During a recent visit to the ED, a patient living with HIV was asked to wear an identification bracelet with “HIV” written on it in big letters to indicate her allergies to some antiretroviral medications. She was then instructed to return to the waiting room until the ED physician was ready to examine her. Fearing that people in the waiting room would see her status, the patient refused to wear the bracelet, locked herself in the restroom, and cried. When she emerged, she noticed that a huddle of health care workers had formed nearby. One whispered, “Look, that's her.” This is what HIV-related stigma looks like in the fourth decade of the epidemic, and it is harmful and unacceptable.
HIV-related stigma refers to negative attitudes, beliefs, and actions toward people living with HIV–AIDS and is considered among the most potent barriers to prevention and treatment. Stigma is pervasive in many settings, including the health sector. In fact, health care settings have been identified as critical sources of HIV-related stigma, where it is often internalized by those who are subjected to it and can contribute to poor treatment continuity, increased immunosuppression, suboptimal medication adherence, and mental health problems. A study by Magnus and colleagues in AIDS Patient Care and STDs (2013) found that “patient perception of provider willingness to care for patients with HIV and [patients’] sense of overarching shame and stigma were significantly associated with prior breaks in care.” In addition, a study by Earnshaw and colleagues in AIDS Behavior (2013) linked “anticipated or enacted” HIV-related stigma to higher likelihood of CD4 counts below 200 cells/mm3 and diagnosis of a chronic illness. Still other studies have linked internalization of HIV-related stigma to poor antiretroviral medication adherence.
Reduction strategies. Among health care workers, HIV stigma is often driven by poor knowledge of transmission pathways. This can be addressed with innovative learning tools, such as tablets. Radhakrishna and colleagues, for instance, implemented a tablet-based stigma reduction program for nursing students in India that involved educational videos, illustrations, and virtual hospital walk-throughs (Perspectives in Health Information Management, 2017).
Delivery of factual information about HIV and related prejudices should be combined with in-person interactions between health care workers and patients living with HIV. This can elicit productive dialogue, produce teachable moments, and humanize HIV. In one study by Davtyan and colleagues in the Journal of the Association of Nurses in AIDS Care (2016), African American and Latina women used participatory photography (Photo Voice) to reflect on their experiences with HIV-related stigma. They later used the photographs during grand rounds and in-service trainings to teach health care workers about stigma.
Many health care settings lack organizational policies that delineate how patients living with HIV should be treated to reduce HIV-related stigma. To address these gaps, three strategies may be useful:
- implementing HIV-related stigma reduction standard operating procedures developed collaboratively by patients living with HIV and health care workers
- encouraging employee compliance with such procedures by offering CME/CEU credits
- tracking HIV-related stigma by administering incentivized short surveys to patients living with HIV and using the results to inform employee-training protocols
HIV-related stigma in health care settings is particularly destructive and may shape HIV risk profiles, the rate of disease progression, and the overall outcome of infection. We haven't a moment to lose. The time to act is now.