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

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