Learning From the Experiences of COVID-19 Survivors: Web-Based Survey Study

Abstract

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 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.

Understanding the Link between COVID-19 and HIV/AIDS Stigmas

“…For example, some studies found that practicing social distancing is associated with stigmatizing attitudes toward COVID-19 ( Berman et al 2020 ; Tomczyk, Rahn, and Schmidt 2020 ). In addition, those infected with COVID-19, susceptible to COVID-19 disease infection, or have infected household members are often stigmatized ( Adler et al 2022 ; Gutierrez et al 2022 ; Prioleau 2021 ; Ramaci et al 2020 ). The burden of COVID-19 has been linked to other political unrests where protests over restricted rights and freedom (due to constraints imposed to contain the spread of the virus) were featured in the public debate ( Bartusevičius et al 2021 ).…”

Covi̇d-19 Salgininin Psi̇kososyal Görünümleri̇: Bi̇r Gömülü Teori̇ Denemesi̇

“…Bu dönemde gerçekle tirilen psikososyal ara tırmaları birkaç ba lık altında toplamak mümkündür. Bunlar Covid-19'a yakalanıp iyile enler üzerine yapılan çalı malar (Olufadewa, 2020;Prioleau, 2021;Sun vd., 2021), salgının psikolojik ve sosyal etkilerini ara tıran çalı malar (Chakrawarty vd., 2021;Mazumder vd., 2021;Olufadewa, 2020;Sahoo vd., 2020;ahan, 2021) sa lık ve sosyal bakım profesyonellerinin psikososyal iyilik hallerini inceleyen çalı malar (Aughterson, McKinlay, Fancourt ve Burton, 2021), ergen ve gençlerin pandemi deneyimlerini inceleyen çalı malar (Branquinho, Kelly, Arevalo, Santos ve Matos, 2020;Mazumder vd., 2021), orta ya ve üstü ki ilerin deneyimlerini inceleyen çalı malar (Chakrawarty vd., 2021) gibi sıralanabilir.…”

“…Covid-19 virüsüne yakalanıp iyile enler üzerine yapılan çalı malar incelendi inde, bu hastalı ın ki ilerde fizyolojik, psikolojik, davranı sal ve sosyal de i ikliklere sebep oldu u görülmektedir. Ate , nefes almada zorluk, i tahta azalma, tat ve koku kaybı (Olufadewa, 2020; Prioleau, 2021) ü üme, öksürük, titreme, a rı, (Olufadewa, 2020), ba ve kas a rıları (Branquinho vd, 2020), bilinç ve hafıza bulanıklı ı/karma ası (brain and memory fog), çarpıntı (Prioleau, 2021) de i iklikler fizyolojik etmenler arasında yer almaktadır.…”

“…Ailede içi çatı malar, anla mazlıklar, ya amın önemli anlarında kayıplar ya ama (Branquinho vd, 2020), aile ile daha fazla zaman geçirebilme (Mazumder vd., 2021), arkadalarla bulu amama (Chakrawarty vd., 2021), ki iler arası etkile imin de i mesi (Mazumder vd., 2021) gibi faktörler ise sosyal etkiler arasında de erlendirilir. Öte yandan hastalı a yakalanıp iyile en ki ilere yönelik yapılan çalı malar, toplumsal anlamda dı lanma, damgalanma ve yargılama gibi olguların ortaya çıktı ını göstermektedir (Olufadewa, 2020;Prioleau, 2021). Bununla birlikte içselle tirilmi ayrımcılık (internalized stigma) olgusunun (Sahoo vd., 2020) da ortaya çıktı ını belirtmek gerekmektedir.…”

The Emotional and Personal Experiences of the COVID-19 Illness During the Early Pandemic: A Qualitative Study

“… 23 These studies have summarized a broad range of themes, including uncertainty, worry, psychological growth, persistent symptoms, shame, stigma, and acceptance. 24 , 25 , 26 , 27 , 28 To date, qualitative studies on COVID-19 patient illness experiences have been limited by small sample sizes that focus primarily on hospitalized patients. 23 , 29 , 30 , 31 This study seeks to enhance the qualitative literature by examining the emotional symptoms that accompany the acute illness and recovery of a larger and more clinically heterogeneous sample of post-acute COVID-19 patients.…”