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How young people find out about their family history of Huntington's disease

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  • Forrest Keenan, Karen
  • van Teijlingen, Edwin
  • McKee, Lorna
  • Miedzybrodzka, Zosia
  • Simpson, Sheila A.

Abstract

Family communication about adult-onset hereditary illness can be problematic, leaving some relatives inadequately informed or ignorant of their risk. Although studies have explored the barriers and facilitators in family communication about genetic risk, questions remain about when, what, how and indeed whether to tell relatives. The process of disclosure is also dependent upon the way in which genetic information is realized and understood by recipients, but research here is limited. Our paper explores young people's experiences of finding out about a family history of the hereditary disorder Huntington's disease (HD). In-depth interviews explored how and when young people found out, their reactions to different communication styles and any impact on family relations. We recruited young people through the North of Scotland regional genetics clinic and the Scottish Huntington's Association (SHA). Thirty-three young people (aged 9-28) were interviewed. A qualitative analysis was undertaken which revealed four types of disclosure experiences: (1) having always been told, (2) gradually told, (3) HD was kept a secret, or (4) HD as a new diagnosis. In particular, the timing and style of disclosure from relatives, and one's stage of awareness, were fundamental in structuring participants' accounts. This article focuses on questions of when, how and indeed whether to tell children, and sits within a broader set of research and practice issues about what professionals and families (should) tell children about parental illness and genetic risk.

Suggested Citation

  • Forrest Keenan, Karen & van Teijlingen, Edwin & McKee, Lorna & Miedzybrodzka, Zosia & Simpson, Sheila A., 2009. "How young people find out about their family history of Huntington's disease," Social Science & Medicine, Elsevier, vol. 68(10), pages 1892-1900, May.
  • Handle: RePEc:eee:socmed:v:68:y:2009:i:10:p:1892-1900
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    References listed on IDEAS

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    1. van den Nieuwenhoff, Hélène W.P. & Mesters, Ilse & Gielen, Caroline & de Vries, Nanne K., 2007. "Family communication regarding inherited high cholesterol: Why and how do patients disclose genetic risk?," Social Science & Medicine, Elsevier, vol. 65(5), pages 1025-1037, September.
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    Cited by:

    1. Huniche, Lotte, 2011. "Moral landscapes and everyday life in families with Huntington's disease: Aligning ethnographic description and bioethics," Social Science & Medicine, Elsevier, vol. 72(11), pages 1810-1816, June.
    2. Kavanaugh, Melinda S. & Cho, Chi & Maeda, Hotaka & Swope, Chandler, 2017. "“I am no longer alone”: Evaluation of the first North American camp for youth living in families with Huntington's disease," Children and Youth Services Review, Elsevier, vol. 79(C), pages 325-332.
    3. Martha Driessnack & Janet K. Williams & J. Jackson Barnette & Kathleen J. Sparbel & Jane S. Paulsen, 2012. "Development of the HD-Teen Inventory," Clinical Nursing Research, , vol. 21(2), pages 213-223, May.

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