Forrest Keenan Karen, Simpson Sheila A, Miedzybrodzka Zosia, Alexander David A, Semper June
Health Services Research Unit, University of Aberdeen, Foresterhill, Aberdeen, UK.
J Genet Couns. 2013 Jun;22(3):336-44. doi: 10.1007/s10897-012-9562-2. Epub 2013 Jan 9.
Whilst a growing body of work has explored family communication about Huntington's disease and how at-risk individuals learn about their risk, the experience of telling a partner and partners' experiences of finding out about this potentially devastating hereditary illness have received little attention. This study describes the experiences of partners in finding out about Huntington's disease and any impact on couple's relationships/marriages. We undertook a thematic analysis of qualitative interviews which explored the dynamics of partners' marriages after predictive testing and partners' views of genetic counseling. A main theme from partners' accounts was how they found out about their spouse's risk of Huntington's disease and the impact this had on marital relations. The analysis revealed four types of disclosure experiences: (1) marital secrets; (2) alerting, but not telling; (3) knowing and seeing; (4) marital ignorance. Our findings demonstrate that partners' experiences of (non)disclosure about the risk of HD within marriages is an important factor which contributes to couples' coping or marital problems. Exploring how spouses found out about their partner's risk of HD will illuminate issues about a couple's past and future patterns of communication and their coping strategies. A practical and ethical implication is the extent to which genetic counselors should inform partners about the course and nature of Huntington's disease when a partner is the support person for the individual being tested.
虽然越来越多的研究探讨了关于亨廷顿舞蹈症的家庭沟通以及高危个体如何了解自身风险，但告知伴侣的经历以及伴侣得知这种潜在毁灭性遗传病的经历却很少受到关注。本研究描述了伴侣得知亨廷顿舞蹈症的经历以及对夫妻关系/婚姻的任何影响。我们对定性访谈进行了主题分析，探讨了预测性检测后伴侣婚姻的动态以及伴侣对遗传咨询的看法。伴侣叙述的一个主要主题是他们如何得知配偶患亨廷顿舞蹈症的风险以及这对婚姻关系的影响。分析揭示了四种披露经历类型：(1) 婚姻秘密；(2) 提醒但不告知；(3) 知晓并目睹；(4) 婚姻无知。我们的研究结果表明，伴侣在婚姻中对亨廷顿舞蹈症风险（不）披露的经历是导致夫妻应对或婚姻问题的一个重要因素。探究配偶如何得知其伴侣患亨廷顿舞蹈症的风险将阐明有关夫妻过去和未来沟通模式以及应对策略的问题。一个实际的伦理问题是，当伴侣是受测个体的支持人时，遗传咨询师应在何种程度上告知伴侣亨廷顿舞蹈症的病程和性质。
