Dataset Information

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.

ABSTRACT:

Background

There 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.

Objective

The 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.

Design

A 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.

Results

From 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.

Conclusions

This 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.

SUBMITTER: Hodges V

PROVIDER: S-EPMC8689175 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ObjectiveTo identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.DesignQualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.SettingCommunity settings in London.Participants43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews.ResultsFamily carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity.ConclusionsThe following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients' general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals' authority to gain patients' agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia's previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.

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