Male perspectives on clinical communication about sexual health in spina bifida

James T. Rague*, Josephine Hirsch, Ilina Rosoklija, Theresa Meyer, Courtney Streur, Stephanie Kielb, Earl Y. Cheng, Diana K. Bowen, Elizabeth B Yerkes, David I. Chu

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


Aim: To assess perspectives on clinical communication about sexual health in young adult males with spina bifida. Method: Semi-structured interviews were conducted between February and May 2021 with males at least 18 years of age with spina bifida to assess their perspectives and experiences of sexual health communication with clinicians. Demographic and clinical characteristics were obtained from chart review and a survey of patients. Interviews were transcribed verbatim, and conventional content analysis was used for transcript coding. Results: Twenty individuals participated with a median age of 22 years 6 months (range 18–29 years). Sixteen had myelomeningocele. Most identified as heterosexual (n = 17) and not sexually active (n = 13). Barriers and facilitators of successful interactions were identified. Barriers for participants included general discomfort with talking about sex and variability in individual preferences for how conversations occur. Facilitators included participants' comfort with their urologist and discussing sex in relation to disability. Suggestions for improving discussions included (1) notifying individuals that discussion about sex will occur before clinic visits; (2) creating space for discussions; (3) respecting individuals' readiness to discuss; and (4) making discussions disability specific. Interpretation: Young adult males with spina bifida are interested in discussing sexual health with their clinicians. Great variability exists about conversation preferences, emphasizing the need to individualize clinical communication about sex. Current health guidelines for males may not be in line with individuals' wishes.

Original languageEnglish (US)
JournalDevelopmental Medicine and Child Neurology
StateAccepted/In press - 2023

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Developmental Neuroscience
  • Clinical Neurology


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