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

Abstract

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

Objective: 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.

Data sources: PubMed, CINAHL, Scopus, and Cochrane databases.

Study selection: 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 extraction: 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.

Results: 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.

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

Conclusions: 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.