Young Voices: Sexual Health and Transition Care Needs in Adolescents with Intersex/Differences of Sex Development—A Pilot Study

Study Objective: To determine the sexual health and well-being needs of current generations of youth with intersex/Differences of Sex Development (DSD) during transition from pediatric to adult health care. Design: Qualitative narrative analyses, quantitative descriptives, and questionnaires. Setting: Peer support networks and outpatient clinics. Participants: Eighteen adolescents aged 16-21 years with intersex/DSD. Interventions: Semi-structured interviews and/or survey. Main Outcome Measures: Youths learning about bodily differences, their sexual experiences and motives (eg, agency, pleasure), body image, sexual communication inside and outside of health care, and perceived gaps between current and ideal transitional care. Quantitative and qualitative content of the surveys and interviews were analyzed to identify key topics. Results: We found that (1) there is a need for open-minded perceptions of health care providers about what it means to have a sex variation: (2) there is a need for continued support and information about lived realities relating to the diagnosis and treatments as well as experiential aspects of sexuality: and (3) there are communication obstacles with providers in a multidisciplinary team setting as well as with parents. Conclusion: A user-centered care perspective for adolescents with sex variations includes their stories and feedback toward service improvement. This pilot study shows that adolescents want to be more involved in their sexual health care in ways that connect to their specific questions. Their desire for information increases as they grow older, and underlines the most essential lesson that health care providers can bring their patients about their bodies: how to care for, respect, and enjoy them.