了解黑人卵巢癌患者基因检测的促进因素和障碍:一项利用患者和提供者访谈数据的定性研究

IF 1.9 4区 医学 Q3 GENETICS & HEREDITY
Chelsea Salyer, Erika Gazetta, Cassandra Voth, Lori Spoozak, Jason Glenn, Jennifer Klemp, Lauren Nye, Andrea Jewell, Megha Ramaswamy
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引用次数: 0

摘要

研究一致表明,黑人卵巢癌患者不太可能接受指南推荐的基因检测。目前的研究从关键利益相关者的角度探讨了黑人妇女进行基因检测的障碍。我们对患者(n = 5)、高级执业医师(n = 4)、遗传咨询师(n = 5)和医生(n = 6)进行了半结构化访谈。使用框架分析来确定主题。所有患者均为黑人,并完成了基因检测。在提供者中,13%被确定为黑人,大多数(66%)专注于妇科癌症护理。研究出现了四个主题,第一个主题是参与者认为所有女性都被自己的癌症诊断压得喘不过气来,不应该优先考虑基因检测。然而,黑人妇女承受着来自种族主义的额外压力,这给遗传服务增加了额外的障碍。其次,由于长期的结构性种族主义造成的社会经济劣势,黑人女性无法获得基因检测。第三,黑人女性可能不愿意完成基因检测,因为她们不信任提供者和医疗体系。最后,由于文化障碍和提供者对黑人妇女遗传风险的误解,黑人妇女在癌症诊断前接受遗传服务的可能性较小。我们的研究结果强调了黑人女性在遗传咨询和测试方面的障碍,其中可能包括个人和结构性种族主义以及偏见。为了提高基因检测的接受度,至关重要的是,医疗服务提供者应优先考虑与黑人妇女的文化需求进行沟通和患者教育,并提供社会支持,帮助黑人妇女进行癌症治疗。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Understanding facilitators and barriers to genetic testing for black ovarian cancer patients: A qualitative study utilizing interview data with patients and providers

Understanding facilitators and barriers to genetic testing for black ovarian cancer patients: A qualitative study utilizing interview data with patients and providers

Studies consistently demonstrate that Black ovarian cancer patients are less likely to receive guideline-recommended genetic testing. The current study explored barriers to genetic testing among Black women from the perspective of key stakeholders. We conducted semi-structured interviews with patients (n = 5), advanced practice providers (n = 4), genetic counselors (n = 5), and physicians (n = 6). A framework analysis was used to identify themes. All patients identified as Black and completed genetic testing. Among providers, 13% identified as Black and the majority (66%) focused on gynecologic cancer care. Four themes emerged, and the first was that participants felt all women are too overwhelmed by their cancer diagnosis to prioritize genetic testing. However, Black women experience additional stress from racism that adds an additional barrier to genetic services. Second, Black women are unable to access genetic testing due to socioeconomic disadvantages related to a long history of structural racism. Third, Black women may be unwilling to complete genetic testing due to mistrust of providers and the healthcare system. Finally, Black women are less likely to receive genetic services prior to their cancer diagnosis due to cultural barriers and provider misconceptions about Black women's hereditary risk. Our findings highlight barriers to genetic counseling and testing among Black women, which may include individual and structural racism as well as bias. To increase uptake of genetic testing, it is critical for providers to prioritize communication and patient education that is culturally responsive to the needs of Black women and offer social supports to help Black women navigate their cancer care.

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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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