Department of Physical Therapy, Termerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
Institute of Health Policy, Management and Evaluation (IHPME), Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada.
BMJ Glob Health. 2023 Mar;8(3). doi: 10.1136/bmjgh-2022-011276.
Our aim was to describe episodic nature of disability among adults living with Long COVID.
We conducted a community-engaged qualitative descriptive study involving online semistructured interviews and participant visual illustrations. We recruited participants via collaborator community organisations in Canada, Ireland, UK and USA.We recruited adults who self-identified as living with Long COVID with diversity in age, gender, race/ethnicity, sexual orientation and duration since initial COVID infection between December 2021 and May 2022. We used a semistructured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory and conducted a group-based content analysis.
Among the 40 participants, the median age was 39 years (IQR: 32-49); majority were women (63%), white (73%), heterosexual (75%) and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterised by fluctuations in presence and severity of health-related challenges (disability) that may occur both within a day and over the long-term living with Long COVID. They described living with 'ups and downs', 'flare-ups' and 'peaks' followed by 'crashes', 'troughs' and 'valleys', likened to a 'yo-yo', 'rolling hills' and 'rollercoaster ride' with 'relapsing/remitting', 'waxing/waning', 'fluctuations' in health. Drawn illustrations demonstrated variety of trajectories across health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterised as unpredictability of episodes, their length, severity and triggers, and process of long-term trajectory, which had implications on broader health.
Among this sample of adults living with Long COVID, experiences of disability were described as episodic, characterised by fluctuating health challenges, which may be unpredictable in nature. Results can help to better understand experiences of disability among adults living with Long COVID to inform healthcare and rehabilitation.
本研究旨在描述长新冠患者的残疾发作性特征。
我们进行了一项社区参与的定性描述研究，包括在线半结构化访谈和参与者视觉插图。我们于 2021 年 12 月至 2022 年 5 月通过加拿大、爱尔兰、英国和美国的合作社区组织招募参与者。我们招募了自认为患有长新冠且在年龄、性别、种族/民族、性取向和从最初 COVID 感染到目前的时间方面具有多样性的成年人。我们使用半结构化访谈指南来探索长新冠患者的残疾体验，特别是与健康相关的挑战以及它们随时间的变化。我们要求参与者绘制他们的健康轨迹，并进行基于小组的内容分析。
在 40 名参与者中，中位数年龄为 39 岁（IQR：32-49）；大多数为女性（63%）、白人（73%）、异性恋（75%）和长新冠患病时间≥1 年（83%）。参与者描述他们的残疾经历具有发作性，其特点是与健康相关挑战（残疾）的存在和严重程度会波动，这种波动可能在一天内发生，也可能在长期患有长新冠的过程中发生。他们将其描述为“起起落落”、“发作”和“高峰”，随后是“崩溃”、“低谷”和“过山车”，就像“溜溜球”、“连绵起伏的山丘”和“过山车”一样，伴随着“复发/缓解”、“增强/减弱”、“波动”的健康。绘制的插图展示了健康维度上的各种轨迹，有些比其他的更具发作性。不确定性与残疾的发作性特征相交，其特征是发作的不可预测性、发作的持续时间、严重程度和触发因素，以及长期轨迹的过程，这对更广泛的健康状况有影响。
在本研究的长新冠患者样本中，残疾体验被描述为发作性，其特点是波动的健康挑战，其性质可能是不可预测的。研究结果可以帮助更好地理解长新冠患者的残疾体验，为医疗保健和康复提供信息。
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