Health and Social Care Delivery Research (Nov 2023)
What factors are associated with informal carers’ psychological morbidity during end-of-life home care? A systematic review and thematic synthesis of observational quantitative studies
Abstract
Background Family carers are central in supporting patients nearing end of life. As a consequence, they often suffer detrimental impacts on their own mental health. Understanding what factors may affect carers’ mental health is important in developing strategies to maintain their psychological well-being during caregiving. Aim To conduct a systematic review and thematic evidence synthesis of factors related to carers’ mental health during end-of-life caregiving. Method Searches of MEDLINE, CINAHL, PsychINFO, 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. We included observational quantitative studies focusing on adult informal/family carers for adult patients at end of life cared for at home considering any factor related to carer mental health (anxiety, depression, distress and quality of life) pre-bereavement. Newcastle–Ottawa Quality Assessment Scale was used. Thematic analysis with box score presentation, and meta-analysis were done where data permitted. Results Findings from 63 included studies underpinned seven emergent themes. Patient condition (31 studies): worse patient psychological symptoms and quality of life were generally associated with worse carer mental health. Patient depression was associated with higher depression in carers (standardised mean difference = 0.59, 95% confidence interval 0.32 to 0.87, I2 = 77%). Patients’ other symptoms and functional impairment may relate to carer mental health, but findings were unclear. Impact of caring responsibilities (14 studies): impact on carers’ lives, task difficulty and general burden had clear associations with worse carer mental health. Relationships (8 studies): family dynamics and the quality of the carer–patient relationship may be important for carer mental health and are worthy of further investigation. Finance (6 studies): insufficient resources may relate to carers’ mental health and warrant further study. Carers’ psychological processes (13 studies): self-efficacy and preparedness were related to better mental health. However, findings regarding coping strategies were mixed. Support (18 studies): informal support given by family and friends may relate to better carer mental health, but evidence on formal support is limited. Having unmet needs was related to worse mental health, while satisfaction with care was related to better mental health. Contextual factors (16 studies): older age was generally associated with better carer mental health and being female was associated with worse mental health. Limitations Studies were mainly cross-sectional (56) rather than longitudinal (7) which raises questions about the likely causal direction of relationships. One-third of studies had samples < 100, so many had limited statistical power to identify existing relationships. Conclusions and future work Future work must adopt a comprehensive approach to improving carers’ mental health because factors relating to carer mental health cover a broad spectrum. The literature on this topic is diverse and difficult to summarise, and the field would benefit from a clearer direction of enquiry guided by explanatory models. Future research should (1) further investigate quality of relationships and finances; (2) better define factors under investigation; (3) establish, through quantitative causal analyses, why factors might relate to mental health; and (4) utilise longitudinal designs more to aid understanding of likely causal direction of associations. Study registration This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme HSDR 18/01/01 and is published in full in Health and Social Care Delivery Research. See the NIHR Funding and Awards website for further award information. Plain language summary Background Family carers are central in supporting patients nearing end of life. However, their own mental health may often suffer as a result. It is important to understand what makes carers’ mental health better or worse, to support them appropriately and help them stay in good health. Aim To synthesise what is known about what can affect carers’ mental health during end-of-life caregiving. Method We identified research literature (1 January 2009–24 November 2019) that looked at factors that may make carers’ mental health better or worse when supporting someone nearing end of life. We focused on adult carers of adult patients cared for at home. Researchers worked with the help of a carer Review Advisory Panel to group similar factors into themes. This report presents research that used numerical measurements (for instance, surveys) to investigate factors related to carers’ mental health. Results Findings from 63 studies were grouped into seven themes: (1) How the patient was: worse patient mental health and quality of life related to worse carer mental health. (2) How much caregiving affected carers’ lives: greater impact, burden and feeling tasks were difficult related to worse mental health. (3) Relationships: good relationships between family members and between carer and patient seemed important for carer mental health. (4) Finance: having insufficient resources may affect carers’ mental health. (5) Carers’ internal processes (carers’ thoughts and feelings): feeling confident and prepared for caregiving related to better mental health. (6) Support: carers’ mental health seemed related to support given by family and friends and to getting sufficient, satisfactory support from formal services. (7) Background factors: older carers seemed generally to have better mental health, and female carers worse mental health overall. Conclusions Factors that may affect carers’ mental health are many and varied. We therefore need a broad strategy to help carers stay in good mental health during caregiving.
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