The Value of Mixed Methods: A Study of Genetic Testing in Newborn Screening for Cystic Fibrosis

2.50
Hdl Handle:
http://hdl.handle.net/10755/160900
Type:
Presentation
Title:
The Value of Mixed Methods: A Study of Genetic Testing in Newborn Screening for Cystic Fibrosis
Abstract:
The Value of Mixed Methods: A Study of Genetic Testing in Newborn Screening for Cystic Fibrosis
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2006
Author:Tluczek, Audrey, PhD, RN
P.I. Institution Name:University of Wisconsin
Title:Assistant Professor
Contact Address:School of Nursing, 600 Highland Ave., Madison, WI, 53792, USA
Contact Telephone:608/263-6111
Purpose: A mixed-methods design identified the psychosocial effects of genetic testing in cystic fibrosis (CF) newborn screening (NBS) on parents of infants with abnormal test results. Theoretical/Conceptual Framework: Symbolic Interactionism Subjects: Fourteen families whose infants had positive CF NBS results participated in this study. Method: Grounded Theory interviews produced a conceptual framework describing parents' experiences during the waiting period from notification of positive NBS results to diagnostic sweat test results. Hypotheses about factors that influenced the intensity of parents' distress were derived from this model and the Center for Epidemiological Studies Depression Scales (CES-D) was used to quantify this distress. Results: The conceptual framework generated from a dimensional analyses of interviews showed that parents experienced cognitive uncertainty and emotional distress which were influenced by physicians' approaches to informing parents; parents' prior knowledge of NBS, CF, their carrier status, and genetic information; and their infant's general health. Parents coped by searching for information, requesting a sweat test as soon as possible, assessing their infant's risk/health, seeking support, praying, or not talking about the NBS results. The quantitative findings showed that most parents reported high levels of emotional distress during their wait for the sweat test appointment [CES-D Mean (SD)=16.5(6.7); 43.1% in the clinical range; median wait=7 days; Range=3-35]. CES-D scores of these parents also were significantly higher than those of comparison parents whose infants had normal NBS (p<.01). Conclusion: The waiting period from notification of positive CF NBS to diagnostic test results can be psychologically distressing to parents causing depressive symptoms that vary depending upon their perceptions about the likelihood their infant has CF. The conceptual framework also offers direction for future research by suggesting hypotheses about potential intervention windows that may be implemented a various junctures from the time of prenatal care through the diagnostic sweat test appointment.
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.titleThe Value of Mixed Methods: A Study of Genetic Testing in Newborn Screening for Cystic Fibrosisen_GB
dc.identifier.urihttp://hdl.handle.net/10755/160900-
dc.description.abstract<table><tr><td colspan="2" class="item-title">The Value of Mixed Methods: A Study of Genetic Testing in Newborn Screening for Cystic Fibrosis</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">2006</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Tluczek, Audrey, PhD, RN</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Wisconsin</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Assistant Professor</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">School of Nursing, 600 Highland Ave., Madison, WI, 53792, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">608/263-6111</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">atluczek@wisc.edu</td></tr><tr><td colspan="2" class="item-abstract">Purpose: A mixed-methods design identified the psychosocial effects of genetic testing in cystic fibrosis (CF) newborn screening (NBS) on parents of infants with abnormal test results. Theoretical/Conceptual Framework: Symbolic Interactionism Subjects: Fourteen families whose infants had positive CF NBS results participated in this study. Method: Grounded Theory interviews produced a conceptual framework describing parents' experiences during the waiting period from notification of positive NBS results to diagnostic sweat test results. Hypotheses about factors that influenced the intensity of parents' distress were derived from this model and the Center for Epidemiological Studies Depression Scales (CES-D) was used to quantify this distress. Results: The conceptual framework generated from a dimensional analyses of interviews showed that parents experienced cognitive uncertainty and emotional distress which were influenced by physicians' approaches to informing parents; parents' prior knowledge of NBS, CF, their carrier status, and genetic information; and their infant's general health. Parents coped by searching for information, requesting a sweat test as soon as possible, assessing their infant's risk/health, seeking support, praying, or not talking about the NBS results. The quantitative findings showed that most parents reported high levels of emotional distress during their wait for the sweat test appointment [CES-D Mean (SD)=16.5(6.7); 43.1% in the clinical range; median wait=7 days; Range=3-35]. CES-D scores of these parents also were significantly higher than those of comparison parents whose infants had normal NBS (p&lt;.01). Conclusion: The waiting period from notification of positive CF NBS to diagnostic test results can be psychologically distressing to parents causing depressive symptoms that vary depending upon their perceptions about the likelihood their infant has CF. The conceptual framework also offers direction for future research by suggesting hypotheses about potential intervention windows that may be implemented a various junctures from the time of prenatal care through the diagnostic sweat test appointment.</td></tr></table>en_GB
dc.date.available2011-10-26T23:12:35Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T23:12:35Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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