Advertisement

Journal of Genetic Counseling

, Volume 26, Issue 3, pp 455–468 | Cite as

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

  • Carla L. Fisher
  • Thomas Roccotagliata
  • Camella J. Rising
  • David W. Kissane
  • Emily A. Glogowski
  • Carma L. Bylund
Original Research

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.

Keywords

Uncertainty Communication Breast cancer Genetic testing Family communication BRCA1 BRCA2 Genetic counseling Qualitative research Disease risk Coping 

Notes

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.

Compliance with Ethical Standards

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.

References

  1. 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.Google Scholar
  2. Banning, J. H. (2003). Ecological sentence synthesis. Retrieved from http://mycahs.colostate.edu/James.H.Banning/PDFs/Ecological%20Sentence%20Synthesis.pdf.
  3. 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.CrossRefGoogle Scholar
  4. 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.CrossRefPubMedGoogle Scholar
  5. 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.CrossRefPubMedGoogle Scholar
  6. 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.CrossRefPubMedGoogle Scholar
  7. 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.CrossRefPubMedGoogle Scholar
  8. Brashers, D. E. (2001). Communication and Uncertainty Management. Journal of Communication, 51(3), 477–497.CrossRefGoogle Scholar
  9. 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
  10. 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.CrossRefPubMedGoogle Scholar
  11. 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.Google Scholar
  12. 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.Google Scholar
  13. 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.CrossRefPubMedGoogle Scholar
  14. 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.CrossRefPubMedGoogle Scholar
  15. Daly, K. J. (2007). Qualitative methods for family studies and human development. Thousand Oaks: Sage Publications.Google Scholar
  16. 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.CrossRefPubMedGoogle Scholar
  17. 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.CrossRefPubMedGoogle Scholar
  18. 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.CrossRefPubMedGoogle Scholar
  19. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  20. 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.CrossRefGoogle Scholar
  21. Fisher, C. L. (2014). Coping together, side by side: Enriching mother-daughter communication across the breast cancer journey. New York: Hampton Press.Google Scholar
  22. 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.CrossRefPubMedGoogle Scholar
  23. 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.CrossRefPubMedGoogle Scholar
  24. 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
  25. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: strategies for qualitative research. Chicago: Aldine.Google Scholar
  26. 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.CrossRefPubMedGoogle Scholar
  27. Jolie, A. (2013). My medical choice. The New York Times. Retrieved from http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html.
  28. 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.
  29. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  30. 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.CrossRefPubMedGoogle Scholar
  31. Lupton, D. (1994). Toward the development of critical health communication praxis. Health Communication, 6(1), 55–67.CrossRefGoogle Scholar
  32. 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.CrossRefGoogle Scholar
  33. 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.CrossRefPubMedGoogle Scholar
  34. Owen, W. F. (1984). Interpretive themes in relational communication. The Quarterly Journal of Speech, 70(3), 274–287.CrossRefGoogle Scholar
  35. 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.CrossRefGoogle Scholar
  36. 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.CrossRefPubMedGoogle Scholar
  37. 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.CrossRefGoogle Scholar
  38. 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.CrossRefPubMedGoogle Scholar
  39. Sandelowski, M., & Leeman, J. (2012). Writing usable qualitative health research findings. Qualitative Health Research, 22(10), 1404–1413. doi: 10.1177/1049732312450368.CrossRefPubMedGoogle Scholar
  40. 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.CrossRefPubMedGoogle Scholar
  41. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: procedures and techniques for developing grounded theory. Thousand Oaks: Sage Publishing.Google Scholar
  42. 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.CrossRefPubMedGoogle Scholar
  43. 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.Google Scholar
  44. Thompson, S., & O’Hair, H. D. (2008). Advice-giving and the management of uncertainty for cancer survivors. Health Communication, 23(4), 340–348.CrossRefPubMedGoogle Scholar
  45. 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.CrossRefPubMedGoogle Scholar
  46. 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.PubMedGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2016

Authors and Affiliations

  • Carla L. Fisher
    • 1
    • 2
  • Thomas Roccotagliata
    • 2
  • Camella J. Rising
    • 2
  • David W. Kissane
    • 3
    • 4
  • Emily A. Glogowski
    • 5
  • Carma L. Bylund
    • 6
    • 7
    • 4
  1. 1.Department of Advertising, STEM Translational Communication Center, UF Health Cancer Center AffiliateUniversity of FloridaGainesvilleUSA
  2. 2.Department of Communication, Center for Health & Risk CommunicationGeorge Mason UniversityFairfaxUSA
  3. 3.Department of PsychiatryMonash UniversityMelbourneAustralia
  4. 4.Memorial Sloan Kettering Cancer CenterNew York CityUSA
  5. 5.GeneDxGaithersburgUSA
  6. 6.Hamad Medical CorporationDohaQatar
  7. 7.Weill Cornell Medical College in QatarAl RayyanQatar

Personalised recommendations