2.50
Hdl Handle:
http://hdl.handle.net/10755/159195
Type:
Presentation
Title:
Family Information Management Patterns in Childhood Genetic Conditions
Abstract:
Family Information Management Patterns in Childhood Genetic Conditions
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2007
Author:Gallo, Agatha, PhD, RN, FAAN
P.I. Institution Name:University of Illinois at Chicago
Contact Address:Maternal-Child Nursing, 845 S. Damen Avenue (mc802), Chicago, IL, 60305, USA
Co-Authors:E. Hadley and C.A. Smith, Maternal-Child Nursing, University of Illinois at Chicago, Chicago, IL; K.A. Knafl, School of Nursing, Oregon Health & Science University, Portland, OR; D.B. Angst, Advocate Center for Pediatric Research, Advocate Health Care, Oa
In the context of childhood genetic conditions, it is critical to understand how families manage information and how they communicate with others. To date, little is known about information management in this context. The purpose of this study was to identify family information management patterns by describing parents' knowledge, beliefs and behavioral strategies for accessing, conveying, and interpreting information. The sample included 86 families of children with various single gene conditions: sickle cell disease, phenylketonuria, cystic fibrosis, Marfan syndrome, neurofibromatosis, hemophilia, thalassemia, and von Willebrand disease. Parents were recruited from specialty clinics where these children received care. Individual interviews with parents were conducted, transcribed verbatim, and processed and coded using the ATLAS.ti software. Using a series of matrices, thematic analysis was conducted to examine patterns of information management across families. Findings revealed four information management patterns: Accurate (n= 30, 34.9%), Limited (n = 21; 24.4%), Discrepant (n = 13; 15.1%) and Confused (n = 22, 25.6%). Families in the Accurate pattern were more active and open in their information management as compared to the families in the Limited, Discrepant, and Confused patterns. Another key distinguishing feature related to the families' levels of understanding of the genetic aspects of the condition. While families in the Accurate and Limited patterns had relatively accurate understanding of the genetic aspects, families in the Discrepant pattern had one parent with an accurate understanding while the other parent was confused. Families in the Confused pattern included families where all parents had obvious areas of confusion related to their understanding of the genetic aspects of their child's condition. Families of children with genetic conditions have a variety of ways to access and interpret information, and convey this information to others. As the genetic and genomic contributions to health conditions increase, the information from this program of research can provide health care professionals with important insights that can inform and guide education and interventions with these families.
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.titleFamily Information Management Patterns in Childhood Genetic Conditionsen_GB
dc.identifier.urihttp://hdl.handle.net/10755/159195-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Family Information Management Patterns in Childhood Genetic Conditions</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">Gallo, Agatha, PhD, RN, FAAN</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Illinois at Chicago</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">Maternal-Child Nursing, 845 S. Damen Avenue (mc802), Chicago, IL, 60305, USA</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">agallo@uic.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">E. Hadley and C.A. Smith, Maternal-Child Nursing, University of Illinois at Chicago, Chicago, IL; K.A. Knafl, School of Nursing, Oregon Health &amp; Science University, Portland, OR; D.B. Angst, Advocate Center for Pediatric Research, Advocate Health Care, Oa</td></tr><tr><td colspan="2" class="item-abstract">In the context of childhood genetic conditions, it is critical to understand how families manage information and how they communicate with others. To date, little is known about information management in this context. The purpose of this study was to identify family information management patterns by describing parents' knowledge, beliefs and behavioral strategies for accessing, conveying, and interpreting information. The sample included 86 families of children with various single gene conditions: sickle cell disease, phenylketonuria, cystic fibrosis, Marfan syndrome, neurofibromatosis, hemophilia, thalassemia, and von Willebrand disease. Parents were recruited from specialty clinics where these children received care. Individual interviews with parents were conducted, transcribed verbatim, and processed and coded using the ATLAS.ti software. Using a series of matrices, thematic analysis was conducted to examine patterns of information management across families. Findings revealed four information management patterns: Accurate (n= 30, 34.9%), Limited (n = 21; 24.4%), Discrepant (n = 13; 15.1%) and Confused (n = 22, 25.6%). Families in the Accurate pattern were more active and open in their information management as compared to the families in the Limited, Discrepant, and Confused patterns. Another key distinguishing feature related to the families' levels of understanding of the genetic aspects of the condition. While families in the Accurate and Limited patterns had relatively accurate understanding of the genetic aspects, families in the Discrepant pattern had one parent with an accurate understanding while the other parent was confused. Families in the Confused pattern included families where all parents had obvious areas of confusion related to their understanding of the genetic aspects of their child's condition. Families of children with genetic conditions have a variety of ways to access and interpret information, and convey this information to others. As the genetic and genomic contributions to health conditions increase, the information from this program of research can provide health care professionals with important insights that can inform and guide education and interventions with these families.</td></tr></table>en_GB
dc.date.available2011-10-26T21:47:41Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T21:47:41Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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