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When children with profound multiple disabilities are hospitalized: A cross-sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family-centered care


Seliner, Brigitte; Latal, Bea; Spirig, Rebecca (2016). When children with profound multiple disabilities are hospitalized: A cross-sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family-centered care. Journal for Specialists in Pediatric Nursing, 21(3):147-57.

Abstract

PURPOSE: We aimed to assess parental burden of care, satisfaction with family-centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors.
DESIGN: A cross-sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital.
RESULTS: The 117 parents (98 mothers, 19 fathers) studied indicated a substantial impact on burden of care and parental health-related quality of life. Significant correlations with the hospitalized children's well-being were rs = .408 for burden of care and rs -.368 for quality of life. Qualitative results showed parents struggling to safeguard their children and worrying most about the children's well-being.
PRACTICE IMPLICATIONS: Health professionals need to be aware of parental burden and that the perception of the children's well-being and the parents' efforts determine their support needs. Easing parents' burden and fostering confidence in the hospitalized children's well-being requires coordination of care provided by advanced nurse specialists, with an institutional framework that clarifies parental collaboration.

Abstract

PURPOSE: We aimed to assess parental burden of care, satisfaction with family-centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors.
DESIGN: A cross-sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital.
RESULTS: The 117 parents (98 mothers, 19 fathers) studied indicated a substantial impact on burden of care and parental health-related quality of life. Significant correlations with the hospitalized children's well-being were rs = .408 for burden of care and rs -.368 for quality of life. Qualitative results showed parents struggling to safeguard their children and worrying most about the children's well-being.
PRACTICE IMPLICATIONS: Health professionals need to be aware of parental burden and that the perception of the children's well-being and the parents' efforts determine their support needs. Easing parents' burden and fostering confidence in the hospitalized children's well-being requires coordination of care provided by advanced nurse specialists, with an institutional framework that clarifies parental collaboration.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:July 2016
Deposited On:08 Feb 2017 15:18
Last Modified:12 Feb 2017 07:53
Publisher:Wiley-Blackwell Publishing, Inc.
ISSN:1539-0136
Publisher DOI:https://doi.org/10.1111/jspn.12150
PubMed ID:27319801

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