Sources of Uncertainty About Daughters’ Breast Cancer Risk that Emerge During Genetic Counseling Consultations

Abstract

Uncertainty is central to the experience of genetic decision making and counseling about cancer risk. Women seeking genetic counseling about their breast cancer risk may experience a great deal of uncertainty about issues related to their daughters. We used a theory of Communication and Uncertainty Management to guide analysis of sources of uncertainty about daughters that emerged during 16 video-recorded and transcribed conversations between mothers at risk for a BRCA 1/2 mutation and their genetic healthcare practitioners. An interpretive design and constant comparative method revealed three dominant patterns or themes representing sources of uncertainty mothers have relating to their daughters: disease risk, future cancer screening, and communication of related information to daughters. Both practitioners and mothers discussed these aspects of uncertainty. The findings identify the significant role uncertainty and familial concerns play in mothers' genetic testing decision making process. To assist genetic practitioners, we highlight daughter-related concerns that mothers are uncertain about and which are vital to their genetic counseling needs.

Young adult daughters of BRCA1/2 positive mothers: What do they know about hereditary cancer and how much do they worry?

“…Hence, we do not know where along the chain of family communication, the faulty information was introduced. There is prior data suggesting that it is difficult for mothers to accurately take in information about their daughters' hereditary cancer risks in the course of their genetic counseling , and it is also well known that this is a highly complex, detailed information . All daughters in our study had living mothers; future research should include daughters of deceased maternal carriers and also daughters of paternal carriers, as the psychoeducational needs of both groups may be even greater than those we found.…”

Using communication to manage uncertainty about cervical cancer screening guideline adherence among Appalachian women

“…Research utilizing the theory of communication and uncertainty management has primarily focused on various communication strategies (e.g., social support, information seeking or avoiding) people use to manage their uncertainty in various illness contexts, including HIV and AIDS (Brashers et al, 2000), cancer (Mishel et al, 2003), organ transplantation (Scott, et al, 2011), genetic testing for breast cancer (Bylund et al, 2012) and screening for cystic fibrosis (Dillard & Carson, 2005). The current investigation is one of the first to examine uncertainty management in the context of cervical cancer screening, bolstering the growing evidence for the utility of uncertainty management theory in examining uncertainty related to health behavior (i.e., screening) rather than only in relation to a particular illness.…”

19. Managing uncertainty in clinical encounters

“…For instance, a cancer patient's uncertainty about the treatment experience may be reduced when her treatment is completed; however, a different form of uncertainty emerges when she is no longer actively participating in treating the cancer and consequently worrying about future recurrence. Second, people differ in their preferences for managing uncertainty such that sometimes individuals choose to maintain or even increase their uncertainty as a management mechanism (Bylund et al 2012). For example, a patient may know his partner has tested positive for HIV/ AIDS but decide not to be tested because he does not want to burden himself with the knowledge of having the virus.…”