Correlates of Quality of Life for Rural and Urban Families of Children with Velocardiofacial Syndrome

2.50
Hdl Handle:
http://hdl.handle.net/10755/160974
Type:
Presentation
Title:
Correlates of Quality of Life for Rural and Urban Families of Children with Velocardiofacial Syndrome
Abstract:
Correlates of Quality of Life for Rural and Urban Families of Children with Velocardiofacial Syndrome
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2010
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, Nursing, University of Minnesota, Minneapolis, MN;
The purpose of this study was to explore chronic illness characteristics and contextual factors and their relationship to health related quality of life (QoL) among individuals with VCFS (velocardiofacial syndrome) and their families. VCFS, also known as DiGeorge or 22q11 deletion syndrome, is one of the most common genetic disorders in humans, with an estimated prevalence of 1 in 2,000 live births. Children with VCFS often have congenital cardiac and palatal anomalies, immune dysfunction, learning disorders, and mild facial dysmorphism. While the implications of VCFS for caregiving families and nurses are significant, few studies have addressed QoL or family centered care in this population. This cross-sectional correlational study used a mailed survey to collect data. Parents of children with VCFS in the Upper Midwest were recruited through websites and clinical settings where individuals with VCFS are followed on a regular basis. Child and Parent QoL were measured using the PedsQL Measurement Model, which addresses QoL in emotional, physical, social, and cognitive domains. Family centered care, care coordination, and chronic illness characteristics were measured using items derived from the National Survey of CSHCN. Rural/urban status was determined using Urban Influence Codes. 95 families were recruited for the study and 90% (n=85) returned completed surveys. The majority (95%) of respondents are female, and 51% of the children are male. The mean child age was 8.9 years (SD 4.6). QoL scores among children with VCFS were low, with the lowest scores in the cognitive domain. More than half (53%) of parents reported an unmet need for care coordination, and fewer than half (44%) reported that their child's care is family centered. Multivariate analysis indicated that younger children with lower severity scores had better (higher) QoL scores. Both parent and child QoL were significantly higher among families receiving family centered care. Rural/urban status was not significantly related to QoL. The results of this study will be used to develop an intervention to improve family centered care and care coordination among families of children with chronic conditions.
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 for Rural and Urban Families of Children with Velocardiofacial Syndromeen_GB
dc.identifier.urihttp://hdl.handle.net/10755/160974-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Correlates of Quality of Life for Rural and Urban 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">2010</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, Nursing, University of Minnesota, Minneapolis, MN;</td></tr><tr><td colspan="2" class="item-abstract">The purpose of this study was to explore chronic illness characteristics and contextual factors and their relationship to health related quality of life (QoL) among individuals with VCFS (velocardiofacial syndrome) and their families. VCFS, also known as DiGeorge or 22q11 deletion syndrome, is one of the most common genetic disorders in humans, with an estimated prevalence of 1 in 2,000 live births. Children with VCFS often have congenital cardiac and palatal anomalies, immune dysfunction, learning disorders, and mild facial dysmorphism. While the implications of VCFS for caregiving families and nurses are significant, few studies have addressed QoL or family centered care in this population. This cross-sectional correlational study used a mailed survey to collect data. Parents of children with VCFS in the Upper Midwest were recruited through websites and clinical settings where individuals with VCFS are followed on a regular basis. Child and Parent QoL were measured using the PedsQL Measurement Model, which addresses QoL in emotional, physical, social, and cognitive domains. Family centered care, care coordination, and chronic illness characteristics were measured using items derived from the National Survey of CSHCN. Rural/urban status was determined using Urban Influence Codes. 95 families were recruited for the study and 90% (n=85) returned completed surveys. The majority (95%) of respondents are female, and 51% of the children are male. The mean child age was 8.9 years (SD 4.6). QoL scores among children with VCFS were low, with the lowest scores in the cognitive domain. More than half (53%) of parents reported an unmet need for care coordination, and fewer than half (44%) reported that their child's care is family centered. Multivariate analysis indicated that younger children with lower severity scores had better (higher) QoL scores. Both parent and child QoL were significantly higher among families receiving family centered care. Rural/urban status was not significantly related to QoL. The results of this study will be used to develop an intervention to improve family centered care and care coordination among families of children with chronic conditions.</td></tr></table>en_GB
dc.date.available2011-10-26T23:13:50Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T23:13:50Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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