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This project is supported by an Australian Research Council Discovery Project grant (DP240101775) and is led by Prof Emma Kirby and A/Prof John MacArtney (University of Warwick, UK). This research aims to understand the implications of pandemic-related delays for dying and bereavement, including the social and cultural factors that shape experiences of illness and care. The findings will contribute to improvements in health and social policies, ensuring better support for those facing serious illness and their loved ones. In doing so, we apply a sociological lens to unpack issues of timeliness and delay, to reveal how objective conditions and subjective experiences shape access to and experiences in healthcare. This includes a focus on the socio-political contexts within which individuals, families, communities, and systems operate, to understand inequalities and inequities alongside constructions of responsibility, risk, suffering, and blame.

In Australia as elsewhere, the rapid reorganisation of services and workforces to prepare for, and respond to, the threat of Covid inevitably saw significant deferral of routine health care. Availability of screening and testing decreased, some surgeries and other treatments were cancelled or postponed. Healthcare-seeking behaviours also changed, as communities faced fear and uncertainty. Some people stayed away from healthcare, worried about waiting times, the risk of Covid transmission on public transport or within clinics and hospitals and were reluctant to interpret symptoms as serious enough to take up space in already overloaded health services. As a result, the untold toll of Covid-19 is emerging in ‘avoidable deaths’, those linked to late(r) diagnosis or treatment due to pandemic-related delay. Delays occur because of a range of circumstances that may dissuade, postpone, defer, or interrupt ‘usual’ or timely practices and processes. These delays have affected not just individuals but entire families and communities, making it crucial to understand their impact.

Our research methods include document and policy analysis, in-depth interviews with Australians nearing the end of life and those who care for them, and roundtable discussions using brokered dialogue techniques that bring together practitioners, policy makers, industry/professional representatives, and people with lived experience.
If you would like to find out more about this project, or contribute your insights or experiences, please contact Dr Kristin Bindley.

• (University of Warwick)