Sexuality and Relationships in Young People With Spina Bifida and Their Partners

Purpose: Research focusing on sexuality in those living with disabilities, such as spina bifida (SB), has not specifically addressed adolescents and has been largely quantitative in design. Our study qualitatively explored how young people with SB think about and discuss sexuality with their sexual and romantic partners in the context of their disability.

Methods: Participants aged 16-25 years were recruited using purposive sampling from a large urban pediatric rehabilitation center in Toronto, Canada, as well as through a large Spina Bifida and Hydrocephalus Association. Semistructured interviews were conducted in person or by telephone. Inductive coding and descriptive thematic analysis were conducted on verbatim transcripts.

Results: There were mixed views on the importance of disclosing their condition to partners. While some participants strongly believed that their disability was important to share with partners, others worried that potential partners would focus on the disability rather than the person. Participants reported challenges about the timing of disclosure, lack of confidence in their abilities to express their sexual needs, and fears of rejection. After disclosure, however, participants often experienced increased confidence in themselves and their relationships. Participants identified a lack of SB-specific sexual education and a desire to learn more from their health care providers.

Conclusions: The findings underscore the importance of empowering young people to become more confident talking about their disability, especially in the context of sexual and romantic relationships. Being able to discuss their abilities, needs and desires could potentially facilitate the development of healthy relationships during their transition to adulthood.