Melanie F J Diggle, Therese Johansson, Joanna M Davies, Kate Heaps, Katherine E Sleeman
This study identified gaps in UK death literacy with findings highlighting that death literacy is shaped mostly by personal and professional experience. Public health approaches that promote community learning, and clearer support pathways, may help address these gaps. Further work is needed to identify effective ways to strengthen death literacy at a population level.
BACKGROUND: Death literacy is the knowledge and skills that enable people to navigate and act on end-of-life issues, and underpins public health approaches to palliative and end-of-life care. Nationally representative evidence on factors associated with death literacy remains limited.
OBJECTIVES: To measure death literacy in adults and examine associations with sociodemographic characteristics and experiential exposure.
DESIGN AND METHODS: A cross-sectional online survey of a nationally representative United Kingdom (UK) sample (n = 2,106), completing the Death Literacy Index-Revised (DLI-R) and providing sociodemographic and contextual information. Weighted data were analysed using descriptive statistics and linear regression.
RESULTS: The mean DLI-R score was 6.01 (SD = 1.85). The Experiential Knowledge scale had the highest score (7.15, SD = 1.98), while Accessing Help had the lowest (5.16, SD = 2.64). Compared to no experiential exposure, personal/family exposure (B = 0.69, 95% CI 0.53, 0.85) and professional/volunteer exposure (B = 1.38, 95% CI 1.14, 1.63) were significantly associated with higher DLI-R scores. Adults aged 25-34 scored higher than those aged 65+ (B = 0.45, 95% CI 0.18, 0.71). Compared to the married group, the 'single and never married' group (B = -0.61, 95% CI -0.82, -0.41) had lower DLI-R scores. There were ethnic differences in scores, with Black/Black British people found to have higher death literacy compared to the reference group of White/White British people (B = 0.71, 95% CI 0.35, 1.08).
CONCLUSION: This study identified gaps in UK death literacy with findings highlighting that death literacy is shaped mostly by personal and professional experience. Public health approaches that promote community learning, and clearer support pathways, may help address these gaps. Further work is needed to identify effective ways to strengthen death literacy at a population level.