Table 2 List of emergent themes
Theme | Example |
|---|---|
Timing | There is no perfect time to undergo predictive genetic testing |
Young women appreciate learning their familial mutation status in adolescence even though concepts might not be fully understood at that time | |
A balanced presentation of the genetic information for adolescent or young children is important and information needs change with time | |
Having time in between learning a parent’s carrier status and undergoing personal genetic testing is appreciated, as it is used to process and contemplate the information | |
Many choose to undergo predictive genetic testing at a time when they can immediately take action if found to be positive, because cancer is the problem and not the gene itself | |
Age is an important determinant of when to undergo predictive genetic testing, but opinions about the best age differ | |
Disclosure | Young women want to learn from a parent, and prefer both parents to be present for the status disclosure of a familial BRCA mutation |
Those not informed by a parent had the desire to be tested soon after discovering their familial BRCA mutation to gain information that they had been deprived of | |
Nonparental disclosure and self-discovery of a familial BRCA mutation might generate additional stress | |
Risk Perceptions | Many of the young women believe they are mutation carriers before undergoing testing |
Prototypical or familial cancer experience influences pretest and posttest cancer worry and cancer screening desires | |
All understand their posttest risk of developing breast or ovarian cancer | |
Cancer Worry | Posttest breast cancer worry is reduced with respect to their offspring’s risk, but remains somewhat elevated for themselves |
Posttest cancer preoccupation and worry can be related to pretest levels preoccupation and worry | |
Most seek an active and healthy lifestyle as a way to influence and control their cancer risk | |
Cancer Burden | Need for supportive counseling because of the lack of social prototype for non-carrier women |
The potential of transmitting a genetic mutation to children has an influence on decision to undergo genetic testing and potential feelings of guilt | |
Weighing the pros and cons of predictive genetic testing before having children versus after having children | |
Importance of the impact that genetic testing and genetic knowledge has beyond the individual | |
Present and future familial and social relationships are an important factor surrounding the decision to undergo predictive genetic testing | |
Feelings of survivor guilt are present in these mutation-negative young women | |
The experience of hereditary breast and ovarian cancer is not over because other family members are carriers or have yet to be tested | |
Hope | Appreciation for the various generational differences in hereditary breast and ovarian cancer families because of the gain in knowledge and options with each successive generation |
Genetic knowledge is seen as empowering at any age | |
Ability to bring awareness regarding genetic testing to their families and to others | |
Plans for the Future | Impact of a negative test result on the ability to plan for a future without cancer |
Preparation for a positive result with the development of a plan of action and the exploration of potential emotional reactions to this outcome | |
Explanatory Models for Mutation Status | Myths about non-carrier status include paternal contribution and spiritual or theological influence |
Most employ a biomedicine-based explanatory model for their carrier status |