Dean Marleah
Department of Communication, University of South Florida, 4202 E. Fowler CIS 3057, Tampa, FL 33620, USA.
Soc Sci Med. 2016 Aug;163:21-7. doi: 10.1016/j.socscimed.2016.06.039. Epub 2016 Jun 23.
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.
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.
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.
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.
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.
与未携带乳腺癌（BRCA）基因有害突变的女性相比，携带该突变的女性一生中患遗传性乳腺癌和卵巢癌（HBOC）的风险显著增加。这类具有患癌遗传易感性但尚未被诊断出癌症的患者，一直生活在不确定性之中，她们不是疑惑自己是否会患癌，而是何时会患癌。
以不确定性管理理论为框架，本研究旨在探讨BRCA基因检测呈阳性的患者在检测后对自身健康的体验，特别是确定她们不确定性的来源。
对34名女性患者进行了定性访谈。参与者回应了非营利组织“直面癌症风险”（FORCE）留言板、社交媒体页面以及特定的HBOC相关脸书群组上发布的在线研究招募信息。访谈数据采用持续比较法进行编码。
数据中出现了两个主要主题，代表了BRCA基因检测呈阳性的患者在遗传易感性和健康体验方面不确定性的来源。医学不确定性包括以下三个子主题：未知的未来、医疗预约以及个人癌症恐慌。家庭不确定性包括创伤性家庭癌症记忆和为人母这两个子主题。
总体而言，该研究支持并扩展了现有关于不确定性的研究——揭示了不确定性是BRCA基因检测呈阳性的患者健康体验中固有的——并为不确定性管理和HBOC风险提供了新的见解。
