A Pilot Study Evaluates the Effectiveness of a Children’s Book about Sickle Cell Disease

Two nurse practitioners who work with children with sickle cell disease (SCD), the most common genetic disease affecting 1 in 400 African Americans, wrote a children's book, My Book, My Body, My Blood, to help young children ages 4-8 years learn about SCD. We are currently studying the impact of this book on knowledge gained and usefulness of the book as perceived by parents. The pilot study is called: “My Book, My Body, My Blood. Exploring the Benefits of a Children’s Book Designed to Teach Kids with Sickle Cell to Understand, Cope, and Own Their Disease.”

The study design is a randomized trial with half the children getting the SCD book and the other half getting a generic book about going to the hospital. After study completion the SCD book is sent to the children who were randomized to the generic book group. To date we have enrolled more than 25 children.

Both parents and children find the book engaging, informative and useful. A number of parents have let us know they were grateful to have this informative children's book to share with their child and begin to teach their young child about SCD. Since SCD is a chronic illness resulting in episodes of painful crisis, the need to take daily medication, manage fatigue from anemia, along with other complications, learning about self-care techniques and coping is key as the child grows.

Reading with children encourages language development; quiet, close time spent with an adult, often the parent; and an opportunity to explore experiences. This is a natural method used to introduce new concepts, explain simple ideas and relate to the child on a developmentally appropriate level.