ArticlePalliative care and social practice2026
Mapping death literacy in the East of England: A cross-sectional survey with qualitative insights to inform public health strategy.
Article in Palliative care and social practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: Death literacy can act as a public health asset that enables individuals and communities to navigate end-of-life care with confidence and competence. It encompasses knowledge, skills, experiential learning, and social action. In the United Kingdom, low levels of death literacy may hinder equitable care and contribute to avoidable harms. Aims: The study had three aims: (i) to assess death literacy in the East of England using the Death Literacy Index (DLI) to inform applied policy research; (ii) to explore sociodemographic and experiential factors associated with DLI scores; and (iii) to examine how various knowledge domains function as community assets or indicate areas in need of targeted intervention. Methods: We conducted a cross-sectional survey with adults aged 18 years and over across six areas in the East of England. The survey included sociodemographic questions, the 29-item DLI, and free-text responses. Quantitative analysis used ordinary least squares regression to identify associations between DLI scores and covariates. Qualitative data were analysed using a framework approach, integrating the Quintuple Aim for health care improvement and DLI domains, including an added Relational Knowledge domain to the death literacy framework dimension for the purposes of the analysis. Results: Of 1725 respondents, 1224 completed the survey. The mean DLI score was 5.8/10. Experiential Knowledge was the highest scoring DLI domain (mean = 7.3/10); Factual Knowledge scored lowest (mean = 4.7/10). End-of-life training and recent bereavement were strong predictors of higher DLI scores. Qualitative themes highlighted under-resourced support systems, need for improved coordination of statutory services, and importance of Relational and Community Knowledge. Conclusion: The DLI can act as a pragmatic tool for guiding civic action and informing public health strategy. Mobilising death literacy requires relational approaches, community engagement, and equity-focused commissioning. Recognising death literacy as both a public health asset and a civic capability can contribute to population health and support sustainable end-of-life care systems. Social capital and collective action are essential to mobilising death literacy at scale.
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