Literature DB >> 30195565

"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 Young Women With Spina Bifida.

Courtney S Streur1, Christine L Schafer2, Valerie P Garcia2, Daniela A Wittmann2.   

Abstract

INTRODUCTION: Although pediatric urologists have taken responsibility for initiating discussions on sexual and reproductive health with spina bifida patients, research shows that very few girls and women with spina bifida have ever discussed this topic with any physician. AIM: We sought to better understand pediatric urologists' gaps in knowledge and training needs in the sexual and reproductive health education of women with spina bifida with the goal of creating a tool kit to equip providers 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 tool kit until thematic saturation was reached. The interviews were recorded and transcribed verbatim, then analyzed using grounded theory by 3 independent reviewers. MAIN OUTCOME MEASURES: To evaluate the perspectives and practices of pediatric urologists, we identified the overlapping themes of the interviews. Consensus on themes was reached.
RESULTS: 10 Pediatric urologists participated in the study, including 5 men and 5 women, of whom 4 were fellows and 6 were attending physicians (mean years of practice 18, range 6-31 years). The mean number of patients followed up in the respective spina bifida clinics or by the provider was 434 (range 24-1,500). The following themes regarding pediatric urologists' experience providing sexual and reproductive health education to women with spina bifida emerged. Pediatric urologists': (i) lack of formal training; (ii) knowledge gaps such as spina bifida sexuality, fertility, and pregnancy experience; (iii) barriers to having sexual and reproductive health conversations such as lack of comfort and lack of time; (iv) facilitators of these conversations such as a long-term relationship with the patient and the patient's own initiative; (v) desire to learn and provide competent care; and (vi) recommendations for a web-based tool kit that would include content to address the knowledge gaps and training about how to start sexual and reproductive health conversations. CLINICAL IMPLICATIONS: These findings can provide the beginning concepts for the development of training on providing sexual and reproductive health education for pediatric urologists' care for women with spina bifida. STRENGTHS & LIMITATIONS: This study gives the perspectives of 10 pediatric urologists with a diversity of backgrounds, but all of whom care for a large number of spina bifida patients. This does not give the perspectives of the spina bifida women themselves, which will be evaluated in the next phase of the study.
CONCLUSION: Pediatric urologists are not trained and do not feel prepared to provide sexual and reproductive health education for girls and women with spina bifida. However, they do see it as their scope of practice and wish to acquire competence in this area. Streur CS, Schafer CL, Garcia VP, et al. "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 Young Women With Spina Bifida. J Sex Med 2018;15:1403-1413.
Copyright © 2018 International Society for Sexual Medicine. Published by Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Myelomeningocele; Reproductive Health; Sexual Health; Sexuality; Spina Bifida; Urologist; Urology

Mesh:

Year:  2018        PMID: 30195565      PMCID: PMC6317522          DOI: 10.1016/j.jsxm.2018.08.001

Source DB:  PubMed          Journal:  J Sex Med        ISSN: 1743-6095            Impact factor:   3.802


  21 in total

1.  Sexual and reproductive health in young people with spina bifida.

Authors:  S M Sawyer; K V Roberts
Journal:  Dev Med Child Neurol       Date:  1999-10       Impact factor: 5.449

2.  Improved survival among children with spina bifida in the United States.

Authors:  Mikyong Shin; James E Kucik; Csaba Siffel; Chengxing Lu; Gary M Shaw; Mark A Canfield; Adolfo Correa
Journal:  J Pediatr       Date:  2012-06-23       Impact factor: 4.406

3.  Sexual function of young women with myelomeningocele.

Authors:  Xavier Gamé; Jacques Moscovici; Julien Guillotreau; Mathieu Roumiguié; Pascal Rischmann; Bernard Malavaud
Journal:  J Pediatr Urol       Date:  2013-08-27       Impact factor: 1.830

4.  Pregnancy among mothers with spina bifida.

Authors:  Courtney L Shepard; Phyllis L Yan; John M Hollingsworth; Kate H Kraft
Journal:  J Pediatr Urol       Date:  2017-09-06       Impact factor: 1.830

5.  The effect of spinal cord level on sexual function in the spina bifida population.

Authors:  N G Lee; E Andrews; I Rosoklija; T Logvinenko; E K Johnson; R D Oates; C R Estrada
Journal:  J Pediatr Urol       Date:  2015-03-12       Impact factor: 1.830

6.  Declines in Unintended Pregnancy in the United States, 2008-2011.

Authors:  Lawrence B Finer; Mia R Zolna
Journal:  N Engl J Med       Date:  2016-03-03       Impact factor: 91.245

7.  Reproductive health of young adults with physical disabilities in the U.S.

Authors:  Annie-Laurie McRee; Abigail A Haydon; Carolyn Tucker Halpern
Journal:  Prev Med       Date:  2010-09-17       Impact factor: 4.018

8.  Sexual functioning in adolescents and young adults with spina bifida.

Authors:  Diana D Cardenas; Tari D Topolski; Catherine J White; John F McLaughlin; William O Walker
Journal:  Arch Phys Med Rehabil       Date:  2008-01       Impact factor: 3.966

9.  Family and peer issues among adolescents with spina bifida and cerebral palsy.

Authors:  R W Blum; M D Resnick; R Nelson; A St Germaine
Journal:  Pediatrics       Date:  1991-08       Impact factor: 7.124

10.  Sexual function in adult patients with spina bifida and its impact on quality of life.

Authors:  Jenny Lassmann; Francisco Garibay Gonzalez; Jeanne B Melchionni; Patrick S Pasquariello; Howard M Snyder
Journal:  J Urol       Date:  2007-08-16       Impact factor: 7.450

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  6 in total

1.  "He told me it would be extremely selfish of me to even consider [having kids]": The importance of reproductive health to women with spina bifida and the lack of support from their providers.

Authors:  Courtney S Streur; Christine L Schafer; Valerie P Garcia; Elisabeth H Quint; David E Sandberg; Claire Z Kalpakjian; Daniela A Wittmann
Journal:  Disabil Health J       Date:  2019-06-15       Impact factor: 2.554

2.  "I Tell Them What I Can Feel and How Far My Legs Can Bend": Optimizing Sexual Satisfaction for Women With Spina Bifida.

Authors:  Courtney S Streur; Christine L Schafer; Valerie P Garcia; Elisabeth H Quint; John S Wiener; David E Sandberg; Claire Z Kalpakjian; Daniela A Wittmann
Journal:  J Sex Med       Date:  2020-07-12       Impact factor: 3.802

3.  Reproductive Health in Women with Physical Disability: A Conceptual Framework for the Development of New Patient-Reported Outcome Measures.

Authors:  Claire Z Kalpakjian; Jodi M Kreschmer; Mary D Slavin; Pamela A Kisala; Elisabeth H Quint; Nancy D Chiaravalloti; Natalie Jenkins; Tamara Bushnik; Dagmar Amtmann; David S Tulsky; Roxanne Madrid; Rebecca Parten; Michael Evitts; Carolyn L Grawi
Journal:  J Womens Health (Larchmt)       Date:  2020-05-19       Impact factor: 2.681

4.  "If Everyone Else Is Having This Talk With Their Doctor, Why Am I Not Having This Talk With Mine?": The Experiences of Sexuality and Sexual Health Education of Young Women With Spina Bifida.

Authors:  Courtney S Streur; Christine L Schafer; Valerie P Garcia; Elisabeth H Quint; David E Sandberg; Daniela A Wittmann
Journal:  J Sex Med       Date:  2019-04-19       Impact factor: 3.802

Review 5.  Multidisciplinary spina bifida clinic: the Chicago experience.

Authors:  Nathan A Shlobin; Elizabeth B Yerkes; Vineeta T Swaroop; Sandi Lam; David G McLone; Robin M Bowman
Journal:  Childs Nerv Syst       Date:  2022-07-23       Impact factor: 1.532

6.  How to Discuss Sexual Health With Girls and Young Women With Spina Bifida: A Practical Guide for the Urologist.

Authors:  Courtney S Streur; David E Sandberg; Claire Z Kalpakjian; Daniela A Wittmann; Elisabeth H Quint
Journal:  Urology       Date:  2020-07-22       Impact factor: 2.649

  6 in total

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