I Don't Know Who to Trust: Patterns of Receiving Newborn Screening Information Among Parents in Non-Dominant Cultures

2.50
Hdl Handle:
http://hdl.handle.net/10755/158726
Type:
Presentation
Title:
I Don't Know Who to Trust: Patterns of Receiving Newborn Screening Information Among Parents in Non-Dominant Cultures
Abstract:
I Don't Know Who to Trust: Patterns of Receiving Newborn Screening Information Among Parents in Non-Dominant Cultures
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2009
Author:Porter, Rebecca, MSc
P.I. Institution Name:University of Iowa
Title:College of Nursing
Contact Address:425 Hutchinson Avenue, Iowa City, IA, 52246, USA
Contact Telephone:319-354-3582
Co-Authors:R. Porter, J.K. Williams, College of Nursing, University of Iowa, Iowa City, IA; K. Noble Piper, Center for Congenital and Inherited Disorders, Iowa Department of Public Health, Des Moines, IA;
Background: Successful newborn screening programs (NBSP) rely on participation of healthcare providers and parents of newborns. Despite availability of educational materials, evidence exists that parent's knowledge of NBSP is limited. Parents whose healthcare or religious belief systems, primary language, or whose children are adopted or from foster care face impediments accessing NBSP testing and test results. Exclusion of populations from non-dominant groups in NBSP may significantly impact disease morbidity and quality of life. Purpose: to explore perceptions of accessing information regarding NBSP held by parents of newborns who live apart from the dominant Western medical culture. Participants: parents of newborns who participated in NBSP representing four different social groups: non-English speaking political legal refugees, a religious sect, adoption/foster, and exclusive followers of complementary healthcare systems. Methods: descriptive qualitative research design used focus group data collection. Group discussions were recorded manually by a research assistant and compared with notes taken by the principal investigators. Data analysis followed principles of analytic inductive methodology. Interactions were included in data analysis. Results: irrespective of their demography, a parent's comment, "I don't know who to trust," epitomized the central theme of parents' frustrations in navigating the healthcare system on behalf of their child. Implications: Understanding the meanings of NBSP held by parents in non-dominant groups underscores the importance that health care information should be provided in a way that respectfully transcends social boundaries. Results of this small exploratory cross-sectional study serve to remind healthcare providers that in a morally pluralistic society, the virtue of trust remains at the relational nexus between health care providers and patients. Funding: US Department of Health and Human Services, Health Resources and Services Administration to Kimberly Piper.
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.titleI Don't Know Who to Trust: Patterns of Receiving Newborn Screening Information Among Parents in Non-Dominant Culturesen_GB
dc.identifier.urihttp://hdl.handle.net/10755/158726-
dc.description.abstract<table><tr><td colspan="2" class="item-title">I Don't Know Who to Trust: Patterns of Receiving Newborn Screening Information Among Parents in Non-Dominant Cultures</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">Porter, Rebecca, MSc</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">425 Hutchinson Avenue, Iowa City, IA, 52246, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">319-354-3582</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">jsdillon@mchsi.com</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">R. Porter, J.K. Williams, College of Nursing, University of Iowa, Iowa City, IA; K. Noble Piper, Center for Congenital and Inherited Disorders, Iowa Department of Public Health, Des Moines, IA;</td></tr><tr><td colspan="2" class="item-abstract">Background: Successful newborn screening programs (NBSP) rely on participation of healthcare providers and parents of newborns. Despite availability of educational materials, evidence exists that parent's knowledge of NBSP is limited. Parents whose healthcare or religious belief systems, primary language, or whose children are adopted or from foster care face impediments accessing NBSP testing and test results. Exclusion of populations from non-dominant groups in NBSP may significantly impact disease morbidity and quality of life. Purpose: to explore perceptions of accessing information regarding NBSP held by parents of newborns who live apart from the dominant Western medical culture. Participants: parents of newborns who participated in NBSP representing four different social groups: non-English speaking political legal refugees, a religious sect, adoption/foster, and exclusive followers of complementary healthcare systems. Methods: descriptive qualitative research design used focus group data collection. Group discussions were recorded manually by a research assistant and compared with notes taken by the principal investigators. Data analysis followed principles of analytic inductive methodology. Interactions were included in data analysis. Results: irrespective of their demography, a parent's comment, &quot;I don't know who to trust,&quot; epitomized the central theme of parents' frustrations in navigating the healthcare system on behalf of their child. Implications: Understanding the meanings of NBSP held by parents in non-dominant groups underscores the importance that health care information should be provided in a way that respectfully transcends social boundaries. Results of this small exploratory cross-sectional study serve to remind healthcare providers that in a morally pluralistic society, the virtue of trust remains at the relational nexus between health care providers and patients. Funding: US Department of Health and Human Services, Health Resources and Services Administration to Kimberly Piper.</td></tr></table>en_GB
dc.date.available2011-10-26T21:20:12Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T21:20:12Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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