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259 Aproaches and considerations of adolescents and young adults with differences of sex development when sharing information with intimate partners
  1. Kristina I Suorsa-Johnson1,
  2. Tyler Beeston2,
  3. Alexandra Britt3,
  4. Raven Burton4,
  5. Mallorie Crissler5,
  6. David E Sandberg6,7,
  7. Angela Fagerlin8
  1. 1Department of Pediatrics, University of Utah Spencer Fox Eccles School of Medicine, Salt Lake City, Utah
  2. 2Department of Psychology, University of Utah, Salt Lake City, Utah
  3. 3Department of Surgery, University of Utah Spencer Fox Eccles School of Medicine, Salt Lake City, Utah
  4. 4Department of Psychology, University of Utah, Salt Lake City, Utah
  5. 5University of North Dakota, Grand Forks, North Dakota
  6. 6Susan B. Meister Child Health Evaluation and Research (CHEAR) Center, University of Michigan, Ann Arbor, Michigan
  7. 7Department of Pediatrics, Michigan Medicine, University of Michigan, Ann Arbor, Michigan
  8. 8Department of Population Health Sciences, University of Utah Spencer Fox Eccles School of Medicine, Salt Lake City, Utah

Abstract

Introduction Adolescents and young adults (AYAs) with differences of sex development (DSD) – congenital conditions where chromosomal, gonadal, or anatomical sex development is atypical – face complicated decisions about their sexual health. Most of these decisions directly or indirectly relate to sharing information about their condition with an intimate partner. One concern for sharing information is associated shame/stigma. As part of a larger qualitative study examining the decision-making process of AYAs with DSD, this data examines AYAs’ experience making decisions about sexual health.

Methods AYAs with DSD (n=17; mean age=14.1 years; range=11–24 years) from one US children’s hospital completed an hour-long interview focused on DSD-related decision making. Depending on participant age and experience, prompts focused on sharing information with intimate partners. Interviews were recorded, transcribed, and emerging themes related to sharing information with intimate partners/sexual health were identified.

Results Of the 6 participants who reported having had an intimate partner, 67% shared DSD-specific information. In considering when to share information, being ‘comfortable’ with the other person was important. However, several participants noted keeping medical information private until they knew they wanted to spend the rest of their lives with someone. Factors impacting decision-making included: 1) confusing condition-specific information; 2) infertility; 3) internalized DSD-related stigma; and 4) concerns for enacted stigma if condition-specific information was shared with an intimate partner.

Discussion Although there has been a transition to educating AYAs with DSD about their condition, there remains a gap in addressing how AYAs use that knowledge to inform others, including intimate partners.

Conclusions Healthcare providers can help meet this need. AYAs (and providers) will also benefit from the development of sex education interventions (e.g., decision aids) to address this concern.

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