Parents' communication with siblings of children affected by an inherited genetic condition

Journal of Genetic Counseling

Volumn 20, Issue 4, 2011, Pages 374-383

  Plumridge, Gillian ^a   Metcalfe, Alison ^b   Coad, Jane ^c   Gill, Paramjit ^a  

^a UNIVERSITY OF BIRMINGHAM   (United Kingdom)

^b KING'S COLLEGE LONDON   (United Kingdom)

^c Institute for Clean Growth and Future Mobility   (United Kingdom)

Author keywords

Family communication; Genetic counseling; Genetic risk; Inherited condition; Sibling; Support

Indexed keywords

ADOLESCENT; ARTICLE; CHILD; CHILD PARENT RELATION; FEMALE; GENETIC DISORDER; GENETICS; HUMAN; MALE; PARENT; PSYCHOLOGICAL ASPECT; SIBLING;

ADOLESCENT; CHILD; FEMALE; GENETIC DISEASES, INBORN; HUMANS; MALE; PARENT-CHILD RELATIONS; PARENTS; SIBLINGS;

EID: 80052644591     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-011-9361-1     Document Type: Article

References (30)

1. Bandura, A. (1977). Social learning theory. Upper Saddle River: Prentice Hall.
2. Biesecker, B., & Erby, L. (2008). Adaptation to living with a genetic condition or risk: Amini-review. Clinical Genetics, 74(5), 401-407.
3. Bluebond-langner, M. (1991). Livingwith cystic-fibrosis-thewell sibling perspective. Medical Anthropology Quarterly, 5(2), 133-152.
4. Blumer, H. (1969). Symbolic interactionism: Perspective and method. California: University of California Press.
5. Coad, J., Plumridge, G., & Metcalfe, A. (2009). Involving children and young people in the development of art-based research tools. Nurse Researcher, 16(4), 56-64.
6. Corbin, J., & Strauss, A. (2008). Basics of qualitative research. Thousand Oaks: Sage.
7. Cowen, L., Mok, J., Corey, M., MacMillan, H., Simmons, R., & Levison, H. (1986). Psychologic adjustment of the family with a member who has cystic fibrosis. Pediatrics, 77(5), 745-753. (Pubitemid 16107040)
8. Derouin, D., & Jessee, P. O. (1996). Impact of a chronic illness in childhood: Siblings' perceptions. Issues in Comprehensive Pediatric Nursing, 19(2), 135-147. (Pubitemid 126432531)
9. Fanos, J. H., & Puck, J. M. (2001). Family pictures: Growing up with a brother with X-linked severe combined immunodeficiency. American Journal of Medical Genetics, 98(1), 57-63. (Pubitemid 32041851)
10. Fanos, J. H., Davis, J., & Puck, J. M. (2001). Sib understanding of genetics and attitudes toward carrier testing for X-linked severe combined immunodeficiency. American Journal of Medical Genetics, 98(1), 46-56. (Pubitemid 32041850)
11. Foster, C., Eiser, C., Oades, P., Sheldon, C., Tripp, J., Goldman, P., et al. (2001). Treatment demands and differential treatment of patients with cystic fibrosis and their siblings: Patient, parent and sibling accounts. Child: Care, Health and Development, 27(4), 349-364. (Pubitemid 33720748)
12. 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, 15, 999-1011. (Pubitemid 47491454)
13. Gallo, A. M., Angst, D., Knafl, K. A., & Hill Fox, F. (2009). Disclosure of genetic information within families. The American Journal of Nursing, 109(4), 65-69.
14. Hern, M. J., Beery, T. A., & Barry, D. G. (2006). Experiences of college-age youths in families with a recessive genetic condition. Journal of Family Nursing, 12(2), 119-142.
15. Houtzager, B. A., Grootenhuis, M. A., Caron, H. N., & Last, B. F. (2004). Sibling self-report, parental proxies and quality of life: The importance of multiple informants for siblings of a critically Ill child. Journal of Pediatric Hematology/Oncology, 22(1), 25-40. (Pubitemid 40054019)
16. Houtzager, B. A., Grootenhuis, M. A., Hoekstra-Weebers, J. E. H. M., & Last, B. A. (2005). One month after diagnosis: Quality of life, coping and previous functioning in siblings of children with cancer. Child: Care, Health and Development, 31(1), 75-87. (Pubitemid 40298205)
17. Hutson, S. P., & Alter, B. P. (2007). Experiences of siblings of patients with Fanconi anemia. Pediatric Blood & Cancer, 48(1), 72-79. (Pubitemid 44871596)
18. James, C. A., Holtzman, N. A., & Hadley, D. W. (2003). Perceptions of reproductive risk and carrier testing among adolescent sisters of males with chronic granulomatous disease. American Journal of Medical Genetics, 119(1), 60-69. (Pubitemid 37064102)
19. McConkie-Rosell, A., Heise, E. M., & Spiridigliozzi, G. A. (2009). Genetic risk communication: Experiences of adolescent girls and young women from families with fragile X syndrome. Journal of Genetic Counselling., 18(4), 313-325.
20. Metcalfe, A., Coad, J., Plumridge, G., Gill, P., & Farndon, P. (2008). Family communication between children and their parents about inherited genetic conditions: A meta-synthesis of the research. European Journal of Human Genetics, 16(10), 1193-2000.
21. Metcalfe, A., Plumridge, G., Coad, J., Shanks, A., & Gill, P., (2011). Parents' and children's communication about genetic risk: Qualitative study learning from families' experiences. European Journal of Human Genetics. (16 February 2011) doi:10.1038/ejhg.2010.258.
22. Phillips, S., Bohannon, W. E., Gayton, W. F., & Friedman, S. B. (1985). Parent interview findings regarding the impact of cystic fibrosis on families. Journal of Developmental and Behavioral Pediatrics, 6(3), 122-127. (Pubitemid 15065211)
23. Plumridge, G., Metcalfe, A., Coad, J., & Gill, P. (2010). Family communication about genetic risk information: Particular issues for Duchenne muscular dystrophy. American Journal of Medical Genetics, 152A(5), 1225-1232.
24. Segrin, C., & Flora, J. (2005). Family communication. New Jersey: Erlbaum.
25. Sharpe, D., & Rossiter, L. (2002). Siblings of children with a chronic illness: A meta-analysis. Journal of Pediatric Psychology, 27(8), 699-710. (Pubitemid 35387234)
26. Sobel, S., & Cowan, C. B. (2003). Ambiguous loss and disenfranchised grief: The impact of DNA predictive testing on the family as a system. Family Process, 42(1), 47-57.
27. Tercyak, K. P., Peshkin, B. N., Streisand, R., Brogan, B. M., & Lerman, C. (2001). Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-Oncology, 10 (4), 336-346. (Pubitemid 32725123)
28. Tercyak, K. P., Peshkin, B. N., DeMarco, T. A., Brogan, B. M., & Lerman, C. (2002). Parent-child factors and their effect on communicating BRCA1/2 test results to children. Patient Education and Behavior., 47(2), 145-153. (Pubitemid 34626402)
29. Wehbe, R. M., Spiridigliozzi, G. A., Heise, E. M., Dawson, D. V., & McConkie-Rosell, A. (2009). When to tell and test for genetic carrier status: Perspectives of adolescents and young adults from fragile X families. American Journal of Medical Genetics. Part A, 149A(6), 1190-1199.
30. Williams, P. D. (1997). Sibling and pediatric chronic illness: A review of the literature. International Journal of Nursing Studies, 34(4), 312-323. (Pubitemid 127384443)