Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy

Alice MacLean, Kate Hunt* (Corresponding Author), Ashley Brown, Jane A Evered, Anna Dowrick, Andrea Fokkens, Rachel Grob, Susan Law, Louise Locock, Michelle Marcinow, Lorraine Smith, Anna Urbanowicz, Nienke Verheij, Cervantee Wild

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

This analysis of people’s accounts of establishing their need and experiences of
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.
Original languageEnglish
Article number100207
JournalSSM - Qualitative Research in Health
Early online date5 Dec 2022
DOIs
Publication statusE-pub ahead of print - 5 Dec 2022

Keywords

  • Long Covid
  • Candidacy
  • Help-seeking
  • Patient experience
  • Cross-national comparison
  • Covid-19

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