When a Child is Diagnosed with a Genetic Condition- Parents’ Reflections on the Diagnostic Experience

2.50
Hdl Handle:
http://hdl.handle.net/10755/161278
Type:
Presentation
Title:
When a Child is Diagnosed with a Genetic Condition- Parents’ Reflections on the Diagnostic Experience
Abstract:
When a Child is Diagnosed with a Genetic Condition- Parents’ Reflections on the Diagnostic Experience
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2004
Author:Angst, Denise, DNSc, RN
Title:Director
Contact Address:LGH Dept. of Pediatrics, Box 296, 1775 Dempster St., Park Ridge, IL, 60068, USA
Co-Authors:Kathleen A. Knafl, PhD, Professor; Agatha M. Gallo, PhD, RN, Associate Professor; Emily K. Hadley, MS, RN, Project Director; Carrol Smith, MS, RN; Sharon Coyer, PhD, RN
It is clear that the time surrounding the diagnosis of a child with any chronic illness is a difficult time for parents. Parents must grieve the loss of the "ideal child", learn to perform unfamiliar medical regimens, and reorganize family roles to meet the demands of the child's illness. In the case of the diagnosis of a child’s genetic condition, parents have to also think about the potential impact on their other children and the extended family. Little has been written about this experience and its relevance is important given our growing capabilities to recognize the genetic basis of many childhood illnesses. 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' perspectives surrounding the diagnostic experience in the context of childhood genetic conditions. The analysis is based on data from 54 parents (33 families) of children with various genetic conditions including: sickle cell disease, phenylketonuria, cystic fibrosis, neurofibromatosis, Marfan syndrome, hemophilia, and thalassemia. Parents were recruited from multiple clinics sites where children with genetic conditions receive care. Individual, audiotaped, semi-structured interviews were conducted with participants and transcribed verbatim. Interviews were then processed and coded using ATLAS.ti software. Case summaries were created for each participant, focusing specifically on the diagnostic experience. Thematic analysis was conducted using a series of matrices. Findings reveal important factors that influence parents’ experiences including the diagnostic pathway, their initial understanding and view of the illness, and parent-provider interactions. Study results will sensitize nurses and other health care providers to the family’s experience, will highlight provider strategies that parents report as both helpful and hindering to adaptation, and will explore parents’ communication patterns to those family members at genetic risk.
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.titleWhen a Child is Diagnosed with a Genetic Condition- Parents’ Reflections on the Diagnostic Experienceen_GB
dc.identifier.urihttp://hdl.handle.net/10755/161278-
dc.description.abstract<table><tr><td colspan="2" class="item-title">When a Child is Diagnosed with a Genetic Condition- Parents&rsquo; Reflections on the Diagnostic Experience</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">Angst, Denise, DNSc, RN</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Director</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">LGH Dept. of Pediatrics, Box 296, 1775 Dempster St., Park Ridge, IL, 60068, USA</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">Kathleen A. Knafl, PhD, Professor; Agatha M. Gallo, PhD, RN, Associate Professor; Emily K. Hadley, MS, RN, Project Director; Carrol Smith, MS, RN; Sharon Coyer, PhD, RN</td></tr><tr><td colspan="2" class="item-abstract">It is clear that the time surrounding the diagnosis of a child with any chronic illness is a difficult time for parents. Parents must grieve the loss of the &quot;ideal child&quot;, learn to perform unfamiliar medical regimens, and reorganize family roles to meet the demands of the child's illness. In the case of the diagnosis of a child&rsquo;s genetic condition, parents have to also think about the potential impact on their other children and the extended family. Little has been written about this experience and its relevance is important given our growing capabilities to recognize the genetic basis of many childhood illnesses. 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' perspectives surrounding the diagnostic experience in the context of childhood genetic conditions. The analysis is based on data from 54 parents (33 families) of children with various genetic conditions including: sickle cell disease, phenylketonuria, cystic fibrosis, neurofibromatosis, Marfan syndrome, hemophilia, and thalassemia. Parents were recruited from multiple clinics sites where children with genetic conditions receive care. Individual, audiotaped, semi-structured interviews were conducted with participants and transcribed verbatim. Interviews were then processed and coded using ATLAS.ti software. Case summaries were created for each participant, focusing specifically on the diagnostic experience. Thematic analysis was conducted using a series of matrices. Findings reveal important factors that influence parents&rsquo; experiences including the diagnostic pathway, their initial understanding and view of the illness, and parent-provider interactions. Study results will sensitize nurses and other health care providers to the family&rsquo;s experience, will highlight provider strategies that parents report as both helpful and hindering to adaptation, and will explore parents&rsquo; communication patterns to those family members at genetic risk.</td></tr></table>en_GB
dc.date.available2011-10-26T23:18:47Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T23:18:47Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
All Items in this repository are protected by copyright, with all rights reserved, unless otherwise indicated.