Affiliations: Department of Pediatrics, University of Utah, Salt
Lake City, UT, USA | Primary Children's Medical Center, Intermountain
Healthcare, Salt Lake City, UT, USA
Note: [] Address for correspondence: Bryan L. Stone, MD, University of
Utah Health Sciences Center, Division of Inpatient Medicine, 100 Mario Capecchi
Drive, Salt Lake City, UT 84113, USA. Tel.: +1 801 662 3645; Fax: +1 801 662
3664; E-mail: Bryan.stone@hsc.utah.edu
Abstract: 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. 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.
Keywords: Family-centered care, children with complex chronic medical illness, parents perceptions of care, MPOC
