How and what do laypeople learn about endof-life care using narrative? A case study in educational research

Background: Studies have reported positive impacts from community engagement in end-of-life (EoL) care. However, few studies have used a narrative for health promotion. Thus, we examined how and what lay participants learned through an EoL care education program using narrative. Methods: A case study in educational research was implemented through qualitative process evaluation. The program was conducted in a hospital in Japan. Participants living in the surrounding community were recruited by convenience sampling. We conducted 90-minute focus groups with participants at two and eight months after the completion of the program. All data were audio-recorded, transcribed verbatim, and analysed using thematic analysis. Result: We identified five themes. First, participants reconstructed the concept of EoL care using their own experience and new knowledge gained in the program. Second, the stories in the program stimulated participants to recall their feelings and emotions, which caused catharsis effects. Third, the stories evoked other perspectives through metacognition. Fourth, their experience inspired altruism towards patients and their families at the EoL. Fifth, they reflected on their own deaths as an extension of their relationship with others. This learning process was consistent with Kolb’s experiential learning. Their experience enabled lay participants to overcome the existential terror of death while using the narrative mode of thinking to perceive their relationship with others as a symbolic identity. Conclusion: The educational program using narrative deepened lay participants’ understanding of the concept of EoL care. Such programs have the potential to enhance community engagement in EoL care.