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

Abstract

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.

Last Aid Course—The Slovenian Experience

“…“Cultural interventions” such as Death Cafés [ 40 ], and intensified promotion of palliative care by healthcare providers and education about death and dying, as well as the creation of truly compassionate communities [ 41 ], are all examples of strategies that aim to jointly encourage individuals and communities to reflect on death and respond to end-of-life issues. Another promising example of good practice is the Japanese educational program using stories as a primary learning tool, which showed that it is possible to deepen understanding among the lay public of the concept of end-of-life care through a narrative [ 9 ]. It is important that palliative care education initiatives be adapted to the cultural context of the environment where they are delivered, as highlighted by, e.g., Shen et al [ 42 ], Isaacson [ 43 ], Hayes et al [ 11 ], or in the Australian context by McGrath and Holewa [ 44 ].…”

“…Among the general public, there is substantial misunderstanding of and lack of awareness about palliative care [ 8 ], and lay people are frequently unaware of its fundamental principles. Consequently, palliative care is underused [ 9 , 10 ]. A terminal or life-threatening illness is an illness or condition which cannot be cured and is likely to lead to someone’s death [ 9 ].…”

“…Consequently, palliative care is underused [ 9 , 10 ]. A terminal or life-threatening illness is an illness or condition which cannot be cured and is likely to lead to someone’s death [ 9 ]. End-of-life care is defined as support for people who are in the last months or years of their life [ 11 , 12 ].…”