Sickle Cell Story Club: Implementation of a Clinic-Based Literacy Promotion Program.

Abstract

Background: Literacy promotion is central to child development, particularly for children with sickle cell disease (SCD) given patterns of neurocognitive involvement. Book ownership programs offer a unique strategy within pediatric healthcare. This study aimed to evaluate the implementation of a literacy promotion program within an outpatient pediatric subspecialty clinic.

Procedure: The Sickle Cell Story Club (SCSC) distributed books from March 2021 to December 2023 in an outpatient comprehensive SCD clinic. Families completed home literacy and feedback surveys when receiving a book. Books were provided regardless of data completion and could be refused at any time.

Results: A total of 1711 books were distributed to 386 patients (0-22 years), with an average of four books per patient (range = 1-12 books). Most books were given by psychosocial team members (94.87%). Caregivers of young children (0-5 years) read more (68.8%) as a result of the SCSC, and all found the program to be useful for reading development. Caregivers of school-aged children (6-12 years) observed a positive impact of the SCSC on their child's reading confidence (86.8%). Caregivers of school children and adolescents (13+ years) agreed that the SCSC increased the frequency of reading behaviors as well as enjoyment toward reading. Nearly all families were likely to recommend the SCSC (90.1%).

Conclusion: Given the neurocognitive impact and known disparities in educational resources, patients with SCD are at a unique risk for differences in learning. Literacy promotion is imperative to child development and a chronic disease subspecialty clinic offers a unique opportunity to address this domain.