Authors
Karen Forrest Keenan, Sheila A Simpson, Zosia Miedzybrodzka, David A Alexander, June Semper
Publication date
2013/6
Journal
Journal of genetic counseling
Volume
22
Pages
336-344
Publisher
Springer US
Description
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 …
Total citations
20132014201520162017201820192020202120222023202413143111221
Scholar articles