Beth Ely1, Mei Lin Chen Lim1, Eron Coyne1, Theresa McNight1
1) United States
Sickle cell disease (SCD) is the most common genetic disorder in African American children. Children as young as 6 months of age can experience pain from vaso-occlusive crisis that is episodic and recurrent.
The purpose of this research was to evaluate the effect of an educational book for young children with SCD and their parents. Few resources exist for young children with SCD to learn about the physiology and treatment in a way they can comprehend.
Using a randomized controlled, pre-post test design, we recruited and randomly assigned children with SCD ages 4-8 years and one parent/gaurdian to either the experimental (SCD Book) or control (generic hospital book) group. Ten knowledge questions on SCD were asked before reading the assigned book and again 4 – 7 days later. Parents were asked to read the assigned book with their child at least once daily for 3 days. Parents also completed a questionnaire about the book at study completion.
A total of 40 children with SCD, 52% male; mean age 5.8 years. (median 5.0 yrs.), and a parent were enrolled with 20 per group with similar demographics. In the experimental group, a mean score of correct answers in pre-test (7.5) compared to post test (9.1) was statistically significant (p = .002) compared to the control group of pre-test mean correct score of 7.5 to post-test (8.3) (p = 0.23). Parents with the SCD book felt their child enjoyed the book very much (65%), was attentive (70% listened somewhat or completely), and definitely learned from the book (85%). Also, 85% of parents said that reading the book encouraged discussion about SCD with their child.
Study findings provide strong evidence for the effectiveness of a book developed for young children with SCD and their parents to engage and teach children about disease management.
