?It?s Not If I Get Cancer, It?s When I Get Cancer?: Exploring Previvors? Management of Uncertainty for Hereditary Cancer in Clinical Encounters

The purpose of this dissertation study was to identify previvors? sources of uncertainty and strategies for managing uncertainty and understand how previvors? uncertainty influence what type of preventative health decisions they make and how those decisions affect their subsequent sense of uncertainty. A previvor is an individual who is highly predisposed to breast and ovarian cancer due to a genetic mutation called BRCA1/2. Previvors have a 44 to 87 percent risk of developing cancer during their lifetime. Consequently, previvors live in a constant state of uncertainty?wondering not if they might get cancer but when?and must make certain preventative health decisions to reduce their cancer risk.

To understand previvors? health experiences, thirty-four, semi-structured interviews were conducted with female previvors. Participants were recruited through Facing Our Risk of Cancer Empowered?s (FORCE) social media pages. Interviews were recorded and transcribed. The constant comparison method was employed to code the interview transcriptions, and the interview transcripts? themes served as the units of analysis.

First, analysis revealed two main uncertainty sources for previvors?medical uncertainty and familial uncertainty. Medical uncertainty types include the unknown future, peaks and valleys associated with medical consultations, and personal cancer scares. Familial uncertainty encompasses traumatic family cancer experiences and being a mother and being present in children?s lives. Second, four uncertainty management strategies?seeking clinicians as an informational source, seeking clinicians as a partner for decision-making, seeking clinicians as an emotional support, and seeking referrals from clinicians for emotional support?were identified as ways previvors try to manage their uncertainties. Ultimately, previvors? uncertainty sources and uncertainty management strategies impacted their health decision-making with preventative surgeries as the most common health decision.

Overall, the purpose of this research was to gain insight into previvors? uncertain health experiences in order to improve patient-centered communication between previvors and clinicians and ultimately better previvors? health and well-being. This research contributes to the literature by extending the exploration of uncertainty management to a new population, reinforcing the belief that chronic uncertainty should be managed not reduced, supporting health and illness uncertainty theories, and providing practical recommendations for clinician-patient communication.