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.

中文翻译：

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年轻的声音：具有两性/性别发展差异的青少年的性健康和过渡护理需求-一项初步研究

研究目的

确定从小儿到成人卫生保健过渡期间具有两性/性发育差异（DSD）的当前这一代青年的性健康和福祉需求。

设计

定性叙事分析，定量描述和调查表。

环境

同行支持网络和门诊诊所。

参加者

18名年龄在16-21岁之间的性交/ DSD青少年。

干预措施

半结构化访谈和/或调查。

主要观察指标

年轻人了解身体差异，他们的性经历和动机（例如，代理，享乐），身体形象，医疗保健内部和外部的性传播以及目前和理想的过渡医疗之间的差距。分析了调查和访谈的定量和定性内容，以识别关键主题。

结果

我们发现（1）对于医疗保健提供者，他们需要对性别变异的含义持开放态度：（2）需要持续的支持和有关与诊断和治疗有关的现实生活的信息以及性方面的经验方面；以及（3）与多学科团队中的提供者以及与父母之间存在沟通障碍。

结论

以性别为中心的青少年以用户为中心的护理观点包括他们的故事和对改善服务的反馈。这项初步研究表明，青少年希望通过与他们的特定问题相关的方式来更多地参与性健康护理。他们对信息的渴望随着年龄的增长而增加，并突显了医疗服务提供者可以将患者带入身体的最重要的一课：如何护理，尊重和享受他们。