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.
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.



A cross-sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital.



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.



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.
APN Rehabilitation, University Children's Hospital, Zurich, Switzerland.
Brigitte
B
Seliner
Professor Physician, and Head of Developmental Pediatrics, University Children's Hospital, Zurich, Switzerland.
Bea
B
Latal
Professor and Executive Director of Nursing and Allied Health Care Professions, University Hospital, Zurich, Switzerland.
Rebecca
R
Spirig
D002648:Child; D002673:Child, Hospitalized / Q000523:psychology*; D003430:Cross-Sectional Studies; D019988:Children with Disabilities / Q000523:psychology*; D005260:Female; D006776:Hospitals, Pediatric; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D018802:Patient-Centered Care / Q000458:organization & administration*; D010371:Pediatric Nursing / Q000379:methods; D011368:Professional-Family Relations; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support
Burden of care; cross-sectional study; pediatric nursing; profound intellectual and multiple disabilities (PIMD); quality of life; satisfaction with family-centered care