‘The Second Arrow’: A Collaborative Autoethnographic Exploration of What Can Be Learned From One Long COVID Journey

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2025-04-23 DOI:10.1111/hex.70227

Sarahjane Belton, Kate Sheridan

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引用次数: 0

Abstract

Introduction

Long COVID is a complex multisystem illness with multiple relapsing-remitting symptoms, which can vary in severity and impact people's daily lives. This study utilises the first author's experience of falling ill with and recovering from long COVID to investigate the lived experience of the illness. Learnings that could positively influence how people with long COVID, and health professionals, approach rehabilitation and recovery from the illness going forward are identified.

Methods

Employing collaborative autoethnography, the first author investigated her personal experience of falling ill with, and rehabilitating from, long COVID, while soliciting input of the second author (an athletic therapist and physiotherapist, and researcher with expertise in chronic pain) for the purpose of analysis and interpretation. Reflexive thematic analysis was employed across a number of data sources available to the first author, including journal entries, text messages, emails, and pharmacy receipts.

Results

Four themes were generated from the data, supported by a number of subthemes: (i) Psychosocial impact of long COVID, (ii) Invalidated, (iii) Validated, and (iv) Power and Ownership. The negative impact of a siloed and reductionist approach to care for long COVID is evident in the findings of this study. In addition, the need for healthcare environments that enhance autonomy and empowerment, and that implement patient-centred care, where the person living with chronic illness is supported to engage in management strategies that meet their needs, is underlined.

Conclusion

This study highlights the detrimental cost, both personally and financially, of the ongoing use of the biomedical model of care in the treatment of long COVID. Findings support the need for an interdisciplinary approach to care that considers the whole person and adopts a biopsychosocial approach to care. Furthermore, the need for healthcare professionals to actively listen to, respect, validate and support the person living with long COVID on their individualised recovery journey is evident.

Patient or Public Contribution

The first author was a long COVID patient, the context and extent of this is explained within the paper. As such, this paper is developed and written primarily from the perspective of a patient, as a first-hand narrative of the recovery journey from the illness, with the insights of a clinician (second author) providing context and the potential for a broader understanding of the journey. The goal of this work is, through the dissemination of the paper's findings, to improve pathways and outcomes for others living with long COVID.

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查看原文本刊更多论文

“第二支箭”：一项关于从一次漫长的COVID之旅中学到什么的协作性自我民族学探索

导言：长期慢性阻塞性肺病是一种复杂的多系统疾病，具有多种复发-缓解症状，严重程度不一，对患者的日常生活造成影响。本研究利用第一作者的长期慢性阻塞性肺气肿患病和康复经历，对该疾病的生活体验进行调查。研究结果将对长期慢性阻塞性肺气肿患者和医疗专业人员今后如何进行康复和从疾病中恢复产生积极影响。方法第一位作者采用合作式自述法，调查了她个人患上长期慢性阻塞性肺病并从中康复的经历，同时征求第二位作者（运动治疗师和物理治疗师，以及具有慢性疼痛专业知识的研究人员）的意见，以便进行分析和解释。在第一作者所掌握的大量数据源（包括日记、短信、电子邮件和药房收据）中采用了反思性主题分析。结果从数据中产生了四个主题，并辅以若干副主题：(i) 长期 COVID 的社会心理影响，(ii) 无效，(iii) 有效，以及 (iv) 权力和所有权。从本研究的结果中可以明显看出，对长期慢性阻塞性肺病的治疗采取孤立和简化的方法所带来的负面影响。此外，本研究还强调，医疗保健环境需要加强自主性和赋权，实施以患者为中心的护理，支持慢性病患者参与符合其需求的管理策略。结论本研究强调了在治疗长期慢性阻塞性肺病过程中持续使用生物医学护理模式所带来的个人和经济损失。研究结果表明，有必要采用跨学科的护理方法，考虑到患者的整体情况，并采用生物-心理-社会的护理方法。此外，医护人员需要积极倾听、尊重、肯定和支持长期慢性阻塞性肺气肿患者的个性化康复历程。患者或公众的贡献本文第一作者是一名长期 COVID 患者，本文对其背景和程度进行了解释。因此，本文主要从患者的角度展开和撰写，以第一手资料叙述了患者的康复历程，临床医生（第二作者）的见解为本文提供了背景资料，并为更广泛地了解患者的康复历程提供了可能。这项工作的目标是，通过传播本文的研究结果，为其他长期罹患 COVID 的患者改善康复途径和结果。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.