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“I Don’t Want to Be an Ostrich”: Managing Mothers’ Uncertainty during BRCA1/2 Genetic Counseling

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Journal of Genetic Counseling

Abstract

Families who face genetic disease risk must learn how to grapple with complicated uncertainties about their health and future on a long-term basis. Women who undergo BRCA 1/2 genetic testing describe uncertainty related to personal risk as well as their loved ones’, particularly daughters’, risk. The genetic counseling setting is a prime opportunity for practitioners to help mothers manage uncertainty in the moment but also once they leave a session. Uncertainty Management Theory (UMT) helps to illuminate the various types of uncertainty women encounter and the important role of communication in uncertainty management. Informed by UMT, we conducted a thematic analysis of 16 genetic counseling sessions between practitioners and mothers at risk for, or carriers of, a BRCA1/2 mutation. Five themes emerged that represent communication strategies used to manage uncertainty: 1) addresses myths, misunderstandings, or misconceptions; 2) introduces uncertainty related to science; 3) encourages information seeking or sharing about family medical history; 4) reaffirms or validates previous behavior or decisions; and 5) minimizes the probability of personal risk or family members’ risk. Findings illustrate the critical role of genetic counseling for families in managing emotionally challenging risk-related uncertainty. The analysis may prove beneficial to not only genetic counseling practice but generations of families at high risk for cancer who must learn strategic approaches to managing a complex web of uncertainty that can challenge them for a lifetime.

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References

  • Aasen, T., & Skolbekken, J. A. (2014). Preparing for and communicating uncertainty in cancer genetic counselling sessions in Norway: an interpretative phenomenological analysis. Health, Risk & Society, 16(4), 370–389.

  • Banning, J. H. (2003). Ecological sentence synthesis. Retrieved from http://mycahs.colostate.edu/James.H.Banning/PDFs/Ecological%20Sentence%20Synthesis.pdf.

  • Berger, C. R., & Calabrese, R. J. (1975). Some explorations in initial interaction and beyond: Toward a developmental theory of interpersonal communication. Human Communication Research, 1(2), 99–112.

    Article  Google Scholar 

  • Bjorvatn, C., Eide, G. E., Hanestad, B. R., Øyen, N., Havik, O. E., Carlsson, A., & Berglund, G. (2007). Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. Journal of Genetic Counseling, 16, 211–222.

    Article  PubMed  Google Scholar 

  • Bjorvatn, C., Eide, G. E., Hanestad, B. R., & Havik, O. E. (2008). Anxiety and depression among subjects attending genetic counseling for hereditary cancer. Patient Education and Counseling, 71, 234–243.

    Article  PubMed  Google Scholar 

  • Borzekowski, D. L., Guan, Y., Smith, K. C., Erby, L. H., & Roter, D. L. (2014). The Angelina effect: Immediate reach, grasp, and impact of going public. Genetics in Medicine, 16(7), 516–521.

    Article  PubMed  Google Scholar 

  • Bowen, D. J., Harris, J., Jorgensen, C. M., Myers, M. F., & Kuniyuki, A. (2010). Socioeconomic influences on the effects of a genetic testing direct-to-consumer marketing campaign. Public Health Genomics, 13(3), 131–142.

    Article  CAS  PubMed  Google Scholar 

  • Brashers, D. E. (2001). Communication and Uncertainty Management. Journal of Communication, 51(3), 477–497.

    Article  Google Scholar 

  • Brashers, D. E. (2007). Communication and uncertainty management. In B. Whaley & W. Samter (Eds.), Explaining communication: contemporary theories and exemplars (pp. 223–241). Mahwah: Lawrence Erlbaum Associates.

    Google Scholar 

  • Brashers, D. E., Neidig, J. L., Russell, J. A., Cardillo, L. W., Haas, S. M., Dobbs, L. K., et al. (2003). The medical, personal, and social causes of uncertainty in HIV illness. Issues in Mental Health Nursing, 24(5), 497–522.

    Article  PubMed  Google Scholar 

  • Brashers, D. E., Neidig, J. L., & Goldsmith, D. J. (2004). Social support and the management of uncertainty for people living with HIV or AIDS. Health Communication, 16(3), 305–331.

  • Brashers, D. E., Hsieh, E., Neidig, J. L., & Reynolds, N. R. (2006). Managing uncertainty about illness: Health care providers as credible authorities. In Le Poire, B. A., & Dailey, R. M. (Eds.), Applied interpersonal communication matters: Family, health, and community relations, 219–240: New York: Peter Lang.

  • Bylund, C. L., Fisher, C. L., Brashers, D., Edgerson, S., Glogowski, E. A., Boyar, S. R., & Kissane, D. (2012). Sources of uncertainty about daughters’ breast cancer risk that emerge during genetic counseling consultations. Journal of Genetic Counseling, 21(2), 292–304.

    Article  PubMed  Google Scholar 

  • Clark, S., Bluman, L. G., Borstelmann, N., Regan, K., Winer, E. P., Rimer, B. K., & Skinner, C. S. (2000). Patient motivation, satisfaction, and coping in genetic counseling and testing for BRCA1 and BRCA2. Journal of Genetic Counseling, 9(3), 219–235.

    Article  CAS  PubMed  Google Scholar 

  • Daly, K. J. (2007). Qualitative methods for family studies and human development. Thousand Oaks: Sage Publications.

  • Dean, M. (2016). Celebrity health announcements and online health information seeking: an analysis of Angelina Jolie’s preventative health decision. Health Communication, 31, 752–761.

    Article  PubMed  Google Scholar 

  • Douglas, H. A., Hamilton, R. J., & Grubs, R. E. (2009). The effect of BRCA gene testing on family relationships: a thematic analysis of qualitative interviews. Journal of Genetic Counseling, 18(5), 418–435.

    Article  PubMed  Google Scholar 

  • Eijzenga, W., Hahn, D. E., Aaronson, N. K., Kluijt, I., & Bleiker, E. M. (2014). Specific psychosocial issues of individuals undergoing genetic counseling for cancer–a literature review. Journal of Genetic Counseling, 23(2), 133–146.

    Article  PubMed  Google Scholar 

  • Evans, D. G., Barwell, J., Eccles, D. M., Collins, A., Izatt, L., Jacobs, C., et al. (2014). The Angelina Jolie effect: how high celebrity profile can have a major impact on provision of cancer related services. Breast Cancer Research, 16(5), 442–448.

    Article  PubMed  PubMed Central  Google Scholar 

  • Fisher, C. L. (2010). Coping with breast cancer across adulthood: emotional support communication in the mother-daughter bond. Journal of Applied Communication Research, 38, 386–411.

    Article  Google Scholar 

  • Fisher, C. L. (2014). Coping together, side by side: Enriching mother-daughter communication across the breast cancer journey. New York: Hampton Press.

    Google Scholar 

  • Fisher, C. L., Maloney, E., Glogowski, E., Hurley, K., Edgerson, S., Lichtenthal, W. G., & Bylund, C. (2014). Talking about familial breast cancer risk topics and strategies to enhance mother–daughter interactions. Qualitative Health Research, 24(4), 517–535.

    Article  PubMed  Google Scholar 

  • Frost, C. J., Venne, V., Cunningham, D., & Gerritsen-McKane, R. (2004). Decision making with uncertain information: learning from women in a high risk breast cancer clinic. Journal of Genetic Counseling, 13(3), 221–236.

    Article  PubMed  Google Scholar 

  • Gaff, C. L., Galvin, K. M., & Bylund, C. L. (2010). Facilitating family communication about genetics in practice. In C. L. Gaff & C. L. Bylund (Eds.), Family communication about genetics: theory and practice (pp. 243–272). New York: Oxford University Press.

    Google Scholar 

  • Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: strategies for qualitative research. Chicago: Aldine.

    Google Scholar 

  • Hallowell, N., Statham, H., Murton, F., Green, J., & Richards, M. (1997). “Talking about chance”: the presentation of risk information during genetic counseling for breast and ovarian cancer. Journal of Genetic Counseling, 6(3), 269–286.

    Article  CAS  PubMed  Google Scholar 

  • Jolie, A. (2013). My medical choice. The New York Times. Retrieved from http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html.

  • Jolie Pitt, A. (2015). Angelina Jolie Pitt: Diary of a surgery. The New York Times. Retrieved from http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html.

  • Juthe, R. H., Zaharchuk, A., & Wang, C. (2014). Celebrity disclosures and information seeking: the case of Angelina Jolie. Genetics in Medicine, 17(7), 545–553.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ladouceur, R., Gosselin, P., & Dugas, M. J. (2000). Experimental manipulation of intolerance of uncertainty: a study of a theoretical model of worry. Behaviour Research and Therapy, 38(9), 933–941.

    Article  CAS  PubMed  Google Scholar 

  • Lupton, D. (1994). Toward the development of critical health communication praxis. Health Communication, 6(1), 55–67.

    Article  Google Scholar 

  • Maloney, E., Edgerson, S., Robson, M., Offit, K., Brown, R., Bylund, C., & Kissane, D. W. (2012). What women with breast cancer discuss with clinicians about risk for their adolescent daughters. Journal of Psychosocial Pncology, 30(4), 484–502.

    Article  Google Scholar 

  • Mouchawar, J., Hensley-Alford, S., Laurion, S., Ellis, J., Kulchak-Rahm, A., Finucane, M. L., & Ritzwoller, D. (2005). Impact of direct-to-consumer advertising for hereditary breast cancer testing on genetic services at a managed careorganization: a naturally-occurring experiment. Genetics in Medicine, 7, 191–197.

    Article  PubMed  Google Scholar 

  • Owen, W. F. (1984). Interpretive themes in relational communication. The Quarterly Journal of Speech, 70(3), 274–287.

    Article  Google Scholar 

  • Peterson, S. K. (2005). The role of the family in genetic testing: theoretical perspectives, current knowledge, and future directions. Health Education & Behavior, 32(5), 627–639.

    Article  Google Scholar 

  • Rosen, N. O., & Knäuper, B. (2009). A little uncertainty goes a long way: state and trait differences in uncertainty interact to increase information seeking but also increase worry. Health Communication, 24(3), 228–238.

    Article  PubMed  Google Scholar 

  • Roter, D. L., Erby, L. H., Larson, S., & Ellington, L. (2007). Assessing oral literacy demand in genetic counseling dialogue: preliminary test of a conceptual framework. Social Science & Medicine, 65(7), 1442–1457.

    Article  Google Scholar 

  • Sachs, L., Taube, A., & Tishelman, C. (2001). Risk in numbers – Difficulties in the transformation of genetic knowledge from research to people: The case of hereditary cancer. Acta Oncologica, 40(4), 445–453. doi:10.1080/02841860119276.

    Article  CAS  PubMed  Google Scholar 

  • Sandelowski, M., & Leeman, J. (2012). Writing usable qualitative health research findings. Qualitative Health Research, 22(10), 1404–1413. doi:10.1177/1049732312450368.

    Article  PubMed  Google Scholar 

  • Segal, J., Esplen, M. J., Toner, B., Baedorf, S., Narod, S., & Butler, K. (2004). An investigation of the disclosure process and support needs of BRCA1 and BRCA2 carriers. American Journal of Medical Genetics, 125A(3), 267–272. doi:10.1002/ajmg.a.20485.

    Article  PubMed  Google Scholar 

  • Strauss, A., & Corbin, J. (1998). Basics of qualitative research: procedures and techniques for developing grounded theory. Thousand Oaks: Sage Publishing.

    Google Scholar 

  • Sussner, K. M., Edwards, T., Villagra, C., Rodriguez, M. C., Thompson, H. S., Jandorf, L., & Valdimarsdottir, H. B. (2015). BRCA genetic counseling among at-risk Latinas in New York City: New beliefs shape new generation. Journal of Genetic Counseling, 24, 134–148.

    Article  PubMed  Google Scholar 

  • Tercyak, K. P., Peshkin, B. N., Streisand, R., & Lerman, C. (2001). Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-Oncology, 10(4), 336–346.

  • Thompson, S., & O’Hair, H. D. (2008). Advice-giving and the management of uncertainty for cancer survivors. Health Communication, 23(4), 340–348.

    Article  PubMed  Google Scholar 

  • Vanderpool, R. C., & Huang, B. (2010). Cancer risk perceptions, beliefs, and physician avoidance in Appalachia: results from the 2008 HINTS Survey. Journal of Health Communication, 15(sup3), 78–91.

    Article  PubMed  Google Scholar 

  • 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  Google Scholar 

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Acknowledgments

This study was funded by Oki-Data Americas. The authors dedicate this study in memory of Dale Brashers, Ph.D. and Margaret Mary Roccotagliata.

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Authors and Affiliations

  1. Department of Advertising, STEM Translational Communication Center, UF Health Cancer Center Affiliate, University of Florida, Gainesville, FL, USA

    Carla L. Fisher

  2. Department of Communication, Center for Health & Risk Communication, George Mason University, Fairfax, VA, USA

    Carla L. Fisher, Thomas Roccotagliata & Camella J. Rising

  3. Department of Psychiatry, Monash University, Melbourne, VIC, Australia

    David W. Kissane

  4. Memorial Sloan Kettering Cancer Center, New York City, NY, USA

    David W. Kissane & Carma L. Bylund

  5. GeneDx, Gaithersburg, MD, USA

    Emily A. Glogowski

  6. Hamad Medical Corporation, Doha, Qatar

    Carma L. Bylund

  7. Weill Cornell Medical College in Qatar, Al Rayyan, Qatar

    Carma L. Bylund

Authors
  1. Carla L. Fisher
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  2. Thomas Roccotagliata
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  3. Camella J. Rising
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  4. David W. Kissane
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  5. Emily A. Glogowski
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  6. Carma L. Bylund
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Correspondence to Carla L. Fisher.

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Conflict of Interest

Authors Carla L. Fisher, PhD, Thomas Roccotagliata, MA, Camella J. Rising, MS, RDN, David W. Kissane, MD, Emily A. Glogowski, MS, MSc, and Carma L. Bylund, PhD declare that they have no conflict of interest.

Human Studies and Informed Consent

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.

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Fisher, C.L., Roccotagliata, T., Rising, C.J. et al. “I Don’t Want to Be an Ostrich”: Managing Mothers’ Uncertainty during BRCA1/2 Genetic Counseling. J Genet Counsel 26, 455–468 (2017). https://doi.org/10.1007/s10897-016-9998-x

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  • DOI: https://doi.org/10.1007/s10897-016-9998-x

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