JMIR Publications

ABSTRACT

Background:

Since the first AIDS case in the 1980s, the disease has become prevalent globally, affecting 39 million people by 2022 (Payagala and Pozniak, 2024). In China, 1.223 million cases were reported as of 2022 (Han, 2023). The rise of Internet technology has led to the creation of online health communities (OHCs), where patients and stakeholders share experiences and information (Lu and Zhang, 2019). Platforms like Sina Weibo, a popular Chinese microblogging site with 582 million monthly users in 2022, have facilitated the formation of unique communities for people living with HIV/AIDS, often referred to as "A-friends" (Chen et al., 2019). These users share medical information, offer support, and build connections, leveraging Weibo’s visibility mechanisms to develop a sense of belonging.

Objective:

This study explores how individuals with HIV/AIDS navigate the tension between visibility and sensitive identities on Weibo and examines the impact of visibility on their social inclusion and self-reconstruction.

Methods:

Thirty-one participants, including 30 HIV-positive individuals and one non-infected partner, were interviewed via online calls, text, or in-person meetings. Interviews lasted 31 minutes to over 3 hours, generating 617,599 words of data analyzed using thematic coding. A survey of 248 questionnaires yielded 210 valid responses. Non-participant observation complemented the data.

Results:

Visibility on Weibo operates on three dimensions: public, social, and self. Public visibility empowers "A-friends" to combat discrimination and advocate for rights, with 71.69% believing it helps reduce stigma. Social visibility fosters community bonding, empathy, and trust through shared experiences, while self-visibility aids in documenting illness, enhancing self-efficacy, and fostering psychological resilience. However, visibility poses challenges, including privacy risks, information overload, and self-stigma. Some participants reported anxiety over being discovered by acquaintances despite privacy settings, while others experienced emotional exhaustion from managing their online presence.

Conclusions:

Visibility is a double-edged sword. It provides empowerment, community support, and self-reconstruction opportunities but also introduces risks like surveillance, exclusion, and ego depletion. This study highlights the need for inclusive online and offline environments to support individuals with HIV/AIDS. Future research should address platform-specific dynamics and ethical considerations. Clinical Trial: N/A