“I Don’t Want to Be an Ostrich”: Managing Mothers’ Uncertainty during BRCA1/2 Genetic Counseling

Carla L Fisher, Thomas Roccotagliata, Camella J. Rising, David W. Kissane, Emily A. Glogowski, Carma L Bylund

Research output: Contribution to journalArticleResearchpeer-review

6 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)455-468
Number of pages14
JournalJournal of Genetic Counseling
Volume26
Issue number3
DOIs
Publication statusPublished - 1 Jun 2017

Keywords

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

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