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.