Interventions in the Home and Community for Medically Complex Children: A Systematic Review

Most care occurs in home and community settings; however, the best approaches to improve CMC health are poorly understood.

We sought to summarize evidence from interventions in the home and community to improve health for children with medical complexity (CMC) using comprehensive conceptions of CMC health.

PubMed, CINAHL, Scopus, and Cochrane databases.

Included studies evaluated interventions for CMC caregivers in home or community settings and evaluated at least 1 outcome in 10 domains of CMC health.

Data were extracted on participant characteristics, intervention activities, and outcomes. Interventions were categorized thematically into strategies, with results summarized by effects on outcomes within each health domain.

The 25 included interventions used 5 strategies: intensive caregiver education (n = 18), support groups (n = 3), crisis simulation (n = 2), mobile health tracking (n = 1), and general education (n = 1). Substantial variation existed in the extent to which any outcome domain was studied (range 0-22 studies per domain). Interventions addressing 4 domains showed consistent improvement: support group and mobile health tracking improved long-term child and caregiver self-sufficiency; mobile health tracking improved family-centered care; intensive caregiver education and support groups improved community system supports. Three domains (basic needs, inclusive education, patient-centered medical home) were not studied.

Risk of bias was moderate due primarily to limited controlled experimental designs and heterogeneous population and outcome definitions.

Interventions that improve CMC health exist; however, current studies focus on limited segments of the 10 domains framework. Consensus outcome measures for CMC health are needed.