Reproductive Attitudes and Behaviors in People with Sickle Cell Disorders: A Qualitative Interpretive Meta-Synthesis

PRESENTATION TYPE: Individual Poster

CATEGORY/THEME: Context and Prevention

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

ABSTRACT BODY:

Introduction: Sickle Cell Disease (SCD) is a global public health issue and one of the most severe, widespread genetic disorders in the world. An estimated 80,000 people in the US have SCD. SCD affects 1 in 400 African Americans and 1 in 19,000 Latinos. Additionally, approximately 1 in 12 African Americans and 1 in 100 Latinos have SCT.  Key to prevention is an understanding the inheritance of the disease. The purpose of this study is to understand the reproductive attitudes and behaviors in people with SCD or Sickle Cell Trait (SCT) to inform practice, research, and policy.

Method:Qualitative Interpretive Meta-Synthesis (QIMS) was employed for this study using qualitative scholarly articles from psychology, nursing, and sociology. QIMS is a method developed for social work to guide interpretive synthesis of qualitative studies on a specific topic. Peer-reviewed studies were included that contained qualitative description of reproductive attitudes and behaviors among people with SCD/SCT. Studies utilizing quantitative or mixed methods were excluded. Three studies were included in the final synthesis for a total sample of 79 participants of African American, African, and African Caribbean background whose ages ranged from 16 to 63.

Results:Analysis of the three studies identified seven themes that captured the reproductive attitudes and behaviors of people with SCD or SCT: 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. People with sickle cell disorders have different reproductive attitudes and behaviors depending on their unique situations. Some women were afraid to ask their partner’s SCT status before conception and some of their partners refused to get tested. Once involved with someone, participants noted it is difficult to end the relationship even if one or both partners had SCT.

Conclusions: Adequate knowledge and awareness about SCD and the inheritance of the disease is important for prevention. The themes identified have implications for future research, practice and policy. In terms of practice, practitioners should be sensitive to the cultural and racial issues attached to the disease and encourage open communication and disclosure about one’s SCT status. Given the limited studies examining reproductive attitudes and beliefs among this population, future research may have a significant contribution in understanding the factors that influence reproductive behaviors among this group. Important implications for policy include policies addressing SCD/SCT in schools, coupled with screening programs. In addition, policies should be implemented around genetic testing and counseling for couples before marriage.