Sexual Education for Children With Spina Bifida – UROP Spring Symposium 2021

Sexual Education for Children With Spina Bifida

Neela Nallamothu


Pronouns: She/Her

Research Mentor(s): Courtney Shepard, Assistant Professor of Urology
Research Mentor School/College/Department: Department of Urology, Michigan Medicine
Presentation Date: Thursday, April 22, 2021
Session: Session 1 (10am-10:50am)
Breakout Room: Room 11
Presenter: 7

Event Link


Sexual education in America has many gaps, but one of the most glaring is the lack of sexual education for adolescents with physical disabilities. Children with Spina Bifida often enter puberty earlier than their peers. Therefore, it is crucial for them to learn about and prepare for their adult bodies at a young age. A comprehensive sexual education program was developed for each stage of a child’s physical and mental development by, first, creating a preliminary curriculum based on an analysis of existing sexual education programs for able-bodied and physically-disabled children. Qualitative interviews with physicians of varying specialties and with adults living with Spina Bifida were then performed in order to adapt the program to the specific needs of children with Spina Bifida. The program is designed specifically for children, adolescents, and teenagers with Spina Bifida and incorporates information that is appropriate for each successive life stage: childhood, adolescence, and young adulthood. The curriculum is separated into these three stages, and each stage includes videos and discussion topics about changing bodies, navigating adulthood, and handling sexuality. Those who opt to engage with the program are encouraged to discuss these sensitive topics with their parents and doctors and find their agency regarding their sexuality and their independence. The program will be beta tested with a cohort of children ages 10-19 with Spina Bifida, who will be asked to complete surveys and knowledge tests, in order to determine the efficacy of the curriculum. This program is one of few that specifically address sexual education for children with disabilities. While students are left out of their sexual education programs due to their conditions, this campaign aims to normalize sexuality and aid young kids with Spina Bifida in preparing for adulthood.

Authors: Neela Nallamothu, Mieke Hart, Lillian Lai, Erica Odukoya, Courtney Shepard-Steur
Research Method: Clinical Research

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