Characterizing the COVID-19 illness experience to inform the study of post-acute sequelae and recovery: a qualitative study

Abstract

We aimed to characterize the variability in the illness experience and recovery process from COVID-19. We conducted 24 in-depth individual interviews with participants enrolled in the Long-term Immunological Impact of Novel Coronavirus (LIINC) cohort study in San Francisco, California from June through October of 2020. Participants were adults who had a previously confirmed positive SARV-CoV-2 nucleic acid amplification test result, had recovered or were recovering from acute infection, and underwent serial evaluations at our clinical research center. We purposefully sampled 24 English- and Spanish-speaking adults with asymptomatic, mild and severe symptomatic infection, including those who were hospitalized, and those with HIV co-infection. Half of our sample (50.0%) identified as Latinx/Hispanic and most of the participants were men (62.5%). We used thematic analysis to characterize the illness experience, recovery process, and mental health impact of experiencing COVID-19 and present clinical data for each participant. Emergent themes were: (1) across symptom profiles and severity, experiencing COVID-19 was associated with psychological distress, (2) among participants with symptomatic infection, the illness experience was characterized by uncertainty in terms of managing symptoms and recovery, and (3) despite wide-ranging illness experiences, participants shared many common characteristics, including health information-seeking behavior facilitated by access to medical care, and uncertainty regarding the course of their illness and recovery. COVID-19 was associated with elevated levels of psychological distress, regardless of symptoms.

Psychological experience of COVID-19 patients: A systematic review and qualitative meta-synthesis

“…Twenty-three studies reported the presence of worry in patients, for various reasons. Some people expressed concern about their illness, fearing that they would not receive timely medical assistance, and that the disease would worsen resulting into complications or even death [ 11 , 14 , 18 ] . Some people are afraid that they will infect their family and friends, and damage their health [ 9 , 12 , 13 , [19] , [20] , [21] , [22] , [23] , [24] , [25] , [26] ] .…”

“…In ten studies, patients reported feeling miserable, and that the illness was an awful experience [ 9 , [11] , [12] , [13] , [14] , 18 , 21 , 26 , 28 , 29 ] . Unlike ordinary pneumonia infections, COVID-19 is associated with an intense attack on bodily systems by a highly functioning immune system, in addition to compromised lung function.…”

“…Table 2 lists the main themes and subthemes. Four studies showed that some people pay no attention to COVID-19 and have insufficient awareness of the disease; this can be referred to as "blind confidence" [9][10][11][12] . They believe that the threat of the virus is remote and only infects people with low immunity, such as the elderly and children, while those who regularly exercise and are in good health will not be infected.…”

“…The confusion, vague predictions, and sense of impending doom associated with COVID-19 messaging has created uncertainty and confusion among patients. Some participants described the experience as like being caught between life and death [11,27] . The desire for communication and emotional support…”

Exploring the recovery journey of COVID-19 critical care survivors during the first year after hospital discharge

“…Both qualitative and quantitative studies have explored the impact of ICU admission on COVID-19 survivors and their relatives in the first wave of the pandemic. 17,18 The recovery pathway from the perspectives of both stakeholders has been the focus of several studies. 9,12,[18][19][20][21] However, to our knowledge, no previous qualitative studies have explored the recovery needs of survivors and their families over time.…”