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J Genet Couns. 2017 Jun;26(3):455-468. doi: 10.1007/s10897-016-9998-x. Epub 2016 Jul 30.

"I Don't Want to Be an Ostrich": Managing Mothers' Uncertainty during BRCA1/2 Genetic Counseling.

Author information

1
Department of Advertising, STEM Translational Communication Center, UF Health Cancer Center Affiliate, University of Florida, Gainesville, FL, USA. clf196@gmail.com.
2
Department of Communication, Center for Health & Risk Communication, George Mason University, Fairfax, VA, USA. clf196@gmail.com.
3
Department of Communication, Center for Health & Risk Communication, George Mason University, Fairfax, VA, USA.
4
Department of Psychiatry, Monash University, Melbourne, VIC, Australia.
5
Memorial Sloan Kettering Cancer Center, New York City, NY, USA.
6
GeneDx, Gaithersburg, MD, USA.
7
Hamad Medical Corporation, Doha, Qatar.
8
Weill Cornell Medical College in Qatar, Al Rayyan, Qatar.

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:

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

PMID:
27473644
DOI:
10.1007/s10897-016-9998-x
[Indexed for MEDLINE]

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