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乳腺癌幸存者向我们讲述了她们的故事?知情还是不知情?

What Do Breast Cancer Previvors Tell Us About Their Stories? To Know or Not to Know?

机构信息

Department of Surgical Nursing, Istanbul University, Faculty of Nursing, Fatih, İstanbul.

Department of Mental Health and Psychiatric Nursing, Istanbul University-Cerrahpaşa, Florence Nightingale Faculty of Nursing, İstanbul.

出版信息

Semin Oncol Nurs. 2024 Oct;40(5):151714. doi: 10.1016/j.soncn.2024.151714. Epub 2024 Aug 19.

DOI:10.1016/j.soncn.2024.151714
PMID:39164159
Abstract

OBJECTIVES

This study aimed to explore the (1) experiences of breast cancer previvor women during genetic testing; (2) perceptions of the impact of genetic testing on their personal, social, family, and professional lives; and (3) views on breast cancer prevention and follow-up processes. This study focused on the risk of breast cancer in persons with BRCA mutations.

METHODS

Data were collected through individual in-depth semistructured interviews. The data were analyzed using the MAXQDA program based on the method suggested by Graneheim and Lundman.

RESULTS

This study was conducted in Istanbul, Turkey, and included 17 participants. Five themes emerged from the data analysis-Acquaintance with BRCA, Living with BRCA, Managing the Legacy, Maternalism, and We Are Here, including a total of 12 categories.

CONCLUSION

The previvors had negative experiences during genetic testing, mainly owing to a lack of information, stigma, and women's roles in society. A structured and individualized process for genetic counseling was identified as the main requirement.

IMPLICATIONS FOR NURSING PRACTICE

National and international policies on breast cancer previvors should be developed to prevent breast cancer and reduce mortality. Adopting a multidisciplinary approach during genetic counseling will favorably contribute to previvors' medical and psychosocial well-being. Follow-up programs before and after genetic testing should be created. Society's cultural and genetic literacy levels should be evaluated, and activities should be planned to raise social awareness.

摘要

目的

本研究旨在探讨(1)乳腺癌前患者在基因检测期间的体验;(2)对基因检测对其个人、社会、家庭和职业生活影响的看法;以及(3)对乳腺癌预防和随访过程的看法。本研究重点关注具有 BRCA 突变者的乳腺癌风险。

方法

通过个体深入半结构化访谈收集数据。使用 MAXQDA 程序根据 Graneheim 和 Lundman 提出的方法对数据进行分析。

结果

本研究在土耳其伊斯坦布尔进行,共纳入 17 名参与者。数据分析得出了 5 个主题——BRCA 的认识、BRCA 的伴随、管理遗产、母性主义和我们在这里,共包括 12 个类别。

结论

前患者在基因检测期间有负面体验,主要是由于信息不足、污名化和女性在社会中的角色。确定了一个结构化和个体化的遗传咨询过程是主要需求。

对护理实践的意义

应该制定国家和国际乳腺癌前患者政策,以预防乳腺癌和降低死亡率。在遗传咨询期间采用多学科方法将有利于前患者的身心健康。应创建基因检测前后的随访计划。应评估社会的文化和遗传素养水平,并计划开展活动以提高社会意识。

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