Perspectives of Young Men with Spina Bifida on Fertility Potential and Future Parenthood

Objectives To explore the perspectives of young adult males with spina bifida on their fertility potential and parenthood. Methods Semi-structured qualitative interviews were conducted between 2/2021-5/2021 with men ≥18 years of age with spina bifida on perspectives on fertility potential and parenthood. Demographic and clinical characteristics were obtained from a survey and chart review. Interviews were transcribed verbatim and assessed through conventional content analysis framework. Results Of 30 eligible individuals approached, 20 agreed to participate. Median age was 22.5 years (range 18-29), and 80% had myelomeningocele. Most reported not being in a relationship (14/20, 70%), not being currently sexually active (13/20, 65%), and no participant reported a history of paternity. Many reported a desire for future fertility. Uncertainty and areas of concern were identified regarding their physiologic and psychosocial ability to be a parent. Perceived barriers to achieving parenthood included: 1) uncertainty around fertility potential and the hereditary nature of SB; and 2) concerns with being a parent and raising a child. Facilitators to help overcome uncertainty, such as gaining knowledge on fertility testing options and understanding means of preventing neural tube defects, were identified. Participants expressed the importance of strong peer and family support to help overcome challenges related to parenthood. Conclusions Men with spina bifida are interested in future fertility, yet uncertainty exists around the physiologic and psychosocial ability to be a parent. Facilitators to help overcome uncertainty and concerns should be a focus of patient counseling around future fertility with young men with spina bifida.