Article

Engaging in Medical Vigilance: Understanding the Personal Meaning of Breast Surveillance

Meghan L. Underhill-Blazey

Suzanne S. Dickerson

qualitative research, breast cancer, breast neoplasms, hereditary
ONF 2011, 38(6), 686-694. DOI: 10.1188/11.ONF.686-694

Purpose/Objectives: To explore how women with a hereditary risk of breast cancer experience living with and managing that risk through surveillance.

Research Approach: Hermeneutic phenomenology guided the qualitative research design.

Setting: The Facing Our Risk of Cancer Empowered online organization.

Participants: 9 women undergoing breast surveillance for hereditary breast cancer risk recruited through purposive sampling.

Methodologic Approach: Data were collected through semistructured interviews lasting about an hour. A team approach guided data analysis of transcribed interview text based on a modified Diekelman, Allen, and Tanner method.

Main Research Variables: Lived experience and personal meaning of hereditary breast cancer risk and surveillance.

Findings: Hereditary risk of breast cancer involves a change in one's view of life and necessitates engaging in medical vigilance, often making these women feel ill when they are otherwise healthy. Most have personal family experiences of cancer and value surveillance, although they live with the "what if" of a cancer diagnosis when waiting for surveillance results. All women discussed a need for accurate information, support, and guidance from healthcare providers.

Conclusions: Women became their own experts at living with and managing hereditary breast cancer risk. Experiences and interactions within the healthcare system influenced the meaning of breast surveillance.

Interpretation: Nurses should be aware of the high level of knowledge among women living with hereditary risk and respect their knowledge by providing accurate and informed care. That can occur only through proper education of nurses and all healthcare professionals working with women at risk for hereditary breast cancer so that they understand current standards of care and how hereditary breast cancer risk is defined and managed.

Jump to a section

    References

    Annells, M. (1996). Hermeneutic phenomenology: Philosophical perspectives and current use in nursing research. Journal of Advanced Nursing, 23, 705-713. doi:10.1111/j.1365-2648.1996.tb00041.x
    Appleton, S., Fry, A., Rees, G., Rush, R., & Cull, A. (2000). Psychosocial effects of living with an increased risk of breast cancer: An exploratory study using telephone focus groups. Psycho-Oncology, 9, 511-521. doi:10.1002/1099-1611
    Armour, M., Rivaux, S.L., & Bell, H. (2009). Using context to build rigor: Application to two hermeneutic phenomenological studies. Qualitative Social Work, 8(1), 101-122. doi:10.1177/1473325008100424
    Brain, K., Henderson, B.J., Tyndel, S., Bankhead, C., Watson, E., Clements, A., & Austoker, J. (2008). Predictors of breast cancer-related distress following mammography screening in younger women on a family history breast screening programme. Psycho-Oncology, 17, 1180-1188. doi:10.1002/pon.1355
    Cohen, M., Kahn, D., & Steeves, R. (2000). Hermeneutic phenomenological research: A practical guide for nurse researchers. Thousand Oaks, CA: Sage.
    Dagan, E., & Gil, S. (2005). BRCA1/2 mutation carriers: Psychological distress and ways of coping. Journal of Psychosocial Oncology, 22(3), 93-106.
    Dagan, E., & Goldblatt, H. (2009). The twilight zone between health and sickness: A qualitative exploration with asymptomatic BRCA1 and 2 mutation carriers. Women and Health, 49, 263-279. doi:10.1080/03630240903158321
    Diekelmann, N., Allen, D., & Tanner, C. (1989). The NLN criteria for appraisal of baccalaureate programs: A critical hermeneutic analysis. New York, NY: National League for Nursing.
    Essink-Bot, M.L., Rijnsburger, A.J., van Dooren, S., de Koning, H., & Seynaeve, C. (2006). Women's acceptance of MRI in breast cancer surveillance because of a familial or genetic predisposition. Breast, 15, 673-676. doi:10.1016/j.breast.2006.02.001
    Gilbert, F.J., Cordiner, C.M., Affleck, I.R., Hood, D.B., Mathieson, D., & Walker, L.G. (1998). Breast screening: The psychological sequelae of false-positive recall in women with and without a family history of breast cancer. European Journal of Cancer, 34, 2010-2014.
    Hamilton, R., Williams, J.K., Bowers, B.J., & Calzone, K. (2008). Life trajectories, genetic testing, and risk reduction decisions in 18-39 year old women at risk for hereditary breast and ovarian cancer. Journal of Genetic Counseling, 18, 147-159. doi:10.1007/s10897-9200-1
    Hamilton, R., Williams, J.K., Skirton, H., & Bowers, B.J. (2009). Living with genetic test results for hereditary breast and ovarian cancer. Journal of Nursing Scholarship, 41, 276-283.
    Hamilton, R.J., & Bowers, B.J. (2007). The Theory of Genetic Vulnerability: A Roy model exemplar. Nursing Science Quarterly, 20, 254-264. doi:10.1177/0894318407303127
    Heidegger, M. (1962). Being and time. Malden, MA: Blackwell.
    Henderson, B.J., Tyndel, S., Brain, K., Clements, A., Bankhead, C., Austoker, J., … Macmillan, D. (2008). Factors associated with breast cancer-specific distress in younger women participating in a family history mammography screening programme. Psycho-Oncology, 17, 74-82. doi:10.1002/pon.1201
    Katapodi, M.C., Lee, K.A., Facione, N.C., & Dodd, M.J. (2004). Predictors of perceived breast cancer risk and the relation between perceived risk and breast cancer screening: A meta-analytic review. Preventive Medicine, 38, 388-402. doi:10.1016/j.ypmed.2003.11.012
    Kriege, M., Brekelmans, C.T., Boetes, C., Besnard, P.E., Zonderland, H.M., Obdeijn, I.M., … Klijn, J.G. (2004). Efficacy of MRI and mammography for breast-cancer screening in women with a familial or genetic predisposition. New England Journal of Medicine, 351, 427-437.
    Lehman, C.D., Gatsonis, C., Kuhl, C.K., Hendrick, R.E., Pisano, E.D., Hanna, L., … Schnall, M.D. (2007). MRI evaluation of the contralateral breast in women recently diagnosed breast cancer. New England Journal of Medicine, 356, 1295-1303. doi:10.1056/NEJMoa065447
    Lynch, H.T., Snyder, C.L., & Lynch, J.F. (2009). Genetic counseling and the advanced practice oncology nursing role in a hereditary cancer prevention clinic: Hereditary breast cancer focus (part II). Breast Journal, 15(Suppl. 1), S11-S19. doi:10.1111/j.1524-4741.2009.00803.x
    National Cancer Institute. (2010). Fact sheet: Probability of breast cancer in American women. Retrieved from http://www.cancer.gov/images/documents/bd21295f-31fa-419b-b249-54311ca969a1/Fs5_6.pdf
    National Comprehensive Cancer Network. (2011). NCCN Clinical Practice Guidelines in Oncology: Genetic/familial high-risk assessment: Breast and ovarian [v.1.2011]. Retrieved from http://www.nccn.org/professionals/physician_gls/PDF/genetics_screening.pdf
    Norris, J., Spelic, S.S., Snyder, C., & Tinley, S. (2009). Five families living with hereditary breast and ovarian cancer risk. Clinical Journal of Oncology Nursing, 13, 73-80. doi:10.1188/09.CJON.73-80
    O'Neill, S.M., Rubinstein, W.S., Sener, S.F., Weissman, S.M., Newlin, A.C., West, D.K., … Edelman, R.R. (2009). Psychological impact of recall in high-risk breast MRI screening. Breast Cancer Research and Treatment, 115, 365-371. doi:10.1007/s10549-008-0140-0
    Parsons, E.P., Beale, V., Bennett, H., Jones, J., & Lycett, E.J. (2000). Reassurance through surveillance in the face of clinical uncertainty: The experience of women at risk of familial breast cancer. Health Expectations, 3, 263-273. doi:10.1046/j.1369-6513.2000.00097.x
    Plager, K.A. (1994). Hermeneutic phenomenology: A methodology for family health and health promotion studyin nursing. In P.E. Benner (Ed.), Interpretive phenomenology: Embodiment, caring, and ethics in health and illness (pp. 65-83). Thousand Oaks, CA: Sage.
    Rijnsburger, A.J., Essink-Bot, M.L., van Dooren, S., Borsboom, G.J., Seynaeve, C., Bartels, C.C., … de Koning, H.J. (2004). Impact of screening for breast cancer in high-risk women on health-related quality of life. British Journal of Cancer, 91(1), 69-76. doi:10.1038/sj.bjc.6601912
    Sandelowski, M. (2004). Using qualitative research. Qualitative Health Research, 14, 1366-1386. doi:10.1177/1049732304269672
    Snyder, C.L., Lynch, J.F., & Lynch, H.T. (2009). Genetic counseling and the advanced practice oncology nursing role in a hereditary cancer prevention clinic: Hereditary breast cancer focus (part I). Breast Journal, 15, (Suppl. 1), S2-S10. doi:10.1111/j.1524-4741.2009.00802.x
    Tyndel, S., Austoker, J., Henderson, B.J., Brain, K., Bankhead, C., Clements, A., & Watson, E.K. (2007). What is the psychological impact of mammographic screening on younger women with a family history of breast cancer? Findings from a prospective cohort study by the PIMMS Management Group. Journal of Clinical Oncology, 25, 3823-3830. doi:10.1200/JCO.2007.11.0437
    van Dooren, S., Seynaeve, C., Rijnsburger, A.J., Duivenvoorden, H.J., Essink-Bot, M.L., Tilanus-Linthorst, M.M., … Tibben, A. (2005). Exploring the course of psychological distress around two successive control visits in women at hereditary risk of breast cancer. European Journal of Cancer, 41, 1416-1425.
    Warner, E. (2008). The role of magnetic resonance imaging in screening women at high risk of breast cancer. Topics in Magnetic Resonance Imaging, 19, 163-169. doi:110.1097/RMR.1090b1013e31818bc31994
    Warner, E., Messersmith, H., Causer, P., Eisen, A., Shumak, R., & Plewes, D. (2008). Systematic review: Using magnetic resonance imaging to screen women at high risk for breast cancer. Annals of Internal Medicine, 148, 671-679.
    Watson, E.K., Henderson, B.J., Brett, J., Bankhead, C., & Austoker, J. (2005). The psychological impact of mammographic screening on women with a family history of breast cancer—A systematic review. Psycho-Oncology, 14, 939-948. doi:10.1002/pon.903