QOL-49. Books4Brains: Piloting a Community Circle Book Club to Improve Self Expression

Abstract

BACKGROUND: Children with brain or spinal cord tumors often have limited interactions with their primary care providers who focus on developmentally appropriate recommendations, including the assessment of literacy. Additionally, we know that children with brain or spinal cord tumors have neurocognitive disruptions secondary to their diagnosis. Due to their disease process, these children are at high-risk for learning difficulties. We want to assist in building their self-confidence and acceptance. The objective was to provide a monthly virtual experience that utilized books, creative writing, and illustration to build a community centered on trust, shared experiences, and discussions of social emotional tools.

METHODS: We aimed to enroll 40 total participants diagnosed with a brain or spinal cord tumor who were followed by the Pediatric Neuro-Oncology Program at Riley Hospital for Children. These participants were divided amongst two groups: 1st-3rd grade and 6th-8th grade. After final enrollment, we had a total of 30 participants that received the following supplies: a copy of each months book, an audio recording of each book, and creative writing and craft supplies for each session.

RESULTS: We held three monthly hour-long virtual sessions for each group on Saturday mornings. Ten total children were available to meet consistently over the two groups. Positive feedback we received included, “we loved it,” “everyone felt included in book time,” and “[it] was so helpful that the books were read out loud and it was amazing to have the read along aspect with it for her visual impairment.” We even heard from one caregiver that “[they] noticed that she has some more tools in her toolbox when she is facing a difficult day.”

CONCLUSIONS: A pilot community book club is feasible through community partnerships. We plan to build on this experience by focusing on improving consistent attendance in future sessions.