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

Authors: Forrest Keenan, K., van Teijlingen, E., McKee, L., Miedzybrodzka, Z. and Simpson, S.A.

Journal: Social Science and Medicine

Volume: 68

Issue: 10

Pages: 1892-1900

ISSN: 0277-9536

DOI: 10.1016/j.socscimed.2009.02.049

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. © 2009 Elsevier Ltd.

Source: Scopus

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

Authors: Forrest Keenan, K., van Teijlingen, E., McKee, L., Miedzybrodzka, Z. and Simpson, S.A.

Journal: Soc Sci Med

Volume: 68

Issue: 10

Pages: 1892-1900

ISSN: 0277-9536

DOI: 10.1016/j.socscimed.2009.02.049

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.

Source: PubMed

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

Authors: Keenan, K.F., van Teijlingen, E., McKee, L., Miedzybrodzka, Z. and Simpson, S.A.

Journal: SOCIAL SCIENCE & MEDICINE

Volume: 68

Issue: 10

Pages: 1892-1900

ISSN: 0277-9536

DOI: 10.1016/j.socscimed.2009.02.049

Source: Web of Science (Lite)

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

Authors: Keenan, K.F., van Teijlingen, E., McKee, L., Miedzybrodzka, Z. and Simpson, S.A.

Journal: Social Science & Medicine

Volume: 68

Pages: 1892-1900

ISSN: 0277-9536

DOI: 10.1016/j.socscimed.2009.02.049

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.

Source: Manual

Preferred by: Edwin van Teijlingen

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

Authors: Forrest Keenan, K., van Teijlingen, E., McKee, L., Miedzybrodzka, Z. and Simpson, S.A.

Journal: Social science & medicine (1982)

Volume: 68

Issue: 10

Pages: 1892-1900

eISSN: 1873-5347

ISSN: 0277-9536

DOI: 10.1016/j.socscimed.2009.02.049

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.

Source: Europe PubMed Central