Caregiver Insights on Early Intervention for Children with Sickle Cell Disease

Abstract Objective Sickle cell disease (SCD) is an inherited red blood cell disorder that disproportionately affects Black and African American children in the United States. SCD is associated with developmental delays, most frequently in the cognitive and language domains. Early intervention (EI) services offer an opportunity to mitigate delays through developmental support and family education. EI services are underutilized among children with SCD because of several significant challenges, including limited awareness among pediatric providers, inadequate family-centered communication, and suboptimal screening protocols during routine well-child visits. Method Using a qualitative approach, semi-structured interviews were completed with 11 caregivers of children with SCD who had been referred to and wanted EI services. Results Caregiver interviews revealed 3 key themes: home-based services are convenient for families managing complex medical needs, caregivers observed meaningful improvements in child development through EI participation, and pediatric provider support with referral, rather than family self-referral, made connecting with EI easier. Conclusion Caregivers described specialty providers as central to connecting their families with EI. Caregivers whose providers completed the referral reported that the process asked little of them. Families in this sample valued EI for their children with SCD. Systematic provider-facilitated referral is a caregiver-identified facilitator that warrants evaluation as a strategy to strengthen developmental surveillance and referral to EI services for children with SCD.