‘You won’t find a child born with HIV in this village’: headman

Travelling around Nyandeni, a local municipality in the OR Tambo district in the Eastern Cape, is a bumpy ride. Here, like in almost the whole province, roads are mostly untarred. 

To get to a clinic, people have to either walk about 20km or take a guruguru (a bakkie that operates as a taxi), which travels to the health facility at 5am and back again at 5pm to take them home.

OR Tambo, which spans an area of about 12,140km² and has Port St Johns on the Wild Coast about halfway between its southern and northern borders, is deeply rural — and one of the poorest districts in South Africa. About 90% of people here live in so-called last-mile communities — villages and informal settlements that are far from services like electricity, piped water and healthcare.

On the gravel roads of Nyandeni, you’re bound to see women like Nosizwe Peter, 58, walking in their bright green T-shirts.

Peter is one of 40 mentor mothers in OR Tambo, lay health workers employed by One to One (OTO) Africa, which is a nonprofit organisation that provides maternal and child health services in rural communities.

But mentor mothers are different from community health workers employed by the health department — because they focus only on pregnant women and new moms who, like they, are HIV positive.

The idea behind this peer-support model, which has successfully been rolled out elsewhere in Africa, such as in Malawi and Democratic Republic of the Congo, is that because the mentors themselves have HIV, they understand the issues these new mothers grapple with and, in turn, clients feel more comfortable getting health advice from them. 

Could a programme like this help moms, in a district where just over a third of pregnant women are HIV positive, stay healthy — and raise healthy children too?

We travel with some of these mentors to see how the system works. 

Twins, a mentor mother and a scale

When Peter arrives at a rondavel in KwaDontsa, a village set among the slopes of velvet-green hills, she greets 21-year-old Aphiwe Tyhontsi, a mother of twins, warmly. 

The two girls, Alizwa and Aliziwe, are 11 months old, content while feeding at their mother’s breast. 

Peter praises Tyhontsi for breastfeeding then asks her for their clinic cards. 

Breast milk is the best food for infants from birth to six months, because it’s nutritious, easy to digest and contains antibodies that help protect babies against stomach bugs and ear infections. 

She pulls a scale out of her OTO-branded backpack, sets it on the ground and asks Tyhontsi to stand on it. 

Peter notes down her weight.

Soon one of the girls stretches out her little arms, motioning that she wants to be picked up. Tyhontsi heeds and steps onto the scale once more. After Peter has written down their combined weight, it’s her sister’s turn. 

Peter smiles as she looks at the reading on the scale.

Both girls, who weighed less than 2.5kg at birth and which can be a sign of development problems, are now just over 9kg — right on target for a healthy weight at this age and showing that they’re growing well.

Then Peter looks at the girls’ clinic cards and says: “If there’s a measles outbreak your babies are at risk.” 

Why pregnancy checks and childhood shots are important

The first thing mentor mothers do is to help HIV-positive pregnant women understand why it’s important to start antiretroviral (ARV) treatment — and stick to it. Research shows that if soon-to-be moms aren’t taking their anti-HIV medication, they could pass on the infection to their babies in up to 45% of cases.

But apart from that, these peer-support health workers also give women advice on staying healthy during pregnancy, tips on breastfeeding and nutritious foods, go with them to check-ups at clinics, and check that their babies are growing well and get their vaccinations on time. 

Mentors, who get six weeks of training, are recruited from the local area with the help of the chiefs and headmen of the villages — an important part of getting people to accept the programme, given the power these leaders have in their communities. 

Though Alizwa and Aliziwe have had their first doses of measles vaccine when they were six months old, they’re due for the final jab within the next month, by the time they’ll turn one. 

Check-ins like this can go a long way to boost childhood immunisation coverage in the district, which sat at only about 75% in 2022/23, well below both the national and provincial average of around 82%. (If enough children in a community aren’t vaccinated against diseases  such as polio, measles or diphtheria, infections can spread easily and quickly lead to a wide outbreak.)

With difficult access to clinics because of poor infrastructure and the rural nature of areas, last-mile communities often lag behind when it comes to things like antenatal clinic visits and childhood immunisations. Indeed, OR Tambo is one of the worst performing districts in the country when it comes to kids getting their shots.

‘Sometimes the mobile clinic doesn’t come’

For this reason, the mentor mothers programme also has a mobile clinic, where “all of our services come together”, says Emma Chademana, programmes director at OTO Africa.

The truck, which stops at a different village each day, is on its way to Lucingweni today, about 80km southeast of Mthatha. 

Up on the hill on the other side of the bridge that crosses over the Mtakatyi River, waits the pregnant Carmel Vice, 32, with her toddler son. Vice, a teacher at a local school, isn’t at work today because she and her son have been feeling sick for a while, but she hasn’t had money for transport to one of the local clinics. 

Since 2000, the government has been sending a mobile clinic to Lucingweni once a month, “but sometimes it doesn’t come”, says Aaron Makhabola, headman of the village. But with OTO’s clinic-on-wheels being recognised by the provincial health department as a stand-alone facility, people are sure that they’ll be able to get medical care at least once every month. 

This is good news for someone like Vice, who can get her pregnancy check-ups at the truck instead of having to travel to the government clinic — or having to forgo a visit if she can’t get the money together.

Research shows that when women have regular check-ups during their pregnancy, there’s a lower chance of their babies dying shortly after birth. 

Early newborn deaths are particularly worrying in OR Tambo, where nearly 13 out of every 1,000 babies born in a hospital or clinic die in their first seven days of life. Compared with the national rate of just under 10 per 1,000, the district’s figure makes it one of the worst performers in the country for this indicator.

Why it’s important to work with the health department 

OTO works closely with the health department, says Chademana. Their mobile clinic offers the same services as what’s available in a state clinic, such as check-ups for patients with diabetes or high blood pressure, pregnancy care and teaching people about living healthy. 

Moreover, the app mentor mothers use to track their client visits is developed by the same company that made the government’s one for community health workers, and when they write a referral for someone to be treated at a hospital, the form shows the health department’s stamp, says Chademana.

“The relationship with the [health] department is critical. We can’t offer services that don’t exist in their system because who will service those clients [if] we leave? It’s important that we work to strengthen the existing system.”

To help with this, OTO has trained 27 of the government-employed community health workers in Nyandeni to support pregnant women or new moms in the same way as mentor mothers do. Two of these are at Buchele Clinic in Lusikisiki, which has to look after more than 8,400 people in the surrounding villages.

With the extra training, these community workers help with more than just making sure HIV-positive moms stay on treatment — they also track their babies’ growth; give shots for vitamin A (which is important for a strong immune system and keeping cells healthy but often lacks in the diet of children growing up in poor households); and help families with eating healthy and getting social support. 

“Before I would just give a child deworming and check their card to see if they’ve been to the clinic. But now I can do more things, like give education on nutrition and take their blood pressure,” says Bukiwe Mpaceka, a community health worker who adopts the mentor mother model.

“If I come into a house and see that there are no vegetables, I advise [the family] on the importance of planting these for nutrition,” she adds. 

OR Tambo is especially hard hit by food insecurity. In 2022, the district had the most deaths and hospital admissions of children under five in the province because they have too little to eat in critical development periods and become very thin (a condition called severe acute malnutrition). 

Moreover, not having a good balance of nutrients like vitamins, minerals and proteins at a young age can lead to children’s brains not developing well, which makes it hard to concentrate or do thinking tasks like understanding stepwise instructions, and can up the chance for health problems like obesity and diabetes later in life.

First-hand change

Peer support for pregnant HIV-positive women by moms who also have HIV has been shown to work really well. 

In Nigeria, around 1.2-million women and girls older than 14 have HIV but only a third of those who are pregnant are on treatment to prevent the virus from being passed on to their babies. A study found that women from rural areas who got advice from mentor mothers were almost five times more likely to have stuck to their treatment so well that they were virally suppressed six months after giving birth than those who had help from only general community health workers.

Also in KwaZulu-Natal, more pregnant women who had support from mentor mothers started taking ARVs than those without such backing. Moreover, women in the programme knew more about how to prevent their babies from getting infected and were also more likely to know their CD4 count. 

But the impact of this support model doesn’t exist on paper alone; communities see the change first hand.

Says headman Sigcau of the Mankosi village: “You won’t find a child born with HIV or malnourished in this village — because of the mentor mothers.” 

• Zano Kunene is a health journalist at Bhekisisa

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.