Lived experiences of patients suffering from long COVID: a Systematic Review and Meta-ethnography
Authors: Bhattacharjee Priyadarshini , Nath Shoily , Mukherjee Dattatreya , Prosad Ipshita 
Published: April 2022

ABSTRACTBackground : ‘Long Covid’ is the term used to signify signs and symptoms that emerge or develop after acute COVID-19. It constitutes both ongoing symptomatic COVID-19 and post-COVID-19 symptoms. Symptoms of “long COVID” include fatigue, muscle weakness, sleep difficulties, anxiety and depression amongst other physiological signs of illness. While previous studies have highlighted the symptoms and epidemiological characteristics of ‘long COVID’, yet the implications of ‘long COVID’ extend well into the mental wellbeing of the patients affecting their everyday life. The present systematic review &amp; metaethnography attempts to reveal deeper insights from the lived experiences of ‘long COVID’ patients which has clinical implications for improving future care and formulating clinical guidelines for future use. Methods &amp; Analysis: We performed a Systematic Review and Meta-ethnography on the lived experiences of “long COVID” patients using Reciprocal Translation Analysis (RTA), Refutation Analysis and Line-of-Argument synthesis. Electronic databases of EMBASE(Ovid),AMED(Ovid),HMIC(Ovid),BNI(ProQuest),CINAHL(EBSCO), EMCARE(Ovid),PsycINFO(ProQuest), Medline/PubMed, Web of Science (Clarivate Analytics) and Google Scholar were searched using a combination free texts and MeSH terms. A combination of terms “long COVID” AND “survivors” AND “lived experiences” with their corresponding synonyms were used as a search strategy. Further, we limited search results to peer reviewed primary studies published in English language from 2019 till 18th May 2021. Citation tracking, footnote chasing, bibliography scan and citation alerts (on web of science) were further performed to create a comprehensive search. The retrieved search results were managed on the COVIDENCE platform where eligible studies were identified after screening the articles based upon preidentified eligibility criteria. The quality of the eligible studies were further assessed through critical appraisal using the CASP Tool for Qualitative Studies. Findings : 1120 articles were retrieved from the search strategy from which 774 unique articles were subjected to title &amp; abstract screening after removing the duplicates. Further, full text review of eligible studies after title &amp; abstract screening was performed to ultimately include 6 studies that matched the eligibility criteria for this review. No studies were rejected based on the analysis of the critical appraisal. Majority of the studies were from UK with study population skewed towards white British ethnicity and mostly female participants. The metaethnography attuned to a lifeworld perspective revealed four key themes: struggle &amp; strife over self-identity; searching for a shared identity &amp; belongingness; uncertainty &amp; mistrust on care system; seeking reassurance from others. The long covid patients were in a state of confusion with their illness symptoms and sought reassurance from the caring professionals when confronted with a loss of self-identity due to illness. Helplessness, frustration, anxiety and depression affected the participants resulting in the depreciation of their self-esteem. Uncertainty over diagnosis of the illness symptoms along with limited face-to-face interaction with caring professionals led the participants to a state of helplessness and a resilient search for online support groups with similar symptoms. In a nutshell, this study revealed a state of constant struggle &amp; strife over the self-identity of participants along with an urge for belonging back into the lifeworld. Conclusions: The present study offers key insights into the lifeworld of the long covid patients can be especially helpful in formulating future clinical guidelines for long COVID patients. The uncertainty over symptoms and diagnosis of Long COVID is affecting general population and healthcare professionals alike. Understanding the lifeworld of the long COVID patients could allow clinicians to create customized self-care plans for them and provide an opportunity for improvement of their psychosocial health in these uncertain times.