research-article

Fishing for Validation: Understanding Promises and Challenges of a Private Social Media Group for COVID-19 Long-Hauler Patients

Authors:

Abhinav Reddy Karra,

Ranjan Jaiswal,

Sanorita DeyAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 7, Issue CSCW1

Article No.: 54, Pages 1 - 34

https://doi.org/10.1145/3579487

Published: 16 April 2023 Publication History

Abstract

The COVID-19 pandemic has affected more than 301 million people worldwide so far. Many communities (such as minority communities) suffered disproportionately more difficulties throughout the pandemic. In this paper, we would like to focus on one such community: COVID-19 long-haulers community. Long-hauler community consists of people affected by Coronavirus, but their symptoms do not cure in a couple of weeks; instead, they experience lingering symptoms for months. The concerns of this community were initially ignored by health care providers primarily because of limited information. In this paper, we have analyzed the social media discussion of a private Facebook group dedicated to the long-hauler community. In addition, we interviewed the community members to investigate their motivations for joining the group and how the group has impacted their lives as long-hauler patients. Our analyses revealed the primary discussion topics of this community. It also showed how a minority community could stand by each other using social media groups during a crisis. We concluded the paper with long-term implications of our findings for health care systems, policies, and existing literature on cooperative AI.

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Cited By

Chopra SCarroll JPater J(2024)Providing Context to the "Unknown": Patient and Provider Reflections on Connecting Personal Tracking, Patient-Reported Insights, and EHR Data within a Post-COVID ClinicProceedings of the ACM on Human-Computer Interaction10.1145/36869888:CSCW2(1-34)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686988
Pendse SKumar NDe Choudhury M(2024)Quantifying the Pollan Effect: Investigating the Impact of Emerging Psychiatric Interventions on Online Mental Health DiscourseProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642477(1-22)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642477

Index Terms

Fishing for Validation: Understanding Promises and Challenges of a Private Social Media Group for COVID-19 Long-Hauler Patients
1. Human-centered computing
  1. Collaborative and social computing
    1. Empirical studies in collaborative and social computing
  2. Human computer interaction (HCI)
    1. Empirical studies in HCI

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cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 7, Issue CSCW1

CSCW

April 2023

3836 pages

EISSN:2573-0142

DOI:10.1145/3593053

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Published: 16 April 2023

Published in PACMHCI Volume 7, Issue CSCW1

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Cited By

Chopra SCarroll JPater J(2024)Providing Context to the "Unknown": Patient and Provider Reflections on Connecting Personal Tracking, Patient-Reported Insights, and EHR Data within a Post-COVID ClinicProceedings of the ACM on Human-Computer Interaction10.1145/36869888:CSCW2(1-34)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686988
Pendse SKumar NDe Choudhury M(2024)Quantifying the Pollan Effect: Investigating the Impact of Emerging Psychiatric Interventions on Online Mental Health DiscourseProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642477(1-22)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642477

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