疗机构共同制作的基于证据的实用决策辅助工具。在整个研究过程中，我们与痴呆症患者、家庭护理人员和其他关键利益攸关方合作，从研究开发和设计到纳入利益攸关方研讨会和传播。
COVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed. To coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond. Semi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking. Combining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations. We worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.
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影响因子：
8.1
作者：
Ryan, Molly J.;Giles-Vernick, Tamara;Graham, Janice E.
通讯作者：
Graham, Janice E.
影响因子：
4
作者：
Armstrong, Megan;Aker, Narin;Nair, Pushpa;Walters, Kate;Barrado-Martin, Yolanda;Kupeli, Nuriye;Sampson, Elizabeth L.;Manthorpe, Jill;West, Emily;Davies, Nathan
通讯作者：
Davies, Nathan
影响因子：
4
作者：
Giebel C;Lord K;Cooper C;Shenton J;Cannon J;Pulford D;Shaw L;Gaughan A;Tetlow H;Butchard S;Limbert S;Callaghan S;Whittington R;Rogers C;Komuravelli A;Rajagopal M;Eley R;Watkins C;Downs M;Reilly S;Ward K;Corcoran R;Bennett K;Gabbay M
通讯作者：
Gabbay M
影响因子：
2.8
作者：
Aker N;West E;Davies N;Moore KJ;Sampson EL;Nair P;Kupeli N
通讯作者：
Kupeli N
影响因子：
105.7
作者：
Livingston, Gill;Leavey, Gerard;Cooper, Claudia
通讯作者：
Cooper, Claudia