The reality of living with HIV as a refugee in Uganda

A new study into the experiences of refugees living with HIV in Uganda reveals that, despite participants being highly motivated to adhere to their antiretroviral treatment (ART), unrest and instability means that many regularly miss doses.

Around 70 HIV-positive refugees living in Nakivale Refugee Settlement in south western Uganda were interviewed between March and July 2011, along with four staff from the HIV clinic serving the settlement.

Participants were predominantly female (59%), with an average age of 40, and had been living in Nakivale, a settlement of 56,000 refugees, for an average of nine years. The majority of interviewees were from Rwanda (74%), while others were from the Democratic Republic of the Congo (18%), Burundi (7%) and Sudan (< 2%).

During semi-structured, private interviews, participants expressed a profound motivation to adhere to treatment. “I decided to love tablets as I love to eat the food”, commented one 38-year-old woman, capturing the view held by many of those interviewed that ART is a life-sustaining necessity.

Despite the austere setting of the camp, the vast majority of interviewees worked hard to adhere to treatment. Researchers found many adopted creative adherence strategies, such as using the time given during BBC news broadcasts to mark when they should take their medication.

However, refugees spoke of a number of hardships that led to missed doses. Some of these problems – such as a two-hour walk to the clinic, food insecurity, drug stock-outs and travelling long distances to find work – are barriers faced by many people living with HIV in resource-poor settings. But a number of additional barriers to treatment, arising as a direct consequence of living in a refugee settlement, were also identified.

For example, some interviewees described how violence and unrest in the settlement could lead to treatment disruptions. One man described how he was left without ART for a week after medical staff fled to the nearest city following a murder in the settlement. Another interviewee described how a dispute led one group to block the roads in and out of the settlement, leaving her unable to reach the HIV clinic.

Participants also expressed fears that they would lose their access to ART if they left the settlement, which left them unwilling to return home or move elsewhere. One interviewee said he was likely to be incarcerated if he returned to his native country and would be denied treatment.

Others described experiences of trying to leave Nakivale, only to return after facing difficulties enrolling in HIV care. While HIV clinic staff spoke of transfer of care processes, these measures were not always employed and refugees seemed unaware of them.

This research suggests interventions to address the specific adherence challenges experienced by refugees living with HIV are needed. Through interventions such as treatment information cards, duplicate medical records and cooperation between HIV clinics in neighbouring regions, the health of refugees living with HIV could be improved, the risk of HIV transmission could be reduced, and the prospect of life outside settlement camps could become a reality for more people.