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What to Do with a Second Chance in Life? Long-Term Experiences of Non-carriers of Huntington's Disease.
Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
Uppsala universitet.
2018 (English)In: Journal of Genetic Counseling, ISSN 1059-7700, E-ISSN 1573-3599Article in journal (Refereed) Epub ahead of print
Abstract [en]

Little is known about how people's lives are influenced when going from a 50% risk status of Huntington's disease (HD) to no risk after performing predictive testing. In this study, 20 interviews were conducted to explore the long-term (> 5 years) experiences after receiving predictive test results as a non-carrier of HD. The results showed a broad variety of both positive and negative reactions. The most prominent positive reaction reported was feelings of relief and gratitude, of not carrying the HD mutation for themselves and for their children. Also, the non-carrier status promoted in some individuals' significant life changes such as a wishing to have (more) children, pursuing a career or breaking up from an unhappy relationship. However, negative reactions on their psychological well-being were also described. Some had experienced psychological pressure of needing to do something extraordinary in their lives; others expressed feelings of guilt towards affected or untested siblings, resulting in sadness or clinical depression. The new genetic risk status could generate a need of re-orientation, a process that for some persons took several years to accomplish. The results of the present study show the importance of offering long-term post-result counselling for non-carriers in order to deal with the psychological consequences that may follow predictive testing.

Place, publisher, year, edition, pages
2018.
Keywords [en]
Experience, Genetic counselling, Huntington’s disease, Non-carriers, Predictive testing, Psychological impact, Qualitative study, Survivor guilt
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Nursing
Identifiers
URN: urn:nbn:se:esh:diva-6742DOI: 10.1007/s10897-018-0257-1PubMedID: 29626325OAI: oai:DiVA.org:esh-6742DiVA, id: diva2:1201697
Available from: 2018-04-26 Created: 2018-04-26 Last updated: 2018-04-26Bibliographically approved

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