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

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.

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.

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%).

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.