Accepted for/Published in: JMIR Formative Research
Date Submitted: Apr 28, 2023
Date Accepted: Jul 28, 2023
Diagnosis Disclosure and Peer-to-Peer Information Seeking Among COVID-Infected Social Media Users: A Survey of U.S-Based Adults
ABSTRACT
Background:
Research examining online health communities (OHCs) suggests that individuals affected by chronic health conditions can obtain valuable information and social support through participation in peer-to-peer online 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 suffering from 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/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’re suffering from. Additionally, this study seeks to identify the motivations for these behaviors, as well as their subsequent impacts on COVID-infected individuals’ perceived social connectedness and health anxiety.
Methods:
A representative survey of 2,500 U.S.-based adults was conducted via sample purchased through an industry leading market research provider. Participants were selected via a stratified quota sampling approach to ensure a representative sample of the U.S. 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 (18%) chose to disclose and discuss their COVID-19 diagnosis while infected with the virus. However, among those who did, an overwhelming majority (82%) say that doing so helped them feel more connected and supported while suffering from the virus. A larger percentage of the 946 respondents (34%) engaged in peer-to-peer information seeking while infected with COVID-19. Among those who did, a large majority 94% said that doing so was “helpful”, but more than a third (36%) said that reading about other people’s experiences made them “more worried” about having COVID-19, while 33% said that it made them “less worried”. Illness severity and political affiliation were both significant predictors of information sharing and seeking.
Conclusions:
The findings suggest that the benefits (and risks) associated with OHCs are germane to those suffering from acute illnesses such as COVID-19. It’s recommended that public health officials and healthcare 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/connectedness among infected patients. Clinical Trial: N/A
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