Children with chronic complex medical illnesses: Is inpatient care family-centered?

Background: Families of children with complex chronic medical illnesses (CCMI) benefit from coordinated, familycentered healthcare. Objective: Compare parental perceptions of inpatient family-centered care for children with CCMI in structured clinical programs (SCPs) with those who are not in SCPs. Design/Methods: Cross-sectional mail survey of parents of children with CCMIs using the 56-item Measure of Processes of Care (MPOC) to rate perceptions of family-centered healthcare. We compared responses of SCP to non-SCP children. Results: 215 (36.6%) of 588 surveys were returned. Response rates were 40.0% for SCP and 33.8% for non-SCP children. The proportion of favorable (6-7) ratings was higher for the SCP group than for the non-SCP group (52.4% vs. 48.3%, p < 0.035). The proportion of unfavorable ratings was also different (5.4% vs. 12.3%, p =< 0.001). SCP families felt care was directed at the whole child and consistent. Non-SCP families reported more unmet needs and less recognition of their role. Conclusions: Parents of children with CCMI perceive inpatient care as more family-centered when provided in conjunction with a SCP. Children receiving non-SCP care may benefit from inclusion in SCPs dedicated to their needs. Further studies to determine the best way to provide this care are needed.