Determinants of Family Caregiver Well-Being in Home-Based End-of-Life Care: A Qualitative Synthesis.

CONTEXT: Family caregivers are fundamental to enabling home-based end-of-life care, yet their well-being remains inadequately understood. While previous research has documented caregiver burden, a comprehensive understanding of the multidimensional factors shaping caregiver well-being across diverse contexts remains lacking.

OBJECTIVES

To synthesize qualitative evidence on the determinants of family caregiver well-being in home and community end-of-life care settings, developing an integrated conceptual understanding of facilitators and barriers across physical, psychological, social, and spiritual domains.

METHODS

Qualitative evidence synthesis using thematic synthesis methodology, following ENTREQ reporting guidelines. Seven databases (Embase, Scopus, CINAHL, PsycINFO, Web of Science, PubMed, Cochrane Library) were searched, yielding 7933 records. After removing 3319 duplicates and screening 4647 records, 669 studies were assessed for eligibility. Nineteen primary qualitative studies from 13 countries were included.

RESULTS

Determinants of caregiver well-being operated across four interconnected levels: personal factors (coping strategies, health literacy, prior experience), relational factors (relationship quality, family dynamics, social support), care-related factors (intensity, symptom management demands, night-time needs), and environmental or systemic factors (service access, healthcare provider interactions, financial resources, cultural norms). Key findings revealed that caregiver well-being was fundamentally shaped by the quality of professional relationships, the availability of comprehensive support services, and the cultural context of caregiving obligations.

CONCLUSION

Caregiver well-being in home-based end-of-life care is determined by complex interactions between individual, relational, and systemic factors. Healthcare services must move beyond patient-focused models to genuinely partner with caregivers, recognizing their dual role as providers of care and individuals with their own support needs. In practice, this means offering a named point of contact, assessing caregivers across personal, relational, care-related, and systemic domains, and tailoring support to cultural context and disease trajectory.