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担忧与否:乳腺癌遗传咨询与低收入拉丁裔移民的沟通

To worry or not to worry: breast cancer genetic counseling communication with low-income Latina immigrants.

作者信息

Joseph Galen, Guerra Claudia

机构信息

Department of Anthropology, History and Social Medicine, University of California, San Francisco, 1450 Third Street, San Francisco, CA, 94158, USA,

出版信息

J Community Genet. 2015 Jan;6(1):63-76. doi: 10.1007/s12687-014-0202-4. Epub 2014 Aug 23.

Abstract

The purpose of this pilot study was to describe communication practices during hereditary breast cancer genetic counseling (GC) with low-income immigrant Latina patients in a public hospital setting. We utilized qualitative ethnographic methods, including direct observation of GC appointments with Latina patients at a public hospital offering free GC and BRCA testing and in-depth qualitative interviews with patients after they had received their BRCA genetic test results. Twenty-five patients participated; 20 were observed during genetic counseling appointments, and ten participated in interviews after BRCA testing with six participating in both observations and an interview. Analyses of qualitative data from observation field notes and interviews identified both strengths and limitations of current communication practices within the following themes: (1) family health history communication, (2) education regarding genes and genetics and patient information needs, (3) the purpose of the genetic test, (4) genetic test results and cancer risk, (5) building rapport and providing support, and (6) medical interpretation for monolingual Spanish speakers. As access to cancer GC expands in the public safety net settings and for the diverse populations they serve, it is critical to ensure effective communication in order for patients, whether or not they have a BRCA mutation, to understand the nature of their cancer risk and recommended methods of screening and prevention. Intervention strategies that address both structural constraints and patient-provider communication are needed to improve GC communication with immigrant Latinas, especially monolingual Spanish speakers.

摘要

这项初步研究的目的是描述在公立医院环境中,为低收入移民拉丁裔患者提供遗传性乳腺癌遗传咨询(GC)期间的沟通实践。我们采用了定性人种学方法,包括直接观察在一家提供免费GC和BRCA检测的公立医院与拉丁裔患者进行的GC预约,以及在患者收到BRCA基因检测结果后对他们进行深入的定性访谈。25名患者参与其中;20名患者在遗传咨询预约期间接受了观察,10名患者在BRCA检测后参与了访谈,其中6名患者既参与了观察又参与了访谈。对观察现场记录和访谈中的定性数据进行分析,在以下主题中确定了当前沟通实践的优势和局限性:(1)家族健康史沟通;(2)关于基因和遗传学的教育以及患者的信息需求;(3)基因检测的目的;(4)基因检测结果和癌症风险;(5)建立融洽关系并提供支持;(6)为只会说西班牙语的患者提供医学口译。随着在公共安全网环境中以及为其所服务的不同人群提供癌症GC的机会不断增加,至关重要的是要确保有效的沟通,以便患者,无论他们是否有BRCA突变,都能了解其癌症风险的性质以及推荐的筛查和预防方法。需要采取既能解决结构限制又能解决患者与提供者沟通问题的干预策略,以改善与移民拉丁裔,尤其是只会说西班牙语的患者的GC沟通。

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