Study Objective

To explore how women with congenital adrenal hyperplasia (CAH) describe their experiences of gender role behavior, psychosexual development, and intimate relationships. CAH results in increased androgen exposure in affected females, and is the most common reason for unclear sex at birth. Women with CAH have been studied to find answers to the role of androgens in psychosexual development. Nevertheless, factors that may account for the variability of outcomes in women with CAH are unclear.

Design, Setting and Participants

This was a qualitative study with 13 Swedish women (aged ≥18 years) with CAH. Semi-structured interviews were analyzed using inductive content analysis.

Main Outcome Measures

Direct quotes of patients’ experiences derived from interview transcripts were sorted in categories, subcategories, and according to latent theme.

Results

The main categories were “forming identity” and “establishing relationships.” Forming identity encompasses that of a girl, a tomboy, and/or a woman. Establishing relationships focuses on intimate relationships, pregnancy, and parenthood. A latent theme was interpreted as “shifting perspectives,” with CAH being the main focus of some participants’ lives but a side issue for others.

Conclusion

These women's experiences are varied and describe shifting perspectives on how much CAH affects their lives. Health care providers can play an important role in helping women with CAH to separate what is caused by the condition and what is not. The long-term goal is to help girls and women to feel in control of their condition across their whole life.

中文翻译：

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先天性肾上腺皮质增生妇女的身份，性和父母身份。

研究目的

探讨患有先天性肾上腺皮质增生（CAH）的女性如何描述其性别角色行为，性心理发展和亲密关系的经历。CAH导致受影响女性的雄激素暴露增加，这是出生时性别不清楚的最常见原因。已对患有CAH的妇女进行了研究，以寻找有关雄激素在心理性发展中的作用的答案。然而，尚不清楚可能导致CAH妇女结局变化的因素。

设计，设置和参与者

这是对13名瑞典CAH（≥18岁）妇女的定性研究。使用归纳式内容分析法对半结构式访谈进行了分析。

主要观察指标

从访谈笔录中获得的患者经历的直接报价按类别，子类别进行分类，并根据潜在主题进行分类。

结果

主要类别是“形成身份”和“建立关系”。形成身份包括女孩，假小子和/或女人的身份。建立关系的重点是亲密关系，怀孕和为人父母。一个潜在的主题被解释为“转变观点”，CAH是某些参与者生活的主要焦点，而另一些参与者则是附带问题。

结论

这些妇女的经历是多种多样的，并描述了对CAH多少影响其生活的观点的转变。卫生保健提供者可以在帮助患有CAH的妇女区分病因和病因方面发挥重要作用。长期目标是帮助女孩和妇女一生控制自己的状况。