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

By the end of 2022, 1.223 million people were living with HIV in China. Beyond medical challenges, they often face stigma and social exclusion. In China, Sina Weibo (Sina Corporation), with over 582 million monthly active users as of 2022, has emerged as a critical space for people living with HIV, many of whom identify as "A-friends." They navigated these complex dynamics of visibility. In this context, visibility, understood as both the capacity to be seen and the power relations it entails, is a central affordance of social media.

This study aimed to explore how A-friends navigate their visibility on Weibo, focusing on the dual-edged nature of visibility. It examines how visibility can empower marginalized groups while also exposing them to risks. The study highlights the tension between these dynamics and aims to inform the creation of supportive digital environments that balance empowerment with protection from harm.

We conducted nonparticipant observation and semistructured interviews with 30 A-friends, recruited through opportunistic and snowball sampling on social media platforms. The data were analyzed thematically using NVivo 11.0 (QSR International). Among the participants, 86.67% (26/30) were interviewed via internet-based voice chat, 10% (3/30) offline, and 3.33% (1/30) by text. To confirm theoretical saturation, 3 additional interviews were coded separately, yielding no new themes.

As shown by the data, the majority of participants (56.67%, 17/30) were aged between 30 years and 40 years, with 43.33% (13/30) holding a bachelor's degree or higher. Most participants (46.67%, 14/30) were diagnosed with HIV 1-5 years ago, and all participants were asymptomatic. After coding the interviews, we identified 2 overarching themes during the development of the coding framework, each comprising 3 subcategories, resulting in a total of 6 subcategories. Theme 1 highlighted the positive implications of visibility, referred to as the Climb Effect, which included (1) self-reconstruction through illness narratives, (2) relational bonding and community building, and (3) public advocacy to challenge stigma. Theme 2 focused on the negative consequences, termed the Slide Effect, which encompassed (1) the reproduction of social exclusion and limited public empathy, (2) privacy concerns and risks of unintended disclosure, and (3) ego depletion.

This study highlights the layered and cyclical nature of visibility in online health communities, which we conceptualize through a visibility ladder model. Self-visibility promotes personal growth, health self-management, and psychological resilience but also introduces risks of self-stigmatization and emotional exhaustion. Social visibility strengthens peer support and shared identity while exposing individuals to privacy breaches and misinformation. Public visibility empowers collective action and advocacy, yet is constrained by persistent societal stigma and platform algorithms that limit audience reach. Future efforts should prioritize enhancing eHealth literacy, strengthening privacy protections, and promoting inclusive, stigma-reducing digital environments to optimize the benefits of visibility and mitigate its potential harms.