Experiences of living with long COVID and of accessing healthcare services: a qualitative systematic review

Abstract

ObjectiveTo explore the experiences of people living with long COVID and how they perceive the healthcare services available to them.DesignQualitative systematic review.Data sourcesElectronic literature searches of websites, bibliographic databases and discussion forums, including PubMed LitCovid, Proquest COVID, EPPI Centre living systematic map of evidence, medRxiv, bioRxiv, Medline, Psychinfo and Web of Science Core Collection were conducted to identify qualitative literature published in English up to 13 January 2021.Inclusion criteriaPapers reporting qualitative or mixed-methods studies that focused on the experiences of long COVID and/or perceptions of accessing healthcare by people with long COVID. Title/abstract and full-text screening were conducted by two reviewers independently, with conflicts resolved by discussion or a third reviewer.Quality appraisalTwo reviewers independently appraised included studies using the qualitative CASP (Critical Appraisal Skills Programme) checklist. Conflicts were resolved by discussion or a third reviewer.Data extraction and synthesisThematic synthesis, involving line-by-line reading, generation of concepts, descriptive and analytical themes, was conducted by the review team with regular discussion.ResultsFive studies published in 2020 met the inclusion criteria, two international surveys and three qualitative studies from the UK. Sample sizes varied from 24 (interview study) to 3762 (survey). Participants were predominantly young white females recruited from social media or online support groups. Three analytical themes were generated: (1) symptoms and self-directed management of long COVID; (2) emotional aspects of living with long COVID and (3) healthcare experiences associated with long COVID.ConclusionsPeople experience long COVID as a heterogeneous condition, with a variety of physical and emotional consequences. It appears that greater knowledge of long COVID is required by a number of stakeholders and that the design of emerging long COVID services or adaptation of existing services for long COVID patients should take account of patients’ experiences in their design.

Long-COVID post-viral chronic fatigue syndrome and affective symptoms are associated with oxidative damage, lowered antioxidant defenses and inflammation: a proof of concept and mechanism study

“…The most often used definition is: symptoms persisting for more than three months from the onset of acute COVID-19 9,10 . Extended symptoms have been classified as probably infection-related (up to 4-5 weeks), acute post-COVID symptoms (weeks [5][6][7][8][9][10][11][12], prolonged post-COVID symptoms (weeks [12][13][14][15][16][17][18][19][20][21][22][23][24], and chronic post-COVID symptoms (more than 24 weeks) 7 .…”

“…Following the acute phase of COVID-19, the presence of more than one symptom is quite prevalent, occurring in 74% 11,12 to 87.4 percent of all infected patients 12 . Initially, patient concerns were dismissed as mental health problems, including worry or stress 13 , but later it became clear that people who suffer from longterm COVID have a wide range of physical and mental symptoms [14][15][16] . Among the various symptoms associated with Long COVID, the most frequently reported symptoms are fatigue and dyspnoea 9,11,17,18 , post-traumatic stress symptoms 19,20 , concentration and memory problems 21,22 , and anxiety and depression 4,23 .…”

Making space for disability studies within a structurally competent medical curriculum: reflections on long Covid

“…Since the emergence of long Covid, people with this condition have reported disbelief and undue psychologisation from healthcare professionals (Ladds et al 2020;Macpherson et al 2022;Kingstone et al 2020), although the referenced studies also demonstrate that not all (micro-level) healthcare encounters have been reported as negative. In fact, the barriers to understanding long Covid, and validation of patient narrative, appear predominantly structural; lack of adequate explanatory healthcare model, unpreparedness of health services to provide appropriate healthcare and a culture of privileging 'objective' markers and clinical expertise over patient narrative have all been discussed and challenged in this regard (see Maxwell and Poole 2021;Hunt 2020;Alwan et al 2020).…”

“…It has also been argued that ableist discourse-for example the 'recover or die' narrative-further embedded in the biopolitical ideology of neoliberalism, permeates healthcare and the social security system and negatively impacts on chronically ill and disabled people, including people with long Covid (Hunt, Blease, and Geraghty 2022). Associated binaries discernible in COVID-19 discourse, including 'mild infection or death' (Kingstone et al 2020) and 'non-hospitalised (non-serious) or hospitalised (serious)' (Macpherson et al 2022), are likely associated with reported difficulties accessing social security benefits, workplace accommodations, sick certification, disability insurance and broader social support, alongside appropriate healthcare (see Ladds et al 2020;Davis et al 2021;Kingstone et al 2020). To determine whether such structural factors may be understood as facets of disability (oppression, disablism) as per the social relational model (Thomas 2007), a more detailed exploration of the experiences of people with long Covid is indicated.…”

SIGNs of COVID-19: Is evidence contagious?

“…As part of this collaboration, a qualitative systematic review to understand the experience of long COVID from patients’ perspectives was recently published. 8…”