理解具有性别发育差异的青少年和年轻成人的性健康问题：一项定性研究。
Understanding sexual health concerns among adolescents and young adults with differences of sex development: a qualitative study.
机构信息
Women and Children's Division, Centre for Rare Disorders, Oslo University Hospital, Oslo, Norway.
Department of Interdisciplinary Health Sciences, Institute of Health and Society, University of Oslo, Oslo, Norway.
出版信息
Int J Qual Stud Health Well-being. 2023 Dec;18(1):2204635. doi: 10.1080/17482631.2023.2204635.
PURPOSE
Differences of sex development (DSD) are congenital conditions that involve variations in individuals' sex chromosomes, genes, external and/or internal genitalia, hormones, and/or secondary sex characteristics. This study sought to elucidate the experiences of adolescents and young adults living with DSD by focusing on their experiences of intimacy and sexual health.
METHODS
An interpretative phenomenological research design was adopted. Semi-structured qualitative interviews were conducted with 11 Norwegian adolescents and young adults aged 16-26 years who had five different DSD conditions. The interview findings were analysed by means of a reflexive thematic analysis.
RESULTS
The participants reported feeling different, both in terms of how their body functioned and how their body looked. Lack of knowledge increased this feeling of differentness. Moreover, lack of everyday language with which to talk about intimacy and sexual concerns resulted in the participants feeling stigma. Anticipating stigmatization and lacking everyday language complicated the participants' communication regarding their DSD and sexual health.
CONCLUSIONS
The sexual experiences of adolescents and young adults with DSD are diverse. Fear of stigmatization and lack of everyday language complicate communication with healthcare professionals and others. Understanding their unique needs is crucial to helping individuals achieve good sexual health.
目的
性发育差异（DSD）是一种先天性疾病，涉及个体性染色体、基因、外生殖器和/或内生殖器、激素和/或第二性特征的变化。本研究通过关注患有 DSD 的青少年和年轻人的亲密关系和性健康体验，旨在阐明他们的经历。
方法
采用解释性现象学研究设计。对 11 名年龄在 16-26 岁之间、患有五种不同 DSD 病症的挪威青少年和年轻人进行了半结构式定性访谈。通过反思性主题分析对访谈结果进行了分析。
结果
参与者报告说，他们感觉自己与众不同，无论是身体的功能还是身体的外观。缺乏知识加剧了这种不同感。此外，缺乏日常语言来谈论亲密关系和性问题，导致参与者感到耻辱。对耻辱的预期和缺乏日常语言使参与者在沟通 DSD 和性健康方面变得复杂。
结论
患有 DSD 的青少年和年轻人的性体验是多种多样的。对耻辱的恐惧和缺乏日常语言使与医疗保健专业人员和其他人的沟通变得复杂。了解他们的独特需求对于帮助个人实现良好的性健康至关重要。
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