Caring for HIV-infected people in South Africa requires love, patience and 200 litres of water per day

Updated - Wednesday 07 November 2007

Home-based caregivers provide critical support for people who are HIV infected and ill in South Africa as in many other countries. However, their role is made more difficult by limited water supplies and in some cases by inadequate toilets. Limits on water supply also compromise the impact of health and hygiene education and promotion carried out by community health workers.

As Christina Thwala, one of the home-based carers who makes house to house visits in Jeppe’s Reef said: “When water is not in the yard and comes at particular times only, it makes it very difficult for us to wash clothes, clean houses and bath our patients.”

Jeppe’s Reef is a peri-urban settlement in the fertile Nkomazi valley, in the Ehlanzeni district of Mpumalanga close to the Mozambique and Swaziland borders. Virginia Molose and Alana Potter from Mvula Trust interviewed home-based caregivers in this settlement of approximately 3,500 households and highlighted the centrality of water and sanitation to positive care, in a case study report:

Virginia Molose and Alana Potter, Mvula Trust (2007) Understanding the Links between AIDS, Water and Sanitation and Hygiene: Experiences from Jeppe’s Reef, Nkomazi LM, Mpumalanga

Experiences of those living with HIV/AIDS

I moved here to care for my son who is sick. We are just back from the doctor for stomach medicine. It cost me R50. We are not paying for water and there is plenty until 11 o clock in the morning. There is no food and we can’t grow food because the goats come and eat it (Thandi Mazibuzo).

I was too sick to get up until I got the medicine. Now you see me, I am well. Thandi has taught me food gardening and I eat spinach and beetroot with my mother and father. I need this food for the medicine. Now people are not so tired of me anymore because I am not so sick. The water for my garden comes from this pipe from that tap, but my toilet is full and we have a problem – how will I dig another one? So I use a bucket (Esther Ngosi).

Ten years of patient work

Members of four local Home-Based Care (HBC) groups visit households with HIV infected people three times a week in this community. The caregivers undertake a wide range of activities, including fetching water, bathing patients, washing, laundry, digging pits for solid waste disposal, cleaning households and yards, assistance with access to social, health and other services, and providing counselling, information and support.

The caregivers and their groups have worked patiently for years to encourage noticeably sick people to get tested and treated, and say that denial is still a big part of the problem, as some families try to struggle on without outside support. Rose Moyana said: “Most people know about it but don’t believe people are sick until they see it. Some are locked away and their families refuse care – they say no one is sick here.”

While accurate HIV infection statistics are not available in the area, in a random sample of 15 households visited, seven households contained people who were noticeably ill, or who were taking TB or antiretroviral (ARV) medication.

Jeppe’s Reef has four civil society HIV/AIDS Home-Based Care (HBC) groups:

  • Jeppe’s Reef (22 members)
  • uThando la MaKriste (11 members)
  • Nkosi Sikelela (80 members)
  • iThemba Lethu (250 members)

Bridgette Moyana, co-founder of the iThemba Lethu Home-Based Care group has worked in Jeppe’s Reef for more than ten years, and says that things are not getting better. “All I can say is that this area is dying and we are hardly scratching the surface – more than half the households we visit have someone who is sick, mostly young people. There is real starvation and hunger in Nkomazi.”

200 litres per day

HBC groups say that they need 200 litres of water a day to care properly for their patients – 75-100 litres for laundry and the rest for cooking, bathing and drinking. Water for bathing and laundry is disposed of in toilet pits rather than being used for other purposes as it is used for washing soiled clothing and bedding and contains disinfectants.

It is important for people with HIV to have access to clean toilets. Caregivers found that some models were more suitable than others. Sarah Baloyi said: “Spiral toilets are not good for households with sick people, as often we need to carry or accompany a person to the toilet because they are too weak to walk. The spiral toilet does not make it easy for two people to fit in it.” Her group was much happier with the VIP latrines that are also in use there.

Four faith-based groups

Most of the HBC groups are faith based. Moved by the impact of HIV/AIDS in their community, they underwent training in home-based care through the provincial Department of Health. They engaged other volunteers and worked for three years without funding, going from household to household caring for sick people and orphans. After many attempts to access government support, they received funding from the Project Support Association in 2001, and are now able to give caregivers a monthly stipend of R250.

However, the absence of a clear policy and selection criteria for paying incentives for home-based care is a major problem. While some home-based caregivers are paid a stipend of between R100 and R300 a month, others work entirely voluntarily.

See for more concept papers, training materials and case studies on the links between sanitation, hygiene, water and HIV/AIDS IRC’s Sanitation, water, hygiene and HIV/AIDS web page.

Alana Potter/Dick de Jong

Potter, A. and Clacherty, A. (2007). Water services and HIV/AIDS. Water, sanitation and health and hygiene education in the context of HIV/AIDS : a guide for local government councillors and officials responsible for water, sanitation and municipal health services. Pretoria, South Africa, Water Research Commission. (in print). http://www.irc.nl/page/36996

Contact: Alana Potter, e-mail

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