Connecting Families Affected by HIV with Care and Support

Every few months, Baron Ilunga makes a visit to a red-brick, cardboard-roofed house on the outskirts of Lubumbashi, a city in the southeastern corner of the Democratic Republic of the Congo (DRC). He is there to check on the health and well-being of the family of eight—a mother, a father, and six children—all of whom have tested positive for HIV.

Today, the mother greets him. Ilunga asks about the children first: Are they following their antiretroviral therapy (ART)? Have there been any difficulties? Do they feel well? And have they enrolled in school?

The children are taking their medication, the mother says. They are also enrolled in school now, and they are happy there.

“And how do you feel?” asks Ilunga.

“I am also strong,” is the mother’s reply.

In the DRC, an estimated 42,000 children are living with HIV. The epidemic has also left 391,000 HIV/AIDS-related orphans. But making sure these children and their caregivers have access to medical and social services that can help them has been difficult. Many HIV-affected families live in poverty, and there is tremendous stigma associated with the virus. In addition, many families simply do not know what services are available or how to access them.

So through the USAID-funded Enhancing Services and Linkages for Children Affected by HIV and AIDS (ELIKIA) project, EDC is taking an approach that is new for the DRC: using case managers, like Ilunga, to connect families with care.

“In the DRC, the stigma around HIV is significant, so people don’t disclose their status to others,” says EDC’s Jo Mushitu, a Congolese medical doctor who has long worked to prevent the spread of HIV in the DRC. “People turn inward. Being able to speak openly about the challenges of living with HIV, and having a person you trust help you figure out how to work through problems, can be the difference between finding successful ways to cope or falling deeper into vulnerability.”

Support for families

ELIKIA focuses on identifying HIV-positive orphans and vulnerable children and caregivers and linking them to facilities for treatment. Case managers from the DRC Department of Social Affairs and four local nongovernmental organizations are trained to deliver services such as home visiting, HIV risk assessment, referral for HIV testing, treatment adherence, and monitoring patients’ viral loads in collaboration with clinic staff.

Case managers also help households access services that support families’ overall well-being, including free school tuition for children, entrepreneurship classes for adults, and community-based savings and loan groups. They use ELIKIA’s tablet-based case management tools to track changes in household well-being over time.

EDC’s Alisha Keirstead, who directs ELIKIA, has seen firsthand the power of the ELIKIA approach. During a recent trip to Lubumbashi, she met an HIV-positive single mother who had been struggling to provide for herself and her three children through panhandling. After joining one of ELIKIA’s savings groups and attending entrepreneurship training sessions, she opened a roadside food stand and was able to earn $10 a week, which is above the Congo’s national poverty line of $1.25 per day.

“We are seeing major improvements in household well-being,” says Keirstead. “Nothing is guaranteed in a place like the DRC, where poverty and conflict are so pervasive, but these changes in habits are exactly the kinds of skills parents need in order to navigate difficulties and prioritize child welfare.”

For families, issues such as living with HIV, unemployment, and food insecurity only add to the struggles they already face. ELIKIA is working to address those challenges by improving their access to resources, such as education and protection from violence, abuse, and neglect.

“We’re hoping to give parents the building blocks to meet children’s needs,” says Keirstead.

Promoting hope and resilience

ELIKIA began by supporting 35 case managers in Lubumbashi, and the project recently added 30 case managers in the capital city of Kinshasa and the city of Kolwezi. Each case manager works with up to 60 households. In all, the program has reached over 15,000 people since it started in 2016.

The ultimate goal is to help families “graduate” from the program—meaning that they have built enough stability and resiliency so they no longer need ELIKIA services. And this is happening. Last year, 969 individuals graduated from ELIKIA.

Suzanne Reier, EDC’s chief of party in the DRC, says that before ELIKIA, the country’s social services struggled to reach families in need. ELIKIA has changed that, helping to connect marginalized families and children with people who care deeply about helping them.

“What’s impressive is that these case managers know these families inside and out,” she says. “They can tell you their whole story. They know everything about these families.”

There are still some hurdles to overcome, however. Poverty and stigma are deep-seated issues with no easy fixes. Reier recalls one case manager saying that she had been able to enroll a child in school for free, but that the child had not been attending school because she couldn’t afford a notebook. (The case manager ended up buying her one.)

For his part, Ilunga says that he has also encountered challenges, such as people not following their ART regimen. However, it’s in situations like these where case managers make a difference. Ilunga tries to help families in his caseload develop a plan for ensuring children’s health needs are met—such as providing coaching on child nutrition and the need to take ART with food—while also promoting hope and resilience.

“I encourage them to take the ARTs, to show them that they can live like everyone else, so they don’t get discouraged because of their situation and think that it is over for them,” he says. “When they take ARTs, they can live, work, and get along like everyone else. They shouldn’t get discouraged and withdraw from society. I try to encourage them—fortify them—so they can continue to be a part of society.”