Presentation Authors: Courtney Streur*, Christine Schafer, David Sandberg, Elisabeth Quint, Daniela Wittmann, Ann Arbor, MI
Introduction: Women with spina bifida (SB) are sexually active, but most never discuss this topic with providers. This leaves them vulnerable to potentially harmful misconceptions and reduced quality of life. Our objective was to determine what women with SB understand about their sexual health, how they have learned about it, what questions they have, and their experiences with their sexuality.
Methods: For this qualitative study, women with SB ages 16 and older without marked developmental delay were individually interviewed. Interviews were independently coded for themes by 3 reviewers, using Grounded Theory, with disagreements resolved by consensus.
Results: Twenty-five young women with SB participated (mean age 27.1 years, range 16-52). Seventeen of the 25 (68%) participants had been or were currently sexually active. Five themes emerged regarding their understanding of their sexuality and their sexual experiences: 1) being perceived as asexual, 2) sources for sex education, 3) need for SB-specific sex education, 4) impact of SB-specific features on sexual encounters, and 5) perceived relationship between low sexual self-confidence and risk for sexual assault.
Conclusions: Women with SB described struggling with the perception that they are asexual. They have unanswered questions about their sexual health, but difficulty finding information. Most need to make modifications during intercourse due to their disability and describe low self-confidence. Their poor education, misunderstandings and lack of confidence make them vulnerable to unintended pregnancy and sexual assault. Including sexual health discussions in the usual care of women with SB is critical to enhancing their sexual confidence and experience and preventing sexual abuse.
Source of Funding: Society of Women in Urology's Elisabeth Pickett Research Award