skip to main content

Title: Learning From the Experiences of COVID-19 Survivors: Web-Based Survey Study
Background There are still many unanswered questions about the novel coronavirus; however, a largely underutilized source of knowledge is the millions of people who have recovered after contracting the virus. This includes a majority of undocumented cases of COVID-19, which were classified as mild or moderate and received little to no clinical care during the course of illness. Objective This study aims to document and glean insights from the experiences of individuals with a first-hand experience in dealing with COVID-19, especially the so-called mild-to-moderate cases that self-resolved while in isolation. Methods This web-based survey study called C19 Insider Scoop recruited adult participants aged 18 years or older who reside in the United States and had tested positive for COVID-19 or antibodies. Participants were recruited through various methods, including online support groups for COVID-19 survivors, advertisement in local news outlets, as well as through professional and other networks. The main outcomes measured in this study included knowledge of contraction or transmission of the virus, symptoms, and personal experiences on the road to recovery. Results A total of 72 participants (female, n=53; male, n=19; age range: 18-73 years; mean age: 41 [SD 14] years) from 22 US states were enrolled in this more » study. The top known source of how people contracted SARS-CoV-2, the virus known to cause COVID-19, was through a family or household member (26/72, 35%). This was followed by essential workers contracting the virus through the workplace (13/72, 18%). Participants reported up to 27 less-documented symptoms that they experienced during their illness, such as brain or memory fog, palpitations, ear pain or discomfort, and neurological problems. In addition, 47 of 72 (65%) participants reported that their symptoms lasted longer than the commonly cited 2-week period even for mild cases of COVID-19. The mean recovery time of the study participants was 4.5 weeks, and exactly one-half of participants (50%) still experienced lingering symptoms of COVID-19 after an average of 65 days following illness onset. Additionally, 37 (51%) participants reported that they experienced stigma associated with contracting COVID-19. Conclusions This study presents preliminary findings suggesting that emphasis on family or household spread of COVID-19 may be lacking and that there is a general underestimation of the recovery time even for mild cases of illness with the virus. Although a larger study is needed to validate these results, it is important to note that as more people experience COVID-19, insights from COVID-19 survivors can enable a more informed public, pave the way for others who may be affected by the virus, and guide further research. « less
Award ID(s):
Publication Date:
Journal Name:
JMIR Formative Research
Page Range or eLocation-ID:
Sponsoring Org:
National Science Foundation
More Like this
  1. OBJECTIVES: The coronavirus disease 2019 (COVID-19) pandemic has fueled xenophobia against Chinese Americans. We examined the rates of 6 types of COVID-19 racism and racial discrimination experienced by Chinese American parents and youth and the associations with their mental health. METHODS: We recruited a population-based sample of Chinese American families to participate in this self-reported survey study conducted from March 14, 2020, to May 31, 2020. Eligible parent participants identified as ethnically/racially Chinese, lived in the United States, and had a 4- to 18-year-old child; their eligible children were 10 to 18 years old. RESULTS: The sample included 543 Chinesemore »American parents (mean [SD] age, 43.44 [6.47] years; 425 mothers [78.3%]), and their children (N = 230; mean [SD] age, 13.83 [2.53] years; 111 girls [48.3%]). Nearly half of parents and youth reported being directly targeted by COVID-19 racial discrimination online (parents: 172 [31.7%]; youth: 105 [45.7%]) and/or in person (parents: 276 [50.9%]; youth: 115 [50.2%]). A total of 417 (76.8%) parents and 176 (76.5%) youth reported at least 1 incident of COVID-19 vicarious racial discrimination online and/or in person (parents: 481 [88.5%]; youth: 211 [91.9%]). A total of 267 (49.1%) parents and 164 (71.1%) youth perceived health-related Sinophobia in America, and 274 (50.4%) parents and 129 (56.0%) youth perceived media-perpetuated Sinophobia. Higher levels of parent- and youth-perceived racism and racial discrimination were associated with their poorer mental health. CONCLUSIONS: Health care professionals must attend to the racism-related experiences and mental health needs of Chinese Americans parents and their children throughout the COVID-19 pandemic via education and making appropriate mental health referrals.« less
  2. Lin, Chung-Ying (Ed.)
    Background University students are increasingly recognized as a vulnerable population, suffering from higher levels of anxiety, depression, substance abuse, and disordered eating compared to the general population. Therefore, when the nature of their educational experience radically changes—such as sheltering in place during the COVID-19 pandemic—the burden on the mental health of this vulnerable population is amplified. The objectives of this study are to 1) identify the array of psychological impacts COVID-19 has on students, 2) develop profiles to characterize students' anticipated levels of psychological impact during the pandemic, and 3) evaluate potential sociodemographic, lifestyle-related, and awareness of people infected withmore »COVID-19 risk factors that could make students more likely to experience these impacts. Methods Cross-sectional data were collected through web-based questionnaires from seven U.S. universities. Representative and convenience sampling was used to invite students to complete the questionnaires in mid-March to early-May 2020, when most coronavirus-related sheltering in place orders were in effect. We received 2,534 completed responses, of which 61% were from women, 79% from non-Hispanic Whites, and 20% from graduate students. Results Exploratory factor analysis on close-ended responses resulted in two latent constructs, which we used to identify profiles of students with latent profile analysis, including high (45% of sample), moderate (40%), and low (14%) levels of psychological impact. Bivariate associations showed students who were women, were non-Hispanic Asian, in fair/poor health, of below-average relative family income, or who knew someone infected with COVID-19 experienced higher levels of psychological impact. Students who were non-Hispanic White, above-average social class, spent at least two hours outside, or less than eight hours on electronic screens were likely to experience lower levels of psychological impact. Multivariate modeling (mixed-effects logistic regression) showed that being a woman, having fair/poor general health status, being 18 to 24 years old, spending 8 or more hours on screens daily, and knowing someone infected predicted higher levels of psychological impact when risk factors were considered simultaneously. Conclusion Inadequate efforts to recognize and address college students’ mental health challenges, especially during a pandemic, could have long-term consequences on their health and education.« less
  3. Abstract

    Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has infected nearly 118 million people and caused ~2.6 million deaths worldwide by early 2021, during the coronavirus disease 2019 (COVID-19) pandemic. Although the majority of infected patients show mild-to-moderate symptoms, a small fraction of patients develops severe symptoms. Uncontrolled cytokine production and the lack of substantive adaptive immune response result in hypoxia, acute respiratory distress syndrome (ARDS), or multiple organ failure in severe COVID-19 patients. Since the current standard of care treatment is insufficient to alleviate severe COVID-19 symptoms, many clinics have been prompted to perform clinical trials involving the infusionmore »of mesenchymal stem cells (MSCs) due to their immunomodulatory and therapeutic properties. Several phases I/II clinical trials involving the infusion of allogenic MSCs have been performed last year. The focus of this review is to critically evaluate the safety and efficacy outcomes of the most recent, placebo-controlled phase I/II clinical studies that enrolled a larger number of patients, in order to provide a statistically relevant and comprehensive understanding of MSC’s therapeutic potential in severe COVID-19 patients. Clinical outcomes obtained from these studies clearly indicate that: (i) allogenic MSC infusion in COVID-19 patients with ARDS is safe and effective enough to decreases a set of inflammatory cytokines that may drive COVID-19 associated cytokine storm, and (ii) MSC infusion efficiently improves COVID-19 patient survival and reduces recovery time. These findings strongly support further investigation into MSC-infusion in larger clinical trials for COVID-19 patients with ARDS, who currently have a nearly 50% of mortality rate.

    « less
  4. In March 2020, the global COVID-19 pandemic forced universities across the United States to immediately stop face-to-face activities and transition to virtual instruction. While this transition was not easy for anyone, the shift to online learning was especially difficult for STEM courses, particularly engineering, which has a strong practical/laboratory component. Additionally, underrepresented students (URMs) in engineering experienced a range of difficulties during this transition. The purpose of this paper is to highlight underrepresented engineering students’ experiences as a result of COVID-19. In particular, we aim to highlight stories shared by participants who indicated a desire to share their experience withmore »their instructor. In order to better understand these experiences, research participants were asked to share a story, using the novel data collection platform SenseMaker, based on the following prompt: Imagine you are chatting with a friend or family member about the evolving COVID-19 crisis. Tell them about something you have experienced recently as an engineering student. Conducting a SenseMaker study involves four iterative steps: 1) Initiation is the process of designing signifiers, testing, and deploying the instrument; 2) Story Collection is the process of collecting data through narratives; 3) Sense-making is the process of exploring and analyzing patterns of the collection of narratives; and 4) Response is the process of amplifying positive stories and dampening negative stories to nudge the system to an adjacent possible (Van der Merwe et al. 2019). Unlike traditional surveys or other qualitative data collection methods, SenseMaker encourages participants to think more critically about the stories they share by inviting them to make sense of their story using a series of triads and dyads. After completing their narrative, participants were asked a series of triadic, dyadic, and sentiment-based multiple-choice questions (MCQ) relevant to their story. For one MCQ, in particular, participants were required to answer was “If you could do so without fear of judgment or retaliation, who would you share this story with?” and were given the following options: 1) Family 2) Instructor 3) Peers 4) Prefer not to answer 5) Other. A third of the participants indicated that they would share their story with their instructor. Therefore, we further explored this particular question. Additionally, this paper aims to highlight this subset of students whose primary motivation for their actions were based on Necessity. High-level qualitative findings from the data show that students valued Grit and Perseverance, recent experiences influenced their Sense of Purpose, and their decisions were majorly made based on Intuition. Chi-squared tests showed that there were not any significant differences between race and the desire to share with their instructor, however, there were significant differences when factoring in gender suggesting that gender has a large impact on the complexity of navigating school during this time. Lastly, ~50% of participants reported feeling negative or extremely negative about their experiences, ~30% reported feeling neutral, and ~20% reported feeling positive or extremely positive about their experiences. In the study, a total of 500 micro-narratives from underrepresented engineering students were collected from June – July 2020. Undergraduate and graduate students were recruited for participation through the researchers’ personal networks, social media, and through organizations like NSBE. Participants had the option to indicate who is able to read their stories 1) Everyone 2) Researchers Only, or 3) No one. This work presents qualitative stories of those who granted permission for everyone to read.« less
  5. Abstract Background Cross-sectional studies have found that the coronavirus disease 2019 (COVID-19) pandemic has negatively affected population-level mental health. Longitudinal studies are necessary to examine trajectories of change in mental health over time and identify sociodemographic groups at risk for persistent distress. Purpose To examine the trajectories of mental distress between March 10 and August 4, 2020, a key period during the COVID-19 pandemic. Methods Participants included 6,901 adults from the nationally representative Understanding America Study, surveyed at baseline between March 10 and 31, 2020, with nine follow-up assessments between April 1 and August 4, 2020. Mixed-effects logistic regression wasmore »used to examine the association between date and self-reported mental distress (measured with the four-item Patient Health Questionnaire) among U.S. adults overall and among sociodemographic subgroups defined by sex, age, race/ethnicity, household structure, federal poverty line, and census region. Results Compared to March 11, the odds of mental distress among U.S. adults overall were 1.84 (95% confidence interval [CI] = 1.65–2.07) times higher on April 1 and 1.92 (95% CI = 1.62–2.28) times higher on May 1; by August 1, the odds of mental distress had returned to levels comparable to March 11 (odds ratio [OR] = 0.80, 95% CI = 0.66–0.96). Females experienced a sharper increase in mental distress between March and May compared to males (females: OR = 2.29, 95% CI = 1.85–2.82; males: OR = 1.53, 95% CI = 1.15–2.02). Conclusions These findings highlight the trajectory of mental health symptoms during an unprecedented pandemic, including the identification of populations at risk for sustained mental distress.« less