“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

Collaborative Approaches and Methods to Ethical Healthcare Research

This panel seeks to bring together faculty and students to generate conversation regarding health communication ethics and qualitative research. The chair (Jennifer Whalen) has provided a panel with a variety of approaches to healthcare in order to engage in a discussion regarding research and approaches regarding about medical ethics. The goal is to provide a reflexive approach to a multitude of methods regarding health communication. Dr. Bartesaghi plans to moderate the session

Celebrity Health Announcements and Online Health Information Seeking: An Analysis of Angelina Jolie’s Preventative Health Decision

On May 14, 2013, Angelina Jolie disclosed she carries BRCA1, which means she has an 87% risk of developing breast cancer during her lifetime. Jolie decided to undergo a preventative bilateral mastectomy (PBM), reducing her risk to 5%. The purpose of this study was to analyze the type of information individuals are exposed to when using the Internet to search health information regarding Jolie’s decision. Qualitative content analysis revealed four main themes—information about genetics, information about a PBM, information about health care, and information about Jolie’s gender identity. Broadly, the identified websites mention Jolie’s high risk for developing cancer due to the genetic mutation BRCA1, describe a PBM occasionally noting reasons why she had this surgery and providing alternatives to the surgery, discuss issues related to health care services, costs, and insurances about Jolie’s health decision, and portray Jolie as a sexual icon, a partner to Brad Pitt, a mother of six children, and an inspirational humanitarian. The websites also depict Jolie’s health decision in positive, negative, and/or both ways. Discussion centers on how this actress’ health decision impacts the public

Celebrity Health Announcements and Online Health Information Seeking: An Analysis of Angelina Jolie’s Preventative Health Decision

On May 14, 2013, Angelina Jolie disclosed she carries BRCA1, which means she has an 87% risk of developing breast cancer during her lifetime. Jolie decided to undergo a preventative bilateral mastectomy (PBM), reducing her risk to 5%. The purpose of this study was to analyze the type of information individuals are exposed to when using the Internet to search health information regarding Jolie’s decision. Qualitative content analysis revealed four main themes—information about genetics, information about a PBM, information about health care, and information about Jolie’s gender identity. Broadly, the identified websites mention Jolie’s high risk for developing cancer due to the genetic mutation BRCA1, describe a PBM occasionally noting reasons why she had this surgery and providing alternatives to the surgery, discuss issues related to health care services, costs, and insurances about Jolie’s health decision, and portray Jolie as a sexual icon, a partner to Brad Pitt, a mother of six children, and an inspirational humanitarian. The websites also depict Jolie’s health decision in positive, negative, and/or both ways. Discussion centers on how this actress’ health decision impacts the public

“It’s Not \u3cem\u3eif\u3c/em\u3e I Get Cancer, It’s \u3cem\u3ewhen\u3c/em\u3e I Get Cancer”: \u3cem\u3eBRCA\u3c/em\u3e-Positive Patients’ (Un)certain Health Experiences Regarding Hereditary Breast and Ovarian Cancer Risk

Rationale: Women with a harmful mutation in the BReast CAncer (BRCA) gene are at significantly increased risk of developing hereditary breast and ovarian cancer (HBOC) during their lifetime, compared to those without. Such patients—with a genetic predisposition to develop cancer but who have not yet been diagnosed with cancer—live in a constant state of uncertainty and wonder not if they might get cancer but when. Objective: Framed by uncertainty management theory, the purpose of this study was to explore BRCA-positive patients’ health experiences after testing positive for the BRCA genetic mutation, specifically identifying their sources of uncertainty. Methods: Thirty-four, qualitative interviews were conducted with female patients. Participants responded to online research postings on the non-profit organization Facing Our Risk of Cancer Empowered’s (FORCE) message board and social media pages as well as HBOC-specific Facebook groups. The interview data were coded using the constant comparison method. Results: Two major themes representing BRCA-positive patients’ sources of uncertainty regarding their genetic predisposition and health experiences emerged from the data. Medical uncertainty included the following three subthemes: the unknown future, medical appointments, and personal cancer scares. Familial uncertainty encompassed the subthemes traumatic family cancer memories and motherhood. Conclusions: Overall, the study supports and extends existing research on uncertainty—revealing uncertainty is inherent in BRCA-positive patients’ health experiences—and offers new insight regarding uncertainty management and HBOC risk

Advice for talking about family planning when you have a BRCA mutation

This infographic was made based on research conducted by Dr. Emily Rauscher (Texas A&M University) and Dr. Marleah Dean (University of South Florida). It provides advice for individuals who have tested positive for a BRCA mutation about how to have productive conversations with their partners about family planning decisions. The infographic addresses emotional concerns, questions about resources, and strategic advice for bringing up the conversation with a partner

“I’ve Just Never Gotten Around to Doing It”: Men’s Approaches to Managing \u3cem\u3eBRCA\u3c/em\u3e-Related Cancer Risks

Objective: To examine men’s approaches to managing BRCA-related cancer risks. Methods: 25 Qualitative interviews were conducted with men who are at risk for BRCA-related cancers. Thematic analysis was conducted using the constant comparison. Results: Qualitative analysis revealed two different approaches for how men managed their BRCA-related cancer risks. Men were engaged when: (1) initially seeking information, (2) uptake of genetic testing, and (3) population screening procedures. Men were passively avoidant for: (1) follow-up information seeking, (2) uptake of genetic testing, and (3) BRCA-specific screening. Men’s justifications for engaged risk management were to: (1) protect their family, (2) respond to encouragement from others, and (3) get knowledge for themselves. Their justifications for passively avoidant management were due to: (1) limited access to clear risk information, (2) little fear of cancer development, (3) barriers to testing/screening, and (4) reliance on incomplete illness representations. Conclusions: Men at risk for developing BRCA-related cancers approached risk management by primarily using a passive avoidance approach. That approach should be interpreted in context with the inconsistent information available to them, and the minimal NCCN guidelines for their risk surveillance. Practice implications: Findings may assist healthcare providers and family members in helping men manage their BRCA-related cancer risks