Protocol

To accommodate the increasing need for palliative care worldwide, the Lancet Commission on the Value of Death recommended Death Literacy be developed for all. Death Literacy is proposed to be a resource that empowers individuals and communities and allows them to exercise more control over their own end-of-life care and that of those close to them. However, due to its novel nature, the concept needs further scientific underpinning. It remains to be empirically shown (1) what factors influence Death Literacy and (2) what outcomes are associated and causally connected to it. This study aims to develop an evidence-based conceptual model of the causal relationships between Death Literacy, its theorized determinants, mediating factors, and outcomes. To this end, we employed qualitative mixed methods, conducting a scoping literature review combined with expert panels. The scoping review was executed following Arksey and O’Malley’s framework and the PRISMA-Scr guidelines. 5 databases (PubMed, Embase, Web of Science, Scopus, and PsycInfo) were searched for articles investigating or discussing causal relationships where critical literacy applied to end-of-life outcomes or experiences functions as a component of the causal path. Our search resulted in 10054 articles (5409 after duplicate removal). 277 articles were retained for full text screening. Included articles will be searched for relevant variables, divided into categories (exposure, outcome, mediator, or modifier). Additionally, we conducted expert panels with international academic (n=10) and local experts by experience (n=10). Inductive, reflexive thematic analysis was used to identify additional variables. Based on this input, we will build a causal model using the Evidence Synthesis for the Construction of Directed Acyclic Graphs (ESC-DAGs) methodology. Variables identified in the scoping review and expert panels will be used to draw an integrated DAG/causal model. In a next stage, this model will be operationalized and tested quantitatively.