Quality of Life in Six Words: An Arts- and Narrative-Based Approach for Centering Patient Voices in a Health Care Education Session.

Abstract

Abstract: A participatory arts- and narrative-based approach for knowledge translation was utilized in a rare disease educational session at a medical conference, combining stakeholder storytelling with the presentation of relevant empirical evidence and frameworks to deepen clinicians' understanding of patient and caregiver quality of life. Before the conference, patient/caregiver perspectives were solicited via a six-word story creative writing prompt (n = 94); during the session, clinicians utilized these stories to cocreate three visual pieces representing the complexity of patient and caregiver experiences and symbolizing the common threads that appear when many "rare" experiences come together. Session attendees reported highly positive feedback, with most clinicians reporting that the knowledge gained from the session would result in a change in their clinical practice. We propose arts- and narrative-based approaches hold great promise for centering patient voices in health care education.