|Comfort and Hope, Six Case Studies on Mobilizing Family and Community Care for and by People with HIV/AIDS (UNAIDS, 1999, 94 p.)|
Facts about South Africa
Total population (1995):
41 465 000
Annual population growth rate:
Infant mortality rate (per 1 000 live births):
Life expectancy (years):
Per capita GNP (US$):
Surface area (km2):
1 221 037
At the southern extreme of Africa bordering Namibia, Botswana and Zimbabwe on the north; Mozambique, Swaziland on the east; surrounds Lesotho
Federal republic with a president as head of state and government
HIV/AIDS in South Africa
The AIDS epidemic is well established in South Africa and continues to grow at varying rates in all nine provinces.
In a November 1996 antenatal survey, 14.07% of women attending public health service clinics were found to be infected with HIV. Over 10% of all adults are estimated to be infected. If the estimates are accurate, this would indicate just over 2.2 million by the end of 1996. The majority of infections are the result of heterosexual transmission.
Analysis of reported AIDS cases is currently of limited value due to pervasive under-reporting. However, the current number of AIDS cases is estimated to be 43 000 of whom 10 000 are children born to infected mothers.
Levels of infection in Guateng Province, where Totem Home Care Services is located, were 6% in 1994, 12% in 1995 and 20% in 1996.
Mamelodi is a former black township of about 1.5 million people that lies west of South
Africas administrative capital, Pretoria. The community contains an estimated 250 000 dwellings (this term includes everything from proper houses to large boxes that people live in), with an average of six people per dwelling. A large proportion of the population is impoverished, and the incidence of HIV/AIDS is high.
Tateni Home Care Services began with a group of retired nurses living in Mamelodi, directed by Veronica Khoza, who identified a need for home-based care in 1995. The group visited some 2 000 dwellings during the first year and identified about 1 000 chronically ill persons, of whom 427 would benefit from home-based care. A consultant to the provincial department of healths Directorate for AIDS and Communicable Diseases, Janet Frohlich, acted as an adviser to the group in developing home-based care policy and training materials. During that same year, the group began providing home-based care services.
In 1996 Tateni Home Care Services was asked by the department of health to join a team of key role players at the Provincial, Regional, and district/community levels. The team has developed an integrated model of home-based care for the province modelled partly on Tatenis work. Pilot projects based on the model are now being set up in other locations in partnership with the provincial government.
Goals and principles
Tateni Home Care Services is a non-discriminatory, non-judgemental organization that aims to ensure that home-based care is provided in Mamelodi. The organization embraces the values of empathy, acceptance, hope, and the removal of discrimination against those infected or affected by HIV/AIDS. Its goals:
· to provide counselling and support services to infected and affected persons;
· to implement home-based care that is affordable, accessible, equitable and efficient;
· to enhance the collective capacity of the community to provide care and support;
· to enable and empower ancillary health careers to care for and cope with the chronically ill persons in their community; and
· to teach, advise, and provide guidance to the seropositive person and family members (or other significant persons in the patients life) about relevant aspects of health care, infection, and health promotion.
The organization also bases its work on three important principles. The first is the principle of decentralization, under which home-based care and support are decentralized from the provincial government to district and community level. Decentralization takes place through collaboration with other local health and social programmes. The second is the principle of partnership in order to include all stakeholders in policy development, strategic planning, and implementation of home-based care. Finally, the organization recognizes the principle of multisectoriality, which harnesses the knowledge and resources of a broad range of society in the response to HIV/AIDS.
Collaboration, not competition
In keeping with its basic principles, Tatenis activities complement existing health care services rather than duplicating or competing with them. The multisectoral approach means that, rather than working within the systems set up by the Health Ministry (with its limited and often overburdened human resources of formal care givers and support personnel), Tateni adds new resources:
· the family and kinship network as primary care givers; and
· community resources as support services.
Tatenis approach recognizes that copying models of home-based care from industrialized countries, with their high levels of funding and extensive formal health systems, would lead to failure. First, doing so would set unattainable goals in an area with a large population and limited resources. Second, it would be inappropriate to the social and cultural context of the people of Mamelodi, whose African traditions emphasize complex family and community relationships of support, obligation, and consensus rather than formal, state-directed services.
However, collaboration with the formal health system is an important part of the approach. When necessary, patients are referred to hospitals and other 24-hour institutions such as clinics for services like short-term admissions to control difficult symptoms, respite for primary care givers (that is, when the family needs a short break from looking after their seropositive member), or admission for more extensive treatment.
Major elements of the project
Tatenis home-based activities aim mainly at providing and enabling palliative care. However, HIV/AIDS prevention, education, and surveillance are also important parts of the work.
People with HIV and their families come to Tateni in a number of ways. Many arrive in search of services having heard about Tateni through word of mouth. Formal referrals are received from local clinics, general practitioners and the Pretoria Academic Hospital. Finally, Tateni receives clients through contacts with other local NGOs and CBOs, notably those in the Mamelodi coalition of organizations working with Tateni (these include Women Against Abuse, Childrens Day Care Centre, and several youth groups).
Tatenis training activities are carried on at two levels. The first is training of community care workers. These are local people who typically live nearby the clients they will be assigned to work with once training is finished. The training is given by a professional nurse with help from a social worker. Currently, the training is very basic and takes six months, but this is planned to be upgraded to twelve months in order to meet the standards of the National Policy for Health Workers.
The second level of training is carried out by the community care workers, with coordination and supervision by the professional staff. This training is directed towards:
We started with a box...
A Tateni nurse:
When Tateni began, we werent really anything formal. Not even a registered NGO, just a group of retired nurses and volunteers brought together by Mama Khoza. Shes a retired nurse herself, and a very important figure locally.
You should have seen our original centre. It was a big box, a container I think you call it, that we got permission to use. There are pictures of us giving classes outside of it, with an awning to keep the sun off the women who came to listen. Today it doubles as a crèche, where women can leave their babies.
When we were starting up we visited a lot of HIV-positive people and their families, and collected a great deal of information about what they wanted and needed. Almost unanimously, chronically ill people said they wanted to be treated at home whenever possible. Many of these people or their family members got involved in the planning and services at that time, and that continues today. We also got womens groups, local churches, and youth organizations to help out.
After a while we had a lot of activities going, with many individuals and community groups involved. So we went to the provincial government and said, look, we have something to offer here. Because of our contacts - remember, the original project members are retired nurses - we already had a certain level of access to the clinics and hospital beds. And that was essential, because its AIDS and at some point you need those intensive professional services. But we were out there in the community, with first-hand knowledge and a reach the formal system couldnt offer. Among other benefits, our work reduced the length of in-patient stays in hospital and clinic beds, and gave the formal system a place to refer patients to once they were discharged.
So it was a logical match, Tateni doing what it does well and the Department of Health doing what it does well, and everyone working hard to communicate. That way we avoid duplication and get the most efficient use of resources. Its not perfect, and we always need more funds and more volunteers, but it works. It really does. And thats why Tateni is being used as a model in five pilot projects in other parts of the province.
· teaching persons living with HIV and their families how to provide effective home care. This includes discussing various aspects of HIV/AIDS itself, a holistic approach to wellness, and accessing the formal system as needed;
· teaching volunteers to provide services such as counselling and health promotion.
Laughing while learning
A Tateni nurse: We did a lot with very little in the early days, and actually we still do, for instance, we needed some kind of demonstration aid to help in training families to look after someone when he or she gets ill - how to put on a bandage, or how to wash someone, all those basic things. It couldnt be heavy because no one has their own car and so they often have to go by public transport and walk a fair distance, it couldnt just be a diagram on paper because that just doesnt work among people who arent comfortable with Western-style communication. And it couldnt be expensive. In fact, it couldnt cost money at all.
So we created a training doll, full-size, made of foam rubber. It looks funny, but people like it and learn from it. Theres no reason you cant have a laugh while learning...
Partnerships and alliances
Government health-care system
The model of home-based health care developed for Guateng Province is based on devolution of decision-making responsibilities from the provincial level to the regional/district level. This creates a care interface between organizations at community level with health department officials who actually have decision-making power, with the result that policy development, planning, and monitoring activities are shared rather than handed down from one level to another. These planning and monitoring activities can thus be imbued with the core values of community mobilization since the lines of communication are not exclusively top-down. The arrangement also ensures that home-based care is delivered according to the health systems accepted standards of conduct and practice.
Local health-care providers
As mentioned earlier, Tateni Home Care Services maintains an ongoing contact with local clinics, hospitals, and general practitioners. Referrals are made by all of these stakeholders both to and from Tateni. Clinic and hospital beds are used by Tateni clients both for purposes of treatment of patients and to provide respite to family care providers.
Financial support for Tateni Home-based Care Services comes entirely from local donors and the provincial government. There are currently no national or international sources of funding. The medicines and nursing materials dispensed by Tateni are only possible because of donors. In some cases, medicines may be supplied by a local clinic if the patient or a family member is able to go to the clinic and collect it.
Other organizations and NGOs
Tateni maintains relations with a variety of other community-based organizations and NGOs, including church groups, youth organizations, and womens groups. As mentioned earlier, a number of these organizations are loosely grouped in the Mamelodi coalition.
Monitoring and evaluation
A the end of its first year of operation in Tateni Home Care Services carried out a qualitative assessment of its work. The retired nurses in the group distributed a questionnaire to 500 participants, of whom 369 responded. In addition to showing overwhelming appreciation of the services provided, the results indicated that most respondents preferred Tatenis home care and training to continue to take a general approach to health care activities rather than focus exclusively on HIV/AIDS.
Strengths and weaknesses of the programme
Internally, staff feel that the primary strengths of Tateni are twofold: its success at encouraging community participation and its achievement of widespread feelings of community ownership. They believe these are the reasons that Tateni has been able to reach and provide services to so many people in a relatively short time. These two strengths have given it enough credibility that the government services were willing to enter into a partnership with it.
The other significant strength is the projects successful integration of government and community activities, as modelled in the diagram on the following page.
The organization notes two significant weaknesses:
· resource mobilization is difficult, and the service is dependent on donors. Further partnerships and fund-raising will be necessary if further progress is to be made; and
· although commitment from volunteers is high (some of which may be attributable to the newness of the organization); hours that can be volunteered are extremely limited. This is likely a problem in any impoverished community. The organization would like to add incentives such as travel costs, meals, and uniform to its budget as line items, but is unable to do so yet.
For more information:
The role of NGOs/CBOs in the National AIDS Programme
The work of Tateni Home-based Care Services takes place in a context of important changes to South Africas health system. At the time of writing, a document called the White Paper for the Transformation of the Health System has been brought before the national legislature.*
* In British parliamentary tradition, a White Paper is a detailed discussion document presented to the legislature by the government, usually proposing significant changes to some aspect of government activity.
The document states that, nongovernmental organizations should continue to play an important role in the delivery and management of services. It also proposes that community involvement be guided by the following principles:
· All South Africans should be equipped with information conducive to caring for themselves or those in their community.
The White Paper goes on to say that, in order to improve the effectiveness and ensure the implementation of the National AIDS Programme, government will develop partnerships with key NGO/CBO stakeholders and benefit from the collective experience of civil society. It also proposes the creation of a committee to coordinate support for NGO/CBO activities in HIV/AIDS prevention and control. Among other tasks, the committee will develop an NGO funding policy for the National AIDS Programme, process NGO applications for government funding, and review progress by NGO/CBO organizations.
Best Practice Criteria
· Tateni Home Care Services exemplifies the community mobilization value of synergy, as achieved through shared planning and day-to-day collaboration between community-based organizations, local institutions, and government. This synergy has made possible significant benefits in both effectiveness (the impact on the target population) and efficiency (the use of available resources in the most effective way).