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

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.