Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy.
Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy.
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DOI：
10.1016/j.ssmqr.2022.100207
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发表时间：
2023-06
期刊：
影响因子：
--
通讯作者：
Wild, Cervantee
中科院分区：
文献类型：
--
作者：
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
这项对人们关于确定长期Covid （LC）症状的需求和医疗保健经历的描述的分析，利用了在Covid-19大流行的头18个月期间来自五个国家（英国、美国、荷兰、加拿大、澳大利亚）的访谈数据，当时LC是一种新出现的、有时存在争议的疾病，缺乏科学或外行知识来指导患者和专业人员理解往往令人困惑的症状。我们将候选资格的结构扩展到探索患者在寻求了解其症状和寻求适当护理时报告的积极和（更经常的）消极经历。候选人资格通常考虑个人如何协商医疗保健访问。我们认为，在个人要求候选人资格之前的一个关键步骤是通过产生集体候选人资格来承认他们的状况。在科学知识有限、没有既定治疗途径的情况下，“先锋患者”集体识别、命名并争取承认长冠状病毒。社交媒体的使用在技术上加速了这一过程。患者通常会经历“被拒绝”的候选经历（感觉不被信任、不被重视/不被重视和被抛弃，他们的痛苦对医学界和社会是不可见的）。那些觉得自己的候选资格得到了“认可”的患者有更多积极的经历；他们感激人们相信和认可他们改变了的生活/身体和不确定的未来。更积极的医疗保健接触被描述为“共同专家”的过程，通过这种过程，患者和医疗保健专业人员合作，共同寻求康复之路。研究结果强调了相信并从患者经验中学习的重要性，特别是患有新发疾病的先锋患者。
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.
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影响因子：
82.9
作者：
Subramanian, Anuradhaa;Nirantharakumar, Krishnarajah;Hughes, Sarah;Myles, Puja;Williams, Tim;Gokhale, Krishna M.;Taverner, Tom;Chandan, Joht Singh;Brown, Kirsty;Simms-Williams, Nikita;Shah, Anoop D.;Singh, Megha;Kidy, Farah;Okoth, Kelvin;Hotham, Richard;Bashir, Nasir;Cockburn, Neil;Lee, Siang Ing;Turner, Grace M.;Gkoutos, Georgios V.;Aiyegbusi, Olalekan Lee;McMullan, Christel;Denniston, Alastair K.;Sapey, Elizabeth;Lord, Janet M.;Wraith, David C.;Leggett, Edward;Iles, Clare;Marshall, Tom;Price, Malcolm J.;Marwaha, Steven;Davies, Elin Haf;Jackson, Louise J.;Matthews, Karen L.;Camaradou, Jenny;Calvert, Melanie;Haroon, Shamil
通讯作者：
Haroon, Shamil
影响因子：
2.9
作者：
DAVISON, C;SMITH, GD;FRANKEL, S
通讯作者：
FRANKEL, S
影响因子：
3.8
作者：
Coyne, IT
通讯作者：
Coyne, IT
影响因子：
5.4
作者：
Wyke, Sally;Adamson, Joy;Hunt, Kate
通讯作者：
Hunt, Kate
影响因子：
2.9
作者：
Emslie, C;Hunt, K;Watt, G
通讯作者：
Watt, G