Homes of children with medical complexity as a complex work system: outcomes associated with interactions in the physical environment

Abstract

Family caregivers provide critical care for children with medical complexity (CMC) at home, yet homes are still a poorly understood healthcare setting. Home environments include diverse physical environments, technologies, tools, tasks, and people, and are therefore complex work systems. Research suggests that home environments can contribute positively and negatively to both individuals’ well-being and the quality of care that families can provide. Our objective for this study was to determine how the physical environment of the home interacts within a work system to affect outcomes related to in-home care of CMC. We used contextual inquiry to interview 30 caregivers in their homes and analyzed our data using the Systems Engineering Initiative for Patient Safety (SEIPS) 2.0 model. We focused on identifying physical environments’ interactions with other work system components and the resulting CMC outcomes. We identified six categories of outcomes that are influenced by work system interactions within the physical environment: 1) Safe or Unsafe delivery of care; 2) Prepared for or Inability to Respond to Care Crisis; 3) Home Mobility or Inaccessibility; 4) Efficient and Inefficient Care; 5) Inclusion and Isolation from Family; and 6) Socioemotional Comfort and Stress. The physical environment influences a range of outcomes from patient safety to families’ emotional well-being. Our results point to the need for adaptation of SEIPS 2.0 to the home environment by incorporating consideration for family and home-based outcomes into the model.