Petersen Helle Vendel, Nilbert Mef, Bernstein Inge, Carlsson Christina
The HNPCC Register, Clinical Research Centre, Hvidovre Hospital, Copenhagen University, Kettegaard Allé 30, 2650, Hvidovre, Denmark,
J Genet Couns. 2014 Oct;23(5):778-84. doi: 10.1007/s10897-013-9682-3. Epub 2014 Jan 8.
Possibilities to undergo predictive genetic testing for cancer have expanded, which implies that an increasing number of healthy individuals will learn about cancer predisposition. Knowledge about how an increased risk of disease influences life in a long-term perspective is largely unknown, which led us to explore lived experiences in healthy mutation carriers with Lynch syndrome. Individual interviews were subjected to descriptive phenomenological analysis. Four constitutions, namely, family context, interpretation and transformation, approach to risk and balancing life at risk were identified and formed the essence of the phenomenon "living with knowledge about risk." Family context influences how experiences and knowledge are interpreted and transformed into thoughts and feelings, which relates to how risk is approached and handled. The constitutions influence each other in a dynamic relationship and create a balancing act between anxiety and worry and feelings of being safe and in control.
进行癌症预测性基因检测的可能性已经扩大，这意味着越来越多的健康个体将了解到自己有患癌倾向。从长远角度来看，关于疾病风险增加如何影响生活的知识在很大程度上尚不明确，这促使我们去探索林奇综合征健康突变携带者的生活经历。对个体访谈进行了描述性现象学分析。确定了四个构成要素，即家庭背景、解读与转变、风险应对以及在风险中平衡生活，它们构成了“带着风险认知生活”这一现象的本质。家庭背景影响着经历和知识如何被解读并转化为思想和感受，这与风险的应对和处理方式相关。这些构成要素在动态关系中相互影响，在焦虑与担忧以及安全感和掌控感之间形成了一种平衡行为。
