Living With Hope While Living With HIV

When Ismail Shekibula counseled people living with HIV at Tanzania’s Kilimanjaro Christian Medical Centre (KCMC) in the late 2010s, they often said coping with the multilayered physical and social challenges of the disease left them feeling hopeless. 

“As a counselor I met patients who would cry, wishing they hadn’t received their HIV diagnosis,” says Shekibula, who graduated from DGHI’s Master of Science in Global Health program in 2024. “I’ve met people who don’t have the disease but said they would kill themselves if they tested positive.”

Such interactions are a reminder that, despite the remarkable progress in treating and managing HIV, living with the disease can still exact a heavy burden on mental health. In Tanzania, which has only a handful of specialists trained in mental health to serve its more than 65 million residents, people often lack access to care for depression or other issues related to their HIV status. Suicide rates in the country have been rising since 2018, particularly among people with HIV, according to the World Health Organization.

But a new approach using telehealth could offer promise. The intervention, called IDEAS for Hope, connects people living with HIV with nurses trained to provide counseling and support via WhatsApp. During a pilot trial in 2023 involving 60 HIV patients in Tanzania, participants reported reductions in suicidal thinking, and none of the patients attempted suicide. 

People in the study also showed better adherence with their antiretroviral medications, which must be taken consistently to keep HIV suppressed and prevent transmission. The encouraging results show the interconnectedness of physical and mental health, explains Brandon Knettel, Ph.D., associate director for DGHI’s Center for Global Mental Health, who led the study with colleagues at KCMC.

“When someone is experiencing profound depression and suicidal thoughts, it can be hard prioritizing clinic visits and taking medication,” says Knettel. “We need to treat the whole person, and mental health has to be at the forefront of that.” 

The intervention focuses on four key areas: maintaining health while living with HIV, managing HIV stigma, seeking social support, and active problem solving. Participants discussed sources of stress and anxiety that often went well beyond their concerns about health and HIV management, Knettel says.

“They talked about not being able to pay for food, housing or their child’s school fees,” says Knettel, a licensed psychologist. “And if a mother transmits HIV to her baby, it comes with a huge emotional burden and shame that may lead to suicidal thinking.” 

Shekibula, who served as the study’s clinical research coordinator, says people in Tanzania may have to travel eight to 10 hours to reach a facility that offers mental health care. Those that do offer services often focus on treatment for conditions such as schizophrenia and offer little in the way of suicide prevention, he says. 

“This highlights the critical need to decentralize mental health services and integrate them into primary health care settings, and to reduce the burden on patients and families and improve early access to care,” says Shekibula, whose master’s degree thesis focused on suicidal ideation among people living with HIV.

The pilot trial was supported by a grant from the National Institutes of Health. The researchers had hoped to expand the intervention to at least 12 HIV clinics across the Kilimanjaro region, but funding for that step remains uncertain in the wake of significant reductions to both U.S. foreign aid and NIH research funding. 

“We are apprehensive,” Knettel says about the likelihood of additional funding. “The current administration is so focused on cost-cutting that it’s missing the true benefits of this kind of research – both humanitarian and economic – not just for people abroad but for the U.S. as well.” 

Shekibula, who was born in Tanzania, has an even simpler reason for wanting to see the project continue. 

“I want my people to live a healthy life,” he says. “That’s why I’m dedicated to this issue, even if it serves just one person.”