title: Shock, adjust, decide: reproductive decision making in cystic fibrosis (CF) carrier couples--a qualitative study.
abstract: 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.
authors: Genetic Medicine, Manchester Academic Health Science Centre, University of Manchester, Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK. Jessica.myring@nhs.net
authors: Jessica
authors: J
authors: Myring
authors: William
authors: W
authors: Beckett
authors: Rupinder
authors: R
authors: Jassi
authors: Theresa
authors: T
authors: Roberts
authors: Richard
authors: R
authors: Sayers
authors: Diana
authors: D
authors: Scotcher
authors: Marion
authors: M
authors: McAllister
mesh_terms: D000223:Adaptation, Psychological; D003550:Cystic Fibrosis / Q000235:genetics / Q000503:physiopathology* / Q000523:psychology; D003657:Decision Making; D005260:Female; D006580:Genetic Carrier Screening; D006801:Humans; D008297:Male; D012098:Reproduction; D006113:United Kingdom