How does home-based palliative care impact informal carers? A scoping review

Context Informal carers can provide a wealth of support to patients, which may enable them to be cared for and die at home. Whilst caring for someone with a life-limiting illness can be rewarding, the time and effort required can cause burden and poorer quality of life. Research is needed to understand the various and complex impacts of home-based palliative care services on carers. Objectives To identify the existing evidence on the impacts of home-based palliative care on carers of people with a life-limiting illness. Methods Searches were conducted in MEDLINE (via Ovid), Scopus, CINAHL, the Cochrane Library and grey literature sources for articles published between August 2012 and March 2025, in line with the Joanna Briggs Institute (JBI) methodological guidance (Peters MDJ, Marnie C, Tricco AC, et al. Updated methodological guidance for the conduct of scoping reviews. JBI Evidence Synthesis. 2020;18(10)). Titles and abstracts were screened against an inclusion and exclusion criterion; articles were included if they involved adult informal carers of adults with life-limiting conditions who received home-based palliative care services. Data were extracted using a charting table and thematically analysed. Results were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) (Tricco AC, Lillie E, Zarin W, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. 2018;169(7):467-73). Results 173 papers were included in the review. Analysis generated seven interrelated themes; 1) sense of security, 2) carer involvement as a team member, 3) preservation of normality, 4) confidence to continue caregiving, 5) health-related quality of life, 6) financial impacts of home-based palliative care on carers, 7) satisfaction. Outcomes were influenced by; the relationship with the healthcare professional, quality of services and individual preferences. Experiences of home-based palliative care can impact bereavement outcomes and financial hardship. Conclusion Home-based care has significant implications for carers. Further work is warranted to standardise methods to enable comparisons between services and aggregate study findings.