What is home-based care?

We've become used to a Westernised model of health care, one that largely hands over responsibility for the care of a patient to the doctor or the hospital. Yet, even in highly developed nations like the USA, that model has proved inadequate for the HIV/AIDS epidemic. HIV/AIDS is different from other infectious diseases in some important respects, which makes it appropriate to seek another model for care.

In the first place, there is the sheer scale of the epidemic. The figures speak for themselves: with a quarter or more of the population of South Africa (in excess of 10 million people) infected with HIV, there is no way that an already overburdened State health care system can deliver adequate care. Tackling HIV/AIDS demands the involvement of the community on a massive scale. In the second place, HIV/AIDS differs from other deadly infectious diseases in the slow pace at which death approaches. Plagues of the past, like the 1918 'flu pandemic, killed swiftly, in a matter of days. Even those with full-blown AIDS, in need of full-time nursing, may take many, many months to die. This means that families will have to take much of the burden of nursing on themselves.

The slow pace of the disease has other implications. People who feel otherwise healthy must assimilate the certainty of their own deaths years in advance. They can predict a time when they will be unable to work or care for their children, and that's a huge anxiety for them and their families. Yet, if they care for themselves well, they can stave off death for a long time. In consequence, a much wider spectrum of care is required than the Western model is equipped to provide. Much of this is outside the scope of the conventional medical system, and can better be provided by home visitors, other family members and friends.

Leave it to the family?

Home-based care does not mean just washing our hands of people living with HIV/AIDS and leaving their care to the family. Many, if not most affected families in South Africa, live in extremely deprived circumstances, where they are unable to provide even the most basic nursing tools - such as clean water and nourishing food. Families may be fragmented, or they may reject the infected person, due to the extreme stigmatisation that is associated with HIV/AIDS. Caregivers need training and support, in many areas, to be effective.

According to B E Monyena-Parsons, Holy Cross Hospice, Gabarone, Bostwana, "It is essential to gain the family's commitment to home care. This involves the appropriate and timely involvement and education of the family by health workers. Education must include such issues as when and how to care for a sick person, what resources are available in the community, and how to utilise the available resources."

The need for outside intervention to provide education and ongoing support means that home-based care is not inexpensive. "Community-based care and support programmes are often viewed as the least costly way to address the impact of HIV," say Michele Russel and Helen Schneider of the Centre for Health Policy, University of the Witwatersrand, in A Rapid Appraisal of Community-based HIV/AIDS Care and Support Programmes in South Africa (January 2000).

This is not really so. "The cost of three months of home-based care in an urban area [is] equivalent to 33 days in a district hospital."

Most home- or community-based care initiatives have grown out of the existing activities of NGOs, CBOs, welfare organisations and caring individuals - retired nurses and schoolteachers, for instance. There has been little in the way of systematic attempts, by national or local government, to support their development.

The range of care and training provided is inconsistent. Many programmes battle to fund the tools they need to be effective. The cost of transport often makes it difficult to reach people in need. A car breaking down may place a whole programme in jeopardy.

Home-based care initiatives urgently need our support at every level of society. The challenge is to mobilise every individual and every resource we have, to ensure that people living with HIV/AIDS survive in good health for as long as possible, and die in comfort and dignity.

Some elements of home-based care

* Emotional support, including initial counselling, help with accepting the diagnosis and communicating it to family members

* Wellness counselling on nutrition, stress avoidance, exercise and care of minor illnesses to maintain health for as long as possible

* Social support - help with access to resources such as disability grants, legal aid, pensions, housing and the like

* Medical care, both in-patient and out-patient, and palliative care for the terminally ill

* Bereavement counselling and care - assistance with preparing children for the death of a parent, for instance, as well as practical help with matters relating to the cost of funerals, access to monies due to heirs, and so on

Tips for caregivers

* Protect yourself : don't touch any of the sick person's bodily fluids - blood, faeces or urine - with your bare hands. Always wear plastic gloves or use a plastic bag to cover your hands. Wash out the bag or gloves in hot water after use to kill any trace of the virus. Keep any sores or wounds on the patient, on yourself, or any other family member, covered at all times, and never share toothbrushes, razors or needles of any kind. Wipe up any spills or smears of blood or other fluids with household bleach.

* Keep the patient healthy by feeding him or her with plenty of high-energy foods, like rice, pap or potatoes. Given them beans, eggs, milk and fish for protein, and try to grow some vegetables, like spinach, runner beans, cabbage and carrots.

* If patients have diarrhoea, ensure that they drink a lot of liquid. Mix a drink of one litre clean water, eight teaspoons of sugar, and half a teaspoon of salt. This will replace the water and salts the body needs. (Throw away any leftover mixture after 24 hours).

* Thrush is a common condition for people living with AIDS. It shows up as white spots on the tongue or inside the mouth, as well as in the vagina. It can make it very difficult and painful to eat, so treat it immediately. Boil two crushed cloves of garlic in water. Allow it to cool and drink a cup every day. If the patient is having difficulty eating, feed him or her with soft foods like avocado, yoghurt or vegetable soup.

* When a patient dies, remember that their body fluids can still infect you for about 24 hours, so continue to use precautions as you handle the body.