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Volumn 68, Issue 10, 2009, Pages 1892-1900

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

Author keywords

Family communication; Genetic risk; Huntington's disease; Scotland; UK; Young people

Indexed keywords

HEALTH RISK; HERITABILITY; QUALITATIVE ANALYSIS; QUESTIONNAIRE SURVEY; RISK FACTOR; YOUNG POPULATION;

EID: 65249146650     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.socscimed.2009.02.049     Document Type: Article
Times cited : (41)

References (57)
  • 3
    • 0037608050 scopus 로고    scopus 로고
    • Accessing hidden and hard-to-reach populations: snowball research strategies
    • University of Surrey
    • Atkinson R., and Flint J. Accessing hidden and hard-to-reach populations: snowball research strategies. Social Research Update 33 (2001) University of Surrey
    • (2001) Social Research Update , vol.33
    • Atkinson, R.1    Flint, J.2
  • 5
    • 0037983218 scopus 로고    scopus 로고
    • A hereditary disorder in the family and the family life cycle: Huntington disease as a paradigm
    • Brouer-DudokdeWit A.C., Savenije A., Zoeteweij M.W., Maat-Kievit A., and Tibben A. A hereditary disorder in the family and the family life cycle: Huntington disease as a paradigm. Family Process 41 4 (2002) 677-692
    • (2002) Family Process , vol.41 , Issue.4 , pp. 677-692
    • Brouer-DudokdeWit, A.C.1    Savenije, A.2    Zoeteweij, M.W.3    Maat-Kievit, A.4    Tibben, A.5
  • 8
    • 0033181469 scopus 로고    scopus 로고
    • There's this thing in our family: predictive testing and the construction of risk for Huntington disease
    • Cox S., and McKellin W. There's this thing in our family: predictive testing and the construction of risk for Huntington disease. Sociology of Health and Illness 21 5 (1999) 622-646
    • (1999) Sociology of Health and Illness , vol.21 , Issue.5 , pp. 622-646
    • Cox, S.1    McKellin, W.2
  • 9
    • 0034997291 scopus 로고    scopus 로고
    • Experiences of genetic risk: disclosure and the gendering of responsibility
    • D'agincourt-Canning L. Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics 15 3 (2001) 231-247
    • (2001) Bioethics , vol.15 , Issue.3 , pp. 231-247
    • D'agincourt-Canning, L.1
  • 12
    • 33745030309 scopus 로고    scopus 로고
    • Discovering the family history of Huntington disease (HD)
    • Etchegary H. Discovering the family history of Huntington disease (HD). Journal of Genetic Counseling 15 2 (2006) 105-117
    • (2006) Journal of Genetic Counseling , vol.15 , Issue.2 , pp. 105-117
    • Etchegary, H.1
  • 17
    • 27744534654 scopus 로고    scopus 로고
    • "It's their blood not mine": who's responsible for (not) telling relatives about genetic risk? Health
    • Forrest Keenan K., Simpson S.A., Wilson B.J., van Teijlingen E.R., McKee L., Haites N., et al. "It's their blood not mine": who's responsible for (not) telling relatives about genetic risk? Health. Risk and Society 7 3 (2005) 209-226
    • (2005) Risk and Society , vol.7 , Issue.3 , pp. 209-226
    • Forrest Keenan, K.1    Simpson, S.A.2    Wilson, B.J.3    van Teijlingen, E.R.4    McKee, L.5    Haites, N.6
  • 19
    • 34249651432 scopus 로고    scopus 로고
    • Communicating genetic information in families: a review of guidelines and position papers
    • Forrest L.E., Delatycki M.B., Skene L., and Aitken M. Communicating genetic information in families: a review of guidelines and position papers. European Journal of Human Genetics 15 (2007) 612-618
    • (2007) European Journal of Human Genetics , vol.15 , pp. 612-618
    • Forrest, L.E.1    Delatycki, M.B.2    Skene, L.3    Aitken, M.4
  • 23
    • 18344381796 scopus 로고    scopus 로고
    • Communication about genetic testing in families of male BRACA1/2 carriers and non-carriers: patterns, priorities and problems
    • Hallowell N., Ardern-Jones A., Eeles R., Foster C., Lucassen A., Moyhihan C., et al. Communication about genetic testing in families of male BRACA1/2 carriers and non-carriers: patterns, priorities and problems. Clinical Genetics 67 (2005) 492-502
    • (2005) Clinical Genetics , vol.67 , pp. 492-502
    • Hallowell, N.1    Ardern-Jones, A.2    Eeles, R.3    Foster, C.4    Lucassen, A.5    Moyhihan, C.6
  • 25
    • 33747390872 scopus 로고    scopus 로고
    • What do we tell the children? Contrasting the disclosure choices of two HD families regarding risk status and predictive genetic testing
    • Holt K. What do we tell the children? Contrasting the disclosure choices of two HD families regarding risk status and predictive genetic testing. Journal of Genetic Counseling 15 4 (2007) 253-265
    • (2007) Journal of Genetic Counseling , vol.15 , Issue.4 , pp. 253-265
    • Holt, K.1
  • 26
    • 0001642166 scopus 로고
    • Psychological aspects of cancer in children, adolescents and their families
    • Katz E., and Jay S. Psychological aspects of cancer in children, adolescents and their families. Clinical Psychology Review 4 (1984) 525-542
    • (1984) Clinical Psychology Review , vol.4 , pp. 525-542
    • Katz, E.1    Jay, S.2
  • 27
    • 2642517884 scopus 로고    scopus 로고
    • We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC)
    • Kenen R., Ardern-Jones A., and Eeles R. We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC). Psycho-Oncology 13 (2004) 335-345
    • (2004) Psycho-Oncology , vol.13 , pp. 335-345
    • Kenen, R.1    Ardern-Jones, A.2    Eeles, R.3
  • 28
    • 0024635424 scopus 로고
    • Social systems responses to HD
    • Kessler S., and Bloch M. Social systems responses to HD. Family Process 28 (1989) 59-68
    • (1989) Family Process , vol.28 , pp. 59-68
    • Kessler, S.1    Bloch, M.2
  • 30
  • 33
    • 0036723160 scopus 로고    scopus 로고
    • Predictive genetic testing and beyond: a theory of engagement
    • McAllister M. Predictive genetic testing and beyond: a theory of engagement. Journal of Health Psychology 7 5 (2002) 491-508
    • (2002) Journal of Health Psychology , vol.7 , Issue.5 , pp. 491-508
    • McAllister, M.1
  • 35
    • 53249117184 scopus 로고    scopus 로고
    • Family communication between children and their parents about inherited genetic conditions: a meta-synthesis of the research
    • Metcalfe A., Coad J., Plumridge G., Gill P., and Farndon P. Family communication between children and their parents about inherited genetic conditions: a meta-synthesis of the research. European Journal of Human Genetics 16 10 (2008) 1193-2000
    • (2008) European Journal of Human Genetics , vol.16 , Issue.10 , pp. 1193-2000
    • Metcalfe, A.1    Coad, J.2    Plumridge, G.3    Gill, P.4    Farndon, P.5
  • 37
    • 34547222076 scopus 로고    scopus 로고
    • Family communication regarding inherited high cholesterol: why and how do patients disclose genetic risk?
    • van den Nieuwenhoff H.W.P., Mesters I., Gielen C., and de Vries N.K. Family communication regarding inherited high cholesterol: why and how do patients disclose genetic risk?. Social Science & Medicine 65 (2007) 1025-1037
    • (2007) Social Science & Medicine , vol.65 , pp. 1025-1037
    • van den Nieuwenhoff, H.W.P.1    Mesters, I.2    Gielen, C.3    de Vries, N.K.4
  • 38
    • 45849093984 scopus 로고    scopus 로고
    • Genetic advocacy groups, science and biovalue: creating political economies of hope
    • Atkinson P., Glasner P., and Greenslade H. (Eds), Routledge, London
    • Novas C. Genetic advocacy groups, science and biovalue: creating political economies of hope. In: Atkinson P., Glasner P., and Greenslade H. (Eds). New genetics, new identities (2005), Routledge, London
    • (2005) New genetics, new identities
    • Novas, C.1
  • 41
    • 0034920768 scopus 로고    scopus 로고
    • Research directions in genetic counseling: a review of the literature
    • Pilnick A., and Dingwall R. Research directions in genetic counseling: a review of the literature. Patient Education and Counseling 44 (2001) 95-105
    • (2001) Patient Education and Counseling , vol.44 , pp. 95-105
    • Pilnick, A.1    Dingwall, R.2
  • 42
    • 84925907808 scopus 로고
    • The adolescent's reaction to chronic illness of a parent: some implications for family counseling
    • Power P.W. The adolescent's reaction to chronic illness of a parent: some implications for family counseling. International Journal of Family Counseling 5 (1977) 70-78
    • (1977) International Journal of Family Counseling , vol.5 , pp. 70-78
    • Power, P.W.1
  • 46
    • 0035036935 scopus 로고    scopus 로고
    • Prenatal testing for Huntington's disease: experience within the UK 1994-1998
    • Simpson S.A., and Harper P.E. Prenatal testing for Huntington's disease: experience within the UK 1994-1998. Journal of Medical Genetics 38 (2001) 333-335
    • (2001) Journal of Medical Genetics , vol.38 , pp. 333-335
    • Simpson, S.A.1    Harper, P.E.2
  • 47
    • 0024892247 scopus 로고
    • The prevalence and patterns of care of Huntington's chorea in Grampian region
    • Simpson S.A., and Johnston A.W. The prevalence and patterns of care of Huntington's chorea in Grampian region. British Journal of Psychiatry 155 (1989) 799-804
    • (1989) British Journal of Psychiatry , vol.155 , pp. 799-804
    • Simpson, S.A.1    Johnston, A.W.2
  • 48
    • 0141911712 scopus 로고    scopus 로고
    • Telling the children
    • Clarke A. (Ed), BIOS Scientific Publishers, Oxford
    • Skirton H. Telling the children. In: Clarke A. (Ed). The genetic testing of children (1998), BIOS Scientific Publishers, Oxford
    • (1998) The genetic testing of children
    • Skirton, H.1
  • 49
    • 0020085488 scopus 로고
    • Communication of the cancer diagnosis to pediatric patients: impact on long-term adjustment
    • Slavin L.A., O'Malley J.E., Koocher G.P., and Foster D.J. Communication of the cancer diagnosis to pediatric patients: impact on long-term adjustment. American Journal of Psychiatry 139 (1982) 179-182
    • (1982) American Journal of Psychiatry , vol.139 , pp. 179-182
    • Slavin, L.A.1    O'Malley, J.E.2    Koocher, G.P.3    Foster, D.J.4
  • 50
    • 12444277851 scopus 로고    scopus 로고
    • "Do you need to know?" Genetic testing for Huntington's disease
    • McDaniel S., Hepworh J., and Doherty W. (Eds), Basic Books, New York
    • Sobel S. "Do you need to know?" Genetic testing for Huntington's disease. In: McDaniel S., Hepworh J., and Doherty W. (Eds). The shared experience of illness: Stories of patients, families, and their therapists (1997), Basic Books, New York
    • (1997) The shared experience of illness: Stories of patients, families, and their therapists
    • Sobel, S.1
  • 51
    • 0242380654 scopus 로고    scopus 로고
    • Ambiguous loss and disenfranchised grief: the impact of DNA predictive testing on the family as a system
    • Sobel S., and Cowan B. Ambiguous loss and disenfranchised grief: the impact of DNA predictive testing on the family as a system. Family Process 42 1 (2003) 47-57
    • (2003) Family Process , vol.42 , Issue.1 , pp. 47-57
    • Sobel, S.1    Cowan, B.2
  • 56
    • 0037391569 scopus 로고    scopus 로고
    • Parental views on disclosure of diagnosis to their HIV-positive children
    • Waugh S. Parental views on disclosure of diagnosis to their HIV-positive children. AIDS Care 15 (2003) 169-176
    • (2003) AIDS Care , vol.15 , pp. 169-176
    • Waugh, S.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.