Challenges in achieving positive outcomes for children with complex congenital conditions: Safety and continuity of care

Abstract

Our aim is to examine a series of systems-level challenges to the continuity of care of a newborn (i.e. a particular case) in the rural–urban context. These challenges include the state-wide system whereby inadequate bed numbers relative to demand are monitored on a daily basis (bed management), specialist medical expertise as a resource, and the flow of information between hospitals in a rural–urban divide. Whether quality of care is maintained in light of these challenges is dependent on the relationships and ‘invisible’ work of a number of clinicians. Of critical importance are issues involving affective or invisible work and the solidary networks and relationships of clinicians. Ethnographic participant-observations were made of clinical teams and their networks in an Australian rural–urban health care service involving the multiple hospital admissions of a seriously-ill infant. The findings demonstrate that the system works because of clinicians’ willingness to enact their practice knowledge, the networking they undertake, their resilience and the affective labour they perform to attend to patients’ and families’ needs. Ultimately the continuity of care is embedded in the quality of relationships as much as in specialist knowledge or professional expertise.