healthcare for long Covid (LC) symptoms draws on interview data from five countries (UK, US, Netherlands, Canada, Australia) during the first ~18 months of the Covid-19 pandemic when LC was an emerging, sometimes contested, condition with scant scientific or lay knowledge to guide patients and professionals in their sense-making of often bewildering constellations of symptoms. We extend the construct of candidacy to explore positive and (more often) negative experiences that patients reported in their quest to understand their symptoms and seek appropriate care. Candidacy usually considers how individuals negotiate healthcare access. We argue a crucial step preceding individual claims to candidacy is recognition of their condition through generation of collective candidacy. “Vanguard patients” collectively identified, named and fought for recognition of long Covid in the context of limited scientific knowledge and no established treatment pathways. This process was technologically accelerated via social media use. Patients commonly experienced “rejected” candidacy (feeling disbelieved, discounted/uncounted and abandoned, and that their suffering was invisible to the medical gaze and society). Patients who felt their candidacy was “validated” had more positive experiences; they appreciated being believed and recognition of their changed lives/bodies and uncertain futures. More positive healthcare encounters were described as a process of “co-experting” through which patient and healthcare professional collaborated in a joint quest towards a pathway to recovery. The findings underpin the importance of believing and learning from patient experience, particularly vanguard patients with new and emerging illnesses.
Bibliographical noteFunding sources:
UK authors were supported by grants from Scotland’s Chief Scientist Office (AM, KH, AB, LL) [grant number COV/LTE/20/04] and NIHR (AD, KH, CW) [grant number COV-LT2-0005].
US authors [JE, RG] were supported by a University of Wisconsin-Madison Department of Family Medicine and Community Health small grant. This project was also made possible by the University of Wisconsin-Madison Institute for Clinical & Translational Research (ICTR) with support from NIHNCATS Clinical and Translational Science Award (CTSA) [grant number 1UL1TR002373] and a
strategic grant from the UW SMPH Wisconsin Partnership Program [grant number (WPP 4358]. Dr Evered was additionally supported by the University of Wisconsin-Madison Department of Family.
Medicine and Community Health Primary Care Research Fellowship [grant number T32HP10010] from the Health Resources and Services Administration.
Australia: The project was partly funded by a RMIT Vice-Chancellor’s Postdoctoral Fellowship [no number for funding].
Canada: Unfunded pilot study (conducted using internal resources).
Netherlands: Research was funded by ZonMw [grant number 10430302110002].
Acknowledgements We would like to thank all of the participants who took part in the interviews, especially as many of our participants were still very affected by their long Covid symptoms and had limited physical and cognitive resources.
We would like to thank the funders of our research (listed below) and our colleagues at the Health Experiences Research Group in Oxford. Thank you to Professor Sue Ziebland, Professor Sarah Nettleton for comments on an earlier draft, and Professor Trish Greenhalgh and an anonymous reviewer for their helpful observations.
- Long Covid
- Patient experience
- Cross-national comparison