Identifying the pathways to increased death literacy: Building a conceptual causal model through a mixed-methods pragmatic ESC-DAGs approach.

BACKGROUND

Death literacy is viewed as a resource that enables individuals and communities to navigate the end of life. The Lancet Commission on the Value of Death has recommended its society-wide development. However, to be able to increase death literacy, insight is first needed into the factors that contribute to it.

OBJECTIVES

This study aims to develop an evidence-informed conceptual model of the causal relationships between death literacy, its theorized determinants, and other contributing factors.

DESIGN

We applied a mixed-methods design, consisting of a scoping review and expert panels.

METHODS

We conducted a scoping review following Arksey and O'Malley's framework and the PRISMA-Scr guidelines. We searched 5 databases (PubMed, Embase, Web of Science, Scopus, and PsycInfo) for articles reporting on (facets of) death literacy and making quantitative or qualitative causal inferences. Concurrently, we conducted 3 expert panels with academic and experiential experts to identify additional determinants not identified in the literature. Deductive thematic analysis was used. Finally, we built a causal model using the Evidence Synthesis for the Construction of Directed Acyclic Graphs (ESC-DAG) methodology.

RESULTS

We identified five death literacy determinants at the individual level (lived end-of-life experience, indirect exposure, prior knowledge, end-of-life related attitudes, and social connectedness), three at the environmental level (political context & policy, organizational culture, and external resources), and three contextual variables (cultural norms and sociodemographic and personal characteristics).

CONCLUSION

Combining quantitative and qualitative findings, we propose a conceptual causal model visualizing the different pathways to increased death literacy. The model shows the complexity behind death literacy development, highlighting the contribution of factors outside of the individual. It provides a foundation and guidance for future confirmatory research and the development of interventions to increase death literacy.