Introduction

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.
The Problem
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.
The Strategy
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.

The Person
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.