180 “I don’t know what I’m doing… I hope I’m not just an idiot”: The need to train pediatric urologists to discuss sexual and reproductive health care with patients with spina bifida

Abstract

Although pediatric urologists have taken responsibility for initiating discussions on sexual and reproductive health (SRH) with spina bifida (SB) patients, research shows that very few females with SB have ever discussed this topic with any physician. We sought to better understand pediatric urologists’ gaps in knowledge and training needs in the SRH education of women with SB with the goal of creating a toolkit to equip pediatric urologists to have these discussions. In this qualitative study, pediatric urologists were interviewed separately about their current practices, perceived barriers, knowledge gaps, and recommendations for the form and content of a toolkit until thematic saturation was reached. The interviews were recorded and transcribed verbatim, then analyzed using Grounded Theory by three independent reviewers. Consensus on themes was reached. Ten pediatric urologists participated in the study: five males, 5 females, 4 fellows, and 6 attending physicians (mean years of practice 18, range 6-31). The mean number of patients followed in their respective SB clinics was 434 (range 24-1500). The following themes regarding pediatric urologists’ experience providing SRH education to women with SB emerged from the interviews: 1) lack of formal training, 2) knowledge gaps such as SB sexuality and sexual sensation, fertility, pregnancy experience, and optimal mode of delivery, 3) informal pursuits of knowledge acquisition (e.g., from conferences, gynecologists, and patients), 4) barriers to having conversations about SRH (e.g., lack of comfort, lack of time, and uncertainty of how to bring it up or how to manage parents’ participation), 5) facilitators of these conversations (e.g., a long-term relationship with the patient and the patient’s own initiative), 6) desire to learn and provide competent care, 7) recommendations for a web-based training toolkit that would include content to address the knowledge gaps and training about how to start SRH conversations.