Factors associated with psychological distress among end-of-life care volunteers: a systematic review of quantitative and qualitative evidence.

Abstract

Background: Volunteers are integral to end-of-life care, providing emotional, spiritual, and practical support. However, they often face emotionally demanding situations with limited training and supervision compared to professionals. Given the limited and fragmented literature on psychological distress experienced by end-of-life volunteers, this systematic review aimed to synthesise existing quantitative and qualitative evidence to identify factors associated with psychological distress.

Methods: We conducted a systematic literature review including qualitative and quantitative evidence. Five databases (MEDLINE, EMBASE, PsycINFO, Cochrane Database and Web of Science) were searched for original studies, complemented by citation and reference searches. Study quality was assessed using the Qualsyst tool. Quantitative findings were synthesised using an algorithm to evaluate evidence strength, and qualitative data were integrated through thematic meta-synthesis.

Results: Twenty-six studies (20 quantitative and 6 qualitative studies) met inclusion criteria. Quantitative research examined 49 volunteer-related, 18 service-related, and one volunteer-patient-interaction-related factor associated with anxiety, death anxiety, depression, burnout, and/or perceived stress. Moderate-strength evidence indicated that death anxiety was negatively associated with better health and well-being but unrelated to age, volunteer experience, or training. Furthermore, depression was negatively associated with volunteer training. Qualitative evidence was scarce, but highlighted additional patient-, interaction-, and service-level mechanisms.

Conclusion: This review identifies a small, methodologically diverse evidence base on factors associated with psychological distress in end-of-life care volunteers. Quantitative evidence suggests a potential protective association between training and depression, though substantial heterogeneity limits firm conclusions. Limited qualitative evidence revealed patient-, interaction- and service-level factors that are rarely captured quantitatively. Robust theory-guided longitudinal studies are needed to better understand distress and resilience in this under-researched group.