P2.062: Creating a Research-Informed Children’s Book to Help Pediatric Patients Navigate Progressive Vision Loss

Background: 3% of children in the United States have low vision– defined as visual impairment that is not correctable by surgery or refraction. These children often become legally blind and experience isolation, diminished autonomy, and ambiguity surrounding their futures. While existing research documents their experiences extensively, the findings are largely published in research journals, making them inaccessible to young patients who would benefit from hearing these stories of peers and those who came before them. In this study, we interviewed young adults who have successfully coped with and navigated vision loss. We then drew from their experiences to write a research-informed, fictional children’s book for patients receiving a diagnosis of low vision today.

Project Description: 12 young adults (18-35 years) with legal blindness due to pediatric-onset macular degeneration were interviewed about childhood, the moment of their diagnosis, events that surprised them, social dynamics, career outcomes, and advice for children facing similar diagnoses. Two researchers independently coded transcripts using standard qualitative methods and emergent codes/themes were identified. The themes were then fictionalized into a story about sixth-grader, Asha, who develops childhood vision loss. Her narrative arc reflects interview themes and our book, intended for 8-12-year-olds, uses 16-point font and high contrast illustrations to follow Asha’s yearlong journey from diagnosis onward.

Discussion: 75% (n=9) of participants were childhood athletes and shared innovative ways they adapted this passion after vision loss. As adults, their careers included aerospace engineering, medicine, professional hockey, and more. 50% (n=6) of participants highlighted the importance of camps where they could meet other youth and 92% (n=11) emphasized adopting technology early. Family often saw potential that interviewees could not see in themselves, while friends helped maintain normalcy. Unforeseen stressors included the inability to drive (58%, n=7), the long diagnostic odyssey (100%, n=21), accusations regarding lying about their vision (67%, n=8), and self-advocating to unaware teachers/peers (75%, n=9). 100% (n=21) of participants reported declining resources during childhood to try and hide their condition; however, in adulthood, 83% (n=10) believed that their vision was a strength that made them unique, compassionate, and resilient. In this book, our protagonist's story portrays these themes. The plot follows Asha's navigation of school, friendships, accommodations, special education, camps for youth with low vision, the lacrosse team, and learning to self-advocate. Attached book excerpts illustrate how scientific research can be creatively and accessibly translated for pediatric patients. The book will be piloted in our hospital and subsequently published.

Conclusion: Existing research into childhood blindness focuses on enhancing clinician understanding of patient experiences. However, our study presents a novel approach to transform qualitative results into child-friendly formats to help young patients better understand their disease and feel represented in stories they read. 100% (n=12) of interviewees mentioned needing such resources during childhood.