Understanding Complex Care Through Narrative Medicine: A Qualitative Study

Current training models do not adequately prepare pediatricians to care for children with medical complexity (CMC) as part of a team. Narrative medicine may foster mutual understanding between clinicians and families with colearning as a foundation for collaborative care. In this study, we implemented family-led interprofessional narrative medicine training and explored participants' perspectives in complex care.

We performed a qualitative study of narrative medicine training grounded in entrustable professional activities (EPAs) in complex care. We recruited clinicians and families who care for CMC to participate in a series of 6 workshops. Each workshop involved close reading of a text and discussion related to a clinical activity in complex care. Participants defined the EPA before and after each workshop. We performed thematic analysis of EPA definitions and workshop transcripts and synthesized findings into a conceptual model.

We recruited 3 interprofessional cohorts (35 total participants) with a mean participation rate of 80%. Each cohort included at least 2 family partners. We analyzed EPA definitions and transcripts from 18 workshops across all cohorts. Four themes emerged involving shifts in perspective about complex care: fragmented to holistic care, intractable to navigable complexity, transactional to relational connection, and caring in isolation to caring in community. Findings aligned with elements of patient- and family-centered care.

Clinician and family participants in narrative medicine training described changes in their perspectives on key clinical activities in complex care. Further research should explore colearning models for pediatricians and families that foster team-based patient- and family-centered care.