Western Norway Familial Cancer Center, Haukeland University Hospital, 5021, Bergen, Norway.
Fam Cancer. 2011 Sep;10(3):597-603. doi: 10.1007/s10689-011-9456-8.
This qualitative study explored the experiences of Norwegian men after being identified as BRCA 1/2 mutation-positive. Only limited knowledge is available on this topic; therefore, the aim of this study was to gain a deeper insight from the men's own perspectives. Data were collected from in-depth interviews with 15 men and seven of their partners. The participants described fear of cancer development, and two main narrative patterns were identified: fear for their own health, including fear of developing cancer, and negative feelings about responsibility for others' health. The men expressed fear of developing cancer themselves and described a need for genetic risk information. They were also deeply concerned about how the mutation might affect their children and other relatives. There is a need for guidelines concerning genetic risk information and follow-up programs for male BRCA 1/2 mutation carriers. This study adds valuable contextual insights into their experiences of living with fear of cancer.
本定性研究探讨了被诊断为 BRCA1/2 基因突变阳性的挪威男性的经历。关于这个主题，目前的知识有限；因此，本研究的目的是从男性自身的角度更深入地了解这一问题。研究数据来自对 15 名男性及其 7 名伴侣的深入访谈。参与者描述了对癌症发展的恐惧，确定了两种主要的叙述模式：对自身健康的担忧，包括对癌症发展的恐惧，以及对他人健康责任的负面感受。男性表达了对自身患癌的恐惧，并表示需要遗传风险信息。他们还非常担心突变可能对自己的孩子和其他亲属产生的影响。需要制定有关男性 BRCA1/2 基因突变携带者遗传风险信息和随访计划的指南。本研究为了解他们对癌症的恐惧提供了有价值的背景洞察。
