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Managing HIV During the COVID-19 Pandemic: A Study of Help-Seeking Behaviors on a Social Media Forum

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Abstract

Although numerous editorials claim the COVID-19 pandemic has disproportionately impacted vulnerable populations, particularly those affected by HIV, these claims have received limited empirical evaluation. We analyzed posts to Reddit’s r/HIVAIDS from January 3, 2012 through April 30, 2022 to (a) assess changes in the volume of posts during the pandemic and (b) determine the needs of HIV affected communities. There were cumulatively 100% (95%CI: 75–126) more posts than expected since the US declared a pandemic emergency. The most prevalent themes in these posts were for obtaining an HIV + diagnosis (representing 34% (95%CI:29–40) of all posts), seeking HIV treatment (20%; 95%CI:16–25), finding psychosocial support (16%; 95%CI:12–20), and tracking disease progression (8%; 95%CI:5–11). Discussions about PrEP and PEP were the least common, representing less than 6% of all posts each. Social media has increasingly become an important health resource for vulnerable populations seeking information, advice, and support. Public health organizations should recognize how the lay public uses social media and collaborate with social media companies to ensure that the needs of help-seekers on these platforms are met.

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Acknowledgements

This work was supported by the California HIV Research Program, University of California Office of the President, UCSD PREPARE Institute, and National Institutes of Health. The funders played no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

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Authors and Affiliations

  1. Qualcomm Institute, University of California, #333 CRSF 9500 Gilman Drive, La Jolla, San Diego, CA, 92093, USA

    John W. Ayers

  2. Division of Infectious Diseases and Global Public Health, University of California, #333 CRSF 9500 Gilman Drive, La Jolla, San Diego, CA, 92093, USA

    John W. Ayers, Zechariah Zhu, Steffanie A. Strathdee & Davey M. Smith

  3. Department of Computer Science, Johns Hopkins University, Baltimore, MD, USA

    Keith Harrigian, Gwenyth P. Wightman & Mark Dredze

  4. Altman Clinical Translational Research Institute, University of California, La Jolla, San Diego, CA, USA

    Davey M. Smith

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  1. John W. Ayers
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Contributions

Ayers designed the study. Ayers and Zhu co-led the data analysis and annotation. All authors participated in the data interpretation, revising the manuscript, and agreed to the final submission.

Corresponding author

Correspondence to John W. Ayers.

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Competing Interests

Dr. Ayers owns equity positions in Health Watcher and Good Analytics. Dr. Dredze owns an equity position in Good Analytics and is a paid advisor to Sickweather and Bloomberg LP. Dr. Smith reports paid consulting for Bayer, Arena Pharmaceuticals, FluxErgy and Linear Therapies. The remaining authors do not report any conflict of interest.

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Ayers, J.W., Zhu, Z., Harrigian, K. et al. Managing HIV During the COVID-19 Pandemic: A Study of Help-Seeking Behaviors on a Social Media Forum. AIDS Behav 28, 1166–1172 (2024). https://doi.org/10.1007/s10461-023-04134-9

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