Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: 2022 Maclean et al

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

Highlights

• People with symptoms of long Covid in the earliest stage of the Covid-19 pandemic can be regarded as “vanguard patients”, the first to experience a novel and emerging condition.
• We analysed narrative accounts from long Covid patients living in five countries.
• For novel or medically unexplained conditions, a process of generating “collective candidacy” is integral to the negotiation of individual candidacy. For long Covid, this was technologically accelerated globally by vanguard patients through online social media.
• Many patients with long Covid experienced “rejected” candidacy (i.e,. felt disbelieved, discounted/uncounted) or “diverted” candidacy (i.e., symptoms attributed to another underlying cause).
• ·In the most positive patient experiences, people felt listened to and that their often bewildering experience was validated and affirmed. Some described “co-experting” with healthcare professionals.

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.

Open access, https://www.sciencedirect.com/science/article/pii/S266732152200169X