Professional and family caregivers' perceptions of death literacy in end-of-life home care: a qualitative study.

Authors

Masoud Rezaei, Shiva Khaleghparast, Elham Akhlaghi, Khodadad Keshmiri, Mina Asgari, Masoumeh Rostami, Sahar Keyvanloo Shahrestanaki

Published in

BMJ open. Volume 16. Issue 10. Pages e125736. Oct 07, 2026. Epub Oct 07, 2026.

Abstract

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.
To explore the perceptions of professional and family caregivers regarding death literacy in home-based end-of-life care.
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.
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.
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.

PMID:
42843872
Bibliographic data and abstract were imported from PubMed on 08 Oct 2026.

Read full publication at:
Please sign in to see all details.

Stats

1-terrible, 9-excellent. How would you rate this publication? Sign in in to submit your rating.

Post a comment

You need to be signed in to post comments. You can sign in here.

Comments

There are no comments yet.