Developing a reproductive health curriculum for adolescent girls with physical disabilities

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PROJECT SUMMARY/ABSTRACT Candidate: Courtney Streur, MD, MS is a pediatric urologist and junior health services researcher focused on understanding the sexual health and education of adolescents with physical disabilities. Dr. Streur’s long-term career goal is to become an independent clinician investigator who develops, implements, and disseminates interventions that promote the healthy sexual development of adolescent girls with physical disabilities to improve their long-term sexual health outcomes. Research Context: Adolescent girls with physical disabilities are not educated about their sexual health, which has led to unintended pregnancies, low contraceptive use, and sexual coercion and abuse. Aspects of their physical disability and medical comorbidities impact their sexual health (e.g., precocious puberty, incontinence during intercourse). Additionally, the cognitive disability frequently associated with their physical disability (e.g., executive functioning impairment) impacts their ability to learn and develop new skills. Therefore, adolescent girls with disabilities need tailored sexual health education. The goal of this study is to create and refine a novel, user-centered online sexual health curriculum. This will be tailored to girls with spina bifida and expanded to other girls with disabilities, implemented, and disseminated as a subsequent R01. Specific Aims: 1) Discover and rigorously define the highest-priority sexual health knowledge and skill attainment needs and learning style of adolescent girls with spina bifida. 2) Design and beta-test an online sexual health intervention prototype targeted to adolescent girls with spina bifida that improves their sexual health knowledge and self-management skill development. 3) Perform a pilot evaluation of the intervention prototype on key implementation outcomes. Research Plan: This uses a mixed methods implementation science approach. First we will build on existing preliminary data from adolescent girls with spina bifida, parents of girls with spina bifida, and experts in the field regarding the educational needs and learning style of the girls to inform creation of best-worst scaling surveys. The surveys will be administered to females with spina bifida ages 10-19 and parents of girls with spina bifida to identify the highest priority learning needs and best format of the intervention. This information will be used to create the first version of the curriculum, which will be refined through beta testing on dyads of adolescent girls with spina bifida and their parents. Finally, using the RE-AIM framework, we will conduct a pilot study on dyads of girls with spina bifida and their parents to evaluate key implementation measures, including reach, effectiveness, adoption, implementation, and maintenance. Career Development Plan: In parallel with this research plan and under the guidance of experienced mentors, Dr. Streur will develop expertise in intervention design and implementation and dissemination science.