Caregivers' perspectives on barriers to transcranial doppler screening in children with sickle‐cell disease

Abstract

Current guidelines recommend that children with HbSS or HbSβ°thal undergo yearly transcranial Doppler screenings (TCD) to identify those at high risk for stroke. Compliance is low with yearly TCD screenings. Our objective was to describe caregiver experiences and knowledge of TCD screenings as well as barriers that may prevent screening. Qualitative, in-depth interviews structured around the Health Belief Model were conducted with 36 caregivers of children eligible for annual TCD screenings. Interviews were coded and general themes were extracted. Two-thirds (69%) of caregivers believed that stroke occurs sometimes (33%) or frequently (36%) in children with sickle-cell disease (SCD). Lack of knowledge was the most commonly described barrier to annual TCD screening, with 22% of caregivers reporting no knowledge of screening, and 42% unaware that the screen should be performed annually. Lack of self-efficacy and fear of chronic transfusions were other barriers endorsed by caregivers. Barriers less commonly identified (endorsed by <10% of caregivers) included financial barriers, transportation issues, missed appointments, and hours of radiology clinic. Fifty-eight percent of the caregivers' children with SCD had undergone a TCD in the 18 months prior to the study interview. From the caregiver perspective, lack of knowledge and low self-efficacy play a larger role than practical barriers in compliance with annual TCDs. Ongoing education at multiple patient encounters and encouragement of caregivers' empowerment and role in obtaining annual screenings may increase TCD compliance.