Literature DB >> 19309287

Pregnancy as foreground in cystic fibrosis carrier testing decisions in primary care.

Kathleen J H Sparbel1, Janet K Williams.   

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.

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Year:  2009        PMID: 19309287      PMCID: PMC2981356          DOI: 10.1089/gtmb.2008.0085

Source DB:  PubMed          Journal:  Genet Test Mol Biomarkers        ISSN: 1945-0257


  49 in total

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2.  Psychosocial and educational outcomes associated with home- and clinic-based pretest education and cystic fibrosis carrier testing among a population of at-risk relatives.

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3.  Clinical and genetic comparisons of patients with cystic fibrosis, with or without meconium ileus.

Authors:  E Kerem; M Corey; B Kerem; P Durie; L C Tsui; H Levison
Journal:  J Pediatr       Date:  1989-05       Impact factor: 4.406

4.  Identification of the cystic fibrosis gene: cloning and characterization of complementary DNA.

Authors:  J R Riordan; J M Rommens; B Kerem; N Alon; R Rozmahel; Z Grzelczak; J Zielenski; S Lok; N Plavsic; J L Chou
Journal:  Science       Date:  1989-09-08       Impact factor: 47.728

Review 5.  Anxiety disorders during pregnancy and the postpartum period: A systematic review.

Authors:  Lori E Ross; Linda M McLean
Journal:  J Clin Psychiatry       Date:  2006-08       Impact factor: 4.384

6.  A model for offering carrier screening for fragile X syndrome to nonpregnant women: results from a pilot study.

Authors:  Sylvia Metcalfe; Alice Jacques; Alison Archibald; Trent Burgess; Veronica Collins; Anna Henry; Kathleen McNamee; Leslie Sheffield; Howard Slater; Samantha Wake; Jonathan Cohen
Journal:  Genet Med       Date:  2008-07       Impact factor: 8.822

7.  Identification of the cystic fibrosis gene: chromosome walking and jumping.

Authors:  J M Rommens; M C Iannuzzi; B Kerem; M L Drumm; G Melmer; M Dean; R Rozmahel; J L Cole; D Kennedy; N Hidaka
Journal:  Science       Date:  1989-09-08       Impact factor: 47.728

8.  Needs assessment study of genetics education for general practitioners in Australia.

Authors:  Sylvia Metcalfe; Rosalind Hurworth; Jennifer Newstead; Rosemary Robins
Journal:  Genet Med       Date:  2002 Mar-Apr       Impact factor: 8.822

Review 9.  The future is now: carrier screening for all populations.

Authors:  Beth A Pletcher; Susan J Gross; Kristin G Monaghan; Deborah A Driscoll; Michael S Watson
Journal:  Genet Med       Date:  2008-01       Impact factor: 8.822

10.  Genetic risks to the mother and the infant: assessment, counseling, and management.

Authors:  Stuart K Shapira; Siobhan Dolan
Journal:  Matern Child Health J       Date:  2006-09
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  1 in total

1.  The changing landscape of carrier screening: expanding technology and options?.

Authors:  Michelle L McGowan; Deborah Cho; Richard R Sharp
Journal:  Health Matrix Clevel       Date:  2013
  1 in total

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