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Research Explores Interventions for HIV Medication Adherence Among Rwandan Youth

Youth leaders in the KIP program pose for a photo.
Geri Donenberg headshot.

Among sub-Saharan nations in Africa, Rwanda has achieved significant progress toward achieving epidemic control of HIV/AIDS.  In 2013, UNAIDS, a United Nations initiative, announced a campaign referred to as 90-90-90.  These goals targeted 90 percent of people knowing their HIV/AIDS status, 90 percent of infected people on antiretroviral therapy and 90 percent virally suppressed.  By 2015, Rwanda had achieved totals of 88, 83 and 86 percent in these respective areas.

Despite these successes, youth ages 15-24 across sub-Saharan Africa are experiencing rising infection rates.  AIDS-related deaths among youth have tripled since 2000, and AIDS remains the leading cause of death among adolescents.  With the adolescent population worldwide expected to grow, viral suppression in this group is essential to avoid HIV resistant mutations, virologic failure and future HIV transmission.

Adolescents living with HIV suffer high rates of mental health symptoms, especially depression and trauma. In Rwanda these symptoms are associated in part with the country’s legacy of the genocide.  Across populations, mental health concerns are linked to low antiretroviral adherence, critical to sustain viral suppression and prevent onward transmission.

Geri Donenberg, PhD, associate dean for research at the University of Illinois at Chicago (UIC) School of Public Health from 2012-2018, served as the a principal investigator with Drs. Mardge Cohen and Sabin Nsanzimana for the Kigali Imbereheza Project, a randomized controlled trial based in Kigali, Rwanda that sought to test an adherence-enhanced, developmentally appropriate, culturally adapted trauma informed cognitive behavioral intervention (TI-CBTe) on antiretroviral therapy adherence among Rwandan youth living with HIV.

Donenberg is currently a professor of medicine and psychology and the director of the Center for Dissemination and Implementation Science at UIC.  The project was an effort of the School’s Community Outreach Intervention Projects.

Despite the existence of life-saving medications to treat HIV, adolescents often fail to remain adherent to their medication.  While a number of factors contribute to poor medication adherence, mental health concerns are at the forefront and must be addressed to achieve better adherence and reduce poor health outcomes.

Geri Donenberg, PhD  |  Director, UIC Center for Dissemination and Implementation Science

Funded by the National Institutes of Health’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (R01HD074977), the project’s preparation phase began with interviews with young adults and adolescents in programming at Women’s Equity in Access to Care and Treatment, an international community-based HIV/AIDS initiative, and University Teaching Hospital of Kigali, to query barriers and facilitators of antiretroviral adherence.  These interviews identified similar reasons for non-adherence, including fear of disclosure and accompanying stigma, logistical barriers (too many pills, forgot), hopelessness about the future, and lack of caregiver support.

Based on these interviews, the investigators developed a group-based intervention for 14-21-year-olds living with HIV.  Drawing on an indigenous leader outreach model, the team trained young adults 22 – 25 years old also living with HIV to deliver the six-session intervention to their younger peers. This experimental condition was compared to usual care in terms of improved antiretroviral adherence and mental health.  The intervention addressed knowledge about HIV, safer sex practices, stigma, gender-based violence, trauma, cognitive behavioral strategies that promote learning connections between thoughts, feelings and behaviors, and problem-solving skills to resolve adherence obstacles.

With careful training, young adults can learn to deliver a relatively complex trauma-informed cognitive behavioral intervention with fidelity as long as supervision and support is in place,” Donenberg said. “This is critical to enhance the capacity of these low resource settings to deliver much needed programs for youth living with HIV.”

Among the 350 youth participants, 82 percent reported at least one traumatic event in their lifetime and 60 percent reported two or more events.  Recruitment and attendance were strong, with 86 percent of interested adolescents enrolling and 76 percent attending all six sessions.  Youth leaders reported considerable benefits from participating in the study and learning to deliver the intervention, including new leadership skills, comfort leading groups, improved mental health, and greater future job prospects.  Clinics provided strong support for intervention activities, assisting with logistics and adjusting programming to accommodate activities.

“A wonderful unintended consequence of the study was that the young adults who were trained to deliver the program reported significant positive benefits for themselves and their loved ones,” Donenberg said. “This speaks to the power of giving people skills and hope for the future.”

The intervention is now being adapted for four African countries (South Africa, Botswana, Malawi, and Zimbabwe) with support from the International Maternal Adolescent and Pediatric Clinical Trials Network. Once adaptations are complete, the program will be evaluated in a two-arm randomized controlled trial for youth with elevated mental health problems who are living with HIV.