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.
Keywords: Burden of care; cross-sectional study; pediatric nursing; profound intellectual and multiple disabilities (PIMD); quality of life; satisfaction with family-centered care.
© 2016, Wiley Periodicals, Inc.