Are online support groups always beneficial? A qualitative exploration of the empowering and disempowering processes of participation within HIV/AIDS-related online support groups

Abstract

Background: Human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) is one of the leading concerns in healthcare. Individuals living with HIV/AIDS are often confronted with tremendous physical and psychosocial challenges. Online support groups can provide a valuable source of information, advice and support, and a medium through which individuals living with HIV/AIDS can interact with each other and share their experiences. However, very little is known about how online support group might promote empowerment and the potential disadvantages associated with online support group use among individuals living with HIV/AIDS.

Objectives: The present study explored the potential empowering and disempowering processes, and empowering outcomes of online support group use among individuals with HIV/AIDS.

Design, settings, participants: A total of 115 HIV-positive online support group members were recruited from HIV-related online support groups. They completed an online survey exploring their experiences of online support group use.

Results: Thematic analysis revealed six empowering processes arising from use of online support groups: exchanging information, sharing experiences, connecting to others, encountering emotional support, finding recognition and understanding, and helping others. Six empowering outcomes were identified: increased optimism, emotional well-being, social well-being, being better informed, improved disease management, and feeling confident in the relationship with physicians. Potentially disempowering processes were also identified which included: being unable to connect physically, inappropriate behaviour online, declining real life relationships, and information overload and misinformation.

Conclusion: Findings suggest ways through which individuals with HIV/AIDS may be empowered although some problematic features specific to the online context may also be present.

Keywords: Disadvantage; Empowerment; HIV/AIDS; Internet; Online support groups.