An examination of African American college students' knowledge and attitudes regarding sickle cell disease and sickle cell disease carrier testing: A mixed methods study

Approximately, 80,000 Americans are affected by sickle cell disease (SCD) and it is the most common inherited blood disorder in the United States. SCD is most prevalent among individuals of African, Mediterranean, Middle Eastern, and Asian Indian ancestry; however, statistics suggest that in the United States, African Americans are disproportionately affected by SCD (Sickle Cell Disease Association of America (SCDAA), 2007). Nearly, 1 in 400 African Americans is born with SCD; in addition, 1 in 12 African Americans is born with sickle cell trait (SCT) (National Human Genome Research Institute (NHGRI), 2007). Two carriers of the trait have a 25% chance of having an unaffected child, a 50% chance of having a child who is also a carrier, and a 25% chance of having a child with SCD. However, many African Americans lack knowledge about SCD and SCT and are unaware of their carrier status.;The purpose of this two-phased sequential mixed methods study was to explore African American college students' beliefs, attitudes, and knowledge of sickle cell disease (SCD) genetics, and of sickle cell trait (SCT) and SCD carrier testing. This purpose was accomplished by surveying 191 African American men and women between the ages of 19 and 30 years and then exploring those results in more depth through follow-up interviews with 8 purposefully selected individuals from the first phase. In the 1st phase, quantitative research questions addressed the relationship of African American college students' current level of knowledge and attitude about SCD and SCT, attitude toward SCD carrier testing, and their intention to participate in carrier testing at various sites. A stepwise multiple regression analysis was used to determine which of these variables contributed most significantly to the participants' decision to participate in carrier testing. In the 2nd phase, qualitative interviews with purposefully sampled individuals who participated in testing were used to explore the significance of participants' attitude toward carrier testing. There have been few studies published that examined the knowledge and beliefs of young adults regarding SCD and SCD carrier testing. It was determined that the major factors that contributed to the students' intention to participate in SCD carrier testing were attitude toward carrier testing, lack of knowledge regarding SCD and SCD carrier status, family history, cost, time and opportunity. It was revealed that the participants supported carrier testing and viewed SCD carrier testing for young adults as valuable. However, greater community health education about SCD and SCD carrier testing was desired. The implications for health education and promotion research are to (a) increase the SCD genetic knowledge of young adults in the African American community and (b) increase opportunities for minority populations to be informed of SCD carrier testing.