Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/34868
Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
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
Author(s): Maclean, Alice
Hunt, Kate
Brown, Ashley
Evered, Jane A
Dowrick, Anna
Fokkens, Andrea
Grob, Rachel
Law, Susan
Locock, Louise
Marcinow, Michelle
Smith, Lorraine
Urbanowicz, Anna
Verheij, Nientke
Wild, Cervantee
Contact Email: alice.maclean@stir.ac.uk
Keywords: Long Covid
Candidacy
Help-seeking
Patient experience
Cross-national comparison
Covid-19
Issue Date: Jun-2023
Date Deposited: 16-Feb-2023
Citation: Maclean A, Hunt K, Brown A, Evered JA, Dowrick A, Fokkens A, Grob R, Law S, Locock L, Marcinow M, Smith L, Urbanowicz A, Verheij N & Wild C (2023) Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy. <i>SSM - Qualitative Research in Health</i>, 3, Art. No.: 100207. https://doi.org/10.1016/j.ssmqr.2022.100207
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.
DOI Link: 10.1016/j.ssmqr.2022.100207
Rights: This article is available under the Creative Commons CC-BY-NC-ND license and permits non-commercial use of the work as published, without adaptation or alteration provided the work is fully attributed. For commercial reuse, permission must be requested.
Licence URL(s): http://creativecommons.org/licenses/by-nc-nd/4.0/

Files in This Item:
File Description SizeFormat 
1-s2.0-S266732152200169X-main.pdfFulltext - Published Version717.3 kBAdobe PDFView/Open



This item is protected by original copyright



A file in this item is licensed under a Creative Commons License Creative Commons

Items in the Repository are protected by copyright, with all rights reserved, unless otherwise indicated.

The metadata of the records in the Repository are available under the CC0 public domain dedication: No Rights Reserved https://creativecommons.org/publicdomain/zero/1.0/

If you believe that any material held in STORRE infringes copyright, please contact library@stir.ac.uk providing details and we will remove the Work from public display in STORRE and investigate your claim.