The role of fear as a barrier and facilitator to antiretroviral therapy initiation in Indonesia: insights from patients and providers

Initiating antiretroviral therapy (ART) in Indonesia poses major challenges, with limited studies on specific ART initiation barriers and facilitators. Using a socioecological approach, we explored, through semi-structured interviews, the perspectives of 67 participants: 17 people with HIV not (yet) on ART, 30 people with HIV on treatment, and 20 HIV service providers (HSPs). Fears emerged as pervasive barriers to initiation encompassing, at the intrapersonal level, (irrational) fears of negative medical and non-medical consequences. At the health system level, fears were linked to concerns about bureaucracy and insufficient universal coverage. On a societal level, fears stemmed from prevalent myths, misinformation on social media, and the impact of COVID-19. Interestingly, fear also served as a facilitator to initiation. At the intrapersonal level, initiation was driven by a fear of deteriorating health or death due to AIDS-related conditions. At the interpersonal level, buddies and HSPs leveraged to motivate initiation. At the societal level, accurate yet fear-inducing information on social media stimulated initiation. Perspectives differed between people with HIV and HSP, with people with HIV emphasizing barriers on intrapersonal to health system levels, while HSP focused mostly on intrapersonal and interpersonal barriers, albeit recognizing the crucial role of health systems.