Understanding the potential factors impacting on carers’ mental health during end-of-life home care: a meta synthesis of the research literature

Gunn Grande, Tracey Shield, Kerin Bayliss, Christine Rowland, Jackie Flynn, Penny Bee, Alexander Hodkinson, Maria Panagioti, Morag Farquhar, Danielle Harris, Alison Wearden

Research output: Contribution to journalArticlepeer-review


Background: Family carers are central in supporting patients nearing endof-life (EOL), but this often impacts on their own mental health. Understanding what factors may affect carers’ mental health is important in developing strategies to maintain mental health; by identifying carers at risk who may need added monitoring and support or developing interventions to change modifiable factors. Reviews of the qualitative, observational and intervention literatures were conducted to address this.
Aim of the paper: (a) to review trials of carer interventions to improve our understanding of factors related to carer mental health identified in earlier qualitative and observational reviews; (b) to synthesise the evidence from our qualitative, observational and intervention reviews on factors related to carers’ mental health during EOL caregiving.
Method: Searches of Medline, CINAHL, PsychINFO, Social Sciences Citation Index, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL) and Database of Abstracts of Reviews of Effects (DARE) 01.01.2009-24.11.2019. Studies included adult informal/family carers for adult patients at EOL cared for at home, considering any factor related to carer mental health (anxiety, depression, distress, quality of life) pre-bereavement. Quality appraisal used CASP checklists and Newcastle-Ottawa Scale. Qualitative review analysis developed themes that then provided a framework for quantitative review analyses. Findings from all three reviews were mapped into a single framework, informed by a carer Review Advisory Panel.
Results: 31 qualitative, 60 observational, 12 intervention and 3 mixed-methods studies were identified. Factors associated with carer mental health were: (1) patient condition, particularly psychological symptoms and quality of life; (2) impact of caring responsibilities, particularly life changes, workload and carer burden; (3) relationships, particularly with the patient; (4) finances, whether sufficient or not; (5) internal processes, particularly self-efficacy; (6) support, particularly adequacy and quality of support; (7) contextual factors, particularly age and gender. The three types of literature were reflected in most themes and yielded similar or complementary results, adding validity to findings. Only observational studies investigated contextual factors. Intervention studies focused on modifiable factors, but added little evidence on causal direction between factors and mental health due to design and analysis limitations. Relationships and finance received little attention overall. There was limited research into ethnicity, race or culture. Quantitative research missed some factors highlighted by carers in qualitative studies (e.g. quality aspects of formal support), and focused more on ‘self-management’ within internal processes ( emphasised less by carers).
Limitations: findings are from OECD country English language publications on adult carers and patients in the home setting and limited to these contexts. Literature hetrogeneity (study focus, objectives, methods, variables, measures) hindered meta-synthesis.
Conclusions: Future work requires broad stakeholder engagement to address the diverse range of factors associated with carers’ mental health. Project findings will be disseminated accordingly. Future research needs more: (1) work on defining and measuring concepts; (2) longitudinal design, repeated measurement and path analysis, to move beyond evidence of association towards understanding of causal relationships; (3) focus on factors that matter to carers rather than what is easily measured or manipulated; (4) investigation of relationships, finance, ethnicity, race and culture.
Original languageEnglish
JournalPublic Health Research
Publication statusAccepted/In press - 6 Jun 2022


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