dc.contributor.author | Forrest Keenan, Karen | |
dc.contributor.author | van Teijlingen, Edwin | |
dc.contributor.author | McKee, Lorna | |
dc.contributor.author | Miedzybrodzka, Zosia | |
dc.contributor.author | Simpson, Sheila A. | |
dc.date.accessioned | 2009-08-11T14:30:18Z | |
dc.date.available | 2009-08-11T14:30:18Z | |
dc.date.issued | 2009-03-26 | |
dc.identifier.citation | Forrest Keenan, K., van Teijlingen, E., McKee, L., Miedzybrodzka, Z., and Simpson, S.A. (2009) How young people find out about their family history of Huntington's disease. Social Science & Medicine, 68(10), pp. 1892-1900. | en |
dc.identifier.issn | 0277-9536 | |
dc.identifier.uri | http://hdl.handle.net/2164/285 | |
dc.description.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). Thirtythree
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. | en |
dc.description.sponsorship | Wellcome Trust’s Programme in Biomedical Ethics | en |
dc.format.extent | 130455 bytes | |
dc.format.mimetype | application/pdf | |
dc.language.iso | en | en |
dc.publisher | Elsevier | en |
dc.subject | Scotland | en |
dc.subject | Family communication | en |
dc.subject | Young People | en |
dc.subject | Huntington’s disease | en |
dc.subject | Genetic Risk | en |
dc.subject | UK | en |
dc.title | How young people find out about their family history of Huntington's disease | en |
dc.type | Journal Article | en |