Navigating uncertainties in critical care with Covid-19: A cross country analysis of patient narratives from Brazil and the United Kingdom

Abstract

Uncertainty is inherent in medicine and has been an enduring focus of enquiry in medical sociology. It is a particularly salient analytic concept in the context of a new emerging disease. Whilst a substantial body of work explores how clinicians manage uncertainty, scholarship that explores patients’ experiences and ways of managing uncertainty is less well developed. In this cross country research, we draw on two narrative interview studies with patients who were critically ill with Covid-19 in Brazil and in the United Kingdom (UK) in the first year of the pandemic. In Brazil, Covid-19 surveillance was introduced in hospitals, with tight restrictions on visitors in non-Covid-19 services and a visitor ban in Covid-19 services. In the UK, hospital visits were suspended entirely for several months, and later seriously restricted. Using a cross country analysis, we mobilize the concept of ‘navigation’ to highlight how a rapidly changing environment facilitates or impedes how well patients could act in, and on, their circumstances. We explore the ways in which four intersecting uncertainties affected patients, namely those relating to contagion, treatment, protocols and practice, and individual prognosis. We demonstrate how patients sought to navigate these uncertainties through relationships – with family members, clinical staff, other patients and technologies – which could provide temporary relief. We argue that it is important to attend to how patients invest in relationships in critical care, and to facilitate and support these wherever possible.