“I don’t want to be an ostrich”: Managing mothers’ uncertainty during BRCA1/2 genetic counseling Journal Article
| Authors: | Fisher, C. L.; Roccotagliata, T.; Rising, C. J.; Kissane, D. W.; Glogowski, E. A.; Bylund, C. L. |
| Article 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. © 2016, National Society of Genetic Counselors, Inc. |
| Keywords: | breast cancer; communication; brca1; brca2; qualitative research; genetic testing; genetic counseling; family communication; uncertainty; coping; disease risk |
| Journal Title: | Journal of Genetic Counseling |
| Volume: | 26 |
| Issue: | 3 |
| ISSN: | 1059-7700 |
| Publisher: | John Wiley & Sons, Inc. |
| Date Published: | 2017-06-01 |
| Start Page: | 455 |
| End Page: | 468 |
| Language: | English |
| DOI: | 10.1007/s10897-016-9998-x |
| PROVIDER: | scopus |
| PUBMED: | 27473644 |
| DOI/URL: | |
| Notes: | Article -- Export Date: 1 June 2017 -- Source: Scopus |
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