title: Pregnancy as foreground in cystic fibrosis carrier testing decisions in primary care.
abstract: Cystic fibrosis carrier testing (CFCT) is among the first of the DNA tests offered prenatally in primary care settings. This paper from a descriptive qualitative study describes the influence of pregnancy in CFCT decisions by women receiving community-based prenatal care. Twenty-seven women receiving prenatal care in Midwestern U.S. primary care clinics completed semistructured interviews. Audiotaped interviews were analyzed using content analysis. Participants described decision-making influences and strategies from the perspective of "being pregnant." Patterns of attitudes and beliefs include (1) dealing with emotions, (2) pregnancy is natural, and (3) thinking about the baby. Strategies in the decision-making process included (1) reducing stress, (2) choosing what is relevant, (3) doing everything right, (4) wanting to be prepared, (5) delaying information, and (6) trusting God. While other factors were mentioned by some women, major themes reflect the influence of currently being pregnant on the decision-making process. These findings suggest that pregnancy is a powerful influence on the decision-making process and may not be the optimal time to make fully informed decisions regarding genetic carrier testing. Further understanding of factors influencing the genetic testing decision-making process is needed. Offering CFCT prior to conception is advocated.
authors.affiliation: College of Nursing, The University of Iowa, Iowa City, Iowa, USA. kathleen-sparbel@uiowa.edu
authors.forename: Kathleen J H
authors.initials: KJ
authors.lastname: Sparbel
authors.forename: Janet K
authors.initials: JK
authors.lastname: Williams
mesh_terms: D000328:Adult; D003550:Cystic Fibrosis / Q000235:genetics* / Q000523:psychology*; D019005:Cystic Fibrosis Transmembrane Conductance Regulator / Q000235:genetics; D003657:Decision Making; D005260:Female; D006580:Genetic Carrier Screening; D005817:Genetic Counseling / Q000523:psychology; D005820:Genetic Testing / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D015146:Midwestern United States; D009154:Mutation; D011247:Pregnancy; D011320:Primary Health Care; D012068:Religion and Medicine; D055815:Young Adult
chemical_list: C505032:CFTR protein, human; D019005:Cystic Fibrosis Transmembrane Conductance Regulator