Factors associated with caregiver burden among family caregivers of patients on home-based palliative care: A systematic review

Abstract

Background:

Home hospice services are increasingly central to palliative care as more patients express preference for care or death at home. In these settings, the role of family caregivers becomes crucial. Despite its importance, research has often focussed on patient or feasibility. Few have examined home-based palliative care from a caregiver-centric standpoint.

Aim:

This review summarises factors associated with caregiver burden among family caregivers of home-based palliative patients.

Design:

A systematic review was conducted.

Data sources:

Systematic searches on PubMed, Scopus, CINAHL, PsycINFO from inception to December 2024 were done. Included studies examined (1) caregiver burden and (2) home-based palliative family caregivers. Grey literature, non-English publications and studies without primary data were excluded. Risk of bias was assessed with Joanna Briggs Institute tools.

Results:

Twenty-one studies examining 2554 family caregivers were included. Identified factors were categorised as patient-related, caregiver-related or others. Patient-related factors encompassed patients’ support needs, disease progression and intrapersonal factors. Caregiver-related factors consisted of psychological wellbeing, caregiving role and restrictions, and intrapersonal factors. Other factors include logistical, financial or care arrangement matters. Although our findings were generally aligned with literature, most studies were cross-sectional and conducted in similar cultural settings.

Conclusions:

Heterogeneity across studies highlighted uniqueness of patient-caregiver dyads on caregiver burden – for instance, family caregivers with multiple social roles may face heightened pressure from meeting patients’ care demands. Caregiver burden interventions should adopt multi-pronged approaches to ensure holistic support for patients and family caregivers, such as incorporating both medical and psychosocial support to enhance wellbeing of both parties.