Objective
To examine sexual knowledge, concerns, and needs of youth with spina bifida (SB) to inform the medical community on ways to better support their sexual health.
Methods
As part of the Video Intervention/Prevention Assessment (VIA) – Transitions, a prospective cohort study, 309 hours of video data were collected from 14 participants (13–28 years) with SB. Participants were loaned a video camcorder for 8–12 weeks to shoot visual narratives about any aspects of their lives. VIA visual narratives were analyzed with Grounded Theory using NVivo.
Results
Out of 14 participants, 11 (6 females) addressed issues surrounding romantic relationships and sexuality in their video clips. Analysis revealed shared concerns, questions, and challenges regarding sexuality gathered under 4 main themes: romantic relationships, sexuality, fertility and parenthood, and need for more talk on sexuality.
Conclusions
Youth with SB reported difficulties in finding answers to questions regarding their sexuality, romantic relationships, and fertility. This study revealed a need for help from the medical community to inform and empower youth with SB in the area of sexual health. Through sexual and reproductive health education with patients and parents starting at an early age, medical providers can further encourage healthy emotional and physical development in adolescents transitioning into adulthood.