Feeling at risk: how women interpret their familial breast cancer risk.

Women's inaccuracy in recalling their breast cancer risk, even immediately after genetic counseling, has received much attention. However, scarce data are available about how women describe their risk in their own words and about what the risk information actually means to them. The present study aims to address interpretations questions and to assess whether these are congruent with the objective risk. Face-to-face interviews were conducted with 123 women immediately after their (initial) counseling session. N-Vivo software was used to describe the data. The level of accuracy of recall depended strongly on the leniency of the criterion applied. For example, the level of verbal accuracy ranged from 25.8% (an exact match with the verbal label) to 98.4% (a more global awareness of having a high versus a low risk). In assessing the significance of personal risk information, we identified a wide variety of risk beliefs, and stress and coping responses. In general, women associated their risk with the medical options, for example, breast screening, that were available for them given their risk status. The results indicate that the accuracy of recall might be a limited outcome measure for the effectiveness of genetic counseling. First, this is because the level of accuracy of recall depends on how rigorously accuracy is defined. Secondly, because the probability of occurrence is just one of the elements comprising perceived risk, accuracy might rather apply to the distress, and to risk management behaviors that are elicited by the risk information. These beliefs that women hold about their risk status, and concomitant levels of stress should play a prominent role in genetic counseling. (c) 2004 Wiley-Liss, Inc.