Exploring Attitudes, Beliefs and Behavior Towards Hormonal Birth Control Among Female Patients with Sickle Cell Disease through Semi-Structured Interviews

Background: Sickle cell disease (SCD) is an inherited, autosomal recessive disorder and one way to decrease the risk of transmission of the disease is through informed reproductive choices. The U.S. Medial Eligibility Criteria for Contraceptive Use advises that the benefits of using hormonal contraceptives usually outweigh the risks for women with SCD. Recommendations for contraceptive use for individuals with sickle cell disease do not discourage the use of any specific contraceptives and identify sickle cell disease as a condition that exposes the woman to increased risk as a result of unintended pregnancy. Research indicates that women with SCD use hormonal contraceptives at lower rates than women without SCD.

Objective: We sought to understand women with SCD knowledge, attitudes, and practices around hormonal contraceptives.

Methods: African American females 18 and older with SCD were recruited from a sickle cell clinic in Atlanta, Georgia. We administered semi-structured interviews to examine the intersection of sickle cell and reproductive health. These semi-structured interviews explored participants' knowledge and attitudes towards hormonal contraceptives, as well as their personal experiences using hormonal contraceptives.

Results: Seventeen women were interviewed on this topic. All but two of the participants indicated they had previously used hormonal contraceptives, but most of the women were not currently using hormonal birth control. Some of the participants had positive thoughts towards hormonal birth control because it prevents pregnancy.

Birth control period. I am all for it. I feel like that is a good prevention of having unplanned pregnancies and whatever.

Women cited positive experiences with hormonal birth control because it helped with heavy menstrual bleeding and decreased the number of sickle cell pain crises they experienced.

I had depo before. It just made me gain weight and my cycles were off balance but it kind of helped with the Sickle Cell crisis a little bit.

I would have pain crisis every time I had a menstrual cycle so my doctor told me to go to a gynecologist to get onto a birth control so that kind of decreased the amount of crisis that I was getting.

Some of the participants had negative perceptions of hormonal birth control. Some were wary of it altogether. Most of them cited the side effects associated with hormonal birth control as the main reason they did not use them.

I don't think any women should be on them just because of all the stuff in it. Some stuff they do not tell you what is in it and the weight gain and all the side effects I don't like them.

That's why I don't like them because of the symptoms that I had. I was

on Depo and I bleed for two months straight. And then I tried another one.

Some green pill I don't know. I tried the implant. Like I said all the side effects

I didn't like them. I didn't like when I had side effects with it.

Participants had specific concerns about the side effects related to menstrual bleeding and the intersection between contraceptive and sickle cell.

I know they can just regulate your menstrual cycle. I kind of feel like that's unnatural. I think God put that in place for a reason and it needs to clean your body out. I just kind of think that part of it is unnatural and it shouldn't happen.

I actually had to get one of them took out. The Nexplanon it actually caused a blood clot which is dangerous for a Sickle Cell patient.

Right now I have an IUD and at first it was giving me back problems but I think it was just associated with Sickle Cell. So I think maybe it can trigger a Sickle Cell crisis sometimes.

Conclusion: Our study findings indicate that women with SCD have low utilization of hormonal birth control with concerns for side effects caused by, and a general distrust of, hormonal contraception. However, some women also acknowledge that hormonal contraception can help prevent unplanned pregnancy, which not only may lead to unintended transmission of SCD, but also increased health risks to the woman. Providers caring for women with SCD may be able to better support them by adopting a patient-centered approach to contraceptive counseling. Seeking to clarify women's reproductive goals, contraceptive priorities and concerns, as well as correcting misinformation and reassuring women about hormonal contraceptive safety for women with SCD may be beneficial.