The SafeCare@Home4Kids Learning Lab: Designing Safer Healthcare at Home for Children

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PROJECT SUMMARY/ABSTRACT Children with medical complexity are a growing population of medically fragile patients with disability. Children with medical complexity experience ~70% of unplanned hospital readmissions and have a 10x higher odds of mortality compared to other children. These children’s daily survival requires parents and home nurses to safely administer intricate medication regimens through implanted devices, such as a tube inserted into the stomach. While we know that medication errors or device-related adverse events are happening at home, no home healthcare reporting or response standards exist to address and prevent them. Voluntary reporting does not equitably capture events in children of minority backgrounds or necessarily address prevention. Parents express fear of losing their child’s nursing care or their child’s custody if they raise safety concerns, especially those of racial minority backgrounds. While home is an essential healthcare site for CMC, no scientific approaches exist to make sure healthcare safety events do not happen at home. There is a critical need to identify, communicate, and prevent safety errors and adverse events that occur in the home by diverse parents and home healthcare providers in a manner that will make sure the children are okay, notifies the children’s care providers, prevents recurrence, and is equitable to all patients and families. Our specific aims are to 1) construct the SafeCare@Home4Kids multidisciplinary lab of experts, including in patient safety, human factors engineering, nursing, pediatrics, HHC, informatics, and lived family experience to work together to design innovative, effective, and equitable approaches to prevent healthcare safety errors and adverse events experienced by diverse CMC at home; 2) determine how family caregivers and home nurses currently identify, communicate, and prevent medication and device-related errors and adverse events in the context of the home work system; and 3) co-design, implement, and evaluate a safety toolkit that addresses these elements of medication and device safety using input from families, home nurses, prescribing providers, and our lab experts, to improve patient safety at home. Our pediatric PSLL will be an innovative paradigm shift in safety research by focusing on the home as a fundamental healthcare practice setting for CMC. This work is significant because SafeCare@Home4Kids serves intersecting AHRQ priority populations who may not otherwise be empowered or supported to address the safety of their healthcare and addresses common reasons children with medical complexity use the emergency department or are hospitalized. By using a human factors engineering approach with national interdisciplinary experts, partnering with patient family leaders, and recruiting a linguistically and racially diverse participant population, we will advance whole-person 360-degree by equitably impacting the safety of care no matter where a child calls home.