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Experiences of young people growing up in a family with Huntington's disease: A meta‐ethnography of qualitative research

Research output: Contribution to Journal/Magazine › Review article › peer-review

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Experiences of young people growing up in a family with Huntington's disease: A meta‐ethnography of qualitative research. / Cooper, Hollie; Simpson, Jane; Dale, Maria et al.
In: Journal of Genetic Counseling, Vol. 34, No. 1, e1886, 28.02.2025, p. e1886.

Research output: Contribution to Journal/Magazine › Review article › peer-review

Harvard

Cooper, H, Simpson, J, Dale, M & Eccles, FJR 2025, 'Experiences of young people growing up in a family with Huntington's disease: A meta‐ethnography of qualitative research', Journal of Genetic Counseling, vol. 34, no. 1, e1886, pp. e1886. https://doi.org/10.1002/jgc4.1886

APA

Cooper, H., Simpson, J., Dale, M., & Eccles, F. J. R. (2025). Experiences of young people growing up in a family with Huntington's disease: A meta‐ethnography of qualitative research. Journal of Genetic Counseling, 34(1), e1886. Article e1886. https://doi.org/10.1002/jgc4.1886

Vancouver

Cooper H, Simpson J, Dale M, Eccles FJR. Experiences of young people growing up in a family with Huntington's disease: A meta‐ethnography of qualitative research. Journal of Genetic Counseling. 2025 Feb 28;34(1):e1886. e1886. Epub 2024 Mar 12. doi: 10.1002/jgc4.1886

Author

Cooper, Hollie ; Simpson, Jane ; Dale, Maria et al. / Experiences of young people growing up in a family with Huntington's disease : A meta‐ethnography of qualitative research. In: Journal of Genetic Counseling. 2025 ; Vol. 34, No. 1. pp. e1886.

Bibtex

@article{2fb44653d71542ad9ca11c1c28ef289a,
title = "Experiences of young people growing up in a family with Huntington's disease: A meta‐ethnography of qualitative research",
abstract = "Huntington's disease is a genetic neurodegenerative condition with wide physical and psychological impacts. Children of a parent with the condition have a 50% chance of carrying the gene expansion and developing the condition themselves. This systematic review and meta‐ethnography presents a synthesis of the qualitative research on the experiences of young people growing up in a family with Huntington's disease. The MEDLINE, PsycINFO, and CINAHL databases were systematically searched, and 13 papers met the inclusion criteria. Through the process of meta‐ethnography, four themes were identified highlighting aspects of childhood that were stolen and fought for: thief of relationships, thief of self, thief of transparency, and search for reclamation. Within the themes, the complex challenges young people faced when growing up in a HD family were explored such as the impact of adverse childhood experiences and the possible effects of HD on attachment and social relationships. Clinical implications are considered, and recommendations are made for future research.",
keywords = "young people, meta‐ethnography, family, lived experience, Huntington's disease, qualitative",
author = "Hollie Cooper and Jane Simpson and Maria Dale and Eccles, {Fiona J. R.}",
year = "2025",
month = feb,
day = "28",
doi = "10.1002/jgc4.1886",
language = "English",
volume = "34",
pages = "e1886",
journal = "Journal of Genetic Counseling",
issn = "1059-7700",
publisher = "Kluwer Academic/Human Sciences Press Inc.",
number = "1",

}

RIS

TY - JOUR

T1 - Experiences of young people growing up in a family with Huntington's disease

T2 - A meta‐ethnography of qualitative research

AU - Cooper, Hollie

AU - Simpson, Jane

AU - Dale, Maria

AU - Eccles, Fiona J. R.

PY - 2025/2/28

Y1 - 2025/2/28

N2 - Huntington's disease is a genetic neurodegenerative condition with wide physical and psychological impacts. Children of a parent with the condition have a 50% chance of carrying the gene expansion and developing the condition themselves. This systematic review and meta‐ethnography presents a synthesis of the qualitative research on the experiences of young people growing up in a family with Huntington's disease. The MEDLINE, PsycINFO, and CINAHL databases were systematically searched, and 13 papers met the inclusion criteria. Through the process of meta‐ethnography, four themes were identified highlighting aspects of childhood that were stolen and fought for: thief of relationships, thief of self, thief of transparency, and search for reclamation. Within the themes, the complex challenges young people faced when growing up in a HD family were explored such as the impact of adverse childhood experiences and the possible effects of HD on attachment and social relationships. Clinical implications are considered, and recommendations are made for future research.

AB - Huntington's disease is a genetic neurodegenerative condition with wide physical and psychological impacts. Children of a parent with the condition have a 50% chance of carrying the gene expansion and developing the condition themselves. This systematic review and meta‐ethnography presents a synthesis of the qualitative research on the experiences of young people growing up in a family with Huntington's disease. The MEDLINE, PsycINFO, and CINAHL databases were systematically searched, and 13 papers met the inclusion criteria. Through the process of meta‐ethnography, four themes were identified highlighting aspects of childhood that were stolen and fought for: thief of relationships, thief of self, thief of transparency, and search for reclamation. Within the themes, the complex challenges young people faced when growing up in a HD family were explored such as the impact of adverse childhood experiences and the possible effects of HD on attachment and social relationships. Clinical implications are considered, and recommendations are made for future research.

KW - young people

KW - meta‐ethnography

KW - family

KW - lived experience

KW - Huntington's disease

KW - qualitative

U2 - 10.1002/jgc4.1886

DO - 10.1002/jgc4.1886

M3 - Review article

C2 - 38469914

VL - 34

SP - e1886

JO - Journal of Genetic Counseling

JF - Journal of Genetic Counseling

SN - 1059-7700

IS - 1

M1 - e1886

ER -