Work

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

Year: 2025

Type: article

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.

Source: Pediatric Blood & Cancer

DOI: 10.1002/pbc.31755

Authors: Julia E. LaMotte, Jillian R. Bouck, Kristen Pogue, Lauren Fancher, Olivia Coughlin, Seethal A. Jacob

Institutions: Riley Hospital for Children, Indiana University School of Medicine, Indiana University Indianapolis

Language: English

Topic: Literacy and Educational Practices

Subfield: Education

Field: Social Sciences

Domain: Social Sciences

SDG: Good health and well-being

Open Access status: hybrid

Estimated APC paid: $4,640