In South Sudan, Mothers Help Mothers Cope with the Challenges of HIV

In South Sudan—a country in which civil unrest and widespread famine have left many without access to health care or food—mother-to-mother support groups are helping prevent the spread of HIV while providing HIV-positive women with the emotional and social support they need.

South Sudan is the world’s newest country. Its economy and health systems have struggled to recover from the 22-year civil war that ended in 2005 with the signing of the Comprehensive Peace Agreement and resulted in South Sudan’s independence from Sudan. Violence during the past year has led to cholera outbreaks, food shortages, and widespread malnutrition.

It has also weakened the country’s already-fragile health system.

Since 2005, IntraHealth International has worked in South Sudan to address HIV in the country’s military and in local communities. Now we’re helping HIV-positive women to come together and support one another in preventing the spread of the virus from mothers to their infants.

IntraHealth works with five health facilities in central and eastern Equatoria to integrate services that prevent mother-to-child HIV transmission. Together with our partners Save the Children (formerly Merlin) and St. Bakhita Health Centre, we’ve established two support groups—both headed by local women who are strong leaders and mothers living with HIV—to provide women with a safe setting in which to gather and talk with others who understand what they’re going through.

“Most women interpret a positive HIV test as a death sentence,” says Anne Kinuthia, IntraHealth’s country director in South Sudan. “Many fear they will be abandoned or suffer violence from their husbands if they disclose their status. As a result, many become isolated. A strong support group made up of other women experiencing the same issues can make all the difference in how they care for themselves and their families.”

South Sudan’s HIV prevalence rate among adults is 2.2%. Over half of those infected are women, and various cultural factors and a struggling health system can make life particularly difficult for them.

Women are not generally empowered within their families or communities in South Sudan, and an HIV-positive status carries a heavy stigma. On top of that, health services that are well-equipped, appropriately staffed, and culturally sensitive are difficult to come by.

As a result, many women to suffer alone, confused and afraid.

Mentor Mothers

Kinuthia and her team—building on lessons learned through IntraHealth’s mother-to-mother support groups in Ethiopia and South Africa—established the support groups as a key intervention in IntraHealth’s wider efforts to support South Sudan’s HIV prevention, care, and treatment efforts.

The group leaders, called mentor mothers, serve as peer mentors and educators. The 22 trained mentor mothers play a key role in helping other mothers and pregnant women stay connected to health services, adhere to their antiretroviral therapies, and feed their infants in ways that will lower the babies’ chances of contracting HIV.

They also help HIV-positive mothers find their way out of the initial depression and sadness that may come with the diagnosis and assure them that with care and treatment, they can live positive, productive lives.

“Positive living can be challenging,” says a woman named Lawa, who found her way to the mother-to-mother support groups at a time when she felt very alone.

Lawa’s husband and his family abandoned her when she was diagnosed during her pregnancy. Heartbroken, she stopped eating or talking to anyone. She felt depressed and useless, and didn’t want to leave her home. A midwife at Nimule Hospital steered her toward the support groups.

“You worry about transmitting the infection to your child,” Lawa says. “You fear that you will die before they grow up. And worst of all is the rejection from the people whose support you needed most. But you always find comfort in the wisdom of another who also found it hard to live without your support!”

Eighteen months later, thanks to Nimule’s health workers and encouragement from Lawa’s support group, Lawa’s baby is healthy—and HIV-negative. Lawa is now a mentor mother, too. She works with her group to combat the stigma she and other HIV-positive women face in their community.

Support Group Successes

Mentor mothers routinely follow up with new mothers who’ve just given birth to make sure they and their infants are healthy. And mentors also manage savings-and-loans programs for group members, designed to empower the women and help them to become self-sufficient. A total of 34 women are now participating in these microfinancing initiatives.

The mentor mothers work hard to reduce HIV stigma within their communities. They share their own stories through radio talk shows and other outreach efforts, educate the public, and spread the word that HIV-positive women make valuable contributions to the well-being of their families and communities. They also share information about the importance of HIV testing, counselling, and treatment services.

Nurses within the health facilities offer support to the mentor mothers and link the groups back to their facilities’ clinics, ensuring greater access to the services group members need.

The mother-to-mother support groups have been operating since 2010. (They were launched in Southern Sudan prior to the birth of the new nation, South Sudan, in July 2011.) Thanks to the groups’ efforts, 257 mothers living HIV have sought and received HIV medications and psychosocial care at Nimule Hospital, which serves a population of almost 170,000. And 148 mothers living with HIV have regularly attended peer-mentoring sessions.

One challenge in South Sudan and throughout Africa is that many more women seek HIV testing— primarily through antenatal screening—than do men. But the support groups are helping to change that by encouraging more couples to seek testing and counseling together. Between July and September 2013, for example, 270 couples at St. Bakhita Health Centre and Nimule Hospital sought testing together. Between October and December 2013, the number rose to 447.

“The mother-to-mother support groups have made tremendous progress in their communities,” Kinuthia says. “But the groups face several challenges. There are limited funds for their income-generating activities. There is not enough space set aside for the mentor mothers to work at the facilities. And the transition process—through which mothers and infants are assessed and then entered into programs that provide lifesaving antiretroviral therapies—could be improved. But we’re working together to help them address those challenges, creatively and efficiently.”

IntraHealth’s work in South Sudan is funded by the US Centers for Disease Control and Prevention. The mother-to-mother support groups are associated with Nimule Hospital and St. Bakhita Health Centre in Equatoria. Our partners in this work include Merlin (now Save the Children) and St. Bakhita Health Centre.

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