Journal of Blood Disorders & Transfusion

Abstract

Adherence to Secondary Stroke Prevention in Children with Sickle Cell Anemia: Family and Child Perspectives

Lydia Boateng, Eve Puffer, Taryn Allen, Melanie Bonner and Courtney D Thornburg

Children with sickle cell anemia and primary stroke are at high risk of secondary stroke. Transfusions reduce but do not eliminate this risk and results in iron overload. Hydroxy urea in combination with phlebotomy is an alternative. We conducted semi-structured interview based on the Health Belief Model to examine factors influencing adherence to secondary stroke prevention. Participants were 14 caregivers of children with history of stroke and 12 of their children, ages 8 to 17 years. Barriers to adherence included high frequency and length of clinic visits, disruption of school and work, and lack of resources. Facilitators included health benefits of therapy, social support systems, medication reminders, and positive clinic experiences. Caregivers and children reported a preference for hydroxyl urea over transfusions, as they perceived fewer barriers and equivalent benefits. Healthcare providers should work with families to preemptively identify and address barriers to secondary stroke prevention which may compromise care.