SynthesisBMJ open2021
Support needs of carers making proxy healthcare decisions for people with dementia: a systematic review based on the Noblit and Hare meta-ethnographic synthesis of qualitative studies.
Synthesis in BMJ open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
3 citing papers in PubMed, 5 citations in OpenAlex.
- Estimation of Montreal Cognitive Assessment Scores Using Caregiver Reports and Demographics: A Model Development Study.Journal of clinical medicine · 2026Article
- Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2025Article
- Preference of caregivers on residential care homes for older persons with versus without communication problems: a discrete choice experiment.BMC geriatrics · 2022Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThere are 50 million dementia sufferers worldwide. Decisions about healthcare often need to be made when the person with dementia lacks capacity to do so.Understanding the support needs of carers acting as proxy healthcare decision-makers will be vital in improving the decision-making process for people with dementia and addressing the holistic needs of carers.
objectiveThe objective of this study was to review the existing literature on the support needs of carers acting as proxy healthcare decision-makers for people with dementia.
designA qualitative systematic review protocol was published on PROSPERO. The Critical Appraisal Skills Programme checklist was used to appraise study quality. A meta-ethnographic synthesis was performed to develop third-order constructs. DATA SOURCES: A search was conducted using three online databases (MEDLINE, CINAHL and PsycINFO). ELIGIBILITY CRITERIA: Fifteen studies met the inclusion criteria: primary qualitative research involving carers of people with dementia who had been involved in making proxy healthcare decisions. DATA EXTRACTION AND SYNTHESIS: Two independent researchers conducted validity assessments for each paper selected for inclusion, and discrepancies were resolved by discussions with a third reviewer. Nvivo software was used and conceptual findings from study papers lead to interpretations of findings by the team.
resultsFrom the 15 papers included in the study, three main domains arose from the meta-ethnography; informational, practical and emotional. Informational support needs included information about dementia itself and the anticipated disease trajectory. Practical needs included continuity of care, person-centred care and the use of legal frameworks.Emotional support included recognising the guilt that healthcare decisions can provoke and the importance of providing guidance in an empathic manner.
conclusionsThis meta-ethnography highlights opportunities for healthcare professionals and policymakers to improve experiences of carers making proxy healthcare decisions for people with dementia. PROSPERO REGISTRATION NUMBER: CRD42020124485.
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Registered trials
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