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How Do Partners Find out About the Risk of Huntington’s Disease in Couple Relationships?

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

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.

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Acknowledgments

The authors are extremely grateful to all the partners of patients who took part in the study. KFK would also like to extend her thanks to several colleagues for sharing their observations about HD being the “elephant in the room.”

Conflict of Interest

The authors have no conflict of interest.

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Authors and Affiliations

  1. Health Services Research Unit, University of Aberdeen, 3rd Floor, Health Sciences Building, Foresterhill, Aberdeen, AB25 2ZD, UK

    Karen Forrest Keenan

  2. Medical Genetics, University of Aberdeen, Polwarth Building, Foresterhill, Aberdeen, AB25 2ZD, UK

    Sheila A. Simpson, Zosia Miedzybrodzka & June Semper

  3. Aberdeen Centre for Trauma Research, Faculty of Health and Social Care, The Robert Gordon University, Garthdee Road, Aberdeen, AB10 7QG, UK

    David A. Alexander

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  1. Karen Forrest Keenan
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  2. Sheila A. Simpson
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  3. Zosia Miedzybrodzka
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  4. David A. Alexander
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  5. June Semper
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Correspondence to Karen Forrest Keenan.

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Keenan, K.F., Simpson, S.A., Miedzybrodzka, Z. et al. How Do Partners Find out About the Risk of Huntington’s Disease in Couple Relationships?. J Genet Counsel 22, 336–344 (2013). https://doi.org/10.1007/s10897-012-9562-2

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