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

Aviya Lanis, Emilee Tu, Malki Peskin, Maryann Melendez, Gabriel Tarshish, Alisha Akinsete, Alicia Hoffman, Kathleen Kenney-Riley, Tamar Rubinstein, Dawn M. Wahezi

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Article number1979
JournalHealthcare (Switzerland)
Volume10
Issue number10
DOIs
StatePublished - Oct 2022

Keywords

  • narrative medicine
  • pediatrics
  • rheumatology

ASJC Scopus subject areas

  • Leadership and Management
  • Health Policy
  • Health Informatics
  • Health Information Management

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