One of the main issues people living with HIV/AIDS and their families face is HIV stigma. In a recent study published in the Journal of the International Association of Providers of AIDS Care, CHSR fellow Dr. Megan McHenry, MD examined how HIV-infected adolescents and their families are affected by HIV stigma.

Dr. McHenry and the other authors conducted a qualitative study, using focus groups to assess how kids with HIV and their caregivers felt about HIV stigma, and to learn what their own experiences with it had been.  “When people are talking about their experiences with HIV there’s this known entity,” McHenry says, “Stigma is always present.” The most common type of stigma is “perceived stigma,” where infected patients worry that they will be judged for their HIV status. The teens and their caregivers feared physical, emotional, or social isolation from people such as their family members, neighbors, and peers. 

Dr. McHenry’s own experience observing HIV-infected children and adolescents underscores what she learned from the focus groups. Employment, she noted, was a particular challenge, because finding work can be hard enough in the patients’ area of Kenya, the added stigma of having HIV can create a serious burden for someone looking for a job. She has also observed that social isolation can be very common for children infected with HIV because their friends and peers don’t understand how the disease in transmitted, so the other kids won’t play with them for fear of catching HIV.

The focus groups were part of a greater project, in which CHSR’s global health team is developing a tool to measure HIV stigma.

McHenry MS, Nyandiko WM, Scanlon ML, Fischer LJ, McAteer CI, Aluoch J, Naanyu V, Vreeman RC. HIV Stigma: Perspectives from Kenyan Child Caregivers and Adolescents Living with HIV. J Int Assoc Provid AIDS Care. 2016 Sep 21. pii: 2325957416668995. [Epub ahead of print] DOI: 10.1177/2325957416668995.