Decruyenaere M, Evers-Kiebooms G, Cloostermans T, Boogaerts A, Demyttenaere K, Dom R, Fryns J P
Psychosocial Genetics Unit, University of Leuven-Herestraat, Leuven, Belgium.
Clin Genet. 2004 Jan;65(1):24-31. doi: 10.1111/j..2004.00168.x.
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.
本研究聚焦于亨廷顿舞蹈症（HD）预测检测结果公布5年后受测者的伴侣关系。我们描述了婚姻状况的变化、关系质量以及关系中可感知到的变化。26名携带者、他们的14名伴侣、33名非携带者以及他们的17名伴侣参与了该研究。研究采用了定性和定量方法。对于大多数受测者（约70%）而言，检测后5年婚姻状况未变。总体而言，携带者对关系质量的评价高于其伴侣，且他们感知到更多积极变化。定性数据表明，检测结果导致角色改变可能引发显著的婚姻困扰。检测的另一个后果可能是无症状携带者夫妻关系动态的变化。检测前对检测结果可能对关系产生的影响进行讨论，应能让双方为检测后的反应做好更好的准备并增进理解。检测后咨询应促进伴侣间的开放沟通，同时考虑双方的需求和焦虑。
