Diagnosis Disclosure and Peer-to-Peer Information Seeking Among COVID-19–Infected Social Media Users: Survey of US-Based Adults

Abstract

Background Research examining online health communities suggests that individuals affected by chronic health conditions can obtain valuable information and social support through participation in peer-to-peer web-based information exchanges, including information sharing and seeking behaviors. The risks and rewards of these same behaviors in the case of acute illnesses, such as COVID-19, are less well understood, though there is reason to believe that individuals with COVID-19 and other acute illnesses may accrue similar benefits. Objective This study examines the propensity of American adults to disclose and discuss their COVID-19 diagnosis and symptoms on social media while actively infected with the SARS-CoV-2 virus, as well as to engage in peer-to-peer information seeking in order to better understand the illness that they are experiencing. Additionally, this study seeks to identify the motivations for these behaviors as well as their subsequent impacts on perceived social connectedness and health anxiety in patients with COVID-19. Methods We conducted a representative survey of 2500 US-based adults using a sample purchased through an industry-leading market research provider. Participants were selected through a stratified quota sampling approach to ensure a representative sample of the US population. Balanced quotas were determined (by region of the country) for gender, age, race, ethnicity, and political affiliation. Responses were analyzed from 946 participants who reported having an active social media account and testing positive for COVID-19 at least once since the start of the pandemic. Results The results show that only a small portion of social media users (166/946, 18%) chose to disclose and discuss their COVID-19 diagnosis while infected with the virus. However, among those who did, an overwhelming majority (206/251, 82%) said that doing so helped them feel more connected and supported while infected with the virus. A larger percentage of the 946 respondents (n=319, 34%) engaged in peer-to-peer information seeking while infected with COVID-19. Among those who did, a large majority (301/319, 94%) said that doing so was “helpful,” but more than one-third (115/319, 36%) said that reading about other people’s experiences made them “more worried” about having COVID-19, while 33% (108/319) said that it made them “less worried.” Illness severity and political affiliation were significant predictors of both information sharing and seeking. Conclusions The findings suggest that the benefits (and risks) associated with online health communities are germane to patients with acute illnesses such as COVID-19. It is recommended that public health officials and health care providers take a proactive approach to cultivating professionally moderated forums supporting peer-to-peer engagement during future outbreaks of COVID-19 and other acute illnesses in order to improve patient outcomes and promote social support and connectedness among infected patients.

Belief in misinformation and acceptance of COVID-19 vaccine boosters: A survey analysis

“…The World Health Organization (WHO) noted in September 2020 that COVID-19 “is the first pandemic in history in which technology and social media are being used on a massive scale to keep people safe, informed, productive and connected” [ 22 ]. While social media have been shown to provide some important benefits, particularly for those actively infected with the SARS-CoV-2 virus [ 23 ], evidence also shows that platforms such as Facebook and Twitter have contributed to the politicization of COVID-19, as well as the viral spread of misinformation. As a result, health professionals have been forced to learn and innovate in real-time to combat the evolving challenges and threats associated with the digital infodemic .…”

Social Media Authentication and Users’ Assessments of Health Information: Random Assignment Survey Experiment

“…Evidence collected across a range of geographical contexts showed heavy use of these platforms for information seeking during the COVID-19 pandemic [ 1 - 3 ], and health professionals have increasingly sought to engage with SNS users through these mediums in an attempt to promote timely and reliable health guidance [ 4 , 5 ]. On the one hand, these tools promise greater access and connectivity for patients and consumers, and recent evidence has suggested that individuals infected with COVID-19 were able to gain valuable information and social support through engagement with their SNS communities during the pandemic [ 6 ]. On the other hand, social networking platforms such as X have proven highly susceptible to misinformation and politicization, particularly as it relates to the safety and efficacy of vaccines [ 7 , 8 ].…”