Uncovering the causal mechanisms related to Death Literacy

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,
research is needed to examine Death Literacy’s determinants, mediating factors and envisioned
outcomes, and to test whether the didactic education of Death Literacy can substitute real-life
experiences in developing Death Literacy proactively. This proposal addresses these research gaps in
3 work plans (WP). WP1 conducts a scoping review of Death Literacy and related constructs that
measure death-related attitudes, knowledge and skills and an expert panel to build a preliminary
causal model for Death Literacy. WP2 tests the causal model via a longitudinal population cohort
study (N=1416) of Death Literacy among people with recent loss experiences, palliative care
volunteers, and the general public. WP3 tests the impact of the End-of-life Aid Skills for Everyone
course on Death Literacy. We measure Death Literacy using the Death Literacy Index among N=180
participants at T0, T0+3months and T0+6months and investigate participants’ experiences via
N=15-20 semi-structured interviews