Home is where AIDS care is in Uganda
THE CONCEPT that caring for AIDS patients in their homes because it is both medically sound and basically humane is being carried out quite successfully since the late 1980 in African countries such as Uganda and Zambia. In the health-care programmes of these countries, the aim is to provide a variety of services in the homes to HIV-hit patients and their families. Health-care teams visit the patients at home, counsel the family about the disease and the patient's needs and gather data on the patient's sexual history.
The home-care approach has several positive aspects. One, terminally ill patients would more likely prefer the privacy of their home, especially when it's obvious that hospital care cannot cure them. This is especially so in the village culture of rural Uganda and Zambia, wherein the family is the individual's greatest source of emotional and spiritual strength. The personal care that these patients receive in their home makes it a more bearable option. Two, home care lessens the burden on the already strained health-care systems in most developing countries.
The AIDS Support Organisation (TASO) in Uganda is an institution that has opted for this approach in caring for AIDS patients. A voluntary, charitable organisation, that is also non-profit and non denominational, TASO was founded in Kampala in November 1987 by a small group seeking to provide support for people with HIV infection and AIDS. TASO decided to provide this through counselling, information, clinical care and home visits.
HIV-infected persons and their dependents, living within a 16-km radius of Kampala, can seek help from TASO. Nevertheless, TASO clients are mostly referred by government AIDS clinics. The patients are mainly from the urban, middle and low socio-economic class.
TASO places strong emphasis on counselling and makes this an integral part of all its programmes. It also conducts training programmes in AIDS and HIV awareness for health workers and counsellors to get them to change conventional attitudes to the illness and to encourage feelings of compassion in them to the families of patients with HIV and AIDS.
TASO administers drugs under medical supervision and gives advice on how indigenous medicines can be used to alleviate HIV symptoms. It also provides basic material assistance to clients when necessary.
In June 1988, TASO opened a branch unit in Masaka, a town 130 km from Kampala. Masaka district, incidentally, has the highest number of AIDS cases in Uganda, with the patients coming mostly from families who survive through subsistence farming in an area severely affected by years of civil war, wanton destruction and political instability.
As some TASO staff-members have themselves tested HIV positive, it makes them all the more sensitive in their work. This is especially beneficial to the patient because TASO's approach is based on one-to-one counselling. TASO counsellors are chosen not because they have a professional background, but because of their personality, basic counselling skills, personal commitment to TASO's goals and their ability to identify with the patient and the family.
TASO is aware, as an organisation, that enrolling HIV-infected persons as staff-members is both a source of strength and weakness. Because they have frequent periods of illness they cannot be expected to work full time and because their mortality rate is high, gaps are left in the organisation that are difficult to fill and at times disrupt services.
As this can create staff problems, TASO is considering a plan to recruit two HIV-positive persons for each full-time post. TASO volunteers are quite capable of working with families to take care of feeding patients, changing their linen and the like, but they may not have the skill to cope with nursing a baby. Hence, TASO's aim is to strike a balance between infected and non-infected staff-members and between volunteers and professionals.
The TASO experience is evidence that home-based support is the key to decentralise AIDS care and other health programmes. Learning from TASO's experience, the Ugandan government is considering extending home-care programmes throughout the country because it sees this as the only solution to providing health care, especially to AIDS and HIV victims, within a limited governmental budget.