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    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.

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    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

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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. / Wieringa, Gina; Dale, Maria; Eccles, Fiona.

In: Journal of Genetic Counseling, 10.08.2021.

Research output: Contribution to journalJournal articlepeer-review

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@article{adae30f43e4c4a8fb1a22e0eb7507f9c,
title = "The experience of a sample of individuals in the United Kingdom living in the pre-manifest stage of Huntington{\textquoteright}s disease: an interpretative phenomenological analysis",
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: {\textquoteleft}feeling limited by time{\textquoteright}, {\textquoteleft}the perception of stalling time{\textquoteright}, and {\textquoteleft}making the most of time{\textquoteright}, 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.",
keywords = "chronic illness, decision-making, Huntington's disease, lived experience, predictive genetic testing",
author = "Gina Wieringa and Maria Dale and Fiona Eccles",
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{\textquoteright}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. ",
year = "2021",
month = aug,
day = "10",
doi = "10.1002/jgc4.1497",
language = "English",
journal = "Journal of Genetic Counseling",
issn = "1059-7700",
publisher = "Kluwer Academic/Human Sciences Press Inc.",

}

RIS

TY - JOUR

T1 - The experience of a sample of individuals in the United Kingdom living in the pre-manifest stage of Huntington’s disease

T2 - an interpretative phenomenological analysis

AU - Wieringa, Gina

AU - Dale, Maria

AU - Eccles, Fiona

N1 - 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.

PY - 2021/8/10

Y1 - 2021/8/10

N2 - 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.

AB - 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.

KW - chronic illness

KW - decision-making

KW - Huntington's disease

KW - lived experience

KW - predictive genetic testing

U2 - 10.1002/jgc4.1497

DO - 10.1002/jgc4.1497

M3 - Journal article

JO - Journal of Genetic Counseling

JF - Journal of Genetic Counseling

SN - 1059-7700

ER -