Belton Sarahjane, Sheridan Kate
School of Health and Human Performance, Dublin City University, Dublin, Ireland.
Health Expect. 2025 Jun;28(3):e70227. doi: 10.1111/hex.70227.
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.
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.
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.
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.
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.
“长新冠”是一种复杂的多系统疾病，有多种复发-缓解症状，严重程度各异，会影响人们的日常生活。本研究利用第一作者感染“长新冠”并康复的经历，来探究这种疾病患者的实际体验。确定了可能对“长新冠”患者及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的经验教训。
第一作者采用合作自我民族志方法，调查自己感染“长新冠”并康复的个人经历，同时征求第二作者（一名运动治疗师、物理治疗师以及慢性疼痛研究专家）的意见以进行分析和解读。对第一作者可获取的多个数据源，包括日记条目、短信、电子邮件和药房收据，采用反思性主题分析。
数据产生了四个主题，并得到若干子主题的支持：（i）“长新冠”的心理社会影响，（ii）被否定，（iii）被认可，以及（iv）权力与自主权。本研究结果表明，对“长新冠”采用孤立和简化的护理方法会产生负面影响。此外，强调了医疗环境需要增强自主性和赋权，并实施以患者为中心的护理，即支持慢性病患者参与满足其需求的管理策略。
本研究凸显了在“长新冠”治疗中持续使用生物医学护理模式在个人和经济方面造成的有害代价。研究结果支持需要一种跨学科护理方法，该方法要考虑到整个人，并采用生物心理社会护理方法。此外，医疗专业人员需要积极倾听、尊重、认可并支持“长新冠”患者在其个性化康复旅程中的需求，这一点很明显。
第一作者是一名“长新冠”患者，本文对此进行了解释。因此，本文主要从患者的角度撰写，作为疾病康复旅程的第一手叙述，临床医生（第二作者）的见解提供了背景信息，并有助于更全面地理解这一旅程。这项工作的目标是，通过传播本文的研究结果，改善其他“长新冠”患者的康复途径和结果。
