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
1,711 books were distributed to 386 patients (0-22 years), with an
average of 4 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 towards 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.