家庭照顾,文化和沟通:韩国BRCA相关风险披露的障碍 - - 一项定性研究
Juhye Jin1, Jeehee Han2, Soo Yeon Kim3
1Department of Nursing, Korea National University of Transportation, Jeungpyeong, Chungbuk, South Korea.
Seminars in oncology nursing
|February 10, 2026
概括
患有遗传性癌症风险 (BRCA突变) 的女性面临沟通障碍,与家人分享遗传结果. 改善,文化敏感的支持对于有效的风险披露和预防至关重要.
科学领域:
- 遗传学和基因组学 遗传学和基因组学
- 在瘤学瘤学.
- 公共卫生 公共卫生
背景情况:
- 遗传性癌症综合征,就像与BRCA突变相关的综合征一样,需要家庭沟通来评估和预防风险.
- 病原性/可能病原性 (P/LP) 变体的披露至关重要,但往往不充分,只有不到50%的指数病例通知有风险的亲属.
研究的目的:
- 探索遗传性乳腺癌和卵巢癌综合征的妇女在向韩国生物亲属传达遗传检测结果时遇到的障碍.
- 从受影响和不受影响的运营商的角度了解这些沟通挑战的经验和解释.
主要方法:
- 对22名携带BRCA基因P/LP变异的妇女 (17名受影响,5名未受影响) 进行了深入采访.
- 采访发生在2020年8月至2021年11月期间,采用了面对面和小组形式.
- 诱导性内容分析应用于叙事数据,以确定与通信障碍相关的关键主题.
主要成果:
- 参与者强调,在与家人讨论遗传结果之前,需要加强信息和指导.
- 受影响的携带者经历了更大的情绪负担,平衡他们自己的癌症诊断与告知亲属的责任.
- 确定了四个主要障碍:在社会/健康环境中对BRCA的理解有限,在临床沟通期间的情绪困扰,在家庭风险沟通中未满足的期望,以及文化影响的披露决策.
结论:
- 患有P/LP BRCA变异的女性在传承性癌症风险的沟通中面临着重大,多方面的障碍.
- 披露应该重新定义为提供可操作的,预防性的信息,而不是传递坏消息.
- 医疗保健专业人员对文化敏感,逐步的沟通支持对于帮助运营商和减轻痛苦至关重要.
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