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  • Living in the pre-manifest stage of HD for pure

    Rights statement: This is the peer reviewed version of the following article: Wieringa, G., Dale, M., & Eccles, F. J. R. (2021). The experience of a sample of individuals in the United Kingdom living in the pre-manifest stage of Huntington’s disease: An interpretative phenomenological analysis. Journal of Genetic Counseling, 00, 1– 13. https://doi.org/10.1002/jgc4.1497 which has been published in final form athttps://onlinelibrary.wiley.com/doi/10.1002/jgc4.1497 This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.

    Accepted author manuscript, 306 KB, PDF document

    Embargo ends: 10/08/22

    Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License

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The experience of a sample of individuals in the United Kingdom living in the pre-manifest stage of Huntington’s disease: an interpretative phenomenological analysis

Research output: Contribution to journalJournal articlepeer-review

E-pub ahead of print
<mark>Journal publication date</mark>10/08/2021
<mark>Journal</mark>Journal of Genetic Counseling
Publication StatusE-pub ahead of print
Early online date10/08/21
<mark>Original language</mark>English

Abstract

This paper explores the experience of ten individuals living in the UK who were in the pre-manifest stage of Huntington's disease (HD), a genetic neurodegenerative condition. Data were gathered using semi-structured interviews and analyzed using interpretative phenomenological analysis. Three themes were reported from the data: ‘feeling limited by time’, ‘the perception of stalling time’, and ‘making the most of time’, all highlighting the way in which time holds significant meaning when living in the pre-manifest stage of HD. This study has highlighted the difficulties experienced by individuals when adjusting to the pre-manifest stage of HD. Feeling able to manage their anxieties and dealing with ongoing uncertainty related to future deterioration was key to supporting their wellbeing, facilitated by factors such as positivity and hope. Individuals may benefit from counseling which supports them to develop proactive coping strategies to manage their anxieties and acceptance of an uncertain future.

Bibliographic note

This is the peer reviewed version of the following article: Wieringa, G., Dale, M., & Eccles, F. J. R. (2021). The experience of a sample of individuals in the United Kingdom living in the pre-manifest stage of Huntington’s disease: An interpretative phenomenological analysis. Journal of Genetic Counseling, 00, 1– 13. https://doi.org/10.1002/jgc4.1497 which has been published in final form athttps://onlinelibrary.wiley.com/doi/10.1002/jgc4.1497 This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.