Student Researcher Name: Asia van Buuren
Supervisor: Dr. Anne Berndl

A. L. van Buuren, BSc1; H. Lipworth2; S. O’Rinn, BA2; P. Church1,2, MD; A. Berndl, MD, MSc1,2
1: University of Toronto Faculty of Medicine; 2: Sunnybrook Health Sciences Centre


BACKGROUND: Despite an increasing number of women with spina bifida reaching reproductive age, there has been a paucity of research into their unique reproductive health care needs.

OBJECTIVE: The primary objective of this study was to begin to understand the sexual and reproductive health experiences of women with spina bifida.

METHODS: A phenomenological study was used to address our objective. Women with spina bifida identified their interest in participating in a semi-structured interview after completing an online reproductive health survey. Open ended questions surrounding sexual education, reproductive health, and pregnancy experiences were recorded and transcribed verbatim. Qualitative analysis of the transcripts was conducted using a phenomenological approach. Transcripts were coded in Dedoose software.

RESULTS: Twelve women with spina bifida participated in our study. Several themes emerged. Lack of information and inadequate education surrounding both sexual health and pregnancy was described by participants, causing women to seek out information online and through other women with spina bifida. Pregnancy often acted as a catalyst to seek out information; however, women described being disappointed by the lack thereof. Support in pregnancy from health care providers was mixed in terms of positive and negative experiences. A number of participants describe being encouraged to have an abortion when revealing a pregnancy. All participants mentioned the need for self-advocacy in shaping their reproductive health experiences.

CONCLUSION: This is the first known study to use a phenomenological approach to understand the sexual health, reproductive health, and pregnancy experiences of women with spina bifida. Women with spina bifida face reproductive health challenges such as discriminatory attitudes and a lack of information. Further research is needed in order to address knowledge gaps.