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Articles

Uptake of genetic counselling services by patients with cystic fibrosis and their families

, BSc, BSc(Hons), MSc(Med), MSc(Med) (Genetic Counselling), , MB BCh, FCPaed(SA), Cert(Medical Genetics), MSc(Med) (Genetic Counselling) & , BSc, BSc(Hons), MB BCh, PhD
Pages 250-255 | Published online: 15 Aug 2014

References

  • Boat T. Cystic fibrosis. In: Behrman RE, Kliegman, R, Jenson HB, eds. Nelson textbook of pediatrics. Philadelphia: Saunders, 2004; p.1437–1450.
  • Riordan JR, Rommens JM, Kerem B, et al. Identification of the cystic fibrosis gene: cloning and characterization of complementary DNA. Science.1989; 245(4922): 1066–1073.
  • Minasian C, McCullagh A, Bush A. Cystic fibrosis in neonates and infants. Early Hum Dev. 2005; 81(12): 997–1004.
  • Hill ID, MacDonald WB, Bowie MD, Ireland JD. Cystic fibrosis in Cape Town. S Afr Med J. 1988; 73(3): 147–149.
  • Padoa C, Goldman A, Jenkins T, Ramsay M. Cystic fibrosis carrier frequencies in populations of African origin. J Med Genet. 1999; 36(1): 41–44.
  • The Cystic Fibrosis Genetic Analysis Consortium. Cystic fibrosis mutation database [homepage on the Internet]. 2012 Available from: http://www.genet.sickkids.on.ca/cftr/StatisticsPage.html
  • Weil J. Psychosocial genetic counselling. In: Motulsky AG, Bobrow M, Harper P, Scriver C, editors. Oxford: Oxford University Press, 2000; p. 8, 53–54, 102–105, 125–133, 199.
  • Carles S, Desgeorges M, Goldman A, et al. First report of CFTR mutations in black cystic fibrosis patients of southern African origin. J Med Genet. 1996; 33(9): 802–804.
  • Henley LD, Hill ID. Errors, gaps, and misconceptions in the disease- related knowledge of cystic fibrosis patients and their families. Pediatrics. 1990; 85(6): 1008–1014.
  • Kromberg J, Schreier A, Dub B. Working with families with cystic fibrosis. Social Work/Maatskaplike Werk. 1979; 15: 16–20.
  • Fanos JH, Johnson JP. Barriers to carrier testing for adult cystic fibrosis sibs: the importance of not knowing. Am J Med Genet. 1995; 59(1): 85–91.
  • Collins V, Halliday J, Kahler S, Williamson R. Parents' experiences with genetic counseling after the birth of a baby with a genetic disorder: an exploratory study. J Genet Couns. 2001; 10: 53–72.
  • Veach PM, Truesdell SE, LeRoy BS, Bartels DM. Client perceptions of the impact of genetic counseling: an exploratory study. J Genet Couns. 1999; 8: 191–216.
  • Sorenson JR, Cheuvront B, DeVellis B, et al. Acceptance of home and clinic- based cystic fibrosis carrier education and testing by first, second, and third degree relatives of cystic fibrosis patients. Am J Med Genet. 1997; 70(2): 121–129.
  • WHO. Proposed international guidelines on ethical issues in medical genetics and genetic services. Report of a WHO meeting on ethical issues in medical genetics. 1998.
  • McConkie-Rosell A, DeVellis BM. Threat to parental role: a possible mechanism of altered self-concept related to carrier knowledge. J Genet Couns. 2000; 9: 285–302.
  • Hulsebus DR, Williams J. Cystic fibrosis: a new perspective in genetic counseling. J Pediatr Health Care. 1992; 6(6): 338–342.