Understanding and addressing factors affecting carers' mental health during end-of-life caregiving: synopsis of meta synthesis of literature and stakeholder collaboration.

Abstract

Background: Family carers provide crucial support to patients nearing end of life. This can affect carers' own mental health negatively. It is important to understand what factors may affect carers' mental health and convey this information to stakeholders who can effect change. We conducted reviews of the qualitative, observational and intervention carer literature and worked with carer advisors and other stakeholders to make findings useful and accessible.

Aim of the synopsis: To provide a synopsis of (1) project methods, (2) findings and implications from the evidence syntheses, (3) outcomes of our carer Review Advisory Panel collaboration and (4) feedback from wider stakeholder consultation.

Method: Searches of MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycInfo, Social Sciences Citation Index, EMBASE, Cochrane Central Register of Controlled Trials and Database of Abstracts of Reviews of Effects 1 January 2009-24 November 2019. Studies included adult family carers for adult patients at the end of life cared for at home, considering any factor related to carer mental health. Collaboration with the Review Advisory Panel over nine meetings helped map review findings into a framework, shape their presentation and create Review Advisory Panel recommendations. Four workshops, two discussion groups and a survey with stakeholders (carers/patients, practitioners and policy-makers/commissioners) informed output formats and suggested actions.

Results: Thirty-one qualitative, 60 observational, 12 intervention and 3 mixed-methods studies were identified. Factors associated with carer mental health were: (1) patient condition, mainly psychological symptoms and quality of life; (2) impact of caring responsibilities, mainly life changes, workload and carer burden; (3) relationships, particularly carer-patient; (4) finances, whether sufficient; (5) internal processes, particularly self-efficacy; (6) support, particularly adequacy and quality; and (7) contextual factors, mainly age and gender. The Review Advisory Panel comprised five carers and a carer chair. They created recommendations for supporting carers based on syntheses findings, including: awareness raising for carers and practitioners; a road map to help carers navigate caregiving; bespoke carer support through carer assessment; assessment of patient's actual rather than 'managed' needs; co-ordinated care through a single contact point; addressing basic practical needs. Other key recommendations included holistic, co-ordinated patient care and cover of basic carer financial needs. Thirty-six stakeholders participated in workshops and discussion groups and 43 in the survey, to review synthesis findings and Review Advisory Panel recommendations. Stakeholders generally valued the qualitative evidence and recommendations over the quantitative evidence, although all outputs resonated with them. There was little consensus regarding where responsibility for carers may lie, pointing to a need for bespoke carer support roles. Some issues may require systemic-level changes.

Limitations: Findings are from Organisation for Economic Co-operation and Development country English-language publications on adult carers and patients within home care, and carer advisors and stakeholders were based in the United Kingdom, which may limit the transferability of findings.

Conclusions: Findings provide some clear indicators of factors affecting carer mental health and recommendations. Improvements may require investment in bespoke carer support roles (e.g. carer support nurses) and systemic change (e.g. improving carer identification and assessment, and financial security). Given the enormous contribution carers make to health and social care, they deserve such investment to support them in their work.

Funding: This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number 18/01/01.