Professional and family caregivers’ perceptions of death literacy in end-of-life home care: a qualitative study
5 affiliations
- 1Department of Medical and Surgical Nursing, School of Nursing, Arak University of Medical Sciences, Arak, Iran
- 2Traditional and Complementary Medicine Research Center, Arak University of Medical Sciences, Arak, Iran, Arak University of Medical Sciences, Arak, Iran
- 3Cardiovascular Nursing Research Center, Rajaie Cardiovascular Medical and Research Center, Tehran, Iran
- 4Nursing and Midwifery Care Research Center, School of Nursing and Midwifery, Iran University of Medical Sciences, Tehran, Iran
- 5PhD in Nursing, Department of Community Health and Geriatric Nursing, Nursing and Midwifery Care Research Center, School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran
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.
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BibTeX
@article{rezaei2026professional,
title = {{Professional and family caregivers’ perceptions of death literacy in end-of-life home care: a qualitative study}},
author = {Masoud Rezaei and Shiva Khaleghparast and Elham Akhlaghi and Khodadad Keshmiri and Mina Asgari and Masoumeh Rostami and Sahar Keyvanloo Shahrestanaki},
journal = {BMJ Open},
year = {2026},
month = oct,
doi = {10.1136/bmjopen-2026-125736},
url = {https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-125736},
note = {CC BY-NC 4.0},
}
RIS
TY - JOUR
TI - Professional and family caregivers’ perceptions of death literacy in end-of-life home care: a qualitative study
AU - Masoud Rezaei
AU - Shiva Khaleghparast
AU - Elham Akhlaghi
AU - Khodadad Keshmiri
AU - Mina Asgari
AU - Masoumeh Rostami
AU - Sahar Keyvanloo Shahrestanaki
PY - 2026
DA - 2026/10/07
JO - BMJ Open
DO - 10.1136/bmjopen-2026-125736
UR - https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-125736
AB - 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.
SN - 2044-6055
SN - 2044-6055
ER -