Community support worker program helps Ethiopian HIV patients remain engaged in care

Alan Lifson, M.D., M.P.H. Epidemiology and Community Health Professor with the University of Minnesota School of Public Health has spent the last seven years working on HIV programs in Ethiopia with long-time collaborators, in order to help support national and regional health bureaus in implementation of the Ethiopian national HIV/AIDS Strategy.

A major challenge identified by the health bureaus, and presented to Dr. Lifson’s partners, the Ethiopian office of the National Alliance of State and Territorial AIDS Directors (NASTAD), was that of all new HIV patients, a significant proportion (almost one in five according to one study) were lost to follow-up within the first year after initially entering care.

Lifson said there are a number of factors keeping HIV-positive patients in Ethiopia from staying on track with treatment.  “Many patients don’t really understand what HIV is or what their treatment consists of. Others are reluctant to come to the clinic because of feared stigma or because they find navigating the care system somewhat intimidating. Some patients stop treatment because of often mild side effects after starting HIV drugs. For others, distance to the clinic or other competing priorities can serve as barriers to accessing care”.

To mitigate those barriers, Lifson and his colleagues decided to test a one-year pilot community-based intervention in rural southern Ethiopia. Community support workers who were themselves HIV positive were hired and trained to provide a variety of services for other HIV patients who were newly diagnosed and entering into care. Support workers were assigned to the same villages or neighborhoods where their clients lived, and made regular community-based visits. Their support services included: education about HIV and healthy living, personal counseling, and facilitated communication with the HIV Clinic to help address patient medical concerns. Support workers encouraged clients to attend their regular doctor appointments and always take their medication, as well as providing overall social and personal support, which is often lacking.

“Many of these clients feel stigmatized and isolated by their diagnosis. They have no one else to talk to about their situation, and no one to go to for advice. These support workers have already walked in their shoes as someone living with HIV – they can provide firsthand knowledge from their own experiences and invaluable support that can’t be found anywhere else,” Lifson said.

The program has been extremely successful. After one year, 94% of patients were still retained in care. After excluding those patients who transferred early or who died (typically those who already had advanced HIV disease and who were ill before beginning HIV treatment), 100% remained engaged with their assigned support worker.

“The results really speak for themselves. I’m so humbled by the people that I met by working on this project, including their tremendous dedication to helping others. Every time I travel to Ethiopia, it is an incredibly positive experience, and gratifying to know that this project has helped make a difference in the lives of people with HIV,” Lifson said.

The results have been so positive that Lifson and his colleagues are expanding the program. They’re initiating a new community-based five-year study at 32 different hospitals and health clinics with over 1,700 patients to see if the same benefits can be seen with programs on a much larger scale.

“Expanding this intervention into new and diverse communities can certainly pose new challenges, but if we show that this community-based approach is successful, it could be applied to other HIV programs as well as programs for other diseases not only in Africa but elsewhere,” Lifson said.

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