Love vs. Risk: Women with Sickle Cell Disease Face Reproductive Decision-Making Dilemmas

Area of Science:

• Hematology
• Genetics
• Reproductive Health

Background:

• Sickle cell disease/trait (SCD/T) is a common genetic blood disorder in the U.S.
• Vaso-occlusive crises cause significant morbidity and mortality in SCD/T patients.
• Improved treatments allow individuals with SCD/T to reach reproductive age, but pregnancy poses elevated risks.

Purpose of the Study:

• To explore reproductive health concerns among women with sickle cell disease/trait (SCD/T).
• To understand the impact of SCD/T on women's mental health and social engagement.

Main Methods:

• Qualitative study involving key informant interviews and focus groups with 54 patients, caregivers, advocates, and healthcare professionals.
• Verbatim transcription, inductive coding, and thematic analysis of collected data.

Main Results:

• Three major themes emerged: 'the Dilemma of Love vs. Risk,' 'SCD/T Knowledge,' and 'the Mental and Emotional Toll of SCD/T.'
• Reproductive concerns significantly impact the mental health and social engagement of women with SCD/T.

Conclusions:

• Urgent need for programs addressing unique SCD/T reproductive health risks and support needs.
• Essential components include accessible information, counseling, and communication tools for women and partners.
• A multidisciplinary approach is required for comprehensive support.