ASSESSING THE ATTITUDES AND BELIEFS OF AFRICAN-AMERICANS TOWARD NEWBORN SCREENING AND SICKLE CELL DISEASE

Each year 15-20 infants with sickle cell disease and 600 infants with trait are born in western Pennsylvania with no significant decrease in annual incidence. A 2006 study by Children's Hospital of Pittsburgh's Comprehensive Hemoglobinopathy Program surveying African-American women in the prenatal setting found that these women have a high perception of the severity of sickle cell disease and the importance of sickle cell trait screening but a low perceived susceptibility to sickle cell disease. The current research was designed as a qualitative follow-up study to assess African-American community members' attitudes and knowledge of sickle cell, prenatal testing, and newborn screening, to characterize barriers to education and awareness of newborn screening and sickle cell, and to determine if a community-based intervention could be developed to improve awareness of these topics. Four focus groups were conducted with 35 participants at the Kingsley Association in a predominantly African-American community of Pittsburgh. Participants were recruited from the Healthy Black Family Project. Transcripts were analyzed using thematic analysis and demographic information was compiled from a pre-discussion survey. Qualitative analysis has demonstrated that participants fall into one of three knowledge categories: the unaware, those with accurate but incomplete information, and those with misinformation. Participants have an understanding of sickle cell disease course. However, inheritance of sickle cell and the personal risk to have children or family members with the condition is not well understood. Participants have knowledge of the methods and indications for prenatal testing and value prenatal testing for the opportunities for choice and awareness. Risks of prenatal testing were identified as miscarriage as well as personal and family stress. Newborn screening was believed to be beneficial for preparation and treatment. Barriers to education and awareness of sickle cell and newborn screening were classified as personal, familial, and societal. The public health significance of this work is the identification of community members who are eager to decrease the prevalence of sickle cell in their community and the potential to design community discussion groups which address genetics topics and provide African-Americans with the tools to communicate with family and physicians about risk for sickle cell