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Assessment of Death Literacy among Family Caregivers of Patients in Need of Palliative Care in Dezful, Iran: A Descriptive Cross-Sectional Study
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Sepideh sadat Khalaf Seyedi    , Aziz Kassani , Salman Barasteh , Hadis Ashrafizadeh * |
| Faculty of Nursing, Dezful University of Medical Sciences, Dezful, Iran , Ashrafizadeh.h1993@gmail.com |
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Abstract: (15 Views) |
Background & aim: Family caregivers of patients with palliative care needs face complex caregiving responsibilities, end-of-life decisions, and challenges in accessing formal and informal support. Death literacy refers to the knowledge and skills required to understand, access, and make informed decisions about death, dying, and end-of-life care. Given the limited evidence on death literacy among family caregivers in Iran, this study aimed to assess the overall score and dimensions of death literacy among family caregivers of patients with palliative care needs.
Methods: This descriptive cross-sectional study was conducted in 2025 with 300 family caregivers of patients with palliative care needs at Ganjavian Hospital and Imam Hassan Mojtaba Hospital in Dezful, Iran. Participants were recruited using convenience sampling. The patients under their care had a confirmed chronic or life-limiting condition and a Palliative Performance Scale score of ≤40%. Data were collected using a demographic and clinical information form and the 29-item Death Literacy Index. Raw scores were transformed to a standardized scale ranging from 0 to 10. Data were analyzed using frequencies, percentages, means, standard deviations, and 95% confidence intervals. Internal consistency was assessed using Cronbach's alpha (α).
Results: The participants had a mean age of 44.26 ± 11.11 years; 66.3% were female, 83.7% were married, and 50.3% had experienced the death of a family member. The mean standardized overall death literacy score was 3.83 ± 0.84 out of 10 (95% CI: 3.74–3.93). Among the four main dimensions, practical knowledge had the highest mean score (5.98 ± 1.65), whereas factual knowledge had the lowest (2.06 ± 1.65). Within the community knowledge dimension, the mean score for accessing help (4.40 ± 2.42) was higher than that for knowledge of community support groups (1.08 ± 1.14). Cronbach’s α for the DLI-29 was 0.69.
Conclusion: Family caregivers reported greater proficiency in practical caregiving and accessing informal support than in factual knowledge of formal services, legal and administrative processes, and organized community support. As the DLI-29 has no validated cut-off scores, the overall score should be interpreted as a continuous measure. These findings may inform educational priorities for family caregivers, particularly regarding palliative care services, referral pathways, accessible support resources, end-of-life procedures, and communication about death and bereavement. Further qualitative and interventional studies are needed to explore caregiver needs and evaluate culturally appropriate educational interventions in the Iranian context. |
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| Keywords: Death Literacy, Family Caregivers, Palliative Care, End-of-Life Care. |
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Full-Text [PDF 1379 kb]
(8 Downloads)
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Type of Study: Research |
Subject:
Special
Received: 2026/08/4 | Accepted: 2026/08/15 | Published: 2026/08/15
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