Understanding and improving health education among first-time parents of infants with sickle cell anemia in Alabama: a mixed methods approach.

Abstract

With the increase in access to medical information, parents can acquire health information from multiple sources. An understanding of parents' reactions to a newborn infant's diagnosis of sickle cell anemia and how they acquire knowledge can identify parent beliefs and preferences about the process of sickle cell education. This study utilized a sequential exploratory mixed methods design. First, qualitative interviews were conducted with 8 parents of infants with sickle cell anemia to understand the process of health education. Second, quantitative surveys were conducted with 22 other parents to test qualitative findings. Parents of infants with sickle cell anemia expressed a high level of fear at the time of notification of a positive screen. Parents desired an understanding of how to identify acute complications of disease and how sickle cell will alter their child's life. Parents actively sought information at the time they were told their child had sickle cell disease. Sickle cell education should begin at time of notification of positive newborn screening results and address identified parent concerns. Health care providers should build trust with parents and provide them with immediate access to educational materials. Hematologists should work with primary care providers to develop complementary educational programs and resources.