Uncovering the causal mechanisms related to Death Literacy

10-2023 to 09-2026

A growing population of older people with serious illnesses who will need palliative & end-of-life (EoL) care presents a public health challenge. A key strategy is to develop community capacity for EoL care by increasing people’s knowledge and understanding of the death system and empowering them through death education. This ability has been termed “Death Literacy”, a set of knowledge and skills that enable people to gain access to, understand, and act upon EoL care options. However, Death Literacy is a novel concept. Research is needed to develop an evidence-based conceptual model of the causal relationships between Death Literacy, its determinants, and outcomes, and to test this model in practice. This proposal addresses these research gaps in 2 work plans (WP). WP1 conducts a scoping review of Death Literacy and related constructs that measure death-related attitudes, knowledge, and skills to build a preliminary causal model for Death Literacy using the ESC-DAG method. WP2 tests the causal model via a longitudinal population cohort study (N=2832) of Death Literacy among family caregivers, palliative care volunteers, and people with a recent loss experience. We measure Death Literacy using the Death Literacy Index at T0, T0+3months, and T0+6months using an online questionnaire survey