ArticleHealth expectations : an international journal of public participation in health care and health policy2022
Rapid development of a COVID-19 care planning decision-aid for family carers of people living with dementia.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.
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Who cites it
5 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Co-design development of a decision guide on eating and drinking for people with severe dementia during acute hospital admissions.Health expectations : an international journal of public participation in health care and health policy · 2023Pooled it
- Co-Design of a Facilitated Self-Management Toolkit for People With Parkinson's Disease.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Rural health dialogue for the sustainability of help-seeking behaviors among older patients: grounded theory approach.BMC geriatrics · 2023Article
- Rapid development of a COVID-19 care planning decision-aid for family carers of people living with dementia.Health expectations : an international journal of public participation in health care and health policy · 2022Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
introductionCOVID-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.
objectivesTo 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.
methodsSemi-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.
resultsThe 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.
conclusionsCombining 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. PATIENT OR PUBLIC CONTRIBUTION: 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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