2.50
Hdl Handle:
http://hdl.handle.net/10755/157824
Type:
Presentation
Title:
Patterns of Functioning in Families Having a Child with a Genetic Condition
Abstract:
Patterns of Functioning in Families Having a Child with a Genetic Condition
Conference Sponsor:Western Institute of Nursing
Conference Year:2006
Author:Knafl, Kathleen, PhD, FAAN
P.I. Institution Name:Oregon Health & Science University
Title:Sr Assoc Dean for Research & Faculty Affairs
Contact Address:School of Nursing, 3455 SW US Veterans Hospital Road, Portland, OR, 97239, USA
Contact Telephone:503-494-4288
Co-Authors:George Knafl, PhD; Agatha Gallo, RN, PhD, FAAN; and Denise Angst, Director of Research Children?s Hospital - Chicago
Purpose: Recognizing the unique challenges of genetic conditions for parents and families, researchers have begun to study family response to a child's genetic condition. The purpose of this analysis was to identify patterns of family functioning based on couples' reports of satisfaction with family life and family hardiness. Conceptual Framework: The report is based on an analysis of data from a study (Parents' Interpretation and Use of Genetic Information, R01HG/HD02036) of parents of children with varied genetic conditions (e.g., sickle cell disease, cystic fibrosis), which was guided by the Family Management Style Framework. Sample: Data for this analysis came from a subset of 52 of the 86 families participating in the study. The subset consisted of families in which both spouses participated. Methods: Parents individually completed the Family APGAR (a measure of satisfaction with family life) and the Family Hardiness Index (a measure of the family's internal strengths). Parents also completed structured measures of quality of life and child functional status. Cluster analysis was used to identify patterns of functioning. Results: Five clusters were identified based on parents' scores on the measures of family functioning. Clusters differentiated both quality of family functioning and the extent to which parents had shared or discrepant perceptions of family life. The construct validity of clusters was supported by a significant relationship between cluster membership and parental quality of life and child functional status. There was no relationship between cluster membership and type of genetic condition. Conclusions: By incorporating data from multiple family members and measuring multiple aspects of family life, the analysis provides a multifaceted understanding of family functioning in the context of a child's genetic condition. The absence of a relationship between cluster membership and genetic condition points to the appropriateness of taking a non-categorical approach when studying family response to genetic conditions.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Western Institute of Nursing

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titlePatterns of Functioning in Families Having a Child with a Genetic Conditionen_GB
dc.identifier.urihttp://hdl.handle.net/10755/157824-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Patterns of Functioning in Families Having a Child with a Genetic Condition</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Western Institute of Nursing</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">Knafl, Kathleen, PhD, FAAN</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">Oregon Health &amp; Science University</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Sr Assoc Dean for Research &amp; Faculty Affairs</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">School of Nursing, 3455 SW US Veterans Hospital Road, Portland, OR, 97239, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">503-494-4288</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">knaflk@ohsu.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">George Knafl, PhD; Agatha Gallo, RN, PhD, FAAN; and Denise Angst, Director of Research Children?s Hospital - Chicago</td></tr><tr><td colspan="2" class="item-abstract">Purpose: Recognizing the unique challenges of genetic conditions for parents and families, researchers have begun to study family response to a child's genetic condition. The purpose of this analysis was to identify patterns of family functioning based on couples' reports of satisfaction with family life and family hardiness. Conceptual Framework: The report is based on an analysis of data from a study (Parents' Interpretation and Use of Genetic Information, R01HG/HD02036) of parents of children with varied genetic conditions (e.g., sickle cell disease, cystic fibrosis), which was guided by the Family Management Style Framework. Sample: Data for this analysis came from a subset of 52 of the 86 families participating in the study. The subset consisted of families in which both spouses participated. Methods: Parents individually completed the Family APGAR (a measure of satisfaction with family life) and the Family Hardiness Index (a measure of the family's internal strengths). Parents also completed structured measures of quality of life and child functional status. Cluster analysis was used to identify patterns of functioning. Results: Five clusters were identified based on parents' scores on the measures of family functioning. Clusters differentiated both quality of family functioning and the extent to which parents had shared or discrepant perceptions of family life. The construct validity of clusters was supported by a significant relationship between cluster membership and parental quality of life and child functional status. There was no relationship between cluster membership and type of genetic condition. Conclusions: By incorporating data from multiple family members and measuring multiple aspects of family life, the analysis provides a multifaceted understanding of family functioning in the context of a child's genetic condition. The absence of a relationship between cluster membership and genetic condition points to the appropriateness of taking a non-categorical approach when studying family response to genetic conditions.</td></tr></table>en_GB
dc.date.available2011-10-26T20:14:22Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T20:14:22Z-
dc.description.sponsorshipWestern Institute of Nursingen_GB
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