Living with “long COVID”: A systematic review and meta-synthesis of qualitative evidence

Abstract

Objectives Long-term health consequences of coronavirus disease (COVID-19), also known as “long COVID,” has become a global health concern. In this systematic review, we aimed to synthesize the qualitative evidence on lived experiences of people living with long COVID that may inform health policymaking and practice. Methods We searched six major databases and additional sources and systematically retrieved relevant qualitative studies and conducted a meta-synthesis of key findings using the Joanna Briggs Institute (JBI) guidelines and reporting standards of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) checklist. Results We found 15 articles representing 12 studies out of 619 citations from different sources. These studies provided 133 findings that were categorized into 55 categories. All categories were aggregated to the following synthesized findings: living with complex physical health problems, psychosocial crises of long COVID, slow recovery and rehabilitation, digital resources and information management, changes in social support, and experiences with healthcare providers, services, and systems. Ten studies were from the UK, and others were from Denmark and Italy, which highlights a critical lack of evidence from other countries. Conclusions More representative research is needed to understand long COVID-related experiences from diverse communities and populations. The available evidence informs a high burden of biopsychosocial challenges among people with long COVID that would require multilevel interventions such as strengthening health and social policies and services, engaging patients and caregivers in making decisions and developing resources, and addressing health and socioeconomic disparities associated with long COVID through evidence-based practice.

Searching for a brighter future—Lived experiences of ongoing recovery processes following COVID‐19 infection

“…As documented in recent literature reviews, a growing body of qualitative research shows that living with persistent symptoms following COVID-19 infection may lead to extensive changes in people's everyday lives, health, socio-economic circumstances and identity, but knowledge of how these elements may evolve remains limited [4,5].…”

“…Similarly, Missel et al [8] found that being afflicted by COVID-19 virus did not only affect the biology of the body but was also experienced as a threat to ordinary existence, bodily perceptions and usual social relationships. On their way towards a new normality, people furthermore have described the body as marked and how it made them feel vulnerable and isolated in their social life [5][6][7]9].…”

“…In the initial period of the pandemic, a lack of acknowledgement of post COVID‐19 challenges was reported, along with difficulty in receiving appropriate support from the healthcare system [7, 15–17]. Evidence on how to tailor suitable care that considers patients' complex needs during prolonged recovery following COVID‐19 infection remains sparse [5]. Research that explores ongoing and changing experiences of living with the post COVID‐19 condition may help us to further understand the challenge of recovery from a yet not fully understood illness condition.…”

Social determinants of recovery from ongoing symptoms following COVID-19 in two UK longitudinal studies: a prospective cohort study

“…Further studies in Germany and UK assessing ongoing post-COVID symptoms or illness severity rather than self-perceived recovery directly have also found protective effects against ongoing symptoms for those with higher educational qualification levels [16], higher income [17], and those employed and economically active [11]. A UK qualitative study also identified a slow recovery process and socio-economic challenges to recovery as themes for individuals living with long COVID [18].…”

Post-COVID-Versorgung braucht Rehabilitation

“…Qualitative Studien zeigen, dass sich die verschiedenen Symptome, die die Betroffenen erleben, gegenseitig verstärken können und als Symptomkomplex zu erheblichen Einschränkungen des Alltags und des Arbeitslebens führen. Psychosozial wird dies als sehr belastend beschrieben [12].…”