caa a22 4500 605544417 CHVBK 20210128100931.0 cr unu---uuuuu 210128e20151201xx s 000 0 eng 10.1007/s10897-015-9833-9 doi (NATIONALLICENCE)springer-10.1007/s10897-015-9833-9 "Suddenly Having two Positive People who are Carriers is a Whole New Thing”- Experiences of Couples Both Identified as Carriers of Cystic Fibrosis Through a Population-Based Carrier Screening Program in Australia [Elektronische Daten] [Liane Ioannou, Martin Delatycki, John Massie, Jan Hodgson, Sharon Lewis] A population-based CF carrier screening program was implemented in Victoria, Australia in 2006. This study explored the experiences of couples when both partners were identified as CF carriers. Between January 2006 and December 2010, 10 carrier couples were identified and invited to undertake a semi-structured interview. Nine interviews were conducted, seven couple interviews and two individual interviews. One couple declined to participate due to the recent termination of an affected pregnancy. Interviews were analyzed using inductive content analysis. All couples experienced surprise on learning their carrier couple result. The couples who were pregnant at the time of screening chose to have prenatal diagnosis, with the majority considering it to be the "next step.” The two couples who had an affected pregnancy reported feelings of devastation and grief upon receiving their prenatal diagnosis result and terminated the pregnancy. All carrier couples were offered free genetic counseling, with only one couple declining the offer. Couples were unprepared for a positive carrier couple result. However, all the couples changed their reproductive behavior as a result of their carrier status. The results of this study have been used to inform the program and service offered to CF carrier couples particularly with respect to genetic counseling for reproductive decision making. National Society of Genetic Counselors, Inc., 2015 Genetic screening nationallicence Cystic fibrosis nationallicence Cystic fibrosis carrier screening nationallicence Attitudes nationallicence Genetic counseling nationallicence CF : Cystic fibrosis nationallicence VCGS : Victorian Clinical Genetics Services nationallicence PND : Prenatal diagnosis nationallicence TOP : Termination of pregnancy nationallicence PGD : Preimplantation genetic diagnosis nationallicence Ioannou Liane Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Melbourne, Australia aut Delatycki Martin Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Melbourne, Australia aut Massie John Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Melbourne, Australia aut Hodgson Jan Department of Paediatrics, University of Melbourne, Melbourne, Australia aut Lewis Sharon Department of Paediatrics, University of Melbourne, Melbourne, Australia aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/6(2015-12-01), 987-1000 1059-7700 24:6<987 2015 24 10897 https://doi.org/10.1007/s10897-015-9833-9 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-015-9833-9 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Ioannou Liane Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Melbourne, Australia aut NATIONALLICENCE 700 1- Delatycki Martin Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Melbourne, Australia aut NATIONALLICENCE 700 1- Massie John Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Melbourne, Australia aut NATIONALLICENCE 700 1- Hodgson Jan Department of Paediatrics, University of Melbourne, Melbourne, Australia aut NATIONALLICENCE 700 1- Lewis Sharon Department of Paediatrics, University of Melbourne, Melbourne, Australia aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/6(2015-12-01), 987-1000 1059-7700 24:6<987 2015 24 10897