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Text
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URL Address
<a href="http://doi.org/10.1542/peds.2008-0582" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2008-0582</a>
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Title
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Hidden consequences of success in pediatrics: parental health-related quality of life--results from the Care Project
Publisher
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Pediatrics
Date
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2008
Subject
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Child; Female; Humans; Male; Adult; Health Care Surveys; Parents; Middle Aged; Health Status; Family Health; quality of life; adolescent; Preschool; infant; Chronic disease; retrospective studies; caregivers
Creator
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Hatzmann J; Heymans HS; Ferrer-i-Carbonell A; van Praag BM; Grootenhuis MA
Description
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CONTEXT: The number of parents who care for a chronically ill child is increasing. Because of advances in medical care, parental caring tasks are changing. A detailed description of parental health-related quality of life will add to the understanding of the impact of caring for a chronically ill child. This will contribute to pediatric family care. OBJECTIVE: Our goal was to determine the health-related quality of life of parents of chronically ill children compared with parents of healthy schoolchildren. DESIGN, SETTING, AND PARTICIPANTS: A survey of 533 parents of children with chronic conditions (10 diagnosis groups, children aged 1-19 years, diagnosed >1 year ago, living at home) and 443 parents of schoolchildren was conducted between January 2006 and September 2007. Parents were approached through Emma Children's Hospital (which has a tertiary referral and a regional function) and through parent associations. The comparison group included parents of healthy schoolchildren. Health-related quality of life was assessed with the TNO-AZL Questionnaire for Adult's Health Related Quality of Life. MAIN OUTCOME MEASURE: Health-related quality of life measures gross and fine motor function, cognitive functioning, sleep, pain, social functioning, daily activities, sexuality, vitality, positive and depressive emotions, and aggressiveness. The health-related quality of life of the study group was compared with that of the comparison group, and effect sizes were estimated. The percentages of parents at risk for a low health-related quality of life were compared with the 25th percentile scores of the comparison group. RESULTS. Parents of chronically ill children had a significantly lower health-related quality of life. Subgroup analysis showed lower health-related quality of life on sleep, social functioning, daily activities, vitality, positive emotions, and depressive emotions in disease-specific groups. On average, 45% of the parents were at risk for health-related quality-of-life impairment. CONCLUSIONS: Parents of chronically ill children report a seriously lower health-related quality of life, which should receive attention and supportive care if necessary. A family-centered approach in pediatrics is recommended.
2008
Identifier
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<a href="http://doi.org/10.1542/peds.2008-0582" target="_blank" rel="noreferrer">10.1542/peds.2008-0582</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Journal Article
2008
Adolescent
Adult
Backlog
Caregivers
Child
Chronic Disease
Family Health
Female
Ferrer-i-Carbonell A
Grootenhuis MA
Hatzmann J
Health Care Surveys
Health Status
Heymans HS
Humans
Infant
Journal Article
Male
Middle Aged
Parents
Pediatrics
Preschool
Quality Of Life
Retrospective Studies
van Praag BM