Decision-making and genetic testing for breast cancer: A grounded theory analysis

The purpose of this study was to qualitatively explore and describe the decision-making process of women facing genetic testing for breast cancer. Specific aims included: (a) to describe and explain the emerging concepts and domains associated with the phenomenon of decision-making and genetic testing for breast cancer and (b) to initiate the development of a model of this phenomenon.

Using purposive and theoretical sampling, 12 women aged 34 to 74 years were interviewed over 8 months regarding their decisions about genetic testing for breast cancer. The participants were predominantly Caucasian (100%), married (92%) and Protestant (75%). Of the 12 women, four (33%) were breast cancer survivors. At the time of the interviews, 11 women (92%) had made their decision about genetic testing.

Data analysis was conducted using the method of grounded theory first introduced by Glaser and Strauss (1967). Among the many patterns evident in the abundant data, six distinct yet related categories emerged. The categories were Barriers, Altruism, Seeking Answers, Ownership of Decision, Comparing Stories and Controlling Destiny. These six categories were further reduced to three domains: (a) Information (composed of Comparing Stories and Seeking Answers), (b) Relationship (composed of Altruism and Ownership of Decision) and (c) Coping (composed of Barriers and Controlling Destiny).

The overriding goal for the women interviewed was that of coming to terms with breast cancer. This goal was supported through the interactive processes accomplished in the Information, Relationship and Coping Domains. The women's level of uncertainty about breast cancer guided the amount of work to be accomplished in each of the three domains and, thus, the length of time spent at that level of the decision-making process. Successful processing in the three domains supported the women's ability to come to terms with breast cancer. They were then able to make a decision about genetic testing and act on it. Any unresolved tensions in the three domains prohibited the women from successfully coming to terms with breast cancer and, ultimately, deciding about genetic testing.