Living Situation Affects Adherence to Combination Antiretroviral Therapy in HIV-Infected Adolescents in Rwanda

Researchers sought to address the problem of adherence to combination antiretroviral therapy (cART) among HIV-infected adolescents in Rwanda, a demographic group for whom adherence is challenging in spite of its importance for survival and quality of life. The study used multiple data sources of a participatory nature to gain a better understanding of adherence barriers for Rwandan adolescents:

• role-play;
• focus group discussions (FGD); and
• in-depth interviews (IDI).

Forty-two HIV positive youth between the ages of 12 and 21, as well as some of their primary caregivers, were interviewed. Topics discussed during the FGDs and IDIs included:

• learning about HIV status;
• disclosure and stigma;
• issues for care and treatment; and
• cART adherence barriers.

Overarching but inter-related themes appeared to influence adherence among the group, whose participants were 46% female, 45% orphaned, and 48% living in boarding schools: stigma, perceived and experienced; and inadvertent disclosure of HIV status.

Both of these factors hampered adolescents in getting and taking their drugs, attending clinic visits, and carrying their cARTs with them in public.

A second important theme was the need for better support, especially for young people in different living situations, such as orphanages, foster-care, and boarding schools. For young people living in "congested" households including boarding schools, the lack of privacy was the key barrier.

A third theme that emerged was the "desire to be 'normal' and not be recognized as an HIV-infected individual" so as to lead a normal life without the bother of a medicine regimen or disclosure to people who might treat them differently.

Some proposed solutions include:

• better management of HIV-infected adolescents integrated into boarding schools, orphanages, and foster care;
• training of school faculty on how to support students and allow them privacy for taking their medications; and
• HIV programmes that stimulate caregivers of HIV-infected adolescents to join them for clinic visits.