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

Bryan L Stone1, Nancy A Murphy, Michael B Mundorff

  • 1Department of Pediatrics, University of Utah, Salt Lake City, UT, USA.

Journal of Pediatric Rehabilitation Medicine
|September 26, 2009
PubMed

Insights

Parents reported better inpatient care for children with complex chronic medical illnesses (CCMI) when in structured clinical programs (SCPs). Care in SCPs was perceived as more family-centered, addressing the whole child.

Area of Science:

  • Pediatric Healthcare
  • Family-Centered Care
  • Chronic Illness Management

Background:

  • Families of children with complex chronic medical illnesses (CCMI) require coordinated, family-centered healthcare.
  • Structured clinical programs (SCPs) aim to provide integrated care for these children.

Purpose of the Study:

  • To compare parental perceptions of inpatient family-centered care for children with CCMI in structured clinical programs (SCPs) versus those not in SCPs.

Main Methods:

  • A cross-sectional mail survey was conducted using the Measure of Processes of Care (MPOC) tool.
  • Parents of children with CCMI rated their perceptions of family-centered healthcare.
  • Responses from SCP and non-SCP groups were compared.

Main Results:

  • A higher proportion of favorable ratings (52.4% vs. 48.3%) was observed for the SCP group.
  • Unfavorable ratings were significantly lower in the SCP group (5.4% vs. 12.3%).
  • SCP families reported care directed at the whole child and consistency, unlike non-SCP families who noted unmet needs.

Conclusions:

  • Parents perceive inpatient care as more family-centered for children with CCMI within SCPs.
  • Children not in SCPs may benefit from inclusion in specialized programs.
  • Further research is needed to optimize care delivery for these children.
Abstract

Keywords:
Family-centered careMPOCchildren with complex chronic medical illnessparents perceptions of care

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