Parents' Concerns about Privacy and Social Issues When Their Children Have Genetic Conditions

2.50
Hdl Handle:
http://hdl.handle.net/10755/160046
Type:
Presentation
Title:
Parents' Concerns about Privacy and Social Issues When Their Children Have Genetic Conditions
Abstract:
Parents' Concerns about Privacy and Social Issues When Their Children Have Genetic Conditions
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2006
Author:Gallo, Agatha, PhD, RN, CPNP, FAAN
P.I. Institution Name:University of Illinois at Chicago
Title:Professor
Contact Address:Maternal Child Nursing, 845 South Damen Avenue (mc 802), Chicago, IL, 60612, USA
Contact Telephone:312-996-1868
Co-Authors:Denise Angst, DNSc, RN, Director; Kathleen Knafl, PhD; Emily Hadley, MS, RN; and Carrol Smith, PhDc, RN
Despite significant interest in privacy and discrimination related to disclosure of genetic information, little is reported about the concerns of affected families. As part of a larger study of parents who have a child with a genetic condition, the purpose of this analysis was to examine parents' concerns around privacy, disclosure, costs, and other issues believed to be important in the context of genetic conditions. Guided by the Family Management Style Framework, this analysis is based on data from 142 parents (86 families) of school age children with various genetic conditions including sickle cell disease, phenylketonuria, cystic fibrosis, Marfan syndrome, neurofibromatosis, hemophilia, thalassemia, and von Willebrand disease. Parents were recruited from specialty clinics where these children receive care. Individual, audio-recorded interviews were conducted with parents, transcribed verbatim, and processed and coded using the ATLAS.ti software. Thematic analysis was conducted using a series of matrices focusing on parents' concerns. Analysis revealed that 80% of parents openly shared information about the genetic condition with extended family members, friends, neighbors, school personnel and others in the community. Seventy-four percent were not concerned about privacy of genetic information. On the other hand, many parents were concerned about health care costs (61%), insurance (54%), and school (50%), and a little over a third (38%) were concerned about employment issues. These findings did not differ by genetic condition, gender, health insurance status, or socioeconomic status. Findings indicate that these parents are less concerned with the more intangible issues of privacy and discrimination, and more concerned with the everyday issues of health care costs, insurance, school and employment. The openness of families is likely related to the many individuals that potentially interact with the management of the child's genetic condition. Further research should examine how parents' concerns change as the children enter adolescence and adulthood.
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.titleParents' Concerns about Privacy and Social Issues When Their Children Have Genetic Conditionsen_GB
dc.identifier.urihttp://hdl.handle.net/10755/160046-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Parents' Concerns about Privacy and Social Issues When Their Children Have 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">2006</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Gallo, Agatha, PhD, RN, CPNP, 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-author-title"><td class="label">Title:</td><td class="value">Professor</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">Maternal Child Nursing, 845 South Damen Avenue (mc 802), Chicago, IL, 60612, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">312-996-1868</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">Denise Angst, DNSc, RN, Director; Kathleen Knafl, PhD; Emily Hadley, MS, RN; and Carrol Smith, PhDc, RN</td></tr><tr><td colspan="2" class="item-abstract">Despite significant interest in privacy and discrimination related to disclosure of genetic information, little is reported about the concerns of affected families. As part of a larger study of parents who have a child with a genetic condition, the purpose of this analysis was to examine parents' concerns around privacy, disclosure, costs, and other issues believed to be important in the context of genetic conditions. Guided by the Family Management Style Framework, this analysis is based on data from 142 parents (86 families) of school age children with various genetic conditions including sickle cell disease, phenylketonuria, cystic fibrosis, Marfan syndrome, neurofibromatosis, hemophilia, thalassemia, and von Willebrand disease. Parents were recruited from specialty clinics where these children receive care. Individual, audio-recorded interviews were conducted with parents, transcribed verbatim, and processed and coded using the ATLAS.ti software. Thematic analysis was conducted using a series of matrices focusing on parents' concerns. Analysis revealed that 80% of parents openly shared information about the genetic condition with extended family members, friends, neighbors, school personnel and others in the community. Seventy-four percent were not concerned about privacy of genetic information. On the other hand, many parents were concerned about health care costs (61%), insurance (54%), and school (50%), and a little over a third (38%) were concerned about employment issues. These findings did not differ by genetic condition, gender, health insurance status, or socioeconomic status. Findings indicate that these parents are less concerned with the more intangible issues of privacy and discrimination, and more concerned with the everyday issues of health care costs, insurance, school and employment. The openness of families is likely related to the many individuals that potentially interact with the management of the child's genetic condition. Further research should examine how parents' concerns change as the children enter adolescence and adulthood.</td></tr></table>en_GB
dc.date.available2011-10-26T22:34:31Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T22:34:31Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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