Shock, Adjust, Decide: Reproductive Decision Making in Cystic Fibrosis (CF) Carrier Couples—A Qualitative Study

Cystic fibrosis (CF) is the most common recessive condition affecting the White British population. Facilitating reproductive decision making for couples at genetic risk for CF is an important aspect of genetic counseling practice in the UK. The purpose of this study was to explore the reproductive...

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Bibliographic Details
Published in:Journal of genetic counseling 2011-08, Vol.20 (4), p.404-417
Main Authors: Myring, Jessica, Beckett, William, Jassi, Rupinder, Roberts, Theresa, Sayers, Richard, Scotcher, Diana, McAllister, Marion
Format: Article
Language:English
Subjects:
Adaptation, Psychological
At risk
Biomedical and Life Sciences
Biomedicine
Carriers
Children
Clinical Psychology
Cystic fibrosis
Cystic Fibrosis - genetics
Cystic Fibrosis - physiopathology
Cystic Fibrosis - psychology
Decision Making
Ethics
Family planning
Female
Genetic Carrier Screening
Genetic counseling
Genetic risk
Gynecology
Human Genetics
Humans
Male
Original Research
Pregnancy
Public Health
Qualitative research
Reproduction
Reproductive decisions
Risk assessment
United Kingdom
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Summary:Cystic fibrosis (CF) is the most common recessive condition affecting the White British population. Facilitating reproductive decision making for couples at genetic risk for CF is an important aspect of genetic counseling practice in the UK. The purpose of this study was to explore the reproductive decision making process for 31 members of CF carrier couples (15 men and 16 women) with or without an affected child. The design involved a qualitative approach consisting of semi-structured interviews and data analysis informed by grounded theory methodology. Sex and personal experience of CF were identified as factors that may influence reproductive decision making. Findings suggest these hypotheses: (1) CF carrier couples who have an affected child/pregnancy, are more likely to embark on another pregnancy than couples who have a healthy child from an at-risk pregnancy, and (2) men and women play different roles in the reproductive decision making process. Data analysis resulted in development of a structured framework modeling the reproductive decision making process, which may be helpful in guiding genetic counseling with CF carrier couples and other at risk couples making reproductive decisions.
ISSN:1059-7700
1573-3599
DOI:10.1007/s10897-011-9363-z