Extremes, uncertainty, and responsibility across boundaries

Abstract

The availability of complex, pediatric home care (CPHC) allows ventilator-dependent children to live at home not hospital. The process of transition from hospital to home encompasses the morphing of responsibilities from uniquely hospital based to CPHC based. This study promoted contextualized understanding of transition using in-depth case-study methodology. A total of 26 adults were interviewed for their roles and responsibilities in transition; they represented members of the family, hospital team, home team, and government programs. Interview analyses revealed four major facets of transition, each accompanied by a significant challenge. Transition (a) was a continuous shift in responsibility challenged by precarious human resources, (b) was peppered with losses producing uncertainty and grief, (c) was focused on crossing jurisdictions in the face of polarization around knowledge, and (d) was heavily reliant on mothers leading to expectations of maternal extraordinariness. The overarching conceptualization emerged that transition entailed extremes and uncertainty in the bridging of boundaries.