Making Healthcare Infrastructure Work: Unpacking the Infrastructuring Work of Individuals

The U.S. healthcare infrastructure is fragmented with various breakdowns. Patients or caregivers have to rely on their own to overcome barriers and fix breakdowns in order to obtain necessary service, that is, infrastructuring work to make the healthcare infrastructure work for them. So far little attention has been paid to such infrastructuring work in healthcare. We present an interview study of 32 U.S. parents of young children to discuss the work of infrastructuring our participants carry out to deal with breakdowns within the healthcare infrastructure. We report how they repaired unexpected failures happening at the individual level, aligned components at organizational and cross-organizational level, and circumvented infrastructural constraints (e.g., policy and financial ones) that were perceived as ambiguous and demanding. We discuss infrastructuring work in light of the literature on patients' and caregivers' work, reflect upon the notion of patient engagement, and explore nuances along several dimensions of infrastructuring work.