Care coordination for children with medical complexity and caregiver empowerment in the process: A literature review

Abstract

Purpose

Advances in health care have led to an increase in infants and children being discharged home with increasingly complex conditions. Children with medical complexity require care from many physicians and specialties to thrive in their home environment. While some care coordination programs are in place, these programs are often dependent upon the child living within the geographic area of a major healthcare system. Additionally, children with medical complexity often need specialized care from providers outside the participating healthcare system, placing the onus of care coordination on the child's family. This literature review aimed to examine care coordination programs for children with medical complexity and what tools have been created to empower the child's family in the process.

Method

Qualitative and quantitative research studies published from 2015 to 2021 found in Academic Search Complete, Cumulative Index to Nursing and Allied Health Literature, and Medline that included a review of a care coordination program for children with medical complexity were included. Nonresearch articles, articles written about adults, or written in languages other than English were excluded. The Johns Hopkins Nursing Evidence-Based Practice grading scale was used to appraise the evidence. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist was utilized to structure this review to deter the risk of bias. A qualitative synthesis was used to analyze and present the results.

Conclusions

There are varying strategies used to facilitate care coordination of children with medical complexity. Effects of care coordination on the child are inconsistent; however, the child's caregiver considers high-quality care coordination to improve quality of life. There are limited tools available for caregivers of children with medical complexity to coordinate their child's care across healthcare systems. Generalizability is a concern due to the small sample sizes of studies and underrepresentation of non-English speaking families in the research. Risk of bias is possible due to highly engaged families willing to participate in the selected research studies.

Practice Implications

There is an opportunity to develop further and study care coordination tools to empower the caregivers of children with medical complexity.