Affiliations: [a] UBC Department of Pediatrics, BC Children’s Hospital, Vancouver, BC, Canada
| [b] Sunnybrook Health Sciences Centre, Toronto, ON, Canada
| [c] University of Toronto Department of Pediatrics, Division of Neonatology, Toronto, ON, Canada
| [d] University of Toronto Department of Obstetrics and Gynecology, Division of Maternal Fetal Medicine, Toronto, ON, Canada
Correspondence:
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Corresponding author: Dr. Anne Berndl, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, Toronto, ON, M4N 3M5, Canada. Tel.: +1 416 4806100, /Ext. 4329; Fax: +1 416 4804933; E-mail: anne.berndl@sunnybrook.ca.
Abstract: PURPOSE:Despite an increasing number of individuals with spina bifida reaching reproductive age, there has been a paucity of research into their reproductive health care needs. The objective of this study was to better understand the reproductive health experiences of self-identified women with spina bifida using qualitative methodology. METHODS:A phenomenological study design was used to address this objective. Women with spina bifida identified their interest in participating in a semi-structured interview after completing an online reproductive health survey. Interviews were recorded and transcribed verbatim. Qualitative analysis followed a phenomenological approach using Dedoose software. RESULTS:Twelve self-identified women with spina bifida participated. They described experiences in four domains: sexual education, pregnancy, labor and delivery, and postpartum. In addition, an intersecting domain of social justice and advocacy emerged. Numerous themes are described, including a lack of tailored sexual health information, impact of pregnancy on function, attitudes towards delivery method, and parenting challenges. CONCLUSION:This study explored the continuum of reproductive health experiences of women with spina bifida. They face unique reproductive health challenges that provide an opportunity for health care providers to offer more holistic care.
Keywords: Pregnancy, spina bifida, disability, myelomeningocele, women’s health
