“I Don’t Want to Be an Ostrich”: Managing Mothers’ Uncertainty during BRCA1/2 Genetic Counseling
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.
KeywordsUncertainty Communication Breast cancer Genetic testing Family communication BRCA1 BRCA2 Genetic counseling Qualitative research Disease risk Coping
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.
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