"It's not if I get cancer, it's when I get cancer": BRCA-positive patients' (un)certain health experiences regarding hereditary breast and ovarian cancer risk
"It's not if I get cancer, it's when I get cancer": BRCA-positive patients' (un)certain health experiences regarding hereditary breast and ovarian cancer risk
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DOI：
10.1016/j.socscimed.2016.06.039
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发表时间：
2016-08-01
影响因子：
5.4
通讯作者：
Dean, Marleah
中科院分区：
文献类型：
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作者：
Dean, Marleah
理由：与没有乳腺癌 (BRCA) 基因的有害突变的女性相比，其一生中患遗传性乳腺癌和卵巢癌 (HBOC) 的风险显着增加。这些具有患癌症遗传倾向但尚未被诊断出患有癌症的患者生活在一种持续的不确定状态中，他们不知道自己是否会患癌症，而关心何时会患癌症。 目的：以不确定性管理理论为框架，本研究的目的是探讨 BRCA 阳性患者在 BRCA 基因突变检测呈阳性后的健康经历，特别是确定其不确定性来源。 方法：对 34 名女性患者进行定性访谈。参与者对非营利组织 Facing Our Risk of Cancer Empowered (FORCE) 留言板和社交媒体页面以及 HBOC 特定 Facebook 群组上发布的在线研究帖子做出回应。访谈数据采用恒定比较法进行编码。结果：数据中出现了代表 BRCA 阳性患者遗传倾向和健康经历不确定性来源的两个主要主题。医疗不确定性包括以下三个子主题：未知的未来、医疗预约和个人癌症恐慌。家庭不确定性包括创伤性家庭癌症记忆和母亲身份等次主题。结论：总体而言，该研究支持并扩展了关于不确定性的现有研究，揭示了 BRCA 阳性患者健康经历中固有的不确定性，并提供了有关不确定性管理和 HBOC 风险的新见解。 (C) 2016 Elsevier Ltd. 保留所有权利。
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. (C) 2016 Elsevier Ltd. All rights reserved.