Patient and care provider inclusion in the development of an educational graphic novel for heart transplanted teenagers.

Abstract

Teenagers experience high rates of rejection and organ failure after heart transplantation due to non-adherence to medications, poor transition into adult care, and difficulties communicating with adults including healthcare providers. This project aimed to creatively bridge this gap-including teenage patients, their parents, and healthcare providers in the development of a new resource meant to motivate teenage heart-transplant-patients to take interest and ownership of their long-term health. Four teenage heart-transplanted patients, four parents, and three healthcare providers provided insight into relevant content for an educational resource through semi-standardized questionnaires and interviews. Their input guided the style and substance of the resource developed under the supervision of Fine Arts professors and the pediatric heart transplant team. Parents and healthcare providers were concerned about teenagers' health choices and lack of perspective while patients were more bothered by parental nagging and being careful about infections than worrying about post-transplant risks. The resource that was developed therefore used subtlety within a narrative medium: a graphic novel that involved mutant worms, secret plots, and daring escapes, to address identified medical concerns and encouragements without triggering teenage resistance to instruction. The discrepancies between the priorities of healthcare providers, parents, and teenage heart-transplant-patients illustrate the significance of basing resource-development on input from the target population. We developed the first graphic novel written for teenage heart-transplant-patients with patient input and interdisciplinary cooperation, using the subtlety of a narrative medium as a model for integrating medical content within an appealing, motivational, patient-centered, and age-appropriate resource.