Richards Fiona
Department of Clinical Genetics, The Children's Hospital at Westmead, LB 4001, Westmead NSW 2145, Sydney, Australia.
Am J Med Genet A. 2004 Apr 15;126A(2):170-82. doi: 10.1002/ajmg.a.20583.
A qualitative study, based on family systems theory, was undertaken in order to gain a better understanding of the impact of predictive testing and of living with the risk or reality of Huntington disease (HD), on couple relationships. Semi-structured interviews were conducted with 14 couples; in 9 couples the at-risk partner had undergone testing, and of these, 4 were already affected with HD. At-risk partners in the remaining five couples had not been tested. Interview transcripts were analyzed to obtain a range of themes, which reflect the salient experiences of these couples in relation to HD. Most couples reported that receiving a predictive test result had little or no adverse effect on their relationship. However for two couples who separated after the at-risk partner received a non-carrier result, emotional factors associated with years of living with the HD risk, rather than the result itself, were regarded as having caused irreparable damage to the relationship. For two couples who have remained together since the diagnosis of one partner, loyalty was identified as the main factor contributing to the continuance of the relationship. The separations of the other two couples in which one partner was diagnosed were attributed to emotional distancing, and to the obsessive behavior of the affected partner. The findings of this study highlight both the individuality and the complexity of psychological effects on the intimate relationships of couples who live with the risk or reality of HD, and provide important insights for professionals offering support to these couples.
一项基于家庭系统理论的定性研究开展了，目的是为了更好地理解预测性检测以及与亨廷顿病（HD）风险或现实共存对夫妻关系的影响。对14对夫妻进行了半结构化访谈；在9对夫妻中，有风险的一方已经接受了检测，其中4人已患有HD。其余5对夫妻中有风险的一方尚未接受检测。对访谈记录进行了分析，以获得一系列主题，这些主题反映了这些夫妻在HD方面的显著经历。大多数夫妻报告说，收到预测性检测结果对他们的关系几乎没有或没有负面影响。然而，对于两对在有风险的一方收到非携带者结果后分居的夫妻来说，与多年处于HD风险中相关的情感因素，而非结果本身，被认为对关系造成了无法弥补的损害。对于自一方被诊断以来一直在一起的两对夫妻，忠诚被确定为关系持续的主要因素。在一方被诊断的另外两对夫妻中，分居归因于情感疏远以及患病一方的强迫行为。这项研究的结果凸显了HD风险或现实对夫妻亲密关系产生心理影响的个体性和复杂性，并为向这些夫妻提供支持的专业人员提供了重要见解。
