Presentation Authors: Courtney Streur*, Christine Schafer, David Sandberg, Elisabeth Quint, Daniela Wittmann, Ann Arbor, MI
Introduction: As more women with spina bifida are entering their reproductive years, the number having babies is significantly increasing. However, research suggests providers are not discussing reproductive health with these women. We sought to determine what women have been told and understand about their reproductive health, their attitudes towards having babies, and their experiences interacting with providers during pregnancy and delivery.
Methods: In this exploratory qualitative survey, interviews with women with spina bifida who were at least 16 years old were transcribed verbatim and analyzed using Grounded Theory by three reviewers.
Results: Twenty-five women with spina bifida ages 16-52 years (median age 26) participated. Six women had at least one previous pregnancy. Five had thought that they could not get pregnant before they actually got pregnant. Interviews revealed the following themes about their reproductive health perception and experiences: 1) poor understanding of their reproductive health and potential, 2) attitude towards becoming pregnant or not, 3) facing physicianâ€™s opposition to their reproductive goals, 4) going into pregnancy and delivery blind, 5) the importance of provider support for reproductive goals.
Conclusions: Although having babies is important to most women with spina bifida, they report a poor understanding of their reproductive potential with several reports of unintended pregnancies. They feel uninformed and unprepared during pregnancy and face discouragement from providers. Those who find supportive providers report a more positive experience. This demonstrates the need for further research on obstetric outcomes to improve prenatal counseling and perinatal care of these women as well as additional education and training to equip provi
Source of Funding: Society of Women in Urology's Elisabeth Pickett Research Award