More Than Words: Co-designing a Pediatric Palliative Care Comic with Patients and Caregivers: An Abstract from Akron Children’s Hospital Resident and Fellow Academic Day

Children who would benefit from palliative care (PC) may lack access to it. One barrier is misunderstandings about what PC is and is not. Unpublished data suggest that many adolescent/young adult (AYA) patients can neither define PC nor differentiate it from hospice. This knowledge gap extends to caregivers of pediatric PC patients as well as hospice and healthcare providers. Graphic medicine combines pictures with text to increase understanding. Comics have been developed and tested in pediatric healthcare to help children understand chronic conditions and their parents’ healthcare issues. Kitta and colleagues developed a comic-based educational booklet explaining PC to adult hematology-oncology patients admitted to a PC inpatient floor in Vienna, Austria. This study’s purpose is to replicate the study by Kitta and colleagues in a US pediatric population. The objective of this study is to develop a comic book for clinical use explaining pediatric PC to AYAs and/or caregivers of any child considering or referred to PC. We adapted Kitta and colleagues’ English language structured interview guide and made minor modifications for pediatrics. Participants were 10–26-year-old PC patients and caregivers who completed individual interviews to elicit participants’ understanding of PC and what enrollment in PC means. Data was deidentified, and transcripts were verified for accuracy and coded by three authors (TR, HF, DG). Utilizing a deductive thematic analytic framework, the initial codebook themes were created. Saturation was determined using Guest and colleagues’ method. Data was provided to the University of Akron’s School of Art Designx9 team to create a draft comic book. In the second interview, participants will be completing a cognitive interview on their experience of reviewing the comic book and will provide feedback to be incorporated in a subsequent version for clinical use. COREQ guidelines were followed in reporting this study. Thirty-two participants completed an initial interview (AYA: n=12, 67% female; caregiver: n=20, 70% female). Median (range) AYA was 15.7 (12-25) years. AYA data yielded 27 themes; caregiver data yielded 43 themes. Themes and exemplar quotations are in Table 1. Sample image spread included in Figure 1. Participants are completing the second interview. The study team is consulting Designx9 on text and graphic updates, with feedback provided by participants. Overall, study participants are providing positive feedback on the draft comic book as well as constructive feedback for the final version. We present the progress to date on a comic book explaining PC to AYAs and PC patient caregivers using a person-centered design process. The findings confirm a generally poor understanding of PC before their first encounter. Initial results indicate that participants are responding positively to draft and indicate that the comic book would be beneficial before meeting palliative care. An educational comic book explaining PC is one means to minimize misunderstanding, leading to improved patient and caregiver engagement with PC providers.