Introductory Questions What is the impact of sickle cell disease on daily life for your child and for your family? How do you think the stroke impacted your child’s life? Perception of Risk of Recurrent Stroke What do understand about the risk of your child having another stroke? In your own words, what do you think would happen to your child in the long term if he/she didn’t receive treatment? Do you think your child is at higher risk for stroke if he/she misses some treatment? Perception of Benefits of Stroke Prevention Can you describe how stroke prevention makes your child’s life better? Can you give a specific example? Barriers and Facilitators Can you describe how you fit the transfusion/hydroxyurea appointments into your life? From time to time, everyone has difficulty making it to appointments? What makes it difficult to make it to appointments? What helps you to make sure your child gets his/her transfusion/hydroxyurea? How confident are you in your ability to follow the treatment recommended by your child’s doctor? Transfusion versus Hydroxyurea What are the benefits of taking hydroxyurea compared to transfusion? What are the disadvantages of taking hydroxyurea compared to transfusion? *Age appropriate questions were used for the pediatric subjects.

Table 1: Examples of parent* interview questions related to primary stroke prevention.