Sharing uncertainty: Comparing patient narratives of help-seeking in the first year of the Covid-19 pandemic across the UK, USA, Brazil, Germany and Spain

Abstract

The early stages of the Covid-19 pandemic generated profound global uncertainty that disrupted health systems. This paper examines uncertainty about Covid-19 from the perspective of patients who sought clinical help in Spain, the UK, the USA, Brazil and Germany in 2020. We conduct a narrative analysis to explore how patients sought to involve health care teams in addressing the ontological and epistemological uncertainties of Covid illness. Patients wanted clinical support to make sense of Covid as a novel illness and interpret their journey to recovery. Access to this support varied. Help-seeking was enabled when health services perceived patient needs as legitimate, alongside an infrastructure that enabled them access to care despite health system strain. In Brazil and Spain, candidacy for support in the early stages of illness was unquestioned, whereas in Germany, the UK and USA patients had to convince health professionals to support them. Where patients did access clinical support, they valued clinicians sharing the work of developing knowledge that would address epistemological uncertainty about Covid. Patients valued clinicians’ potential to acquire relevant expertise, rather than what they knew about Covid in a given encounter. Comparing experiences across different national settings demonstrates that patients wanted health systems to engage in the uncertainty of the pandemic through being accessible and present during novel illness experiences, sharing responsibility for learning more, and having a curiosity about the unknown.