Happily Ever After: Telling the Story of Cystic Fibrosis Carrier Testing (CFCT) Decisions During Pregnancy

2.50
Hdl Handle:
http://hdl.handle.net/10755/158742
Type:
Presentation
Title:
Happily Ever After: Telling the Story of Cystic Fibrosis Carrier Testing (CFCT) Decisions During Pregnancy
Abstract:
Happily Ever After: Telling the Story of Cystic Fibrosis Carrier Testing (CFCT) Decisions During Pregnancy
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2009
Author:Sparbel, Kathleen, Ph.D. FNP-BC
P.I. Institution Name:University of Iowa
Title:College of Nursing
Contact Address:914 North Pine Street, Davenport, IA, 52804-4134, USA
Contact Telephone:563 326 2752
Co-Authors:K.J. Sparbel, L. Ayres, College of Nursing, University of Iowa, Iowa City, IA;
Problem: The American College of Obstetricians and Gynecologists recommended offering Cystic Fibrosis Carrier Testing (CFCT) in prenatal primary care settings beginning in 2001. However, the process of pregnant women's decision-making about genetic carrier testing is poorly understood. Purpose: Identify patterns of decision-making in the stories women tell of their CFCT decisions in community-based OB/GYN settings. Theoretical/Conceptual Framework: Pierce and Hicks Framework of Interactive Decision-Making (2001) constructs were used to initially organize data analysis. Subjects: 27 pregnant women receiving prenatal care from primary care OB/GYN clinics who had been offered and made a decision whether to have CFCT. Methods: A narrative analysis was conducted of 27 interviews of pregnant women offered CFCT from three Midwestern OB/GYN clinics. The interviews focused on experiences during the CFCT decision-making process. Interviews were audiotaped and transcribed verbatim. Narrative analysis included both within and across case approaches. NVIVO 7 qualitative software assisted in data management. Results: Most participants (23/27) declined testing. Women focused on the pregnancy as its own story, which concluded with the birth of a healthy infant. Women filtered information in order to support the story of a healthy pregnancy and baby. Whether CFCT was viewed as a complicating action, a positive response to life circumstances, or a barrier to story resolution varied according to the woman's situational characteristics, experiential context, and what was needed from the provider to support the story. Conclusions: The CFCT decision-making process and the meaning of testing decisions can be better understood through hearing patient's stories. Such understanding can help differentiate which tests and patient groups may be amenable to policy and practice interventions versus implications for information in the clinical setting, thus facilitating a more sensitive and nuanced discussion with prenatal patients as they navigate genomic healthcare decisions.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Midwest Nursing Research Society

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleHappily Ever After: Telling the Story of Cystic Fibrosis Carrier Testing (CFCT) Decisions During Pregnancyen_GB
dc.identifier.urihttp://hdl.handle.net/10755/158742-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Happily Ever After: Telling the Story of Cystic Fibrosis Carrier Testing (CFCT) Decisions During Pregnancy</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Midwest Nursing Research Society</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2009</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Sparbel, Kathleen, Ph.D. FNP-BC</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Iowa</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">College of Nursing</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">914 North Pine Street, Davenport, IA, 52804-4134, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">563 326 2752</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">kathleen-sparbel@uiowa.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">K.J. Sparbel, L. Ayres, College of Nursing, University of Iowa, Iowa City, IA;</td></tr><tr><td colspan="2" class="item-abstract">Problem: The American College of Obstetricians and Gynecologists recommended offering Cystic Fibrosis Carrier Testing (CFCT) in prenatal primary care settings beginning in 2001. However, the process of pregnant women's decision-making about genetic carrier testing is poorly understood. Purpose: Identify patterns of decision-making in the stories women tell of their CFCT decisions in community-based OB/GYN settings. Theoretical/Conceptual Framework: Pierce and Hicks Framework of Interactive Decision-Making (2001) constructs were used to initially organize data analysis. Subjects: 27 pregnant women receiving prenatal care from primary care OB/GYN clinics who had been offered and made a decision whether to have CFCT. Methods: A narrative analysis was conducted of 27 interviews of pregnant women offered CFCT from three Midwestern OB/GYN clinics. The interviews focused on experiences during the CFCT decision-making process. Interviews were audiotaped and transcribed verbatim. Narrative analysis included both within and across case approaches. NVIVO 7 qualitative software assisted in data management. Results: Most participants (23/27) declined testing. Women focused on the pregnancy as its own story, which concluded with the birth of a healthy infant. Women filtered information in order to support the story of a healthy pregnancy and baby. Whether CFCT was viewed as a complicating action, a positive response to life circumstances, or a barrier to story resolution varied according to the woman's situational characteristics, experiential context, and what was needed from the provider to support the story. Conclusions: The CFCT decision-making process and the meaning of testing decisions can be better understood through hearing patient's stories. Such understanding can help differentiate which tests and patient groups may be amenable to policy and practice interventions versus implications for information in the clinical setting, thus facilitating a more sensitive and nuanced discussion with prenatal patients as they navigate genomic healthcare decisions.</td></tr></table>en_GB
dc.date.available2011-10-26T21:21:08Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T21:21:08Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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