title: "I Don't Want to Be an Ostrich": Managing Mothers' Uncertainty during BRCA1/2 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.
authors.affiliation: Department of Advertising, STEM Translational Communication Center, UF Health Cancer Center Affiliate, University of Florida, Gainesville, FL, USA. clf196@gmail.com.|Department of Communication, Center for Health & Risk Communication, George Mason University, Fairfax, VA, USA. clf196@gmail.com.
authors.forename: Carla L
authors.initials: CL
authors.lastname: Fisher
authors.affiliation: Department of Communication, Center for Health & Risk Communication, George Mason University, Fairfax, VA, USA.
authors.forename: Thomas
authors.initials: T
authors.lastname: Roccotagliata
authors.affiliation: Department of Communication, Center for Health & Risk Communication, George Mason University, Fairfax, VA, USA.
authors.forename: Camella J
authors.initials: CJ
authors.lastname: Rising
authors.affiliation: Department of Psychiatry, Monash University, Melbourne, VIC, Australia.|Memorial Sloan Kettering Cancer Center, New York City, NY, USA.
authors.forename: David W
authors.initials: DW
authors.lastname: Kissane
authors.affiliation: GeneDx, Gaithersburg, MD, USA.
authors.forename: Emily A
authors.initials: EA
authors.lastname: Glogowski
authors.affiliation: Memorial Sloan Kettering Cancer Center, New York City, NY, USA.|Hamad Medical Corporation, Doha, Qatar.|Weill Cornell Medical College in Qatar, Al Rayyan, Qatar.
authors.forename: Carma L
authors.initials: CL
authors.lastname: Bylund
mesh_terms: D000293:Adolescent; D000328:Adult; D001943:Breast Neoplasms / Q000175:diagnosis / Q000235:genetics*; D003142:Communication; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D035501:Uncertainty; D055815:Young Adult
keywords: BRCA1; BRCA2; Breast cancer; Communication; Coping; Disease risk; Family communication; Genetic counseling; Genetic testing; Qualitative research; Uncertainty