Background/Purpose: While juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic disease, there is a lack of available child-friendly patient education materials. An illustrated storybook on JIA was created by medical students to address this gap. The present study evaluated the storybook for its comprehensibility, appropriateness and acceptability from the perspectives of children with JIA and their parents.

Methods: English-speaking children, aged 4–10 years, diagnosed with JIA in the past 36 months were recruited from a pediatric rheumatology clinic at a tertiary academic centre for this qualitative study. All children met the ILAR classification criteria for JIA. Children and parents were observed reading the storybook aloud and then interviewed using a semi-structured interview guide. Data collection tools were developed through an iterative process involving feedback from external experts and were further refined through piloting. The storybook reading and interviews were audio-recorded and transcribed. The transcripts were then analyzed using conventional content analysis within a qualitative data software, NVivo 11.

Results: Twelve child-parent dyads participated. The average age of children was 6 years and 5 months (4 years 2 months–10 years) and the average time from diagnosis was 19 months (3–32 months). Analysis showed that children comprehended the content of the storybook and understood the emotions portrayed by the story’s main characters. Children and parents reported that the story appropriately mirrored their own experiences of JIA. The reading level and book length were deemed acceptable to children aged 5–10, with varying degrees of assistance. Minor revisions were suggested regarding background illustrations, word choices and font.

Three key elements regarding patient education materials were identified: (1) Children were most intrigued by anatomical illustrations and interpreted them according to their own experiences. (2) Non-medical details about the story’s main characters helped children relate to the storybook on a personal level. (3) Parents desired not only accurate medical information but also a sense of relief and hope.

Conclusion: The storybook on JIA was considered comprehensible, appropriate and acceptable. The findings informed minor modifications to the present storybook and suggest important elements to consider when creating future pediatric patient education materials.

ACR Meeting Abstracts - https://acrabstracts.org/abstract/evaluating-an-illustrated-storybook-for-children-with-juvenile-idiopathic-arthritis/