Navigating Visibility on Weibo Among People Living With HIV: Qualitative Study.

Area of Science:

• Digital Health
• Social Sciences
• Public Health

Background:

• Over 1.223 million people in China live with HIV, facing significant stigma and social exclusion.
• Sina Weibo, a major social media platform, serves as a critical online space for people living with HIV ('A-friends') to navigate visibility.
• Visibility on social media is understood as the capacity to be seen and the power dynamics associated with it.

Purpose of the Study:

• To explore how 'A-friends' manage their visibility on Sina Weibo.
• To examine the dual nature of visibility, which can empower marginalized groups while also exposing them to risks.
• To inform the development of supportive digital environments that balance empowerment with protection for individuals living with HIV.

Main Methods:

• Nonparticipant observation and semistructured interviews with 30 individuals living with HIV ('A-friends').
• Participants were recruited via opportunistic and snowball sampling on social media platforms.
• Thematic analysis using NVivo 11.0 was employed to analyze interview data.

Main Results:

• Two overarching themes emerged: the 'Climb Effect' (positive visibility outcomes) and the 'Slide Effect' (negative visibility outcomes).
• The 'Climb Effect' included self-reconstruction, community building, and public advocacy.
• The 'Slide Effect' encompassed social exclusion, privacy concerns, and ego depletion.

Conclusions:

• Visibility in online health communities is layered and cyclical, conceptualized as a 'visibility ladder model'.
• Self, social, and public visibility offer benefits like personal growth and collective action but also pose risks such as self-stigmatization and privacy breaches.
• Future efforts should focus on enhancing eHealth literacy, strengthening privacy, and promoting inclusive digital spaces to mitigate harms and optimize benefits of online visibility.