Maternal Attitudes and Knowledge about Newborn Screening and Dried Blood Spot Retention

2.50
Hdl Handle:
http://hdl.handle.net/10755/308463
Category:
Abstract
Type:
Presentation
Title:
Maternal Attitudes and Knowledge about Newborn Screening and Dried Blood Spot Retention
Author(s):
True, Barbara A.; Dyson, Maynard Campbell; Roberts, Holly; Walsh, Judith; Lockwood, Suzanne W.; Newcomb, Patricia; Douglas, Becky A.
Lead Author STTI Affiliation:
Non-member
Author Details:
Barbara A. True, MN, CNS, RNC-OB, C-EFM, BarbaraTrue@texashealth.org; Maynard Campbell Dyson, MD, MA; Holly Roberts, RN, BSN, RNC-LRN; Judith Walsh, RN, PhD; Suzanne W. Lockwood, RN, PhD; Patricia Newcomb, RN, CPNP, PhD; Becky A. Douglas, MS, RNC-MNN, WHNP-BC
Abstract:

Session presented on: Sunday, November 17, 2013

Background. Prior to a 2009 lawsuit ending in destruction of over 5 million bloodspots, Texas maintained the largest repository of newborn dried blood spots (DBS) in the nation. DBS repositories are important resources for researchers, but poor informing procedures may invalidate permission for tissue donation resulting in further litigation. The purpose of this study was to describe knowledge and attitudes of mothers of newborns regarding state retention of DBS for research use.

Design. This study was a cross-sectional survey administered to 548 mothers of newborns in post-partum units in five North Texas hospitals using the Maternal Attitudes and Knowledge about Newborn Screening Survey, developed by the investigators. Summary statistics were provided each site and surveys were combined for final data analysis. Multiple regression analysis was used to quantify associations between responses and demographic variables.

Results. Overall, knowledge about details of DBS retention was inadequate. The most frequent source of information about NBS was the post-partum nurse. Mothers tended to believe that using newborn bloodspots for research was a good thing, but Medicaid recipients and minorities were more reluctant than others to share dried bloodspots for research.

Clinical Implications. Mothers are not fully informed about the use of infant bloodspots for research. Further research to develop educational interventions that are sensitive to the concerns of parents about DBS storage and that can be implemented antenatally are needed. Furthermore, information from this study will inform policy makers regarding implications of procedures used by state blood spot repositories to obtain permission for donations.

Keywords:
Newborn Screening; Public Policy; Genetics
Repository Posting Date:
19-Dec-2013
Date of Publication:
19-Dec-2013
Conference Date:
2013
Conference Name:
42nd Biennial Convention
Conference Host:
Sigma Theta Tau International, the Honor Society of Nursing
Conference Location:
Indianapolis, Indiana, USA
Description:
42nd Biennial Convention 2013 Theme: Give Back to Move Forward. Held at the JW Marriott

Full metadata record

DC FieldValue Language
dc.language.isoen_USen_GB
dc.type.categoryAbstracten_GB
dc.typePresentationen_GB
dc.titleMaternal Attitudes and Knowledge about Newborn Screening and Dried Blood Spot Retentionen_GB
dc.contributor.authorTrue, Barbara A.en_GB
dc.contributor.authorDyson, Maynard Campbellen_GB
dc.contributor.authorRoberts, Hollyen_GB
dc.contributor.authorWalsh, Judithen_GB
dc.contributor.authorLockwood, Suzanne W.en_GB
dc.contributor.authorNewcomb, Patriciaen_GB
dc.contributor.authorDouglas, Becky A.en_GB
dc.contributor.departmentNon-memberen_GB
dc.author.detailsBarbara A. True, MN, CNS, RNC-OB, C-EFM, BarbaraTrue@texashealth.org; Maynard Campbell Dyson, MD, MA; Holly Roberts, RN, BSN, RNC-LRN; Judith Walsh, RN, PhD; Suzanne W. Lockwood, RN, PhD; Patricia Newcomb, RN, CPNP, PhD; Becky A. Douglas, MS, RNC-MNN, WHNP-BCen_GB
dc.identifier.urihttp://hdl.handle.net/10755/308463-
dc.description.abstract<p>Session presented on: Sunday, November 17, 2013</p><b>Background. </b>Prior to a 2009 lawsuit ending in destruction of over 5 million bloodspots, Texas maintained the largest repository of newborn dried blood spots (DBS) in the nation. DBS repositories are important resources for researchers, but poor informing procedures may invalidate permission for tissue donation resulting in further litigation. The purpose of this study was to describe knowledge and attitudes of mothers of newborns regarding state retention of DBS for research use. <p><b>Design.</b> This study was a cross-sectional survey administered to 548 mothers of newborns in post-partum units in five North Texas hospitals using the Maternal Attitudes and Knowledge about Newborn Screening Survey, developed by the investigators. Summary statistics were provided each site and surveys were combined for final data analysis. Multiple regression analysis was used to quantify associations between responses and demographic variables. <p><b>Results. </b>Overall, knowledge about details of DBS retention was inadequate. The most frequent source of information about NBS was the post-partum nurse. Mothers tended to believe that using newborn bloodspots for research was a good thing, but Medicaid recipients and minorities were more reluctant than others to share dried bloodspots for research. <p><b>Clinical Implications. </b>Mothers are not fully informed about the use of infant bloodspots for research. Further research to develop educational interventions that are sensitive to the concerns of parents about DBS storage and that can be implemented antenatally are needed. Furthermore, information from this study will inform policy makers regarding implications of procedures used by state blood spot repositories to obtain permission for donations.en_GB
dc.subjectNewborn Screeningen_GB
dc.subjectPublic Policyen_GB
dc.subjectGeneticsen_GB
dc.date.available2013-12-19T17:31:41Z-
dc.date.issued2013-12-19-
dc.date.accessioned2013-12-19T17:31:41Z-
dc.conference.date2013en_GB
dc.conference.name42nd Biennial Conventionen_GB
dc.conference.hostSigma Theta Tau International, the Honor Society of Nursingen_GB
dc.conference.locationIndianapolis, Indiana, USAen_GB
dc.description42nd Biennial Convention 2013 Theme: Give Back to Move Forward. Held at the JW Marriotten_GB
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