Danielle Vella

The home-based care (HBC) centre of Chikuni parish in southern Zambia is a hive of activity. In this remote rural area, thriving enterprises are lined up in the neat compound: a restaurant, a bakery, a shop, a tailoring workshop, a poultry run, a vegetable garden and machines for the solar drying of seeds, fruit and vegetables.

Every day, a team of caregivers runs the show, and their hard work pays off. “The bakery is going well. We make about 800 buns every day and sell them all,” says Mwando, a young man who deftly kneads dough as he talks to me.

At the tailoring workshop, a team of eight women joke and laugh as they prepare 500 ‘Christmas bags’ for an order from Italy, “our best market”. The bags are sewn according to one of many set patterns, with local textiles alive with vibrant colours and dynamic patterns.

Chileleko shop, which opened five years ago, is a sure hit: people love it and buy all sorts of things there: top-up for their mobile phones, cereal, detergents, bulbs, biscuits, peanut butter, you name it…

Caregivers running IGAs?

All this might sound just a bit puzzling at first: why are caregivers – who after all are supposed to visit and care for people with HIV – busy running income-generating activities (IGAs) instead?

Part of the answer can be summed up in one word: self-reliance, both for the caregivers and for the HBC program. Many of the caregivers, especially women, were badly off after giving voluntary service to the HBC for years. So in 2008 the program generated IGAs to help them, splitting the profits between the caregivers and the HBC itself, to help meet the needs of people with HIV.

“I like the HBC because it protects people and helps for positive living,” said Mwando, voicing sentiments echoed by all the caregivers. “What’s more, we get an income to sustain our lives. My family has benefited much from this.”

The changing role of caregivers

Another reason why caregivers can now devote themselves more to IGAs may be the changing world of people living with HIV. In the years when AIDS was a sure death sentence, when hospitals were full to overflowing, the caregivers worked overtime to look after countless people with AIDS in their homes.

Doubt, who is responsible for the poultry run, remembers he joined the HBC when “HIV-positive people were neglected by others, who ran away from them”. He says: “I was one of those who used to run away, then I came here to the parish for workshops, and I learned that you don’t get HIV just by touching someone who has it, or by sharing a spoon. Then I understood. I volunteered to be a caregiver when people started dying of AIDS. It helped me educate my relatives, my children and the community.”

Thankfully the scenario is different now: most of those with HIV who receive life-saving antiretroviral treatment (ART) no longer need much nursing care because they are healthy and up and about. As their needs have changed, so too has the role of the caregivers.

“I have been a caregiver since 1995. Now the job is easier. Before it was nursing, now it’s about adherence to ART and counselling,” said Regis Haachipola, who works in the tailoring workshop.

Positive living & adhering to treatment

Today, encouraging people to live positively and responsibly with HIV is seen by the caregivers as being their top task. “People with HIV still need a lot of support. Some are mentally disturbed, others feel better because they are on antiretroviral drugs (ARVs) so they backslide, going back to drinking, unprotected sex and unsafe traditional customs,” said Doubt.

Helping people with HIV to stick to their treatment regimen, taking medications correctly according to prescription, is crucial. Lack of adherence to ART hinges on many factors, not least side effects; hunger; the fear of stigma; the money, distance and time needed to go to the clinic and false beliefs about ART. A recent study in nearby Livingstone found that more than half of the patients interviewed held at least one false belief about the effectiveness and side effects of ART or the consequences of not adhering to this treatment. One common false belief, which the Chikuni caregivers have come across, is that local herbs given by traditional healers can replace ARVs.

Another problem is illiteracy: some people cannot read the names and instructions of their medicines. So if the colour of the pill or look of the container changes, people are confused. And it’s not only people with HIV who need support: family members who look after them often have little knowledge about the disease and about ARVs.

Stigma remains a persistent problem. Regis said: “There are some people who are bedridden. It’s mostly an issue of stigma especially self-stigma. People still hide themselves away, especially those who are more educated. Some don’t take ARVs, others take but don’t understand the virus well because they don’t come to groups for social and spiritual support, they isolate themselves and create problems for themselves.”

The HBC caregivers tackle these challenges by visiting people living with HIV and their families at home to offer individual support and advice, by organising workshops on treatment literacy and how to live with HIV as a chronic disease, and by offering palliative care when necessary.

A spirit of solidarity

So the caregivers still have their hands full. They are very happy doing what they do, reaching out to others in need of help and at the same time earning an income to sustain their families and their mission. When I came away from my morning with them, my overriding feeling was that I was taking something valuable with me: their witness of profound Christian solidarity. Mwando summed it up: “When we saw HIV was in the community, we volunteered to assist, so people could have a better life. We are people of God and when people suffer, we cannot just sit back and let them suffer.”