Date of Award

Spring 2022

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Jessica M. Fairey

Abstract

Many barriers prevent individuals with disabilities from receiving appropriate sexual health education (SHE), including deficits in socialcommunication skills and lack of resources and trained educators. There are few guidelines specifically addressing how to accommodate for providing SHE to individuals with disabilities. Healthcare professionals who are trained in working with adolescents with disabilities, such as pediatric genetic counselors, developmental-behavioral pediatricians (DBP), and neurodevelopmental disabilities (NDD) subspecialty pediatricians, could fill this gap. The purpose of the current study was to assess what informational items pediatric genetic counselors, DBP, and NDD subspecialty pediatricians felt were most essential to include in SHE for children and adolescents with autism spectrum disorder (ASD), intellectual disability (ID), or both diagnoses to help guide future recommendations for healthcare providers.

In the current investigation, we surveyed 18 genetic counselors and 23 pediatricians to assess what information is most important to include in SHE delivered during the pre-puberty and post-puberty time frames. The online questionnaire included 32 ranking questions for pre-puberty informational items and for post-puberty informational items. It also included questions regarding demographic information, frequency of contact with individuals with ASD or ID, and free response questions regarding their experiences providing SHE.

Four out of the top 10-ranked items for each group were deemed essential to include in SHE delivered pre-puberty and post-puberty, and four additional items were deemed essential to include in SHE delivered pre-puberty only. We also found statistically significant differences between average ratings of all four survey groups (pre-puberty and post-puberty item ratings for pediatricians and genetic counselors). Several themes emerged from the participants’ free response answers, including sexual abuse prevention and the rights of those with ASD and those with ID to appropriate SHE.

Our findings may help define future professional guidelines regarding what is most important to include in SHE for individuals with ASD or ID, as well as graduate medical training curriculum. The results of this study also underscore the importance of interdisciplinary efforts to educate individuals with neurodevelopmental disorders by highlighting how pediatricians may act as the primary provider of SHE, while genetic counselors may play a role in patient advocacy.

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