Top

Published in:

01-06-2010 | Original Research

Interest and Beliefs About BRCA Genetic Counseling Among At-Risk Latinas in New York City

Authors: Katarina M. Sussner, Lina Jandorf, Hayley S. Thompson, Heiddis B. Valdimarsdottir

Published in: Journal of Genetic Counseling | Issue 3/2010

Abstract

Background: Latinas are less likely to use genetic services (counseling and testing) for hereditary breast and/or ovarian cancer risk compared to other ethnic groups. Meanwhile, little is known about barriers to genetic counseling among Latinas at increased risk of inherited breast cancer. Methods: A two-phase pilot study was conducted to examine interest, barriers and beliefs about BRCA genetic counseling among at-risk Latinas in New York City and explore the potential for developing a culturally-tailored narrative educational tool for use in future studies. Phase 1 included quantitative telephone interviews (N = 15) with bilingual participants with a personal diagnosis at a young age and/or family history of breast and/or ovarian cancer. Quantitative results informed development of a narrative prototype educational presentation viewed by a subset of participants (N = 10) in Phase 2 focus groups. Results: Despite barriers, including lack of awareness/knowledge, concerns related to learning cancer risks of family members, and concerns about cost/health insurance, participants reported positive attitudes, beliefs and interest in learning about BRCA genetic counseling. Further, significant increases in knowledge were demonstrated from pre-post presentation (p = 0.04). Conclusion: There is an unmet need to educate at-risk Latinas about BRCA genetic counseling. Culturally-tailored educational materials including narratives may increase knowledge about BRCA genetic counseling among this underserved group. The effectiveness of these approaches should be tested in future research with larger samples.

Abraido-Lanza, A. F., Armbrister, A. N., Florez, K. R., & Aguirre, A. N. (2006). Toward a theory-driven model of acculturation in public health research. American Journal of Public Health, 96(8), 1342–1346.PubMedPubMedCentralCrossRef

Ajzen, I., & Fishbein, M. (1980). Understanding attitudes and predicting behavior. Englewood Cliffs: Prentice-Hall.

American Cancer Society. (2006). Cancer facts and figures for Hispanics/ Latinos 2006–2008.

American Society of Clinical Oncology. (2003). American society of clinical oncology policy statement updated: genetic testing for cancer susceptibility. Journal of Clinical Oncology, 21(12), 2397–2406.CrossRef

Bandura, A. (1977). Self-efficacy: toward a unifying theory of behavioral change. Psychology Reviews, 84(2), 191–215.CrossRef

Bandura, A. (1986). Social foundations of thought and action: A social cognitive theory. Englewood Cliffs: Prentice Hall.

Browner, C. H., & Preloran, H. M. (1999). Male partners’ role in Latinas’ amniocentesis decisions. Journal of Genetic Counseling, 8, 85–108.PubMedCrossRef

Borrayo, E. A. (2004). Where’s Maria? A video to increase awareness about breast cancer and mammograply screening among low-literacy Latinas. Preventive Medicine, 39, 99–110.PubMedCrossRef

Chen, S. N., & Parmigiani, G. (2007). Meta-analysis of BRCA1 and BRCA2 penetrance. Journal of Clinical Oncology, 25(11), 1329–1333.PubMedCrossRef

Chen, W. Y., Garber, J. E., Higham, S., et al. (2002). BRCA1/2 genetic testing in the community setting. Journal of Clinical Oncology, 20(22), 4485–4492.PubMedCrossRef

Claus, E. B., Schildkraut, J. M., Thompson, W. D., & Risch, N. J. (1996). The genetic attributable risk of breast and ovarian cancer. Cancer, 77(11), 18–24.CrossRef

Davis, T. C., Williams, M. V., Marin, E., Parker, R. M., & Glass, J. (2002). Health literacy and cancer communication. CA Cancer Journal Clinics, 52(3), 134–149.CrossRef

Donovan, K. A., & Tucker, D. C. (2000). Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample. Behavioral Medicine, 23, 15–36.CrossRef

Fishbein, M., & Ajzen, I. (1975). Belief, attitude, intention, and behavior: An introduction to theory and research. Reading: Addison-Wesley.

Fishbein, M., & Yzer, M. C. (2003). Using theory to design effective health behavior interventions. Communication Theory, 13(2), 164–183.CrossRef

Florez, K. R., Aguirre, A. N., Viladrich, A., Cespedes, A., De la Cruz, A. A., & Abraido-Lanza, A. F. (2009). Fatalism or destiny? A qualitative study and interpretative framework on Dominican women’s breast cancer beliefs. Journal Immigrant Minority Health, 11(4), 291–301.CrossRef

Frank, T. S., Deffenbaugh, A. M., Reid, J. E., et al. (2002). Clinical characteristics of individuals with germline mutations in BRCA1 and BRCA2: analysis of 10, 000 individuals. Journal of Clinical Oncology, 20(6), 1480–1490.PubMedCrossRef

Green, M. C. (2006). Narratives and cancer communication. Journal of Communication, 56, S163–S189.CrossRef

Green, M. C., & Brock, T. C. (2000). The role of transportation in the persuasiveness of public narratives. Journal Personality Social Psychology, 79(5), 701–721.CrossRef

Hahn, E. A., Cella, D., Dobrez, D., Shiomoto, G., Marcus, E., Taylor, S. G., et al. (2004). The talking touchscreen: a new approach to outcomes assessment in low literacy. Psycho-Oncology, 13(2), 86–95.PubMedCrossRef

Hall, M., & Olopade, O. I. (2005). Confronting genetic testing disparities: knowledge is power. Journal of American Medical Association, 293(14), 1783–1785.CrossRef

Hall, M. J., & Olopade, O. I. (2006). Disparities in genetic testing: thinking outside the BRCA box. Journal of Clinical Oncology, 24(14), 2197–2203.PubMedCrossRef

Heck, J. E., Franco, R., Jurkowski, J. M., & Gorin, S. S. (2008). Awareness of genetic testing for cancer among United States Hispanics: the role of acculturation. Community Genetics, 11(1), 36–42.PubMed

Houts, P. S., Doak, C. C., Doak, L. G., & Loscalzo, M. J. (2006). The role of pictures in improving health communication: a review of research on attention, comprehension, recall, and adherence. Patient Education & Counseling, 61(2), 173–190.CrossRef

Hughes, C., Fasaye, G. A., & LaSalleVH, F. C. (2003). Sociocultural influences on participation in genetic risk assessment and testing among African American women. Patient Education & Counseling, 51, 107–14.CrossRef

Janz, N. K., & Becker, M. H. (1984). The health belief model: a decade later. Health Education Quarterly, 11, 1–47.PubMedCrossRef

Jibaja, M. L., Kingery, P., Neff, N. E., Smith, O., Bowman, J., & Holcomb, J. D. (2000). Tailored, interactive soap operas for breast cancer education of high-risk Hispanic women. Journal of Cancer Education, 15(4), 237–42.PubMed

Kreuter, M. W., Green, M. C., Cappella, J. N., Slater, M. D., Wise, M. E., Storey, D., et al. (2007). Narrative communication in cancer prevention and control: a framework to guide research and application. Annals Behavioral Medicine, 33(3), 221–235.CrossRef

Lagos, V. I., Perez, M. A., Ricker, C. N., Blazer, K. R., Santiago, N. M., Feldman, N., et al. (2008). Social-cognitive aspects of underserved Latinas preparing to undergo genetic cancer risk assessment for hereditary breast and ovarian cancer. Psychooncology, 17(8), 774–82.PubMedCrossRef

Lantz, P. M., Mujahid, M., Schwartz, K., et al. (2006). The influence of race, ethnicity, and individual socioeconomic factors on breast cancer stage at diagnosis. American Journal of Public Health, 96(12), 2173–2178.PubMedPubMedCentralCrossRef

Lee, R., Metrikin, M., Beattie, M., Joseph, G., Braithwaite, D., Lamvik, K., et al. (2009). Evaluation of a cancer risk educational intervention tool for underserved women. Meeting abstracts from the Third International Symposium on Hereditary Breast and Ovarian Cancer. Current Oncology, 16(5).

Lev, E.-L. (1997). Bandura’s theory of self-efficacy: applications to oncology. Scholarly Inquiry Nursing Practice, 11(1), 21–37.

MacDonald, D. J., Sarna, L., Giger, J. N., Van Servellen, G., Bastani, R., & Weitzel, J. N. (2008). Comparison of Latina and non-Latina white women’s beliefs about communicating genetic cancer risk to relatives. Journal Health Communication, 13(5), 465–79.PubMedCrossRef

Marin, G., Sabogal, F., Marin, B. V., Otero-Sabogal, R., & Perez-Stable, E. J. (1987). Development of a short acculturation scale for Hispanics. Hispanic Journal Behavioral Sciences, 9, 183–205.CrossRef

Matthews, A. K., Cummings, S., Thompson, S., Wohl, V., List, M., & Olopade, O. I. (2000). Genetic testing of African Americans for susceptibility to inherited cancers: use of focus groups to determine factors contributing to participation. Psychooncology, 18(2), 1–19.

Miki, Y., Swensen, J., Shattuck-Eidens, D., et al. (1994). A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science, 266, 66–71.PubMedCrossRef

Nelson, H. D., Huffman, L. H., Fu, R., & Harris, E. L. (2005). Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer suspectibility: systemic evidence review for the U.S. preventive services task force. Annals of Internal Medicine, 143(5), 362–379.PubMedCrossRef

Noll, W. W., Reid, J. E., Burbridge, L. A., et al. (2007). Prevalence of BRCA1 and BRCA2 mutations is similar in non-Ashkenzai women of different ethnic backgrounds undergoing genetic testing. 7 A.D. Sep 7; 2007. Poster presented at the 2007 Breast Cancer Symposium at the Annual Meeting of the American Society of Clinical Oncology.

Olopade, O. I. (2004). Genetics in clinical cancer care: a promise unfulfilled among minority populations. Cancer Epidemiology Biomarkers & Prevention, 13(11), 1683–1686.

Penchaszadeh, V. B. (2001). Genetic counseling issues in Latinos. Genetic Testing, 5(3), 193–200.PubMedCrossRef

Perez-Stable, E. (1987). Issues in Latino health care. Western Journal of Medicine, 146, 213–218.PubMedPubMedCentral

Perez-Stable, E. J., Sabogal, F., Otero-Sabogal, R., Hiatt, R. A., & McPhee, S. J. (1992). Misconceptions about cancer among Latinos and Anglos. Journal of American Medical Association, 268(22), 3219–3223.CrossRef

Ramirez, A. G., Aparicio-Ting, F. E., Miguel, S., de Majors, S., & Miller, A. R. (2006). Interest, awareness, and perceptions of genetic testing among Hispanic family members of breast cancer survivors. Ethnicity & Disease, 16(2), 398–403.

Ricker, C. N., Hiyama, S., Fuentes, S., Feldman, N., Kumar, V., Uman, G. C., et al. (2007). Beliefs and interest in cancer risk in an underserved Latino cohort. Preventive Medicine, 44(3), 241–5.PubMedCrossRef

Rosenstock, I. M. (1974). Historical origins of the health belief model. Health Education Monograph, 2, 328–335.CrossRef

Schneider, K. A. (1997). Genetic counseling for BRCA1/BRCA2 testing. Genetic Testing, 1(2), 91–98.PubMedCrossRef

Sheeran, P., & Orbell, S. (2000). Using implementation intentions to increase attendance for cervical cancer screening. Health Psychology, 29(3), 283–289.CrossRef

Sheeran, P., Conner, M., & Norman, P. (2001). Can the theory of planned behavior explain patterns of health behavior change? Health Psychology, 20(1), 12–19.PubMedCrossRef

Singer, E., Antonucci, T., & Hoewyk, J. V. (2004). Racial and ethnic variations in knowledge and attitudes about genetic testing. Genetic Testing, 8(1), 31–43.PubMedCrossRef

Suarez, L. (1994). Pap smear and mammogram screening in Mexican American women: the effects of acculturation. American Journal of Public Health, 84, 742–746.PubMedPubMedCentralCrossRef

Sussner, K. M., Thompson, H. S., Valdimarsdottir, H., Redd, W. H., & Jandorf, L. (2009). Acculturation and familiarity with attitudes toward and beliefs about genetic testing for cancer risk within Latinas in East Harlem, New York City. Journal of Genetic Counseling, 18(1), 60–71.PubMedCrossRef

The Pew Research Center for the People and the Press. (2006). Online Papers Modestly Boost Newspaper Readership.

Thompson, H. S., Valdimarsdottir, H. B., Duteau-Buck, C., Guevarra, J., Bovbjerg, D. H., Richmond-Avellaneda, C., et al. (2002). Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiology Biomarkers & Prevention, 11, 1579–1585.

Thompson, H. S., Valdimarsdottir, H. B., Jandorf, L., & Redd, W. (2003). Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women. Patient Education & Counseling, 51, 217–227.CrossRef

Thompson, H. S., Valdimarsdottir, H. B., Winkel, G., Jandorf, L., & Redd, W. (2004). The group-based medical mistrust scale: psychometric properties and association with breast cancer screening. Preventive Medicine, 38, 209–218.PubMedCrossRef

U.S. Census Bureau. (2008). U.S. Hispanic population surpasses 45 million now 15 percent of total. 5-1-2008. Washington, D.C., U.S. Department of Commerce.

U.S. Census Bureau News. (2004). Census bureau projects tripling of Hispanic and Asian populations in 50 years; Non-Hispanic whites may drop to half of total population.

Vadaparampil, S. T., Wideroff, L., Breen, N., & Trapido, E. (2006). The impact of acculturation on awareness of genetic testing for increased cancer risk among Hispanics in the year 2000 National Health Interview Survey. Cancer Epidemiology Biomarkers & Prevention, 15(4), 618–623.CrossRef

Watlington, A. T., Byers, T., Mouchawar, J., Sauaia, A., & Ellis, J. (2007). Does having insurance affect differences in clinical presentation between Hispanic and non-hispanic White women with breast cancer? Cancer, 109(10), 2093–2099.PubMedCrossRef

Weitzel, J. N., Lagos, V., Blazer, K. R., et al. (2005). Prevalence of BRCA mutations and founder effect in high-risk Hispanic families. Cancer Epidemiology Biomarkers & Prevention, 14(7), 1666–1671.CrossRef

Wideroff, L., Vadaparampil, S. T., Breen, N., Croyle, R. T., & Freedman, A. N. (2003). Awareness of genetic testing for increased cancer risk in the year 2000 national health interview survey. Community Genetics, 6(3), 147–156.PubMed

Williams, M. V., Parker, R. M., Baker, D. W, Parikh, N. S., Pitkin, K., Coates, W. C., et al. (2002). Inadequate functional health literacy among patients at two public hospitals. Journal of American Medical Association, 1677–1682, 12-6-1995.

Wilkin, H. A., Valente, T. W., Murphy, S., Cody, M. J., Huang, G., & Beck, V. (2007). Does entertainment-education work with Latinos in the United States? Identification and the effects of a telenovela breast cancer storyline. Journal of Health Communication, 12(5), 455–469.PubMedCrossRef

Wooster, R., Bignell, G., Lanchaster, J., et al. (1995). Identification of the breast cancer susceptibility gene BRCA2. Nature, 378, 789–792.PubMedCrossRef

Title: Interest and Beliefs About BRCA Genetic Counseling Among At-Risk Latinas in New York City
Authors: Katarina M. Sussner
Lina Jandorf
Hayley S. Thompson
Heiddis B. Valdimarsdottir
Publication date: 01-06-2010
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 3/2010
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-010-9282-4

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Interest and Beliefs About BRCA Genetic Counseling Among At-Risk Latinas in New York City

Abstract

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 3/2010

Genetic Counseling for Fetal Abnormalities in a South African Community

Concerns of South Korean Patients and Family Members Affected with Genetic Conditions: A Content Analysis of Internet Website Messages

Health Care Professionals’ Views of Sharing Information with Families Who Have a Child with a Genetic Condition

Publishing a Master’s Thesis: A Guide for Novice Authors

Parental Decisions Regarding a Prenatally Detected Fetal Chromosomal Abnormality and the Impact of Genetic Counseling: An Analysis of 38 Cases with Aneuploidy in Southeast Turkey

Commentary on “Life as a Pregnant Genetic Counselor”