P3B234: Storytelling: Collaborating with Patients and Parents to Create a Children's Book Representative of Their Experiences

Background: Children experiencing disease or disability are often overlooked and rarely depicted authentically in children’s books or media. Children’s literature can supplement the care of children living with chronic illness and has been shown to promote their mental health and facilitate coping during hospital stays. There is an unmet need for resources which accurately convey the experiences of children in these circumstances, which might otherwise allow them to explore what may lie ahead, normalize their experiences, and provide a sense of comfort during times of stress and uncertainty.

Project Description: To explore pediatric patient and family perceptions of living with a specific chronic illness, we selected type 1 diabetes given its limited frequency in rural New England with the goal of collaboratively creating a children’s book with stakeholders in the local community. Qualitative study measures were employed to first hold informal discussions with multidisciplinary clinicians within the Children’s Hospital at Dartmouth Hitchcock between June – October 2021 to identify potential participants and resource gaps. We then conducted comprehensive individual interviews with patients and parents between August 2021 – August 2022 to gain insight of the experiences of those with type 1 diabetes (T1D) in rural areas of Vermont, New Hampshire, and Maine. Using thematic analysis, we identified similarities in illness experience, gaps in the current chronic illness resources available, and the preferred content of a potential resource. Feedback sessions were then conducted to further discuss children’s book development, plot, and illustrations.

Discussion: Ten stakeholders (3 healthcare providers, 4 patients with type 1 diabetes, and 3 parents) participated in discussions and in-depth interviews (Table 1). Stakeholders validated the need for normalization of the experiences of those living with chronic illness in the pediatric setting and identified areas of focus for a novel resource such as a children’s book (Table 2). These included commonly asked questions by peers and trusted adults, such as “does it hurt when I test my sugar, if my insulin pump is a phone, [and] what can your friends or parents do to help” (Patient 2). The mental toll of living with a chronic illness, daily illness management, coping strategies, and support were also elicited, with some comments including “my friends were really helpful” (Patient 4) with others noting “my classmates were not really [supportive]” (Patient 1). Lastly, some participants urged, “shouldn’t [diabetes] be represented in books that everybody is reading?” (Parent 2).

Conclusion: Pediatric patients with T1D and their families in rural New England desire additional resources which might normalize their experiences with chronic illness, in particular their thoughts, goals, and struggles with their condition. Pediatric patient and parent participants have approved and found satisfaction in the children’s book storyline to address the aforementioned factors, created with a collaborative, stakeholder-centered approach.