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Sickle Cell Story Club: Implementation of a Clinic-Based Literacy Promotion Program
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  • Julia LaMotte,
  • Jillian R. Bouck,
  • Kristen Pogue,
  • Lauren Fancher,
  • Olivia Coughlin,
  • Seethal Jacob
Julia LaMotte
Indiana University School of Medicine

Corresponding Author:[email protected]

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Jillian R. Bouck
Indiana University School of Medicine
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Kristen Pogue
Indiana University School of Medicine
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Lauren Fancher
Indiana University Indianapolis
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Olivia Coughlin
Indiana University School of Medicine
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Seethal Jacob
Indiana University School of Medicine
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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.
13 Feb 2025Submission Checks Completed
13 Feb 2025Assigned to Editor
13 Feb 2025Submitted to Pediatric Blood & Cancer
14 Feb 2025Review(s) Completed, Editorial Evaluation Pending
18 Feb 2025Reviewer(s) Assigned