Veronica Khosa

Veronica Khosa has designed a prototype home-based nursing service that has influenced health care policies nationally and internationally. Her work has changed the lives of many chronically and terminally ill patients in South Africa's Gauteng province.

Rejecting the premise that healthcare is something devised by experts and imposed on patients, Veronica has created an environment where chronically ill patients command respect and can make decisions about their own health. In a country where the formal healthcare system is unable to treat the millions of people ill with HIV/Aids and other diseases, Veronica has established home-based healthcare that teaches family and friends to care for the ill and even to rehabilitate them. She engages healthcare workers and teaches skills to young people by employing retired nurses and others to conduct healthcare training in the community. Her project creates healthcare that not only improves people's lives but uses resources in the most effective way.Veronica learnt about the HIV/Aids epidemic firsthand nursing infected patients in 1990 in Mamelodi, a township outside Pretoria. Her office was inundated with families seeking help for dealing with dying people. Veronica started keeping statistics and found that in Mamelodi four hundred twenty-seven bedridden people were not being cared for by anyone. Veronica decided to create her project after she witnessed one of the many personal tragedies of the HIV/Aids epidemic: a client of hers, alone in a locked room with barred windows, asked for water and then gasped and fell dead to the floor.

South Africa's healthcare system is being swamped by a wave of serious infectious diseases and poverty-related illnesses. UNAIDS estimates that up to four point two million of South Africa's forty-five million inhabitants are living with HIV/Aids, one of the highest rates of infection in the world. In addition, the poor suffer from high rates of tuberculosis, malnutrition, diabetes, and cancer. Residents with families in the poverty-stricken rural and suburban areas report that it is not uncommon to lose as many as 10 relatives to disease in a month.

Finding an effective way to care for the chronically and terminally ill has become a major challenge as HIV/AIDS devastates South Africa and other African countries. Hospitals, lacking the facilities or staff to deal with these problems, send patients home without counseling, access to appropriate medication, or information about home care. Family members and relatives terrified of anything to do with HIV or Aids may lock up patients in their bedrooms. Employers discharge infected persons from work. As a result of rejection and stress, many patients progress to full-blown Aids faster than expected. The disease is claiming younger and younger people and orphaning more and more children, yet most healthcare centers offer information and counseling about HIV/Aids prevention but not about how to cope with the disease once it has struck. It is now hard to tell which disease is the killer - Aids or the opportunistic illness that finally ends a patient's life.

Veronica's organization, Tateni Home Care Services, offers counseling and support services to infected and affected persons and provides home-based care that is affordable, accessible, equitable, and efficient. It enhances the collective capacity of the community to provide care and support, and it enables ancillary healthcare providers to cope with the chronically ill. Finally, it teaches and advises the ill person and family members or friends about relevant aspects of health care, infection, and wellness.

Veronica and her staff of nurses train community care workers in home-based nursing. Once a patient is referred to Tateni, a nurse accompanies a community care worker who lives near the patient to assess the illness and develop a care plan. The community care worker, with help from the professional staff, then trains family members and relatives to take care of the ill person in a way that takes into account his or her wishes. "If we find someone sleeping comfortably on newspapers, " says Veronica, "we bring more newspapers - we use their own remedies." The idea is to transfer skills to the family or friends so that the Tateni workers and volunteers form a support base for advice and monitoring. A district team consisting of a physiotherapist, an occupational therapist, a professional nurse, a medical doctor, and a social worker comes in to assist with developing the care plan and to provide access to medication. When necessary and possible, patients are referred to hospitals. Tateni is starting projects to support orphans, teach patients how to earn money, form support groups, and teach skills to patients and family members. It counsels patients and families about the disease and about bereavement.

The Gauteng provincial government has adopted Veronica's model of home-based care and implemented it in the district of Mamelodi. Lobbying by Veronica and her colleagues has moved the Department of Health to introduce palliative treatment into its training curriculum for nurses and doctors. Veronica is now sharing her ideas and experiences with workers in other parts of the country. She conducts workshops with churches and citizen organizations to encourage the spread of home care, and is planning to write a book about her experiences and techniques as a basis for establishing her model elsewhere.

Veronica's idea is gaining international attention. Tateni was the only group asked to produce a report on care of the terminally ill for the 1997 World Health Organization (WHO) conference in Geneva. WHO chose Veronica's project to provide case studies on family and community care for and by people with HIV/Aids. In addition to recognition by WHO, Veronica was invited to participate in a conference in the United States about care of the aging in rural communities.

Veronica Khosa was raised by her grandmother and aunt in a small rural area of Kwa-Zulu Natal, South Africa. A generous neighbor paid for Veronica's schooling, and the young woman returned the favor by entering nursing, a profession that helps others. After a stint in 1957-60 working as student at a mission hospital, Veronica became a midwife in a Pretoria clinic. Traveling from home to home, Veronica discovered the importance of accommodating care to the values and beliefs of her patients. She recalls one instance when she was assisting a difficult delivery in a home sixty-five kilometers from the nearest hospital. Her client, in heavy labor, insisted on going outdoors to talk to the thunder and lightning raging outside. Veronica let her go. The woman returned to the house soaked but fully cooperative, and the baby was born ten minutes later.

At the clinic, Veronica was asked to wash dishes because she was not a registered nurse. Believing that everyone is qualified to care for others, and shunning distinctions based on rank, she refused. She returned to school to finish her nursing degree and passed with honors in 1970. In 1990, she helped start a center in Pretoria to test for HIV/Aids, but the frustration of telling people they had HIV/Aids only to watch them die led her to resign after a few years. Hospitals would not admit people with HIV/Aids for fear that staff would catch the virus, so Veronica started asking the question, "Who is looking after people sick at home?" From that question, Tateni Home Care Services was born.