“I feel like my body is broken”: Exploring the experiences of people living with long COVID
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Abstract
Background
Long COVID, an illness affecting a subset of individuals after COVID-19, is distressing and poorly understood. Exploring the experiences of people with long COVID could help inform current conceptualizations of the illness, guide supportive care strategies, and validate patients’ perspectives on the condition. Thus, the objective of this study was to better understand and explore individuals’ experiences with long COVID and commonly reported symptoms, using qualitative data collected from open-ended survey responses.
Methods
Data were collected from adults living with long COVID following a confirmed or suspected SARS-CoV-2 infection who participated in a larger observational, online survey. Within the larger survey, participants had the option of answering seven open-ended items. Data from the open-ended items were analyzed following guidelines for reflective thematic analysis.
Results
From the 213 who were included in the online survey, 169 participants who primarily self-identified as women (88.2%), aged 40-49 (33.1%), and who had been experiencing long COVID symptoms for ≥ 6 months (58.6%) responded to the open-ended questions. Four overlapping and interconnected themes were identified: (1) My long COVID symptoms are numerous, hard to describe, and debilitating , (2) All aspects of my day-to-day functioning have been impacted , (3) I can no longer be physically active , and (4) I keep asking for help, but no one is listening, and very little is working .
Conclusion
Findings highlight the complex nature of long COVID and show the ways in which individuals affected by the illness are negatively impacted. Participants recounted struggling and altering their daily activities while managing relapsing-remitting symptoms, an uncertain prognosis, lost pre-COVID identities, and a healthcare system (that does not always offer guidance nor take them seriously). More support and recognition for the condition are needed to help this cohort navigate the process of adapting to long COVID.
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SciScore for 10.1101/2022.01.20.22269617: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Ethics IRB: The qualitative data collected, analyzed, and reported herein were collected as part of a larger observational study using an online survey [8], which was approved by the University of Calgary Conjoint Health Research Ethics Board (REB21-0159).
Consent: Here individuals could learn about the study and review the eligibility criteria before being directed to the informed consent page.Sex as a biological variable not detected. Randomization not detected. Blinding not detected. Power Analysis not detected. Table 2: Resources
Software and Algorithms Sentences Resources Data Analysis: Descriptive statistics were computed for socio-demographic and medical data using Jamovi [33]. Jamovisuggested: (jamovi, …SciScore for 10.1101/2022.01.20.22269617: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Ethics IRB: The qualitative data collected, analyzed, and reported herein were collected as part of a larger observational study using an online survey [8], which was approved by the University of Calgary Conjoint Health Research Ethics Board (REB21-0159).
Consent: Here individuals could learn about the study and review the eligibility criteria before being directed to the informed consent page.Sex as a biological variable not detected. Randomization not detected. Blinding not detected. Power Analysis not detected. Table 2: Resources
Software and Algorithms Sentences Resources Data Analysis: Descriptive statistics were computed for socio-demographic and medical data using Jamovi [33]. Jamovisuggested: (jamovi, RRID:SCR_016142)Results from OddPub: Thank you for sharing your data.
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:When combined with severe functional limitations and the burden of educating others, there can be serious adverse impacts on mental health [41,42]. A deeper exploration of common symptoms, including post-exertional malaise, and their physical and psychological consequences, could disentangle the effects of long COVID from the secondary impacts on mental health - ultimately informing interventions and supportive care strategies. There were multiple and varied ways participants described self-managing their condition, from consuming medical information and advocating for themselves to adhering to treatments that do not always offer relief. Participants also shared the additional challenge they faced in self-managing their condition within a system that challenged or contested their diagnosis. This sentiment of navigating one’s condition amidst doubts about authenticity has been reported in individuals with ME/CFS [43–47]. ME/CFS can occur after an infectious illness such as mononucleosis [48], but it remains a highly stigmatized health condition where patients are vulnerable to epistemic injustice in healthcare encounters [45]. The feelings of dismissal from healthcare providers expressed by participants in this sample, the conceptual ambiguity of both ME/CFS and long COVID, and the nature of symptoms which are numerous and hard to describe, may result in low credibility being given to the patient testimonial [45]. The recent recognition of long COVID as a real outcome of COVID...
Results from TrialIdentifier: No clinical trial numbers were referenced.
Results from Barzooka: We did not find any issues relating to the usage of bar graphs.
Results from JetFighter: We did not find any issues relating to colormaps.
Results from rtransparent:- Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
- Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
- No protocol registration statement was detected.
Results from scite Reference Check: We found no unreliable references.
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