PANOS London: 10 July 1996.

But home based care is controversial. There are substantial benefits to caring for people at home - it can be cheaper, many patients prefer being at home to being in hospital, and caring for people with AIDS in the community can be a powerful way to breakdown prejudice and to inform and educate people about HIV and AIDS. But there are major criticisms too - home based care can simply be an excuse for governments to opt out of caring for people with AIDS altogether, many people with AIDS in the community are not looked after and die from neglect or are actively discriminated against, and there are questions about how well co-ordinated, how cost-effective and how sustainable such programmes are. This information sheet outlines briefly the arguments both for and against providing care at home for people with AIDS.

The arguments for home-based care

The arguments for home based care are powerful. Hospitals in many countries are simply not coping. In most countries in East, Central and Southern Africa, for example, over 50% of hospital beds are currently occupied by people with HIV and AIDS. In Zambia, over half of hospital patients and 70% of hospital patients with tuberculosis are HIV positive. And the situation is getting much worse. Zambia expects a 15% annual increase in demand for hospital beds for people with HIV/AIDS, while the actual number of beds available is expected to remain constant.

And while hospital in-patient care is the most expensive way of providing care to people with AIDS, many people with AIDS require acute hospital care for only 10 per cent of the period of their illness. In Barbados, one study found that over 40% of people hospitalised with HIV or AIDS had no valid medical reason to be in a hospital.

At the same time, funding for health care in developing countries is being cut back by structural adjustment programmes.

Initiatives in Zambia pioneered the first home-based care programmes. In 1987, nearly 90% of AIDS patients at Zambia's Chikankata Hospital said they would prefer to be at home and the hospital arranged for teams of health workers to visit their homes once a month, covering an area within a radius of 80km around the hospital. The programme aimed to assess AIDS patients at home for physical, psychological, social and spiritual needs, and to provide for these needs where possible. It also sought to trace the sexual partners of the patients. Counselling and education about AIDS was begun within the patients' families and communities. A key step was to encourage acceptance of AIDS patients in the community and to stress that HIV is not transmitted by ordinary household contact such as sharing a cup or touching.

The kind of support provided by home based care programmes varies. Programmes use their own approaches and set their own goals. In some programmes, for example, a home-visiting 'team' consisting of a nurse and a driver will deliver medication and treatment for diarrhoea, tuberculosis, abscesses and other AIDS related illnesses. Advice is also given on diet, drugs, hygiene and first aid.

Some have 'drop-in' centres for patients living near enough to the hospital to be able to attend. Other teams may place more emphasis on counselling and education. Such teams may employ a social worker or a priest who provides counselling to the family and AIDS education to the whole community. Some programmes train local volunteers so that the burden of caring for AIDS patients may be shared with other families in the community. This also helps overcome the fear that surrounds the disease.

Home-based care can save hospitals money. In one Zambian study, each home visit cost US$2.00 compared with an average daily costs in hospital of over US$4.00.

And many AIDS patients who stay at home derive benefits from being in a familiar and caring environment; they are happier, suffer less from pain and live longer. Having the patient at home may sometimes be easier for carers too. Many hospitals, particularly in Africa, do not provide food or other basic support to their patients, and rely on relations to prepare and cook food and to wash and change bedding.

And many argue that integrating people with AIDS into the community is one of the most effective forms of confronting discrimination and educating people about HIV and AIDS.

The problems with home-based-care

One of the most serious concerns about home-based care initiatives is that they can provide an excuse for governments to opt out of providing care for AIDS patients. Many home based care organisers insist that they can only function if they are seen as being a supplement to state medical provision, not a replacement for it. "Sometimes we just have to take patients into the hospital, sneak out and leave them there," says one South African home based care organiser. "I know it sounds terrible but it can be the only way to make sure that the State continues to take some responsibility for them."

Dr. Samuel Kalibala of the United Nations AIDS Programme says that "patients should not simply be thrown out of hospitals." He argues that while still in hospital they and their relatives must be told that they are living with HIV. The family must then be instructed in how to care for the person with AIDS before they leave the hospital.

Some critics have also cast doubts on the cost-effectiveness of home-visiting teams. Added costs include transport and allowances for staff and the time that relatives lose from work while caring for patients in the home. In one programme in South Africa, it was found that teams spent over a third of their time in vehicles driving between patients. Another third was spent on planning, meetings and administration.

And questions have been raised about the sustainability of home based care programmes. Many home based care programmes are funded by Northern based governments or NGOs - the German government agency, GTZ, the US Agency for International Development (USAID) and the Catholic NGO, CAFOD are all particularly focused on funding home based care programmes. There is a danger that, without more support from developing country governments, many programmes dependent on donor financing many collapse if this support is withdrawn.

There are also concerns on the added burden that home based care can place on families. Most carers of people with AIDS are women, typically an older woman or a teenage girl. The strain on these individual carers may overwhelm them. One study in Uganda (not involving an organised care programme) found that, of 30 AIDS patients, thirteen were being looked after by just one carer. For a man this was usually his wife; for a woman usually her mother. Three were cared for by young children. Care was often limited or denied altogether.

And because the first person to become sick with AIDS in a family is also often the main breadwinner, the income lost to this persons illness and the income lost to the carers represents a double burden on the family. Families also have to care for the patient's children; this will continue after their deaths.

There are other problems too of co-ordination and organisation. In the early 1990s in Mwanza, Tanzania, several organisations were doing home visits in an uncoordinated fashion with the result that some families were receiving no help, whilst others were being assisted by several agencies. One organisation, AMREF, has brought co-ordination to the system, which is now working better and has as its aim that everyone receives a visit at least once every two weeks.

And there is sometimes inadequate education for carers of people with AIDS. Carers need to learn how to look after people with AIDS. They also need to safeguard themselves from health risks. Although there is virtually no danger of contracting HIV by looking after an HIV+ person, many people with AIDS also have persistent diarrhoea, or may have tuberculosis, both of which are infectious. Carers can minimise the risk of contracting diarrhoea, for example, by following simple precautions.

Home based care can also leave the patient vulnerable to discrimination. This is a universal problem. April Thompson, a nurse working with AIDS patients in Jamaica says, ''I have had several cases, too many to mention, of people left out in the rain, I have found persons in pig pens and in chicken coops''. A woman who cares for her daughter at home in Nicaragua says, ''We don't receive any support from the community or from our neighbours....They say bad things about us. They say that we are the family with AIDS.''

Additional information

UNAIDS has a Homecare Handbook with advice for carers and patients. It is also planning workshops in several countries to encourage agencies and families to work together to care for people with AIDS. UNAIDS has offices in most developing countries, and can be contacted at its headquarters in Geneva at: Joint UN Programme on AIDS, avenue Appia 20, CH-1211 Geneva 27, Switzerland. Tel: (+41 22) 791 2111; Fax: (+41 22) 791 4880; e-mail: unaids@who.ch.

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