2.50
Hdl Handle:
http://hdl.handle.net/10755/162119
Category:
Abstract
Type:
Presentation
Title:
Family Information Management Patterns in Childhood Genetic Conditions
Author(s):
Gallo, Agatha; Hadley, Emily; Smith, Carrol; Knafl, Kathleen; Angst, Denise; Feetham, Suzanne
Author Details:
Agatha Gallo, PhD, RN, FAAN, University of Illinois at Chicago, Chicago, IL, USA, email: agallo@uic.edu; Emily Hadley, MS, RN; Carrol Smith, PhD, RN; Kathleen Knafl, PhD, FAAN, Oregon Health Sciences U.; Denise Angst, DNSc, RN, Advocate Health Care; Suzanne Feetham, PhD, RN, FAAN, U. of MD & U. of Wisconsin-Milwaukee
Abstract:
Purpose: 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. Background: In the context of childhood genetic conditions and the increasing knowledge of genomics in health and disease, it is critical to understand how families manage genetic information and communicate with others. Little is known about information management in this context. Methods (Design, Participants, Setting, Data Collection, Analytic approach): 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 clinics where these children received care. Individual interviews with parents were conducted, transcribed verbatim, and processed and coded using ATLAS.ti. Using a series of matrices, thematic analysis was conducted to examine patterns of information management across families. Results: Findings revealed three information management patterns: Accurate (n = 51, 59 %), Discrepant (n = 13; 15 %) and Confused (n = 22, 26 %). Families in the Accurate pattern were more active and open in their information management as compared to the families in the Discrepant, and Confused patterns. One key distinguishing pattern characteristic relates to the level of understanding of the genetic aspects of the condition. While families in the Accurate patterns had relative accurate understanding of the genetic aspects, families in the Discrepant pattern had one parent with an accurate understanding and the other parent was confused. Families in the Confused pattern both parents had areas of confusion related to their knowledge of the genetic aspects of their child's condition. Conclusions and Implications: These study findings provide important insights that can guide education and interventions with these families. As the genetic/genomic contributions to common health conditions increase the information from this program of research can help to inform health professionals in responding to families.
Repository Posting Date:
27-Oct-2011
Date of Publication:
27-Oct-2011
Conference Date:
2007
Conference Name:
19th Annual Scientific Sessions
Conference Host:
Eastern Nursing Research Society
Conference Location:
Providence, Rhode Island, USA
Description:
Conference theme: Building Communities of Scholarship and Research, held April 12-14, 2007 at The Westin Providence.
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.

Full metadata record

DC FieldValue Language
dc.type.categoryAbstracten_US
dc.typePresentationen_GB
dc.titleFamily Information Management Patterns in Childhood Genetic Conditionsen_GB
dc.contributor.authorGallo, Agathaen_US
dc.contributor.authorHadley, Emilyen_US
dc.contributor.authorSmith, Carrolen_US
dc.contributor.authorKnafl, Kathleenen_US
dc.contributor.authorAngst, Deniseen_US
dc.contributor.authorFeetham, Suzanneen_US
dc.author.detailsAgatha Gallo, PhD, RN, FAAN, University of Illinois at Chicago, Chicago, IL, USA, email: agallo@uic.edu; Emily Hadley, MS, RN; Carrol Smith, PhD, RN; Kathleen Knafl, PhD, FAAN, Oregon Health Sciences U.; Denise Angst, DNSc, RN, Advocate Health Care; Suzanne Feetham, PhD, RN, FAAN, U. of MD & U. of Wisconsin-Milwaukeeen_US
dc.identifier.urihttp://hdl.handle.net/10755/162119-
dc.description.abstractPurpose: 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. Background: In the context of childhood genetic conditions and the increasing knowledge of genomics in health and disease, it is critical to understand how families manage genetic information and communicate with others. Little is known about information management in this context. Methods (Design, Participants, Setting, Data Collection, Analytic approach): 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 clinics where these children received care. Individual interviews with parents were conducted, transcribed verbatim, and processed and coded using ATLAS.ti. Using a series of matrices, thematic analysis was conducted to examine patterns of information management across families. Results: Findings revealed three information management patterns: Accurate (n = 51, 59 %), Discrepant (n = 13; 15 %) and Confused (n = 22, 26 %). Families in the Accurate pattern were more active and open in their information management as compared to the families in the Discrepant, and Confused patterns. One key distinguishing pattern characteristic relates to the level of understanding of the genetic aspects of the condition. While families in the Accurate patterns had relative accurate understanding of the genetic aspects, families in the Discrepant pattern had one parent with an accurate understanding and the other parent was confused. Families in the Confused pattern both parents had areas of confusion related to their knowledge of the genetic aspects of their child's condition. Conclusions and Implications: These study findings provide important insights that can guide education and interventions with these families. As the genetic/genomic contributions to common health conditions increase the information from this program of research can help to inform health professionals in responding to families.en_GB
dc.date.available2011-10-27T11:01:11Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T11:01:11Z-
dc.conference.date2007en_US
dc.conference.name19th Annual Scientific Sessionsen_US
dc.conference.hostEastern Nursing Research Societyen_US
dc.conference.locationProvidence, Rhode Island, USAen_US
dc.descriptionConference theme: Building Communities of Scholarship and Research, held April 12-14, 2007 at The Westin Providence.en_US
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.-
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