Adapting a school readiness intervention for children with sickle cell disease: an intervention mapping for adaptation approach.

Background: Preschool children with sickle cell disease (SCD) are at high risk for early and progressive neurocognitive deficits that negatively affect academic outcomes. Preschoolers with SCD are more likely to display deficits in school readiness skills such as early literacy, numeracy, and self-regulation. Previous behavioral interventions for children with SCD have displayed highly variable feasibility and adherence. The goal of this study was to formally adapt an evidence-based school readiness intervention for children with SCD. Methods: The Intervention Mapping for Adaptation (IM Adapt) methodology was used to adapt an intervention for patients with SCD and their families. IM Adapt is a systematic and iterative problem-solving approach to adapt health promotion interventions for specific populations. The evidence-based school readiness intervention Kids in Transition to School (KITS) was identified through the IM Adapt strategy. This intervention showed preliminary fit with the needs of children with SCD. A planning group composed of providers, subject matter experts, and caregivers of patients with SCD was established to complete the adaptation of KITS for this population. Results: We added content to KITS describing how to respond to a child's pain episode, the impact of sleep disruptions on school performance, medical accommodations offered to children with SCD in the school setting, and how to establish school services. SCD-related content included discussion questions to facilitate group problem-solving and peer support. We converted the core child-directed content into animated videos for the children and their caregivers to watch at home together. We also provided a school readiness workbook to all families to cover early literacy and numeracy topics. We updated the parent- and child-directed intervention materials to improve cultural representation and include books that promote cultural pride for African American populations. Conclusion: By working with families and community stakeholders, we adapted an evidence-based interventions that may address barriers and health inequities. IM Adapt provides a formal process in which to document and evaluate these adaptations. Clinical trial registration: https://www.ClinicalTrials.gov, identifier NCT06367192, 4-11-2024.