Solo and Partnered Sexual Behavior Among an International Sample of Adults with Spina Bifida

Abstract

Background Spina bifida (SB) may differentially impact adults’ participation in solo and partnered sexual behaviors, but little research investigates this topic. Aim Describe solo and partnered sexual behaviors among an international sample of adult men and women with SB. Main Outcome Measures Ever participated (no/yes) and recent participation (>1 year ago/within last year) in solo masturbation, cuddled with a partner, held hands with a partner, kissed a partner, touched a partner's genital, had genitals touched by a partner, gave a partner oral sex, received oral sex from a partner, vaginal sex, anal sex, and sex toy use. Methods Data were drawn from a larger cross-sectional, internet-based survey assessing the sexual behaviors of an international sample of men and women with SB. We used logistic regression to examine the impact of background (gender, age, independent living, and relationship status) and health (shunt status, ambulation, and genital sensation) factors on each outcome. Results The sample consisted of 345 respondents aged 18–73 years from 26 nations. Very few (<3%) had no lifetime experience with any solo or partnered behaviors; 25.0% reported participating in all behaviors at some point in their lives. The median number of past year sexual behaviors (of 16 total) was 7. Lifetime and recent participation were associated with demographic and health factors. Clinical Implications Despite impairment, adults with spina bifida do participate in solo and partnered sexual behaviors. Medical personnel who work with this population should include discussions about sexuality as part of routine care. Strengths & Limitations Although this research measured solo and partnered sexual behavior in large international sample of adults with spina bifida, it is limited by its cross-sectional retrospective design and non-clinical convenience sample. Conclusion Despite disability, many adults with SB participate in solo and partnered sexual behavior. Medical and psychosocial supports are needed to help adults in this population enjoy sexuality in a healthy and safe manner.

Discussing sexual health in spina bifida: An individualized, patient‐centered approach

“…Research shows that between half and 70% of adults have participated in solo masturbation, in affectionate behaviors like kissing and hand-holding, in behaviors like manual-genital or oralgenital sex, and in penile-vaginal sex in the past year. 1 It is important, therefore, that individuals with spina bifida acquire developmentally appropriate and accurate sexual and reproductive health knowledge that advances their ability to make healthy choices about sex. 2 These decisions include both promoting positive aspects of sexuality (e.g., sexual desire/pleasure, child-bearing, choosing specific behaviors, etc.)…”

“…Relationships and sexual intimacy are primary concerns among individuals with spina bifida. Research shows that between half and 70% of adults have participated in solo masturbation, in affectionate behaviors like kissing and hand‐holding, in behaviors like manual‐genital or oral‐genital sex, and in penile‐vaginal sex in the past year 1 . It is important, therefore, that individuals with spina bifida acquire developmentally appropriate and accurate sexual and reproductive health knowledge that advances their ability to make healthy choices about sex 2 .…”

“…and avoiding potential adverse outcomes (e.g., unintended pregnancy, sexually transmitted infections, sexual coercion/assault, etc.). Clinicians and other allied health professions are an important point‐of‐contact in both the provision of and the discussion of sexual and reproductive health information, 1 but clinician‐perceived knowledge gaps 3 and patient discomfort about discussing sexuality 4 can impact the frequency and content of these conversations. Nevertheless, understanding what individuals with spina bifida want to discuss and how they want to discuss it is a crucial step forward in normalizing assessment of sexual health in the context of routine care.…”