Reproductive Education and Sexual Abuse Among Individuals With Spina Bifida: A Mixed Methods Study

Objective

To investigate sexual and reproductive health (SRH) knowledge and practices among young adults with spina bifida (SB), with an emphasis on identifying gaps in SRH literacy and barriers to care.

Design

Sequential explanatory mixed methods study consisting of a disability-specific survey and follow-up interviews.

Setting

Participants were recruited from a multidisciplinary SB clinic.

Participants

Eighty young adults (N=80) with SB were surveyed (March 2021-April 2022), and 4 participants from this sample took part in follow-up in-depth qualitative interviews. The sample included both male and female participants who were sexually active or had prior exposure to SRH education.

Interventions

Not applicable.

Main Outcome Measures

Primary measures assessed SRH knowledge gaps, relationship barriers, contraception use, pregnancy awareness, and experiences of abuse/coercion. Findings aim to inform educational programs, abuse prevention, and clinical guidelines for individuals with SB.

Results

Among the 80 survey participants, 55% of men and 47% of women reported being sexually active. Despite this, 44% of women were unsure about their ability to become pregnant. Sexual abuse or coercion was reported by 25% of women and 10% of men. Key interview themes included challenges and supports related to dating, gaps in SRH education, experiences with sexual intimacy, and the prevalence of sexual abuse. Barriers stemmed from concerns about disclosing SB, misconceptions about independent living, and restricted social opportunities because of family protectiveness. Facilitators included online dating, shared interests, and acceptance from open-minded partners.

Conclusions

Among the young adults with SB who participated in this study, many were sexually active but faced significant barriers and gaps in SRH knowledge, increasing their risk of sexual abuse and poor reproductive health outcomes. Determining levels of sexual health literacy and screening for abuse are critical to improving SRH outcomes for this vulnerable population.