Researching death literacy as a process: A qualitative approach at the intersections of philosophical practice, palliative care, and caring community development
Sandra Radinger, Patrick Schuchter, Stefanie V. Rieger, Klaus WegleitnerBackground
Contemporary research on death literacy (DL) is based on the insight that citizens develop capacities for end-of-life care through embodied experiences of caregiving. While this highlights a process dimension at the core of DL, research has primarily relied on outcome-oriented frameworks, such as the DL index, implemented globally. Recent studies reveal limitations in understanding how individuals and communities actually develop DL from experience. Process-oriented frameworks are needed to complement established approaches.
Objectives
This study aims to complement outcome-oriented DL research by conceptualizing and empirically exploring it through a process-oriented framework at the intersections of philosophical practice and public health. It seeks to understand how individuals and communities “make” DL from experience.
Design
The study includes a literature review of early and recent DL research, identifying gaps and neglected process dimensions. A preliminary theoretical framework is developed, integrating relational agency, philosophical practice, and public health perspectives. Empirical insights are drawn from qualitative studies exploring DL as a process in philosophical practice in palliative care and caring community contexts.
Methods
The study uses thematic synthesis methodology to capture DL as a process. Findings from four qualitative sub-studies are revisited: (1) interviews with 29 practitioners on end-of-life topics in philosophical practice; participatory action research studies with (2) a caring community initiative in Germany, (3) a mobile palliative care team in Austria; and (4) collaborative reflective inquiry involving philosophical practitioners and researchers.
Results
The findings show DL as a lifelong process shaped by ongoing experiences that challenge established knowledge and integrate acquired DL into daily life. Philosophical practice fosters movement and connection across abstract and concrete, individual and collective, emotional and conceptual dimensions of end-of-life realities. It also highlights social and political aspects of caregiving, making them visible and actionable.
Conclusion
This study demonstrates that process-oriented approaches to DL provide insights into dimensions of end-of-life care knowledge that evade measurement by the DL index. Philosophical practice emerges as a promising avenue for DL development, supporting critical engagement with existential, social, and political aspects of end-of-life education.