Health literacy and emergency preparedness in pediatric tracheostomy and home ventilation: a practical review

Children with tracheostomy and home ventilation are vulnerable to rapidly evolving airway and equipment emergencies after discharge. Health literacy in this setting is the functional capacity to access, understand, appraise, communicate, and apply child-specific information under stress. This narrative review synthesizes health-literacy literature, American Thoracic Society (ATS) guidance, caregiver education and simulation studies, outpatient emergency-knowledge studies, and health-system data to address the implementation gap between guideline-concordant discharge education and reliable caregiver action. The evidence is heterogeneous and largely observational or based on small educational interventions. In one cohort of 92 children, 44% had an Emergency Department visit with hospital admission within 90 days of discharge, 36% of which were tracheostomy- or respiratory-related. In an outpatient study of 52 caregivers, only 46.2% answered all 3 tracheostomy-emergency scenarios correctly, while 80% reported at least one tracheostomy-related emergency after discharge. We propose an author-derived 6-domain framework-baseline recognition, airway, ventilator/equipment, emergency action, communication, and system navigation-developed by mapping multidimensional health-literacy constructs, ATS safety recommendations, and recurrent caregiver tasks in pediatric tracheostomy/home-ventilation literature. Educational strategies include staged multimodal teaching, teach-back and show-back, simulation, mastery-oriented assessment, and longitudinal reassessment. Korean data illustrate how workforce, geography, and home-care organization modify implementation, but the framework is intended to be adaptable across healthcare systems. Health literacy should be treated as a safety capacity that connects guideline-defined structures to observable caregiver performance.