变性人和不同性别者的遗传性癌症护理经验:"性别。这是癌症风险......这是一切"。

IF 1.9 4区 医学 Q3 GENETICS & HEREDITY
Sarah Roth, Jill Owczarzak, Kellan Baker, Hannah Davidson, Leila Jamal
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引用次数: 0

摘要

在遗传咨询研究和更广泛的 LGBTQI+ 健康研究中,变性者和性别多元化者(TGD)是一个重要的群体,但其代表性不足。这种代表性不足的现象造成了医学知识生产中的排斥循环,影响了 TGD 个人接受医疗服务的质量和公平性。这一问题在癌症遗传咨询中尤为突出,在癌症遗传咨询中,癌症风险升高的 TGD 患者会接受风险评估、咨询和转介支持,而风险评估、咨询和转介支持都是基于风险数字和为顺性人制定的护理标准。医学文献中基本上没有关于 TGD 患者经历遗传性癌症综合征的记载,这给遗传学服务提供者提供包容性护理带来了挑战。为了弥补这一知识空白,我们开展了一项横断面定性研究。我们对患有遗传性癌症综合征、有此类综合征家族史或个人胸癌病史的不同性别成年人进行了 19 次半结构式访谈。我们的研究采用归纳和演绎相结合的方法进行主题分析,以阐明遗传性癌症护理如何与参与者的性别认同、性别表达和性别肯定的护理经验相交织。参与者们反思了那些让他们感到肯定或引发性别焦虑症的护理经历。与会者还讨论了降低风险的乳房切除术与顶部手术之间的相互作用,探讨了癌症风险管理与性别表达之间的共生动态。值得注意的是,与会者为医疗服务提供者确定了可操作的策略,以加强对不同性别患者的支持,包括注意使用性别语言、合作决策和传达盟友关系。这些发现为定制遗传咨询以满足 TGD 个人的独特需求提供了宝贵的见解,推动了为患有遗传性癌症综合征的 LGBTQI+ 个人提供包容性和适当护理的道路。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Experiences of hereditary cancer care among transgender and gender diverse people: "It's gender. It's cancer risk…it's everything".

Transgender and gender diverse (TGD) individuals are a significant yet underrepresented population within genetic counseling research and broader LGBTQI+ health studies. This underrepresentation perpetuates a cycle of exclusion from the production of medical knowledge, impacting the quality and equity of care received by TGD individuals. This issue is particularly poignant in cancer genetic counseling, where TGD individuals with elevated cancer risk receive risk assessment, counseling, and referral to support based on risk figures and standards of care developed for cisgender individuals. The experiences of TGD individuals navigating inherited cancer syndromes remain largely undocumented in medical literature, posing challenges to the provision of inclusive care by genetics providers. To bridge this knowledge gap, we conducted a cross-sectional qualitative study. Nineteen semi-structured interviews were held with gender diverse adults having hereditary cancer syndromes, family histories of such syndromes, or personal histories of chest cancer. Our study employed thematic analysis using combined inductive and deductive methods to illuminate how hereditary cancer care intersects with participants' gender identities, gender expression, and gender-affirming care experiences. Participants reflected on care experiences that felt affirming or triggered gender dysphoria. Participants also discussed the interplay between risk-reducing mastectomy and top surgery, exploring co-emergent dynamics between cancer risk management and gender expression. Significantly, participants identified actionable strategies for healthcare providers to enhance support for gender diverse patients, including the mindful use of gendered language, collaborative decision-making, and conveying allyship. These findings offer valuable insights into tailoring genetic counseling to meet the unique needs of TGD individuals, advancing the path toward inclusive and appropriate care for LGBTQI+ individuals with hereditary cancer syndromes.

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来源期刊
Journal of Genetic Counseling
Journal of Genetic Counseling GENETICS & HEREDITY-
CiteScore
3.80
自引率
26.30%
发文量
113
审稿时长
6 months
期刊介绍: The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.
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