2.50
Hdl Handle:
http://hdl.handle.net/10755/160250
Type:
Presentation
Title:
Information Sharing With Children About Genetic Conditions
Abstract:
Information Sharing With Children About Genetic Conditions
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2004
Author:Gallo, Agatha, PhD, RN
Title:Associate Professor
Contact Address:Maternal-Child Nursing, 845 South Damen Avenue (m/c 802), Chicago, IL, 60612, USA
Co-Authors:Kathleen Knafl, PhD, FAAN, Professor; Denise Angst, DNSc, Director of Pediatric Research; Sharon Coyer, PhD, RN; Carrol Smith, MS, RN; Emily Hadley, MS, RN
Nurses are in an ideal situation to help families inform their children about genetic conditions. In families where there is a child with a known genetic condition, parents make decisions about how to convey information to their children. While it is assumed that many factors (e.g., family rules, boundaries, history, culture personal beliefs and values) all contribute to this decision making, little is known about how parents decide when and how to convey genetic information to their children. As part of a larger ongoing study identifying family information management styles in a variety of genetic conditions, the purpose of this qualitative analysis was to examine parents' beliefs and strategies related to sharing genetic information with their children. Additionally, the analysis examines the specific genetic information shared and similarities and differences across genetic conditions. The sample includes parents of 30 families of children with various genetic conditions such as sickle cell disease, phenylketonuria, cystic fibrosis, neurofibromatosis, Marfan syndrome, hemophilia, and thalassemia. Families have been recruited from multiple clinics sites where children with genetic conditions receive care. Audio recorded semi-structured interviews were transcribed verbatim, processed, and coded using the ATLAS.ti software. Thematic analysis was conducted using a series of matrices. Study findings emphasize the need to use family and developmental perspectives when working with families of children with genetic conditions. Specific findings that will be highlighted in this presentation include: genetic information sharing with children; the decision making process regarding sharing information with children; and the contribution of health care providers to parental strategies for sharing information with children. Findings will provide new information about how families manage genetic information and provide direction in terms of the nursing care of families in which a child has a genetic condition. Implications for future research will be discussed.
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.titleInformation Sharing With Children About Genetic Conditionsen_GB
dc.identifier.urihttp://hdl.handle.net/10755/160250-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Information Sharing With Children About 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">2004</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Gallo, Agatha, PhD, RN </td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Associate Professor</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">Maternal-Child Nursing, 845 South Damen Avenue (m/c 802), Chicago, IL, 60612, USA</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">Kathleen Knafl, PhD, FAAN, Professor; Denise Angst, DNSc, Director of Pediatric Research; Sharon Coyer, PhD, RN; Carrol Smith, MS, RN; Emily Hadley, MS, RN </td></tr><tr><td colspan="2" class="item-abstract">Nurses are in an ideal situation to help families inform their children about genetic conditions. In families where there is a child with a known genetic condition, parents make decisions about how to convey information to their children. While it is assumed that many factors (e.g., family rules, boundaries, history, culture personal beliefs and values) all contribute to this decision making, little is known about how parents decide when and how to convey genetic information to their children. As part of a larger ongoing study identifying family information management styles in a variety of genetic conditions, the purpose of this qualitative analysis was to examine parents' beliefs and strategies related to sharing genetic information with their children. Additionally, the analysis examines the specific genetic information shared and similarities and differences across genetic conditions. The sample includes parents of 30 families of children with various genetic conditions such as sickle cell disease, phenylketonuria, cystic fibrosis, neurofibromatosis, Marfan syndrome, hemophilia, and thalassemia. Families have been recruited from multiple clinics sites where children with genetic conditions receive care. Audio recorded semi-structured interviews were transcribed verbatim, processed, and coded using the ATLAS.ti software. Thematic analysis was conducted using a series of matrices. Study findings emphasize the need to use family and developmental perspectives when working with families of children with genetic conditions. Specific findings that will be highlighted in this presentation include: genetic information sharing with children; the decision making process regarding sharing information with children; and the contribution of health care providers to parental strategies for sharing information with children. Findings will provide new information about how families manage genetic information and provide direction in terms of the nursing care of families in which a child has a genetic condition. Implications for future research will be discussed.</td></tr></table>en_GB
dc.date.available2011-10-26T22:45:57Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T22:45:57Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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