Children with chronic complex medical illnesses: Is inpatient care family-centered?
BACKGROUND
Families of children with complex chronic medical illnesses (CCMI) benefit from coordinated, family-centered 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.


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.
Department of Pediatrics, University of Utah, Salt Lake City, UT, USA.
Bryan L
BL
Stone
Nancy A
NA
Murphy
Michael B
MB
Mundorff
Howard B
HB
Parker
Paula R
PR
Peterson
Rajendu
R
Srivastava