Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy
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 c...
| Main Authors: | , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2023-06-01
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| Series: | SSM: Qualitative Research in Health |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S266732152200169X |
| _version_ | 1797790813555523584 |
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| author | Alice Maclean Kate Hunt Ashley Brown Jane A. Evered Anna Dowrick Andrea Fokkens Rachel Grob Susan Law Louise Locock Michelle Marcinow Lorraine Smith Anna Urbanowicz Nientke Verheij Cervantee Wild |
| author_facet | Alice Maclean Kate Hunt Ashley Brown Jane A. Evered Anna Dowrick Andrea Fokkens Rachel Grob Susan Law Louise Locock Michelle Marcinow Lorraine Smith Anna Urbanowicz Nientke Verheij Cervantee Wild |
| author_sort | Alice Maclean |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-13T02:09:52Z |
| format | Article |
| id | doaj.art-374c86409dd44ab7a18b4541673d946a |
| institution | Directory Open Access Journal |
| issn | 2667-3215 |
| language | English |
| last_indexed | 2024-03-13T02:09:52Z |
| publishDate | 2023-06-01 |
| publisher | Elsevier |
| record_format | Article |
| series | SSM: Qualitative Research in Health |
| spelling | doaj.art-374c86409dd44ab7a18b4541673d946a2023-07-01T04:35:54ZengElsevierSSM: Qualitative Research in Health2667-32152023-06-013100207Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacyAlice Maclean0Kate Hunt1Ashley Brown2Jane A. Evered3Anna Dowrick4Andrea Fokkens5Rachel Grob6Susan Law7Louise Locock8Michelle Marcinow9Lorraine Smith10Anna Urbanowicz11Nientke Verheij12Cervantee Wild13Institute for Social Marketing and Health, University of Stirling, Scotland, FK9 4AL, UKInstitute for Social Marketing and Health, University of Stirling, Scotland, FK9 4AL, UK; Corresponding author. Institute for Social Marketing and Health, University of Stirling, Scotland, FK9 4AL, UK.Institute for Social Marketing and Health, University of Stirling, Scotland, FK9 4AL, UKUniversity of Wisconsin, Madison, Madison, WI, USAHealth Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, OX2 6GG, UKUniversity of Groningen, University Medical Center Groningen, Department of Health Sciences, Applied Health Research, the NetherlandsDepartment of Family Medicine and Community Health, University of Wisconsin, Madison, WI, USAInstitute of Health Policy, Management & Evaluation, University of Toronto, M5T 3M6, Canada; Institute for Better Health, Trillium Health Partners, L5B 1B8, CanadaUniversity of Aberdeen, Foresterhill, Aberdeen, AB25 2ZD, UKInstitute for Better Health, Trillium Health Partners, L5B 1B8, CanadaSydney Pharmacy School, Faculty of Medicine and Health, University of Sydney, AustraliaSocial and Global Studies Centre, School of Global, Urban and Social Studies, RMIT University, School of Health and Social Development, Faculty of Health, Deakin University, AustraliaUniversity of Groningen, University Medical Center Groningen, Department of Health Sciences, Applied Health Research, the NetherlandsUniversity of Wisconsin, Madison, Madison, WI, USAThis 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.http://www.sciencedirect.com/science/article/pii/S266732152200169XLong CovidCandidacyHelp-seekingPatient experienceCross-national comparisonCovid-19 |
| spellingShingle | Alice Maclean Kate Hunt Ashley Brown Jane A. Evered Anna Dowrick Andrea Fokkens Rachel Grob Susan Law Louise Locock Michelle Marcinow Lorraine Smith Anna Urbanowicz Nientke Verheij Cervantee Wild Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy SSM: Qualitative Research in Health Long Covid Candidacy Help-seeking Patient experience Cross-national comparison Covid-19 |
| 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 |
| title_full | Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy |
| title_fullStr | Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy |
| title_full_unstemmed | Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy |
| title_short | Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy |
| title_sort | negotiation of collective and individual candidacy for long covid healthcare in the early phases of the covid 19 pandemic validated diverted and rejected candidacy |
| topic | Long Covid Candidacy Help-seeking Patient experience Cross-national comparison Covid-19 |
| url | http://www.sciencedirect.com/science/article/pii/S266732152200169X |
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