Knowledge of Stroke Risk, Signs of Stroke, and the Need for Stroke Education among Children with Sickle Cell Disease and their Caregivers

OBJECTIVES: This study assessed stroke knowledge and the need for stroke education among children with sickle cell disease (SCD) and their caregivers. METHODS: A cross-sectional study was conducted and includes: (1) structured interviews of 44 children with SCD and their 50 caregivers, and (2) a self-administered survey completed by medical directors of 22 SCD centers. The participants were interviewed regarding stroke knowledge and stroke educational materials. RESULTS: Among the caregivers, only 34% named stroke as a complication associated with SCD, 36% were aware that their children were at higher risk, and 46% were not able to identify any warning signs of stroke. Only 11% of the children could accurately describe a stroke. Although 82% of the medical directors provided stroke information to caregivers, only 50% provided stroke educational materials to children. Caregivers and children were interested in receiving information about stroke. The preferred format for the educational material was a pamphlet for adults and a video for the children. CONCLUSIONS: Children with SCD, caregivers, and healthcare providers need and desire educational materials about stroke. Educational materials to improve knowledge about stroke may be an important strategy to increase completion of stroke screening tests.