直面不确定性。关于照顾具有性别特征差异的年轻人的医学记录。
Enduring uncertainties. Medical accounts on caring for young people with variations of sex characteristics.
作者信息
Reber Nina, De Clercq Eva
机构信息
University of Basel, Institute for Biomedical Ethics, Bernoullistrasse 28, 4056 Basel, Switzerland (CH).
University of Zürich, Institute of Biomedical Ethics and History of Medicine, Winterthurerstrasse 30, 8006 Zürich, Switzerland (CH).
出版信息
Dialogues Health. 2022 May 13;1:100014. doi: 10.1016/j.dialog.2022.100014. eCollection 2022 Dec.
OBJECTIVES
The diagnosis of intersex or variations of sex characteristics (VSC) often has a big impact on families who fear social stigmatization. Research has shown that intersex populations often experience important health disparities and that poor mental health and daily function are common among youth with VSC. The present study aimed to explore what healthcare professionals of adolescents and young adults (AYA) with VSC find important in terms of care to this group of patients.
METHODS
Semi-structured interviews were conducted with Swiss healthcare providers involved in the care of youth born with an intersex variation. The qualitative data were analyzed using reflexive thematic analysis.
RESULTS
Analysis resulted in six major themes: (1) With regard to patients' and families lived experiences, interviewees reported that fertility was as a major issue for parents but not for intersex youth as they were said to live in the moment. (2) Respondents considered various forms of psycho-social care (professional support, peer support and informal support from family and friends) to be of fundamental importance for their patients, but many of them seemed critical about support from advocacy groups and activists. All healthcare providers reported significant gaps in (3) the transition process and (4) the establishment of multidisciplinary care teams due to structural, provider- and patient-related barriers. (5) Participants were in favor of a more holistic and patient-centred care approach and (6) were critical about the medicalized use of DSD (disorder of sex development) with patients and families.
CONCLUSION
These findings suggest that although clinicians work hard to implement a holistic approach to care, their intentions are often undercut by a desire to hold a position of medical control. Healthcare professionals need to come to see medical uncertainty not only as a threat but also as an opportunity.
目的
两性畸形或性特征变异（VSC）的诊断往往对担心社会污名化的家庭产生重大影响。研究表明，两性畸形人群经常经历重大的健康差异，心理健康不佳和日常功能障碍在患有VSC的青少年中很常见。本研究旨在探讨为患有VSC的青少年和青年（AYA）提供医疗服务的专业人员认为对这类患者的护理而言哪些方面很重要。
方法
对参与护理患有两性畸形变异的青少年的瑞士医疗服务提供者进行了半结构化访谈。使用反思性主题分析法对定性数据进行了分析。
结果
分析得出六个主要主题：（1）关于患者及其家庭的生活经历，受访者报告称生育是父母的一个主要问题，但对两性畸形青少年来说并非如此，因为据说他们活在当下。（2）受访者认为各种形式的心理社会护理（专业支持、同伴支持以及来自家人和朋友的非正式支持）对他们的患者至关重要，但他们中的许多人似乎对倡导团体和活动家的支持持批评态度。所有医疗服务提供者都报告称，由于结构、提供者和患者相关的障碍，在（3）过渡过程和（4）多学科护理团队的建立方面存在重大差距。（5）参与者赞成采用更全面、以患者为中心的护理方法，并且（6）对将性发育障碍（DSD）医学化应用于患者及其家庭持批评态度。
结论
这些发现表明，尽管临床医生努力实施全面的护理方法，但他们的意图往往因想要占据医疗控制地位的愿望而受到削弱。医疗专业人员不仅需要将医疗不确定性视为一种威胁，还应将其视为一个机会。
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