Camaraderie is as important to pregnant and breastfeeding people all over the world as the quality healthcare. Comparing morning sickness or baby-bumps and communing over all the surprises and joys of pregnancy is universal. That camaraderie is even more important with a difficult pregnancy, and in the case of the Mentor Mothers of Burundi, it is lifesaving.
Pregnant and breastfeeding people living with HIV are at risk of poor health outcomes for themselves and their infants if they do not receive life saving antiretroviral treatment. In addition to the risk of disease progression for pregnant and breastfeeding women themselves, the risk of transmission of HIV to infants is high during pregnancy, childbirth, and breastfeeding. Infants born with HIV are at risk of early death if they do not receive prompt diagnosis and treatment. This is where the Reaching Impact, Saturation and Epidemic Control (RISE) project (funded by PEPFAR through the US Agency for International Development) stepped in to help introduce the Mentor Mothers program in Burundi, working in close partnership with the Burundi Ministry of Health and National AIDS Control Program (PNLS).
“The first time I learned about the Mentor Mothers program dates back to January 2022 when I was recruited by the nurse at the antenatal clinic at Marembo Health Center to participate in the training of Mentor Mothers. I was recruited because of the good and successful experience I had as a recipient of prevention services for mother-to-child transmission. I readily accepted the proposition and joined others in the training,” said Sandrine Uwimana, 35-year old Mentor Mother at Marembo Heath Center. “There is nothing more powerful than seeing the good results of our deeds. At the beginning I [approached patients] timidly because I was afraid. Today I am self-confident and very encouraged.”
The Mentor Mothers program was launched in January 2022, at eight RISE-supported sites across seven provinces in Burundi, each with an on-going focus on prevention of vertical transmission of HIV. Initially, twenty-five mentor mothers were trained, along with a supervisor at each site. Mentor Mothers are mothers living with HIV who have been trained to provide adherence and psychosocial support to pregnant and breastfeeding persons living with HIV. Additionally, they perform tracing for women who interrupt treatment and provide health education. At the beginning, 68% (225/333) of pregnant and breastfeeding people (PBFP) living with HIV and receiving antenatal care at the eight health facilities in Cankuzo, Gitega, Karusi, Kirundo, Muyinga, Ngozi and Ruyigi provinces, were enrolled in the program.
Where Sandrine works in Marembo, many women live in rural areas with no phones, a great distance from the health facility. RISE-Burundi provides the mentors in Marembo and other supported sites with travel stipends to enable them to visit rural mothers, where they provide ART adherence and counseling support, and deliver life-saving medications to those who are unable to pick up their drugs from the health facility. “Currently, I work with 6 mothers including 2 pregnant women. Since the beginning of the program, I have supported 9 mothers [who are living with HIV] and 3 of them already had their infant tested HIV-negative at 18 months,” said Sandrine.
“A good moment that deeply marked me, began with a routine home visit to a pregnant woman named Zèle. She was married with 4 children. Both she and her husband were living with HIV and on antiretroviral therapy (ART). The eldest child was also living with HIV, since he was born before Zèle’s HIV status was known. Zèle and her 12-year-old son had difficulty adhering to their antiretroviral treatment and were frequently sick. The young adolescent didn’t want to take medication that his brothers didn’t have to take, and he did not yet know his HIV status. He was very confused and Zèle worried about his health and that of the unborn baby. I helped them to get to the health facility for clinical check-up and for psychosocial support.
“As her Mentor Mother, and while maintaining contact with the health worker, I supported the family at home to enhance antiretroviral adherence. I shared my personal experience with her, how my first child was born with HIV because I did not know my status at the time, but now I have three HIV-negative children. This helped Zele and her family to trust me. Zèle and I told her son his HIV status. Now he understands why he has to take antiretrovirals every day. With the continuous support from his mother, health worker and myself, both the child and his mother are more adherent to treatment. Three months later both Zele and her son have an undetectable viral load. Today Zèle’s eldest child continues to adhere to antiretroviral treatment and no longer needs to be supervised for taking medication or be accompanied to get his refill at the health facility.
“As a Mentor Mother, this is an event I cannot forget because the mother and the child were going to die from HIV. But now they are healthy and continue correctly taking their treatment,” said Sandrine, sharing that this experience heightened her commitment to keep working as a Mentor Mother.
Zèle observed of her time being mentored by Sandrine that, “since I started taking my medications correctly, I feel healthy and my son too. My husband is also more adherent to his medication and together we have been able to work to support our family. For the moment, we look forward to seeing our baby being HIV-free.
“The good job [Sandrine] did for my family will not be fruitless. I will share it with other mothers to prevent many children from being infected by HIV.” According to Sandrine and her supervisor, Zèle is doing just that, sensitizing other pregnant women with HIV on the importance of early HIV testing and good adherence to antenatal and HIV care to birth HIV-free babies. Zèle herself gave birth to a healthy child, now 10 months old, who tested negative for HIV at 6 weeks and 9 months.
After the initial rollout of Mentor Mothers support, the mentors themselves identified low literacy as a barrier to getting key messages on preventing HIV transmission to so many of the pregnant people and families they support. The mentors suggested having hand cards with pictures to help them deliver key messages on different topics more easily. RISE-Burundi brought together Mentor Mothers, nurse supervisors, HIV district focal points, and other implementing partners working with youth living with HIV for a workshop to collaboratively design hand cards to convey key messages to lower-literacy populations. Currently, the job aids are being finalized and messages are being translated into French and Kirundi.
Even before this counseling hand card is in place, the Mentor Mothers have seen huge returns on their work with other pregnant mothers. By the end of September 2022, 94% (309/329) PBFP were supported by the Mentor Mothers at the 8 facilities. In September 2022, the program expanded to 25 health facilities in seven provinces, when 59 additional Mentor Mothers were trained.
This program illustrates how health systems are strengthened when person-centered, quality care is offered beyond health facilities. Before the RISE-supported Mentor Mothers program, there was no community follow up for pregnant and breastfeeding women living with HIV in most of the RISE supported districts. The Mentor Mothers supported by RISE-Burundi are helping to ensure that person-centered, high-quality HIV prevention and treatment services meet the specific needs and preferences of pregnant and breastfeeding people, their families, and communities in Burundi.
