Professional and Family Caregivers' Perceptions of Death Literacy in End-Of-Life Home Care: A Qualitative Study Publisher Pubmed

Summary: How do caregivers learn to support dying patients? Interviews with 12 Iranian caregivers identified knowledge, emotion, dignity and system barriers. #PalliativeCare #Caregiving

Rezaei M ; Khaleghparast S ; Akhlaghi E ; Keshmiri K ; Asgari M ; Rostami M ; Shahrestanaki S K
Source: BMJ open Published:2026

Abstract

BACKGROUND: The growing prevalence of chronic diseases and population ageing have increased the need for end-of-life care, particularly in home settings. Death literacy, encompassing knowledge, skills, attitudes and emotional preparedness related to death and dying, is recognised as an important component of quality end-of-life care. However, little is known about caregivers' perceptions of death literacy in the Iranian context. OBJECTIVE: To explore the perceptions of professional and family caregivers regarding death literacy in home-based end-of-life care. METHODS: This qualitative study used conventional content analysis based on Graneheim and Lundman's approach. Data were collected through semistructured interviews with 12 professional and family caregivers involved in end-of-life care for patients with advanced chronic diseases in Tehran, Iran. Participants were recruited using purposive and snowball sampling. Interviews were transcribed verbatim and analysed until data saturation was reached. RESULTS: Four core dimensions of death literacy emerged: (1) situational knowledge of dying, (2) experiential learning trajectory, (3) emotional reconciliation with death and (4) dignity-centred ethical practice. Two additional contextual domains (5) caregiver burden and relational challenges and (6) structural and organisational barriers described the relational and structural conditions in which death literacy was developed and enacted. Death literacy was described as a dynamic and culturally embedded process shaped by caregiving experiences, emotional engagement, informal learning, spirituality and interactions with families and the healthcare system. CONCLUSION: Death literacy develops through lived experience, emotional reflection and cultural influences rather than formal education alone, while relational and structural conditions shape how these capacities are developed and enacted in practice. Educational, psychological and organisational support may strengthen caregiver preparedness and improve end-of-life care. © Author(s) (or their employer(s)) 2026. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ Group.