Storytelling of Young Adults with Chronic Rheumatologic Illnesses: A Pilot Study

Abstract

Background: Narrative medicine allows patients to reconstruct medical experiences through written portrayals of perspectives, building a mutual depiction of illness while creating a sense of belonging. This modality has not been previously studied in youth with rheumatologic illnesses, a population with high mental health burden and worse health-related quality of life. We aimed to assess the feasibility of a storytelling intervention in this patient population. Methods: This is a mixed-methods study of 14−21-year-olds with rheumatologic diseases followed in the Bronx, NY. Participants completed an hour-long creative writing session focused on patient experience with chronic disease. Pre- and post-questionnaires assessed patient-reported outcomes, and post-participation video interviews assessed personal experiences through the storytelling session. Results: Thirteen female patients were divided amongst four creative writing sessions. Twelve patients completed pre-study questionnaires and 10 completed post-study questionnaires, with 100% completion of the post-participation interviews. PedsQL surveys showed statistically significant improvement in physical health (p < 0.02), and there was no significant difference between pre- and post-scores for any other questionnaires. Interview thematic domains included writing motivation, prior writing experience, illness experience, relating to others, relationship with providers, and support. Conclusion: Creative writing is a feasible and acceptable intervention for youth with rheumatologic illnesses.

Keywords: narrative medicine; pediatrics; rheumatology.