Perspectives on How to Implement Developmental Screening and Intervention for Children With Sickle Cell Disease

Abstract

Background: Children with sickle cell disease (SCD), a genetic blood disorder, are at increased risk of developmental delays but are not routinely referred to Early Intervention (EI). The study aimed to understand the need for and acceptability and feasibility of screening and providing EI services to children with SCD. Methods: Eleven EI partners and eight caregivers of children aged 3 to 5 years with SCD completed semi-structured interviews and short surveys. Results: Three main themes emerged from interviews and surveys: (a) awareness of disparities and moderate caregiver knowledge of child development, (b) high acceptability of screening for EI, and (c) the need for partner education to increase buy-in and feasibility of potential programming. Conclusion: Partners identified a clear need for EI screening and referral for children with SCD and indicated that a future program would be acceptable and feasible. However, education and incentives are needed to encourage providers to change current practice patterns.