Characterizing sexual abuse in a national survey of adults with spina bifida

Individuals with disabilities in general are more likely than nondisabled peers to experience sexual abuse. However, it remains unknown how features specific to spina bifida (SB), such as lifelong need for intermittent catheterization, shape the frequency and pattern of sexual abuse in this population.

We analyzed responses to the Sexual Practice, Abuse, Risk, Knowledge, and Self-Efficacy (SPARKS) survey, a validated instrument distributed nationally to adults with SB as an anonymous convenience sample through the Spina Bifida Association's social media and email lists. Sexual abuse was defined as any non-consensual or unwanted sexual experience and childhood abuse as occurring before age 18. Sex was defined by sex assigned at birth and clean intermittent catheterization (CIC) as routine catheter use to empty the bladder. Associations were assessed with chi-square or Fisher's exact tests and multivariable logistic regression; self-efficacy with the Mann-Whitney U test.

Among 162 respondents (110 females, 51 males; mean age 40.5 ± 13.0 years), 39.5% reported lifetime sexual abuse and 66.0% reported any abuse (sexual, physical, or emotional). Among those sexually abused, 68.8% experienced ≥2 forms of coercion, 68.8% also reported physical or emotional abuse, and 53.1% reported abuse before age 18. Compared to males, females reported both higher lifetime sexual abuse (51.8% vs 11.8%; OR 8.07; adjusted OR 8.21, 95% CI 3.21-21.00) and childhood sexual abuse (28.2% vs 3.9%; p < 0.001). Among females, reported sexual abuse was more frequent in CIC users than non-users (57.8% vs 33.3%; OR 2.74, p = 0.045; 95% CI 0.91-5.92); no association was observed among males. Across the full sample, perceived self-efficacy was high for both refusing unwanted sex (86.8%) and discussing abuse with a provider (81.1%); however, among the subset who had actually experienced abuse, 73.4% had never disclosed it to anyone, and only 29.6% of the full sample identified a clinician as a source of sexual-health information.

Among respondents in this convenience sample of adults with SB, a high proportion reported sexual abuse, often beginning in childhood. Reports were disproportionately concentrated among females, especially those who use CIC. Whether this reflects the experience of the broader SB population is unknown. Despite high self-rated confidence in discussing abuse with a provider, most survivors had never disclosed it, and few identified a clinician as a sexual-health resource, pointing to missed opportunities for provider-initiated inquiry rather than patient unwillingness. Safety, anatomy, and appropriate touch should be routinely incorporated into CIC teaching.