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

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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.

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Notes

  1. We use the term Latino or Latina except when citing works that use the term Hispanic, as Latino appears to be the preferred term used by the Mexican and Central American participants in our study.

  2. We use “SNH” throughout to protect the identity of counselors and patients.

  3. Positive test results were confirmed through a commercial laboratory; negative test results reflect the research test which included common mutations in the Hispanic population, rather than full sequencing. Since the end of our study, some of the patients who tested negative on the “Hispanic panel” (Weitzel et al. 2005; Weitzel et al. 2013) during our study have been called back and re-tested with an expanded research panel or full sequencing and deletion/duplication analysis at a commercial lab. In a few cases, patients who previously received negative results subsequently tested positive.

  4. This notation identifies the interview (QI) and the observation (LW). In cases where only one notation is present, only an interview or an observation was conducted, but not both.

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Acknowledgments

This study was supported by a grant from the UCSF Hampton Medical Research Fund. This study could not have been completed without the generosity of the counselors and patients who agreed to participate. We are extremely grateful for their participation and support throughout the study.

Compliance with ethics guidelines

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

We confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.

Conflict of interest

Galen Joseph and Claudia Guerra declare that they have no conflict of interest.

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

    Galen Joseph & Claudia Guerra

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  1. Galen Joseph
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  2. Claudia Guerra
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Correspondence to Galen Joseph.

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Joseph, G., Guerra, C. To worry or not to worry: breast cancer genetic counseling communication with low-income Latina immigrants. J Community Genet 6, 63–76 (2015). https://doi.org/10.1007/s12687-014-0202-4

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