Predictive testing for Huntington's disease: an exploration of the partner's role in decision-making

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dc.contributor.advisor Tsipis, Judith en_US Towner, Shelley 2014-05-19T14:45:21Z 2015-05-31T08:15:40Z 2014
dc.description.abstract Huntington’s disease (HD) is a progressive neurodegenerative disease that causes motor and cognitive impairment. Symptom onset is typically during adulthood and HD is inherited in an autosomal dominant manner. Predictive testing is available for at-risk individuals who desire to learn whether they have inherited the HD gene mutation. Factors contributing to the decision regarding predictive testing have been studied many times in the at-risk population. Few studies, however, have focused on the partners of these individuals to explore their views and opinions about predictive testing. In this study, we interviewed the spouses of six individuals who underwent presymptomatic predictive testing to better understand their thoughts, feelings, and specific roles throughout the decision-making process. Several important findings emerged from the interviews. First, we found that spouses preferred earlier predictive testing than their at-risk partner, but remained extremely supportive of their partner’s decision to delay testing. Second, we identified a lack of understanding regarding the full purpose and benefits of pre-test counseling sessions. Two of the six couples opted out of pre-test counseling through an HD center because ‘they already knew what HD was,’ but ended up receiving inadequate information and support. Finally, we provide further evidence that spouses’ needs for additional support following a positive test result for HD are often overlooked. Genetic counselors possess the necessary training to assist couples through the decision-making process, educate them regarding pertinent information during a pre-test counseling session, and provide support as well as resources to these patients and their families. en_US
dc.description.sponsorship Brandeis University, Graduate School of Arts and Sciences en_US
dc.format.mimetype application/pdf en_US
dc.language English en_US
dc.language.iso eng en_US
dc.publisher Brandeis University en_US
dc.relation.ispartofseries Brandeis University Theses and Dissertations
dc.rights Copyright by Shelley Towner 2014 en_US
dc.subject Genetic Counseling en_US
dc.subject Huntington's disease en_US
dc.subject HD en_US
dc.subject predictive testing en_US
dc.subject spouses perspective en_US
dc.subject pre-test counseling en_US
dc.subject spousal support en_US
dc.subject forgotten persons en_US
dc.title Predictive testing for Huntington's disease: an exploration of the partner's role in decision-making en_US
dc.type Thesis en_US
dc.contributor.department Graduate Program in Genetic Counseling en_US
dc.description.embargo 2015-05-31 en_US MS en_US Masters en_US Genetic Counseling en_US Brandeis University, Graduate School of Arts and Sciences en_US

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