对黑人乳腺癌幸存者和幸存者的经验进行了定性研究,这些经验是在基因检测结果呈阳性后的经验
Malika Sud1, Erika Stallings2, Catharine Wang3
1Boston University Chobanian & Avedisian School of Medicine, Boston, Massachusetts, USA.
Journal of genetic counseling
|June 7, 2024
概括
携带乳腺癌遗传变异的黑人女性面临护理障碍,包括缺乏代表性和医疗种族主义. 了解这些经验对于改善这一群体的乳腺癌结果至关重要.
科学领域:
- 在瘤学瘤学.
- 遗传学 是一个遗传学.
- 社会学 社会学 社会学
背景情况:
- 黑人妇女经历了不成比例的高乳腺癌死亡率.
- 有限的研究存在于黑人妇女的经验后遗传诊断乳腺癌风险.
- 多因素影响 (环境,文化,经济,社会) 影响乳腺癌的结果.
研究的目的:
- 探索黑人女性与与乳腺癌风险增加相关的致病变体的观点和经验.
- 为了确定这一群体所遇到的护理障碍.
- 为未来的研究和干预提供信息.
主要方法:
- 与16名参与者 (有或没有乳腺癌病史) 进行半结构面试.
- 不同的人口代表 (收入,就业,保险,教育).
- 用于数据解释的反思性主题分析.
主要成果:
- 出现了五个主要主题:寻求代表,为机构提供信息,提供者影响,身份和披露以及心理健康应对.
- 确定的障碍包括缺乏支持的医疗保健提供者,医疗种族主义和癌症社区的代表性不足.
- 参与者的经验凸显了整个癌症护理连续性的未满足需求.
结论:
- 医疗保健提供者可以成为促进者或障碍者,以照顾具有遗传癌症风险的黑人妇女.
- 医疗种族主义和缺乏代表性严重阻碍了医疗保健的获得和质量.
- 这项研究强调了在癌症遗传学和为黑人妇女提供护理方面需要文化敏感,包容性的方法.
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