Experiences of family building counseling and perceptions of reproductive technology among adults with sickle cell disease

Introduction: Sickle cell disease (SCD) is an autosomal recessive blood disorder that impacts about 100,000 Americans. With increasing life expectancy and more people with SCD reaching reproductive age, there is growing evidence that SCD and some of its therapies decrease fertility. While partner testing and assisted reproductive technology (ART) can enable people with SCD to choose if and how to have biological children, their use remains limited. In this study, we aimed to explore how people with SCD understand the potential fertility implications of SCD and their perceptions of partner testing and ART. Methods: We recruited adults with SCD ages 18–35 years old who self-identified as being interested in having a biological child in the future and conducted semi-structured individual interviews to discuss previous experiences and perceptions regarding family building planning. Interviews were transcribed and thematically analyzed using inductive coding and the social ecological model. Results: We completed 11 interviews with 9 women and 2 men (mean age 30.6 years old, 100% Black or African American). We identified five themes that reached saturation: 1) Providers gave limited support for family building planning; 2) Female participants had a lack of understanding what pregnancy would be like with SCD; 3) Participants felt their partners did not equally share the burden of family building planning; 4) Potential financial burden prevented participants from seriously considering ART; and 5) Participants wanted earlier and frequent discussions with their providers about family building options. Participants identified factors that impacted their family building plans, which fit across the social ecological model. Discussion: Adults with SCD desire further education on the impact of SCD and its treatments on fertility as well as support in their reproductive planning through early, frequent conversations about family building options. Additionally, financial barriers to ART such as insurance coverage must be addressed for adults with SCD.