"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.
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.
Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Melbourne, Australia.|Department of Medicine, Monash University, Melbourne, Australia.
Liane
L
Ioannou
Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Melbourne, Australia.|Department of Medicine, Monash University, Melbourne, Australia.|Department of Paediatrics, University of Melbourne, Melbourne, Australia.|Clinical Genetics, Austin Health, Melbourne, Australia.
Martin B
MB
Delatycki
Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Melbourne, Australia.|Department of Respiratory Medicine, Royal Children's Hospital, Melbourne, Australia.|Department of Paediatrics, University of Melbourne, Melbourne, Australia.
John
J
Massie
Department of Paediatrics, University of Melbourne, Melbourne, Australia.|Genetics Education and Health Research, Murdoch Childrens Research Institute, Melbourne, Australia.
Jan
J
Hodgson
Department of Paediatrics, University of Melbourne, Melbourne, Australia. sharon.lewis@mcri.edu.au.|Public Health Genetics, Murdoch Childrens Research Institute, Flemington Rd, Parkville, VIC, 3052, Melbourne, Australia. sharon.lewis@mcri.edu.au.
Sharon
S
Lewis
D000328:Adult; D003550:Cystic Fibrosis / Q000235:genetics / Q000517:prevention & control / Q000523:psychology*; D003657:Decision Making; D005260:Female; D006580:Genetic Carrier Screening; D005817:Genetic Counseling / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008403:Mass Screening / Q000379:methods*; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D016742:Preconception Care / Q000379:methods*; D011247:Pregnancy; D018454:Spouses / Q000523:psychology* / Q000706:statistics & numerical data; D014739:Victoria / Q000453:epidemiology
Attitudes; Cystic fibrosis; Cystic fibrosis carrier screening; Genetic counseling; Genetic screening