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Volumn 13, Issue 2, 2007, Pages 189-198

Communicating about haemophilia within the family: The importance of context and of experience

Author keywords

Carriers; Communication; Families; Haemophilia; Non obligate; Obligate

Indexed keywords

ARTICLE; CHILD PARENT RELATION; DISEASE CARRIER; FAMILY COPING; FAMILY LIFE; FEMALE; GENETIC RISK; HEALTH EDUCATION; HEMOPHILIA; HUMAN; INTERPERSONAL COMMUNICATION; MAJOR CLINICAL STUDY; MALE; PATIENT ATTITUDE; PERSONAL EXPERIENCE; PERSONALITY; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; SEMI STRUCTURED INTERVIEW; UNITED KINGDOM;

EID: 33846914256     PISSN: 13518216     EISSN: 13652516     Source Type: Journal    
DOI: 10.1111/j.1365-2516.2006.01417.x     Document Type: Article
Times cited : (24)

References (23)
  • 1
    • 0141921347 scopus 로고    scopus 로고
    • To tell or not to tell: Barriers and facilitators in family communication about genetic risk
    • Forrest K, Simpson SA, Wilson BJ et al. To tell or not to tell: Barriers and facilitators in family communication about genetic risk. Clin Genet 2003; 64: 317-26.
    • (2003) Clin Genet , vol.64 , pp. 317-326
    • Forrest, K.1    Simpson, S.A.2    Wilson, B.J.3
  • 2
    • 27744534654 scopus 로고    scopus 로고
    • 'It's their blood not mine': Who's responsible for (not) telling relatives about genetic risk
    • Keenan KF, Simpson SA, Wilson BJ et al. 'It's their blood not mine': Who's responsible for (not) telling relatives about genetic risk? Health Risk Soc 2005; 7: 209-26.
    • (2005) Health Risk Soc , vol.7 , pp. 209-226
    • Keenan, K.F.1    Simpson, S.A.2    Wilson, B.J.3
  • 3
    • 20144387063 scopus 로고    scopus 로고
    • UK Haemophilia Centre Doctors' Organisation: A framework for genetic service provision for haemophilia and other related blood disorders
    • Ludlam CA, Pasi KJ, Bolton-Maggs P et al. UK Haemophilia Centre Doctors' Organisation: A framework for genetic service provision for haemophilia and other related blood disorders. Haemophilia 2005; 11: 145-63.
    • (2005) Haemophilia , vol.11 , pp. 145-163
    • Ludlam, C.A.1    Pasi, K.J.2    Bolton-Maggs, P.3
  • 6
    • 33749849388 scopus 로고    scopus 로고
    • Working up policy: The use of specific disease exemplars in formulating general principles governing childhood genetic testing
    • Boddington P, Hogben S. Working up policy: The use of specific disease exemplars in formulating general principles governing childhood genetic testing. Health Care Anal 2006; 14: 1-13.
    • (2006) Health Care Anal , vol.14 , pp. 1-13
    • Boddington, P.1    Hogben, S.2
  • 7
    • 0034913419 scopus 로고    scopus 로고
    • Treatment of haemophilia in the United Kingdom 1981-1996
    • Rizza CR, Spooner RJD, Giangrande PLF. Treatment of haemophilia in the United Kingdom 1981-1996. Haemophilia 2001; 7: 349-59.
    • (2001) Haemophilia , vol.7 , pp. 349-359
    • Rizza, C.R.1    Spooner, R.J.D.2    Giangrande, P.L.F.3
  • 9
    • 0033926161 scopus 로고    scopus 로고
    • Perspectives of haemophilia carriers
    • Ross J. Perspectives of haemophilia carriers. Haemophilia 2000; 6: 41-5.
    • (2000) Haemophilia , vol.6 , pp. 41-45
    • Ross, J.1
  • 10
    • 0032939336 scopus 로고    scopus 로고
    • Counselling about diagnosis and inheritance of genetic bleeding disorders: Haemophilia A and B
    • Miller R. Counselling about diagnosis and inheritance of genetic bleeding disorders: Haemophilia A and B. Haemophilia 1999; 5: 77-83.
    • (1999) Haemophilia , vol.5 , pp. 77-83
    • Miller, R.1
  • 11
    • 84857525494 scopus 로고    scopus 로고
    • The moral and sentimental work of the clinic: The case of genetic syndromes
    • In: Greenslade H, Atkinson P, Glasner P, eds. London: Routledge
    • Featherstone K, Gregory M, Atkinson P. The moral and sentimental work of the clinic: The case of genetic syndromes. In: Greenslade H, Atkinson P, Glasner P, eds. New Genetics, New Identities. London: Routledge, 2007: 101-19.
    • (2007) New Genetics, New Identities , pp. 101-119
    • Featherstone, K.1    Gregory, M.2    Atkinson, P.3
  • 12
    • 33846899704 scopus 로고
    • Paper Presented at the Third European Meeting on Psychosocial Aspects of Genetics, University of Nottingham
    • Shakespeare J. Communication in Huntington's Disease Families. Paper Presented at the Third European Meeting on Psychosocial Aspects of Genetics, University of Nottingham, 1992.
    • (1992) Communication in Huntington's Disease Families
    • Shakespeare, J.1
  • 13
    • 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 2001; 15: 231-47.
    • (2001) Bioethics , vol.15 , pp. 231-247
    • D'agincourt-Canning, L.1
  • 14
    • 0037386964 scopus 로고    scopus 로고
    • A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning
    • Koehly LM, Peterson SK, Watts BG, Kempf KK, Vernon SW, Gritz ER. A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epidemiol Biomarkers Prev 2003; 12: 304-13.
    • (2003) Cancer Epidemiol Biomarkers Prev , vol.12 , pp. 304-313
    • Koehly, L.M.1    Peterson, S.K.2    Watts, B.G.3    Kempf, K.K.4    Vernon, S.W.5    Gritz, E.R.6
  • 16
    • 21544456087 scopus 로고    scopus 로고
    • Facilitating family communication about predictive genetic testing: Probands' perceptions
    • Gaff CL, Collins V, Symes T, Halliday J. Facilitating family communication about predictive genetic testing: Probands' perceptions. J Genet Couns 2005; 14: 133-40.
    • (2005) J Genet Couns , vol.14 , pp. 133-140
    • Gaff, C.L.1    Collins, V.2    Symes, T.3    Halliday, J.4
  • 17
    • 18344381796 scopus 로고    scopus 로고
    • Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: Patterns, priorities and problems
    • Hallowell N, Ardern-Jones A, Eeles R et al. Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: Patterns, priorities and problems. Clin Genet 2005; 67: 492-502.
    • (2005) Clin Genet , vol.67 , pp. 492-502
    • Hallowell, N.1    Ardern-Jones, A.2    Eeles, R.3
  • 18
    • 0041818178 scopus 로고    scopus 로고
    • How families communicate about HNPCC genetic testing: Findings from a qualitative study
    • Peterson SK, Watts BG, Koehly LM et al. How families communicate about HNPCC genetic testing: Findings from a qualitative study. Am J Med Genet C Semin Med Genet 2003; 119: 78-86.
    • (2003) Am J Med Genet C Semin Med Genet , vol.119 , pp. 78-86
    • Peterson, S.K.1    Watts, B.G.2    Koehly, L.M.3
  • 19
    • 0027320970 scopus 로고
    • Genetic risk: Women's understanding of carrier risks in Duchenne muscular dystrophy
    • Parsons EP, Clarke A. Genetic risk: Women's understanding of carrier risks in Duchenne muscular dystrophy. J Med Genet 1993; 30: 522-66.
    • (1993) J Med Genet , vol.30 , pp. 522-566
    • Parsons, E.P.1    Clarke, A.2
  • 20
    • 0141911712 scopus 로고    scopus 로고
    • Telling the children
    • In: Clarke A, ed. Oxford: Bios Scientific Publishers
    • Skirton H. Telling the children. In: Clarke A, ed. The Genetic Testing of Children. Oxford: Bios Scientific Publishers, 1998: 103-11.
    • (1998) The Genetic Testing of Children , pp. 103-111
    • Skirton, H.1
  • 21
    • 0032009804 scopus 로고    scopus 로고
    • Patients' Rights or family responsibilities? Two approaches to genetic testing
    • Skene L. Patients' Rights or family responsibilities? Two approaches to genetic testing. Med Law Rev 1998; 6: 1-41.
    • (1998) Med Law Rev , vol.6 , pp. 1-41
    • Skene, L.1
  • 22
    • 0032428754 scopus 로고    scopus 로고
    • The value of written summaries of genetic consultations
    • Hallowell N, Murton F. The value of written summaries of genetic consultations. Patient Educ Couns 1998; 35: 27-34.
    • (1998) Patient Educ Couns , vol.35 , pp. 27-34
    • Hallowell, N.1    Murton, F.2
  • 23
    • 33646460110 scopus 로고    scopus 로고
    • The importance of written information packages in support of case-finding within families at risk for inherited high cholesterol
    • Van den Nieuwenhoff HWP, Mesters I, Nellissen JJTM, Stalenhoef AF, de Kries NK. The importance of written information packages in support of case-finding within families at risk for inherited high cholesterol. J Genet Couns 2006; 15: 29-40.
    • (2006) J Genet Couns , vol.15 , pp. 29-40
    • Van den Nieuwenhoff, H.W.P.1    Mesters, I.2    Nellissen, J.J.T.M.3    Stalenhoef, A.F.4    de Kries, N.K.5


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.