Predictive testing for Huntington's disease: relationship with partners after testing
Predictive testing for Huntington's disease: relationship with partners after testing
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DOI：
10.1111/j..2004.00168.x
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发表时间：
2004-01-01
影响因子：
3.5
通讯作者：
Fryns, JP
中科院分区：
文献类型：
--
作者：
Decruyenaere, M;Evers-Kiebooms, G;Fryns, JP
本研究的重点是在亨廷顿舞蹈病（HD）预测测试结果5年后被测试者的伴侣关系。我们描述了婚姻状况的变化，关系的质量，以及感知到的关系变化。26名携带者、14名伴侣、33名非携带者和17名伴侣参与了这项研究。采用定性和定量相结合的方法。大多数被测者（约70%）的婚姻状况在测试后5年没有变化。总体而言，携带者对夫妻关系质量的评价高于伴侣，并且他们感受到更多积极的变化。定性数据显示，导致角色改变的测试结果可能会导致显著的婚姻困扰。测试的另一个结果可能是无症状携带者夫妇的动力学变化。测试前对测试结果对关系可能产生的影响进行讨论，应该有助于更好地准备和了解测试后的反应。测试后的咨询应在考虑双方的需求和焦虑的情况下，刺激伴侣之间的开放沟通。
This study focuses on the partner relationship of tested persons, 5 years after their predictive test result for Huntington's disease (HD). We describe changes in marital status, quality of the relationship, and perceived changes in the relationship. Twenty-six carriers, 14 of their partners, 33 non-carriers, and 17 of their partners participated in the study. Qualitative and quantitative methods were used. For the majority of tested persons (about 70%), the marital status was unchanged 5 years post test. Overall, carriers rated the quality of the relationship higher than their partners did and they perceived more positive changes. Qualitative data show that a test result leading to changed roles may induce significant marital distress. Another consequence of the test may be the changes in dynamics in asymptomatic carrier couples. A pre-test discussion of the possible impact of the test result on the relationship should result in a better preparation for and more understanding of the reactions after testing. Counselling after testing should stimulate an open communication between partners with consideration of needs and anxieties of both partners.