메뉴 건너뛰기




Volumn 23, Issue 6, 2014, Pages 1022-1033

LQTS Parents’ Reflections About Genetic Risk Knowledge and their Need to Know or Not to Know their Children’s Carrier Status

Author keywords

Autonomy; Child; DNA test; Genetic knowledge; Long QT syndrome; Parents; Responsibility; Rights; Risk information

Indexed keywords

ADAPTIVE BEHAVIOR; ADOLESCENT; ADULT; ATTITUDE TO HEALTH; CHILD; EDUCATION; GENETIC PREDISPOSITION; GENETIC SCREENING; HUMAN; INFANT; INTERPERSONAL COMMUNICATION; LONG QT SYNDROME; MALE; PARENT; PROCEDURES; PSYCHOLOGY; RISK; YOUNG ADULT;

EID: 84909968163     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-014-9727-2     Document Type: Article
Times cited : (7)

References (24)
  • 1
    • 53949123575 scopus 로고    scopus 로고
    • Living with long QT syndrome: a qualitative study of coping with increased risk of sudden cardiac death
    • PID: 18719982
    • Andersen, J., Oyen, N., Bjorvatn, C., & Gjengedal, E. (2008). Living with long QT syndrome: a qualitative study of coping with increased risk of sudden cardiac death. Journal of Genetic Counseling, 17(5), 489–498.
    • (2008) Journal of Genetic Counseling , vol.17 , Issue.5 , pp. 489-498
    • Andersen, J.1    Oyen, N.2    Bjorvatn, C.3    Gjengedal, E.4
  • 2
    • 6444221054 scopus 로고    scopus 로고
    • The right not to know: an autonomy based approach
    • COI: 1:STN:280:DC%2BD2cvpslWhtA%3D%3D, PID: 15467071, discussion 439-440
    • Andorno, R. (2004). The right not to know: an autonomy based approach. Journal of Medical Ethics, 30(5), 435–439. discussion 439-440.
    • (2004) Journal of Medical Ethics , vol.30 , Issue.5 , pp. 435-439
    • Andorno, R.1
  • 4
    • 39449116878 scopus 로고    scopus 로고
    • The micropolitics of responsibility visa—vis autonomy: parental accounts of childhood genetic testing and (non)disclosure
    • Arribas-Ayllon, M., Sarangi, S., & Clarke, A. (2008). The micropolitics of responsibility visa—vis autonomy: parental accounts of childhood genetic testing and (non)disclosure. Sociology of Health & Illness, 30(2), 255–271. doi:10.1111/j.1467-9566.2007.01037.x.
    • (2008) Sociology of Health & Illness , vol.30 , Issue.2 , pp. 255-271
    • Arribas-Ayllon, M.1    Sarangi, S.2    Clarke, A.3
  • 5
    • 35048861775 scopus 로고    scopus 로고
    • Life after BRCA1/2 testing: family communication and support issues
    • PID: 17917144
    • DeMarco, T. A., & McKinnon, W. C. (2006). Life after BRCA1/2 testing: family communication and support issues. Breast Disease, 27, 127–136.
    • (2006) Breast Disease , vol.27 , pp. 127-136
    • DeMarco, T.A.1    McKinnon, W.C.2
  • 6
    • 33746039364 scopus 로고    scopus 로고
    • When I go in to wake the I wonder: parental perceptions about congenital long QT syndrome
    • PID: 16719847
    • Farnsworth, M. M., Fosyth, D., Haglund, C., & Ackerman, M. J. (2006). When I go in to wake the I wonder: parental perceptions about congenital long QT syndrome. Journal of the American Academy of Nurse Practitioners, 18(6), 284–290. doi:10.1111/j.1745-7599.2006.00132.x.
    • (2006) Journal of the American Academy of Nurse Practitioners , vol.18 , Issue.6 , pp. 284-290
    • Farnsworth, M.M.1    Fosyth, D.2    Haglund, C.3    Ackerman, M.J.4
  • 7
    • 34848813214 scopus 로고    scopus 로고
    • Process and outcome in communication of genetic information within families: a systematic review
    • PID: 17609674
    • Gaff, C. L., Clarke, A. J., Atkinson, P., Sivell, S., Elwyn, G., Iredale, R., et al. (2007). Process and outcome in communication of genetic information within families: a systematic review. European Journal of Human Genetics: EJHG, 15(10), 999–1011. doi:10.1038/sj.ejhg.5201883.
    • (2007) European Journal of Human Genetics: EJHG , vol.15 , Issue.10 , pp. 999-1011
    • Gaff, C.L.1    Clarke, A.J.2    Atkinson, P.3    Sivell, S.4    Elwyn, G.5    Iredale, R.6
  • 8
    • 77953324578 scopus 로고    scopus 로고
    • Health care professionals’ views of sharing information with families who have a child with a genetic condition
    • PID: 20354897
    • Gallo, A. M., Angst, D. B., Knafl, K. A., Twomey, J. G., & Hadley, E. (2010). Health care professionals’ views of sharing information with families who have a child with a genetic condition. Journal of Genetic Counseling, 19(3), 296–304. doi:10.1007/s10897-010-9286-0.
    • (2010) Journal of Genetic Counseling , vol.19 , Issue.3 , pp. 296-304
    • Gallo, A.M.1    Angst, D.B.2    Knafl, K.A.3    Twomey, J.G.4    Hadley, E.5
  • 10
    • 0037398070 scopus 로고    scopus 로고
    • Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information
    • COI: 1:STN:280:DC%2BD3s7pvVWgtQ%3D%3D, PID: 12672886, discussion 80-3
    • Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., Murday, V., & Watson, M. (2003). Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. Journal of Medical Ethics, 29(2), 74–79. discussion 80-3.
    • (2003) Journal of Medical Ethics , vol.29 , Issue.2 , pp. 74-79
    • Hallowell, N.1    Foster, C.2    Eeles, R.3    Ardern-Jones, A.4    Murday, V.5    Watson, M.6
  • 12
    • 25644434379 scopus 로고    scopus 로고
    • Can parents adjust to the idea that their child is at risk for a sudden death?: Psychological impact of risk for long QT syndrome
    • PID: 16149070
    • Hendriks, K. S., Grosfeld, F. J., van Tintelen, J. P., van Langen, I. M., Wilde, A. A., van den Bout, J., et al. (2005a). Can parents adjust to the idea that their child is at risk for a sudden death?: Psychological impact of risk for long QT syndrome. American Journal of Medical Genetics. Part A, 138A(2), 107–112. doi:10.1002/ajmg.a.30861.
    • (2005) American Journal of Medical Genetics. Part A , vol.138A , Issue.2 , pp. 107-112
    • Hendriks, K.S.1    Grosfeld, F.J.2    van Tintelen, J.P.3    van Langen, I.M.4    Wilde, A.A.5    van den Bout, J.6
  • 13
    • 20444481648 scopus 로고    scopus 로고
    • High distress in parents whose children undergo predictive testing for long QT syndrome
    • PID: 15925886
    • Hendriks, K. S., Grosfeld, F. J., Wilde, A. A., van den Bout, J., van Langen, I. M., van Tintelen, J. P., et al. (2005b). High distress in parents whose children undergo predictive testing for long QT syndrome. Community Genetics, 8(2), 103–113. doi:10.1159/000084778.
    • (2005) Community Genetics , vol.8 , Issue.2 , pp. 103-113
    • Hendriks, K.S.1    Grosfeld, F.J.2    Wilde, A.A.3    van den Bout, J.4    van Langen, I.M.5    van Tintelen, J.P.6
  • 14
    • 42649099942 scopus 로고    scopus 로고
    • Familial disease with a risk of sudden death: a longitudinal study of the psychological consequences of predictive testing for long QT syndrome
    • PID: 18452877
    • Hendriks, K. S., Hendriks, M. M., Birnie, E., Grosfeld, F. J., Wilde, A. A., van den Bout, J., et al. (2008). Familial disease with a risk of sudden death: a longitudinal study of the psychological consequences of predictive testing for long QT syndrome. Heart Rhythm, 5(5), 719–724. doi:10.1016/j.hrthm.2008.01.032.
    • (2008) Heart Rhythm , vol.5 , Issue.5 , pp. 719-724
    • Hendriks, K.S.1    Hendriks, M.M.2    Birnie, E.3    Grosfeld, F.J.4    Wilde, A.A.5    van den Bout, J.6
  • 15
    • 0027240040 scopus 로고
    • Shared understanding of the qualitative research process. Guidelines for the medical researcher
    • COI: 1:STN:280:DyaK3szms1SmsA%3D%3D, PID: 8359612
    • Malterud, K. (1993). Shared understanding of the qualitative research process. Guidelines for the medical researcher. Family Practice, 10(2), 201–206.
    • (1993) Family Practice , vol.10 , Issue.2 , pp. 201-206
    • Malterud, K.1
  • 16
    • 3543146182 scopus 로고    scopus 로고
    • Family matters”: a conceptual framework for genetic testing in children
    • PID: 19739280
    • McConkie-Rosell, A., & Spiridigliozzi, G. A. (2004). “Family matters”: a conceptual framework for genetic testing in children. Journal of Genetic Counseling, 13(1), 9–29.
    • (2004) Journal of Genetic Counseling , vol.13 , Issue.1 , pp. 9-29
    • McConkie-Rosell, A.1    Spiridigliozzi, G.A.2
  • 18
    • 17644383213 scopus 로고    scopus 로고
    • Embodied action, enacted bodies: the example of Hypoglycaemia
    • Mol, A., & Law, J. (2004). Embodied action, enacted bodies: the example of Hypoglycaemia. Body and Society, 10(2–3), 43–62.
    • (2004) Body and Society , vol.10 , Issue.2-3 , pp. 43-62
    • Mol, A.1    Law, J.2
  • 19
    • 0033514263 scopus 로고    scopus 로고
    • Low penetrance in the long-QT syndrome: clinical impact
    • COI: 1:STN:280:DyaK1M7is1aquw%3D%3D, PID: 9927399
    • Priori, S. G., Napolitano, C., & Schwartz, P. J. (1999). Low penetrance in the long-QT syndrome: clinical impact. Circulation, 99(4), 529–533.
    • (1999) Circulation , vol.99 , Issue.4 , pp. 529-533
    • Priori, S.G.1    Napolitano, C.2    Schwartz, P.J.3
  • 21
    • 0035125647 scopus 로고    scopus 로고
    • Is there a case in favour of predictive genetic testing in young children?
    • COI: 1:STN:280:DC%2BD3MnkslOqug%3D%3D, PID: 11699548
    • Robertson, S., & Savulescu, J. (2001). Is there a case in favour of predictive genetic testing in young children? Bioethics, 15(1), 26–49.
    • (2001) Bioethics , vol.15 , Issue.1 , pp. 26-49
    • Robertson, S.1    Savulescu, J.2
  • 22
    • 3042660429 scopus 로고    scopus 로고
    • Stillbirths, sudden infant deaths, and Long-QT syndrome
    • PID: 15210606
    • Schwartz, P. J. (2004). Stillbirths, sudden infant deaths, and Long-QT syndrome. Circulation, 109(24), 2930–2932. doi:10.1161/01.cir.0000133180.77213.43.
    • (2004) Circulation , vol.109 , Issue.24 , pp. 2930-2932
    • Schwartz, P.J.1
  • 23
    • 78650169725 scopus 로고    scopus 로고
    • Impediments to DNA testing and cascade screening for hypertrophic cardiomyopathy and Long QT syndrome: a qualitative study of patient experiences
    • PID: 20680418
    • Smart, A. (2010). Impediments to DNA testing and cascade screening for hypertrophic cardiomyopathy and Long QT syndrome: a qualitative study of patient experiences. Journal of Genetic Counseling, 19(6), 630–639. doi:10.1007/s10897-010-9314-0.
    • (2010) Journal of Genetic Counseling , vol.19 , Issue.6 , pp. 630-639
    • Smart, A.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.