Patient safety agenda to advance home healthcare safety for children with medical complexity

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Abstract Background Children with medical complexity (CMC) account for <1% of pediatric patients but over 30% of pediatric healthcare costs. There are compelling health-focused and economic arguments to shift our focus toward home-based care. Despite this, research centering the home as a central healthcare setting continues to lag behind other health services research. Methods In the present study, we convened a patient safety learning lab (PSLL) with representatives across the socioecological system of CMC to define an agenda for initiatives to improve safety at home for CMC. Our PSLL identified 22 distinct challenges to home healthcare safety. We then distributed a survey to key partners who rated the influence, modifiability, and importance of each challenge. Results The two safety challenges rated as most influential and most important were the insufficient supply of non-family providers who can care for children in the home and community, and caregiver exhaustion from night and/or prolonged caregiving shifts. The two safety challenges perceived as most modifiable were that trainings in hospital or clinic settings may not translate well to the home and community environments and insufficient preparation for a child’s medical emergencies in the home and community. Following the survey, our PSLL reconvened to identify multisystem candidate measures to capture progress toward addressing identified challenges. Conclusions In order to advance this safety agenda, families of CMC should be engaged at each socioecological level, as they are uniquely positioned to provide the home context needed for effective policy reform. Learning Points Children with medical complexity (CMC) receive most of their healthcare at home, but patient safety research on CMC disproportionately focuses on the hospital. A patient safety learning lab comprising key partners from across the socioecological system of CMC identified 22 distinct challenges affecting patient safety at home for this population. The most important and influential challenges to patient safety were the insufficient supply of non-family providers and caregiver exhaustion from night and/or prolonged caregiving shifts. Interventions to address these challenges must include outcome measures that are relevant across the socioecological system and be co-created with families of CMC.

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