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

Grande G, Shield T, Bayliss K, Rowland C, Flynn J, Bee P, Hodkinson A, Panagioti M, Farquhar M, Harris D, Wearden A
Record ID 32018004225
Authors' objectives: Family carers are central in supporting patients nearing the end of life, but this often has an impact on their own mental health. Understanding what factors may affect carers’ mental health is important in developing strategies to maintain mental health, through 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 literature were conducted to address this.
Authors' results and conclusions: A total of 31 qualitative, 60 observational, 12 intervention and 3 mixed-methods studies were identified. Factors associated with carer mental health were as follows: (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 the causal direction between factors and mental health owing 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). 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 an understanding of causal relationships; (3) focus on factors that matter to carers rather than what is easily measured or manipulated; and (4) investigation of relationships, finance, ethnicity, race and culture.
Authors' methods: Findings are from Organisation for Economic Co-operation and Development (OECD) country English-language publications on adult carers and patients in the home setting and limited to these contexts. Literature heterogeneity (study focus, objectives, methods, variables, measures) hindered meta-synthesis.
Project Status: Completed
Year Published: 2022
URL for additional information: English
English language abstract: An English language summary is available
Publication Type: Full HTA
Country: England, United Kingdom
MeSH Terms
  • Caregiver Burden
  • Caregivers
  • Palliative Care
  • Mental Health
  • Terminal Care
  • Home Care Services
  • Family
Organisation Name: NIHR Health Services and Delivery Research programme
Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK
Contact Name: journals.library@nihr.ac.uk
Contact Email: journals.library@nihr.ac.uk
This is a bibliographic record of a published health technology assessment from a member of INAHTA or other HTA producer. No evaluation of the quality of this assessment has been made for the HTA database.