Kenen Regina, Arden-Jones Audrey, Eeles Rosalind
Department of Sociology and Anthropology, Social Science Building, The College of New Jersey, PO Box 7718, Ewing, NJ 08628, USA.
Psychooncology. 2004 May;13(5):335-45. doi: 10.1002/pon.745.
This study explores how family communication patterns and family scripts influence the dissemination of genetic information and the sharing of feelings about genetic inheritance in families of healthy women who have attended a cancer genetics risk clinic because of their family history of breast and, or ovarian cancer. Family scripts are sets of expectations, beliefs, and norms that assign meaning to patterns of interaction, connect generations and provide guidance for action. We conducted an exploratory, qualitative study at a major clinical and research cancer center in the United Kingdom from January through June 2000 approved by the hospital clinical research and ethics committees. Twenty-one semi-structured, in-depth interviews were conducted using a purposive sample of women coming to the cancer genetics risk clinic for the first time, supplemented by 5 months of participant observation. We identified several communication patterns: open and supportive; directly blocked, indirectly blocked, self-censored and use of third parties. Some family members shared their feelings and discussed ways of trying to avoid developing breast or ovarian cancer; for others disseminating information or just talking about inherited susceptibility for breast and, or ovarian cancer fell into the script violation category; still others tried to renegotiate their family scripts.
本研究探讨了家庭沟通模式和家庭脚本如何影响基因信息的传播,以及在因家族性乳腺癌和/或卵巢癌病史而就诊于癌症遗传风险诊所的健康女性家庭中,关于基因遗传情感的分享。家庭脚本是一系列期望、信念和规范,它们为互动模式赋予意义,连接代际,并为行动提供指导。2000年1月至6月,我们在英国一家主要的临床和研究癌症中心进行了一项探索性定性研究,该研究获得了医院临床研究和伦理委员会的批准。采用目的抽样法,对首次前往癌症遗传风险诊所的女性进行了21次半结构化深度访谈,并辅以5个月的参与观察。我们识别出了几种沟通模式:开放且支持性的;直接受阻、间接受阻、自我审查以及利用第三方。一些家庭成员分享了他们的感受,并讨论了试图避免患乳腺癌或卵巢癌的方法;对另一些人来说,传播信息或仅仅谈论乳腺癌和/或卵巢癌的遗传易感性属于违反脚本的范畴;还有一些人试图重新协商他们的家庭脚本。