Previvors’ Perceptions of Hereditary Breast and Ovarian Cancer Health-related Information

Abstract

The purpose of this study is to identify female previvors’ perceptions of hereditary breast and ovarian cancer (HBOC) health-related information. Previvors are individuals who have tested positive for a harmful BRCA genetic mutation, which increases their lifetime risk for HBOC, but who have never been diagnosed with cancer. As a part of a larger research project where 25 qualitative interviews were conducted, this manuscript reports on the analysis of ten interviews which are most relevant to the research focus. Using the constant comparative method, themes were created and developed from the interview data. The results indicate previvors view information as a source of power. These women reported feeling personally responsible for seeking and sharing information, while also relying on medical professionals to provide credible sources of information. Furthermore, previvors emphasized a desire for medical professionals to be more informed about BRCA in order to assist them in making personal health decisions. This study presents the perceptions regarding HBOC information as reported by this population of previvors. The findings indicate that information is not provided in an organized way relative to their specific needs. Therefore, the authors recommend an educational intervention tool for previvors and their medical professionals. KEYWORDS: BRCA; Communication; Qualitative; Hereditary Cancer; Health Experiences; Previvors; Medicine; Patient Perspectives; Health Information