Reproductive Attitudes and Behaviors in People With Sickle Cell Disease or Sickle Cell Trait: A Qualitative Interpretive Meta-Synthesis

Abstract

Sickle cell disease (SCD) is a serious and life threatening disorder. The literature on informed reproductive decisions among people with SCD is limited, suggesting that there is a lack of awareness about SCD and Sickle cell trait status (SCT) among high-risk populations. The purpose of this qualitative interpretive meta-synthesis (QIMS) is to examine the reproductive attitudes and behaviors in people with SCD or SCT to create effective genetic counseling programs to inform reproductive decision making. Three studies were included in the QIMS for a total sample of 79 participants. The majority of the sample was African American, ages 16 to 63. Other demographic characteristics of the study populations and data collection methods used in these studies varied. Seven themes on reproductive attitudes and behaviors among people with SCD or SCT emerged: lack of awareness or education about SCD and SCT; men who deny having SCT; attitudes toward learning one's SCT status; rationales for learning a partner's SCT status prior to commencing a relationship; valuing relationships over SCD risk; learning one's own and partner's SCT status; and the consequences of not asking about partners' SCT status. Implications for prevention programming involving improved education and awareness about the disease and reproduction are discussed.