Swaziland’s door-to-door HIV carers

Caring for the family, reducing stigma

(LWI) – When a Lutheran network of door-to-door carers of people living with HIV in Swaziland was started three years ago, its staff were ostracised in much the same way as the people they were supporting.

The Ezulwini HIV and AIDS Project is made up of four carers who go into the homes of people living with the illness and offer care.

“When we started the project three years ago, there was no love for us and we were rejected by most people in the community,” one of the carers, Ellen Dlamini, said. “The minute we opened our mouths to say we were there to talk about HIV, we would be shunned and shown the door.”

However the success of the program and the gradual change of attitude toward the disease has led to acceptance.

“Now we are welcomed and people speak freely to us about their condition and the struggles they face. We are helping each other to cope,” Dlamini said.

“HIV and AIDS used to be this very big secret that we all witnessed but no one spoke about but now we talk about it openly,” she said. 

High rate of infection

For its population, the rate of HIV infection in Swaziland is high – one of the highest in the world. UNAIDS says that in 2015 some 200,000 people of its 1.1 million were living with HIV.

According to the country’s emergency response council on HIV and AIDS, a quarter of 15–49 year olds live with HIV. In women, the prevalence is as high as 31 per cent compared to 20 per cent in men.

As a country steeped in culture and tradition, unhealthy practices stand in the way of progress. People living with disability often face blatant or subtle discrimination. Polygamy is accepted as normal. The burden of unpaid care still rests heavily on the shoulders of women. Child marriage remains an unacceptable social norm.

Bringing food, hygiene parcels – and gardening tools

However, a seed of hope has been planted by the Ezulwini carers, a group of self-sacrificing women who serve their community.  

Run by the Eastern Diocese of the Evangelical Lutheran Church in Southern Africa, a member of the Lutheran Communion in Southern Africa, the carers, trained by government nurses, serve vast stretches of Ezulwini, in the northwest of the country, visiting about 180 people combined at least three times a week.

Going door-to-door, they speak to all the families in their community about health. In doing so, they find out who needs their help and then refer them to the nearest clinic for testing and if necessary, treatment. They encourage everyone they visit to test for HIV and TB.

They provide families with food parcels and hygiene packs, teach primary carers how to tend their patients, and directly observe patients take medication. With a mobile clinic, people no longer have to travel great distances to get medical assistance or testing. ‘We even have the youth asking us about testing,” Dlamini said.

Another skill is taught: gardening. Thembisile Mncina, a carer, said, “We teach the affected families how to create back-yard gardens so that they are not solely dependent on food hand-outs but can eat fresh vegetables from their own labour.” Gardens ensure patients have the food that must accompany treatment.

Additionally, the women show the primary carers how to find moments to debrief and share their struggles.

Constant support

Although stigma and discrimination remain the greatest drivers of the HIV epidemic, the carers see increasing acceptance that people living with HIV can lead healthy lives, if the disease is managed well.

The project has also seen a great turn-around in treatment defaulters returning to medication and sticking to it.

“We are not facing any problems with adherence to treatment because where there is a primary carer in the home, she ensures that the medication is taken and in instances where there isn’t one, we ensure adherence ourselves,” carer Caroline Motsi said.

Their program to halt the prevention of mother to child transmission has claimed a success: most of the young orphans the clinic works with these days are HIV negative, said Motsi.

“The clinics that we refer people to ensure that all pregnant women are tested and as long as they adhere to the treatment during pregnancy, we are seeing fewer and fewer babies born with HIV.”

The project also realised that care for the growing numbers of HIV orphans and vulnerable children was critical, especially as more children found themselves heads of household.

Ntfombenhle Dlamini, 65, is a beneficiary of the project. HIV positive, she looks after four grandchildren aged four to 17, whose parents died of AIDS-related ailments.

She appreciates the “constant support” given by the carers - the food, the seeds and the care packets – but struggles to get water for her garden. Her grandchildren have to walk long distances to get water and carry it in buckets on their heads, she said.

Towards the Future

The Ezulwini community has made many strides and helped many people. The gardens have led to food security for the ill and the open conversations on HIV and AIDS have led to more people getting tested and starting treatment.

However, the end of funding by the church in favour of other pressing social issues, as well as poverty, drought and unemployment continue to haunt the project.

Until recently, the carers received a stipend of R500 ($40) a month. They continue to work without payment because they are committed to helping their people, walking several kilometres daily to reach the clients they have grown to love.

The people of Ezulwini are ready to tackle their challenges head-on but still need accompaniment and support. Every day, there are success stories of patients who were once bedridden but have now returned to work serve as towers of hope that help the community strive for a better, healthier future.

From a story by the Lutheran Church in Southern Africa.

The Lutheran church is represented at the International AIDS conference in Durban, South Africa, 18-22 July 2016:

Faith on the fast track