Correlates of Quality of Life, Care Coordination, and Family Centered Care for Families of Children with Velocardiofacial Syndrome

2.50
Hdl Handle:
http://hdl.handle.net/10755/158715
Type:
Presentation
Title:
Correlates of Quality of Life, Care Coordination, and Family Centered Care for Families of Children with Velocardiofacial Syndrome
Abstract:
Correlates of Quality of Life, Care Coordination, and Family Centered Care for Families of Children with Velocardiofacial Syndrome
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2009
Author:Looman, Wendy, PhD
P.I. Institution Name:University of Minnesota
Title:Nursing
Contact Address:5-140 WDH, 308 Harvard Street SE, Minneapolis, MN, 55455, USA
Contact Telephone:6126246604
Co-Authors:W.S. Looman, School of Nursing, University of Minnesota, Minneapolis, MN;
A central focus for improving the quality of health care delivery needs to be on the provision of family centered care coordination services, especially for individuals with chronic illnesses. Velocardiofacial syndrome (VCFS) - one of the most common genetic disorders, second only to Down syndrome - is a chronic condition that is under-recognized, poorly managed, and that has enormous impact on individuals and families over the lifespan. VCFS is of critical significance to nurses because the condition may result in different outcomes depending on the quality of health care and the family's sociocultural environment. Despite this significance, there is no existing research that focuses on the quality of life (QoL) and coordination of care for these individuals and their families. The purpose of this study is to examine correlates of QoL, care coordination, and family centered care for rural and urban families of children with VCFS. This study was developed in the context of Andersen's Behavioral Model of Health Services Use. This prospective, descriptive, and correlational study uses a mailed survey to collect data from 100 parents of children ages 2-18 diagnosed with VCFS. Data are being collected using the Family Matters Survey, which is a collection of existing measures that have demonstrated reliability and validity. Analysis of data will focus on establishing the relationship between characteristics of the condition (severity, stability, and functional impact) and QoL for the child and family. Analyses will also establish whether family centered care coordination has a moderating effect on this relationship, and whether rural or urban status plays a role in the care and quality of life. Multiple regression models will be fitted to assess the effect of potential covariates (care coordination and family-centered care) on child and family QoL while adjusting for other factors (demographic characteristics, chronic illness characteristics and rural status). This study is an essential first step in a program of research designed to improve QoL for children with VCFS and their families. Nurse clinicians and researchers may use the findings of this study to design and test evidence based interventions that target processes at the health care system level.
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.titleCorrelates of Quality of Life, Care Coordination, and Family Centered Care for Families of Children with Velocardiofacial Syndromeen_GB
dc.identifier.urihttp://hdl.handle.net/10755/158715-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Correlates of Quality of Life, Care Coordination, and Family Centered Care for Families of Children with Velocardiofacial Syndrome</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">2009</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Looman, Wendy, PhD</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Minnesota</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Nursing</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">5-140 WDH, 308 Harvard Street SE, Minneapolis, MN, 55455, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">6126246604</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">looma003@umn.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">W.S. Looman, School of Nursing, University of Minnesota, Minneapolis, MN;</td></tr><tr><td colspan="2" class="item-abstract">A central focus for improving the quality of health care delivery needs to be on the provision of family centered care coordination services, especially for individuals with chronic illnesses. Velocardiofacial syndrome (VCFS) - one of the most common genetic disorders, second only to Down syndrome - is a chronic condition that is under-recognized, poorly managed, and that has enormous impact on individuals and families over the lifespan. VCFS is of critical significance to nurses because the condition may result in different outcomes depending on the quality of health care and the family's sociocultural environment. Despite this significance, there is no existing research that focuses on the quality of life (QoL) and coordination of care for these individuals and their families. The purpose of this study is to examine correlates of QoL, care coordination, and family centered care for rural and urban families of children with VCFS. This study was developed in the context of Andersen's Behavioral Model of Health Services Use. This prospective, descriptive, and correlational study uses a mailed survey to collect data from 100 parents of children ages 2-18 diagnosed with VCFS. Data are being collected using the Family Matters Survey, which is a collection of existing measures that have demonstrated reliability and validity. Analysis of data will focus on establishing the relationship between characteristics of the condition (severity, stability, and functional impact) and QoL for the child and family. Analyses will also establish whether family centered care coordination has a moderating effect on this relationship, and whether rural or urban status plays a role in the care and quality of life. Multiple regression models will be fitted to assess the effect of potential covariates (care coordination and family-centered care) on child and family QoL while adjusting for other factors (demographic characteristics, chronic illness characteristics and rural status). This study is an essential first step in a program of research designed to improve QoL for children with VCFS and their families. Nurse clinicians and researchers may use the findings of this study to design and test evidence based interventions that target processes at the health care system level.</td></tr></table>en_GB
dc.date.available2011-10-26T21:19:34Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T21:19:34Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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