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“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
Author(s) -
Ioannou Liane,
Delatycki Martin B.,
Massie John,
Hodgson Jan,
Lewis Sharon
Publication year - 2015
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-015-9833-9
Subject(s) - carrier testing , genetic counseling , feeling , population , surprise , medicine , pregnancy , family medicine , prenatal diagnosis , psychology , obstetrics , gynecology , social psychology , genetics , environmental health , fetus , biology
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.