SPU - “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

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“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
Courtney S. Streur, MD, MS, Christine L. Schafer, BS, Valerie P. Garcia, N/A, Daniela A. Wittmann, PhD, LMSW.
University of Michigan, Ann Arbor, MI, USA.

734-678-1928
“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
Introduction:
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.
Methods:
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 the 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.
Results:
Ten pediatric urologists participated in the study: five males, 5 females, of whom 4 were fellows, and 6 were 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. Pediatric urologists’: 1) lack of formal training, 2) knowledge gaps (e.g., 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.
Conclusions:
Pediatric urologists are not trained and do not feel prepared to provide SRH education for young women with SB. However, they do see it as a part of their scope of practice and wish to acquire competence in this area. These findings can provide the beginning concepts for the development of training on providing SRH education for pediatric urologists’ care for women with SB.
Table 1. Representative quotes for each theme.
Theme Quote
Lack of formal training “…so I think urology residency with its focus on male genital issues prepares you pretty well to talk to men about sex… But through no part in that training do I remember there being any kind of focus or formal teaching about how to talk to women about sexuality…”
Knowledge Gap “…the more I talk about it, the more I realize I don’t know anything.”
“…there’s a whole lot there that we don’t know and nobody talks about.”
“…is sex painful for them… is sex a pleasurable thing for them?”
“…are these women as fertile as any other woman or less fertile?”
“…we have to have… a better understanding… on pregnancy and what happens during pregnancy… and… the technical challenges of carrying a child.”
Informal pursuits of knowledge “…I’ve learned a lot about [discussing sexual and reproductive health] with working with [pediatric gynecologist] in the disorders of sexual development clinic.”
Barriers to initiating conversations “…[pediatric urologists are] probably uncomfortable with it because they probably haven’t received any sort of training”
Facilitators to conversations “I find they appreciate it because I’m worried about the patient as a whole.”
Desire to learn and provide competent care “…I do think that it’s a really important topic and something I want to learn more about…”
“I think I could do a better job… if I had some form of preparation I think I would be better prepared to talk to these women.”
Recommendations for a training toolkit “I find that having some sort of algorithm is helpful…starter phrases or some sort of way to make it… easy and approachable”
“I would love to have this be something that we can get practitioners to really engage in and realize that it’s not that difficult…”


Theme	Quote
Lack of formal training	“…so I think urology residency with its focus on male genital issues prepares you pretty well to talk to men about sex… But through no part in that training do I remember there being any kind of focus or formal teaching about how to talk to women about sexuality…”
Knowledge Gap	“…the more I talk about it, the more I realize I don’t know anything.” “…there’s a whole lot there that we don’t know and nobody talks about.” “…is sex painful for them… is sex a pleasurable thing for them?” “…are these women as fertile as any other woman or less fertile?” “…we have to have… a better understanding… on pregnancy and what happens during pregnancy… and… the technical challenges of carrying a child.”
Informal pursuits of knowledge	“…I’ve learned a lot about [discussing sexual and reproductive health] with working with [pediatric gynecologist] in the disorders of sexual development clinic.”
Barriers to initiating conversations	“…[pediatric urologists are] probably uncomfortable with it because they probably haven’t received any sort of training”
Facilitators to conversations	“I find they appreciate it because I’m worried about the patient as a whole.”
Desire to learn and provide competent care	“…I do think that it’s a really important topic and something I want to learn more about…” “I think I could do a better job… if I had some form of preparation I think I would be better prepared to talk to these women.”
Recommendations for a training toolkit	“I find that having some sort of algorithm is helpful…starter phrases or some sort of way to make it… easy and approachable” “I would love to have this be something that we can get practitioners to really engage in and realize that it’s not that difficult…”

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