False-Positive Newborn Screening Results for Cystic Fibrosis: Psychosocial Consequences During the Child's First Year

2.50
Hdl Handle:
http://hdl.handle.net/10755/158545
Type:
Presentation
Title:
False-Positive Newborn Screening Results for Cystic Fibrosis: Psychosocial Consequences During the Child's First Year
Abstract:
False-Positive Newborn Screening Results for Cystic Fibrosis: Psychosocial Consequences During the Child's First Year
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2007
Author:Tluczek, Audrey, PhD, RN
P.I. Institution Name:University of Wisconsin
Contact Address:School of Nursing - K6/346, Madison, WI, 53792, USA
Objective: This study describes parents' experiences of the newborn screening (NBS) and the consequences of false-positive results for cystic fibrosis (CF). Method: Grounded Theory guided audio taped interviews with 30 families whose infants had false-positive NBS results between 2002 and 2006. The PI or an assistant interviewed parents (n=58) in the families' homes when infants were 2-3 months, 6 months, and 12 months old. Results: Constant comparative analyses of transcribed interviews identified the following themes and contexts. During the first year when children became ill, especially with respiratory symptoms, parents reported worries about the accuracy of the sweat test. However, by one year of age only one family continued to voice lingering concerns that their child may have CF. Some parents struggled with deciding how and when to inform extended family members about the presence of a CF mutation in their family pedigree. Occasionally parents described a process of "finger pointing" among relatives in search of possible CF carriers. Some attributed previously undiagnosed health problems to the CF mutation. Several parents expressed feelings of guilt for passing a defective gene to their children and for the psychological burden that being a CF carrier may impose on their child. Other parents viewed the knowledge that their child had a CF mutation as an opportunity to receive genetic testing for themselves and for other family members. Many parents described feeling greater empathy for parents whose infants were diagnosed with CF or other health problems. Some stated that the NBS experience "put things into perspective" and reportedly helped them appreciate their child's good health and "feel closer as a family." Parents wondered how and when to inform their children about their carrier status. Most supported NBS for CF to "catch it early" and provide early intervention. There was one report of life insurance denial that was later granted following an appeal process. Conclusions: Parents reported a mix of positive and negative psychosocial consequences. Most supported NBS for CF to improved the health of affected children. Further research needs to examine the long-term consequences of false-positive NBS results.
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.titleFalse-Positive Newborn Screening Results for Cystic Fibrosis: Psychosocial Consequences During the Child's First Yearen_GB
dc.identifier.urihttp://hdl.handle.net/10755/158545-
dc.description.abstract<table><tr><td colspan="2" class="item-title">False-Positive Newborn Screening Results for Cystic Fibrosis: Psychosocial Consequences During the Child's First Year</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">2007</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-address"><td class="label">Contact Address:</td><td class="value">School of Nursing - K6/346, Madison, WI, 53792, USA</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">Objective: This study describes parents' experiences of the newborn screening (NBS) and the consequences of false-positive results for cystic fibrosis (CF). Method: Grounded Theory guided audio taped interviews with 30 families whose infants had false-positive NBS results between 2002 and 2006. The PI or an assistant interviewed parents (n=58) in the families' homes when infants were 2-3 months, 6 months, and 12 months old. Results: Constant comparative analyses of transcribed interviews identified the following themes and contexts. During the first year when children became ill, especially with respiratory symptoms, parents reported worries about the accuracy of the sweat test. However, by one year of age only one family continued to voice lingering concerns that their child may have CF. Some parents struggled with deciding how and when to inform extended family members about the presence of a CF mutation in their family pedigree. Occasionally parents described a process of &quot;finger pointing&quot; among relatives in search of possible CF carriers. Some attributed previously undiagnosed health problems to the CF mutation. Several parents expressed feelings of guilt for passing a defective gene to their children and for the psychological burden that being a CF carrier may impose on their child. Other parents viewed the knowledge that their child had a CF mutation as an opportunity to receive genetic testing for themselves and for other family members. Many parents described feeling greater empathy for parents whose infants were diagnosed with CF or other health problems. Some stated that the NBS experience &quot;put things into perspective&quot; and reportedly helped them appreciate their child's good health and &quot;feel closer as a family.&quot; Parents wondered how and when to inform their children about their carrier status. Most supported NBS for CF to &quot;catch it early&quot; and provide early intervention. There was one report of life insurance denial that was later granted following an appeal process. Conclusions: Parents reported a mix of positive and negative psychosocial consequences. Most supported NBS for CF to improved the health of affected children. Further research needs to examine the long-term consequences of false-positive NBS results.</td></tr></table>en_GB
dc.date.available2011-10-26T21:09:46Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T21:09:46Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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