Community-Based AIDS Prevention and Care In Africa: Building On Local Initiatives, Case Studies from Five African Countries

REPRODUCTIVE HEALTH PROGRAM (EBERT)

Community-Based AIDS Prevention and Care In Africa: Building On Local Initiatives, Case Studies from Five African Countries

Edited by Ann Leonard, with assistance by Armandbanu Khan

Table of Contents

Introduction
The Zimbabwe National Traditional Healers Association (ZINATHA)
INDENI, Zambia
Kwasha Mukwenu, Zambia
Community-Based Counselling in AIDS Prevention and Care, Uganda
Kilimanjaro Womens' Group in the Fight Against AIDS, Tanzania
People in the Fight Against AIDS in Tanzania
Kenya AIDS Society
Voluntary Women Rehabilitation Institute, Kenya
Building On What Has Been Learned
Elements of Successful Projects and Related Challenges

Introduction

In sub-Saharan Africa, people have faced calamities brought about by disease, famine, drought, civil strife and the like for generations. But somehow the strong extended family and kinship networks that are the backbone of the African social structure have been able to cope with these catastrophes. AIDS, however, is a different matter. With almost two-thirds of all estimated cases of AIDS to date thought to have occurred in the region, the potential social and economic devastation faced by the people of sub-Saharan Africa is enormous. What makes the situation even more difficult is that the AIDS epidemic has struck at a time of economic downturn when most African governments are faced with implementation of economic structural adjustment policies that reduce, rather than support, their ability to provide health care and social services to their citizens. Yet despite the magnitude of the crisis and the paucity of resources at their disposal, Africans are responding to the challenge of AIDS with unyielding courage and creativity. Building on the inherent strengths of family and community, people are getting involved in the fight to stop the spread of the disease and to support and care for those who have been affected--not just those who are infected with the virus, but their families as well.

Given the constraints faced by the health care infrastructure in responding to the immensity of the crisis and the growing awareness of the limitations of traditional educational approaches in motivating people to modify their sexual behaviour, it has become apparent that community-based efforts at AIDS prevention and care of those affected are, in the African context, the first line of defence against the disease.

With the support of GlaxoWellcome's "Positive Action" Programme, the Population Council is carrying out a three-phase project entitled "Community-Based AIDS Prevention and Care in Africa: Building on Local Initiatives" to:

explore the range of efforts by organisations in Africa that are dealing directly with the consequences of AIDS;
understand the essential components of effective community-based efforts for AIDS prevention and the care of persons living with HIV infection; and
determine how best to build upon these local initiatives.

Community based initiatives were surveyed in East and Southern Africa, of these eight were chosen to be profiled in greater depth. The eight projects profiled range from ad hoc activities that began as the response of concerned community members to national organisations that recognized the importance of working at the community level to develop effective mechanisms for helping those affected by the epidemic and culturally appropriate means of encouraging behaviour modification.

It should be emphasized that this report is in no way seeking to define all-purpose models for community-based AIDS prevention and care. Rather, we are attempting to identify and understand the elements that make for successful projects in the hope that this information will prove helpful to other groups trying to meet a similar challenge in their own communities.

A CASE STUDY OF THE ZIMBABWE NATIONAL TRADITIONAL HEALERS ASSOCIATION (ZINATHA)

Consultant: Dr. James Jijide

The Zimbabwe National Traditional Healers Association (ZINATHA) represents most of the traditional healers (herbalists, spirit mediums, faith healers, and traditional midwives) practising in Zimbabwe. Under the auspices of the National AIDS Control Programme (NACP), it has developed a national HIV/AIDS prevention project using traditional care systems to provide support to those affected by HIV/AIDS, develop traditional methods aimed at reducing HIV/AIDS transmission, increase awareness of HIV/AIDS for prevention and care of people with AIDS, and create a supportive environment for those living with the disease.

ZINATHA aims to accomplish these important goals by:

employing diverse counselling methods to support adoption of safer sexual practices;
working closely with chiefs and other opinion leaders in an attempt to get them to encourage the modification of traditional practices that promulgate the spread of AIDS;
seeking to make welfare services more accessible for people with AIDS and their families by disseminating information on what social services are available, who is eligible, and how to apply.
encouraging communities to respect the important role of the extended family in meeting the material, social and psychological needs of all those directly and indirectly affected by AIDS.
using different forms of communication--such as radio, television in local languages and lectures, and diverse formats including mass media, drama, and dance--to carry out IEC activities in both urban and rural areas;
encouraging healers to register to participate in clinical trials conducted by the Ministry of Health to test their traditional medicines in the prevention and treatment of HIV and AIDS-related conditions.

ZINATHA's overall project activities are helping to bring about a change in high risk behaviour such as unprotected sex, multiple partners, and unsafe medical practices which could lead to HIV infection. As well as helping to create a more supportive environment for those living with HIV infection. Additionally, the Association promotes community home-based care initiatives aimed at reducing the medical, economic and psychosocial burdens of AIDS. Advocacy for quality institutional care of people with AIDS and their families has enhanced collaboration and information exchange between ZINATHA, community-based organisations, and individuals involved in HIV/AIDS prevention activities. Although more needs to be done in this area, ZINATHA's HIV/AIDS project has also enhanced the rights of people with AIDS.

EMPLOYER RESPONSE TO MANPOWER SHORTAGES DUE TO HIV/AIDS IN THE WORK PLACE: A CASE STUDY OF INDENI, A PETROLEUM REFINERY COMPANY IN NDOLA COPPERBELT PROVINCE, ZAMBIA

Consultant: Dr. Mubiana Macwang'i

The INDENI Petroleum Refinery Company, located in Zambia's Copperbelt Province, is participating in the Zambian Ministry of Labour and Social Security's (MLSS) effort to promote AIDS education and prevention in the work place. In Zambia, workers employed in the formal sector represent a large, accessible population who are directly experiencing the impact of AIDS. Because the work place is an organised community, it offers important opportunities for HIV/AIDS education and prevention.

In 1979, the MLSS initiated a project to introduce family planning information and services into the workplace. By the early 1980s, the MLSS recognized the need to introduce a component dealing with sexually transmitted diseases. It was logical, therefore, that when AIDS became recognized as a health concern in Zambia, the project was further expanded to include HIV/AIDS prevention and care activities.

INDENI's HIV/AIDS prevention and care services, which are part of a company-wide broad health programme, are offered to all its employees. Activities include information, education and communication to increase AIDS awareness, promotion and provision of condoms, counselling, nursing and medical care for in and out-patients, and community outreach services targeted at employees' families, particularly spouses and sexual partners. In addition, people with AIDS are provided with medical care.

These efforts have resulted in increased awareness and knowledge about HIV/AIDS among INDENI employees. Most of the employees interviewed for the case study said they were aware that AIDS is a major social problem and health threat. They also knew the main symptoms of AIDS and that the primary mode of transmission in Zambia was through heterosexual intercourse. And while project staff still feel that there remains a large gap between knowledge and behaviour change, there is some evidence of positive change. When the project began, workers were reluctant to use condoms. Now, whenever there is a project-sponsored event, staff have to bring boxes of condoms because "they are going like hotcakes."

A CASE STUDY OF KWASHA MUKWENU: A CINDI PROGRAMME IN URBAN LUSAKA, ZAMBIA

Consultant: Ms. Patricia Kamanga

Kwasha Mukwenu is a Children in Distress (or CINDI) project located in Matero, a small suburban area of Lusaka, the capital of Zambia. It is affiliated with the Society for Women and AIDS in Zambia (SWAAZ). To meet the growing need for local alternative forms of care for people with AIDS that utilize local human and material resources more efficiently, a community-based approach, known as "Children in Distress" (CINDI), was initiated in Zambia in 1989 and became operational in May 1991. The CINDI concept grew out of deliberations between area doctors and representatives from SWAAZ, UNICEF, and Christian Children's Funds, in coordination with the National AIDS Control Programme, to provide alternative care for HIV/AIDS patients. This case study focuses on Kwasha Mukwenu, the SWAAZ-affiliated CINDI project.

Kwasha Mukwenu, which means "help your friend" in the local language, was formed initially by members of the women's group at St. Mary's Catholic Church after one member returned from a trip to Uganda and shared with the group what she had learned about how orphans are being cared for in that country. Based on what the women learned, they decided to take action.

A major activity undertaken by the organization is the care of children. On average, each woman looks after from three to five families of orphans. They call these children their "caretaker families" and they become the "caretaker parent." It is each caretaker parent's responsibility to ensure that the orphans under her care attend school and that they have food, medical care, clothes, shelter, and the attention of a caring adult. Whenever they learn that orphaned children have been thrown out by relatives (not an uncommon occurrence in such a resource- poor environment), members try to get the family to take them back. In addition, members are aware of families where one or both parents are affected by AIDS and Kwasha Mukwenu provides assistance to these families to the extent possible, even if it is just moral support and the knowledge that someone is concerned with their welfare and that of their children. Kwasha Mukwenu members also visit and care for people living with AIDS in Matero.

There are currently about 35 active members who come to the centre every day to participate in the group's three major income-generating activities: cooking, sewing and tie and dye. The cooking project has contracts with several local schools and provides these institutions with biscuits and bread each day. Clothes and uniforms made by the sewing group, and cloth produced by the tie and dye project, are sold through local retail shops, as well as at conferences and special events. In addition to earning income through the tie and dye project, the organisation's youth wing is helping orphaned adolescents to both support themselves and their siblings and learn a trade by working as apprentices in this business.

Kwasha Mukwenu also provides counselling for groups of orphans, mostly girls, and attempts to educate the community about HIV/AIDS. Kwasha Mukwenu members have produced a play which they use to educate people about the situation of orphans in their community. Members distribute educational booklets about STDs and HIV/AIDS, in local languages and English. Despite not having formal training, Kwasha Mukwenu members do their best to provide counselling and health education not only to HIV- positive individuals and people with AIDS, but to their partners and families as well.

Historically, in situations of illness or death, Africans have relied upon the mutual assistance provided by the extended family. But in the face of AIDS, the family support network alone cannot meet the growing need for care. Neighbours must also collaborate with one another to provide the necessary social support within the community. Particularly, there is a need for alternative means to care for children whose circumstances have become precarious as a result of AIDS. Kwasha Mukwenu attempts to establish such alternative forms of support by helping--at least to the extent possible--individuals, families, and the community cope with the epidemic and support children orphaned by AIDS.

A CASE STUDY OF COMMUNITY-BASED COUNSELLING IN AIDS PREVENTION AND CARE IN UGANDA

Consultant: Mary Amanyire

This study focuses on the Community-Based Counselling (CBC) project of the Information, Education, and Communication (IEC) Section of the Uganda National AIDS Control Programme (NACP). This study took place in Pakanyi Subcounty, in Masindi District, one of two initial project sites.

"It is high time we took up the challenge of AIDS in our own hands. It is too much work for the AIDS Control Programme alone to educate everyone everywhere and AIDS will not wait. Go out and educate your people where you live. Start up local drama to educate the undisciplined. Take charge every Friday or Sunday and devote five minutes to remind your friends and neighbours about AIDS. Maybe if we all participate and seriously talk to our children, it could be the beginning of change in behaviour."

NACP Director, at the launch of the CBC Programme

In 1991, the NACP carried out an evaluation of its IEC efforts. The evaluation made clear that while the level of awareness about HIV/AIDS was high, this was not leading to significant change in behaviour. The evaluation also revealed a high degree of misconceptions about the transmission of HIV that was impeding efforts to prevent the spread of infection and inhibiting efforts to care for people with AIDS in the community.

Today in Uganda the subject of AIDS is incorporated into almost every type of community activity. Therefore, the NACP decided to redirect its IEC efforts beyond awareness to a type of education that actively promotes behavioural change. They saw a need to engage individuals, families, and communities in dialogue--through counselling--in order to motivate them to adopt safer sexual behaviour. Therefore, among the new approaches implemented was Community- Based Counselling (CBC). This approach focuses on encouraging local communities to take the initiative in carrying out AIDS education and providing basic nursing care through the deployment of a cadre of trained, voluntary Community Counseling Aides (CCAs). It is designed to promote better living conditions for the whole community while at the same time reducing dependency on external sources of support.

The CCAs are the backbone of the CBC project. Each CCA usually represents one village, but in Pakanyi, where dwellings tend to be spread out, one aide may cover only a portion of a larger village. The training programme has been designed to equip CCAs with knowledge about HIV/AIDS prevention and basic counselling skills. A primary goal is to enable the CCAs to strengthen the level of family and community support to people with HIV/AIDS.

Adopting a strategy to help control the spread of HIV and provide home-based care has required not only counselling for patients, but also for spouses, immediate family members, and others in the community. Thus, CCAs make sure that family members have the correct information about HIV/AIDS. In addition to making home visits, CCAs work with groups of students, participate in local meetings, and generally serve as an educational resource for the entire community.

The CBC project seems to be increasing both AIDS awareness and the quality of life for HIV/AIDS patients. In terms of behaviour, CCAs report seeing evidence of change, but still faces a number of constraints. Misinformation about condom use and safer sexual practices is still common and traditional practices, such as ritual cleansing of widows, persist. Also, despite increased awareness, considerable prejudice against people with AIDS continues to constrain efforts at home care in areas like Masindi.

KILIMANJARO WOMEN GROUP IN THE FIGHT AGAINST AIDS IN TANZANIA (KIWAKKUKI)

Consultant: Hores Isaack-Msaky

Kikundi Cha Wanawake Wa Kilimanjaro Kupambana Na Ukimwi or KIWAKKUKI, as it is commonly known, is the Kiswahili name for the Kilimanjaro Women's Group in the Fight Against AIDS, a community-based nongovernmental organisation. It was founded in 1990 by a group of women in northern Tanzania who felt compelled to join the fight against HIV/AIDS because the negative effects of the epidemic were rapidly increasing in their community.

The first step in the formation of KIWAKKUKI was taken in December 1990, when a group of women got together informally to organise an AIDS Week in the town of Moshi. The theme for the week's activities was "Women and AIDS," which was the theme for the World AIDS Day that year. Following the success of the week's activities, a number of these local women decided they would form a women's organisation in Kilimanjaro in response to the HIV/AIDS epidemic. KIWAKKUKI's founders felt that as women were the most vulnerable and affected group within the population, they needed to mobilize to protect themselves, their children, and the whole community from being infected with HIV and to care for those already infected/affected.

Although KIWAKKUKI is a women's organisation, its target group is the entire population in the area: all age groups, sexes, and religions. Their objectives include:

Raising awareness and educating the community, particularly women and young people, about HIV/AIDS;
Helping restore dignity, self-respect, and purpose to the lives of individuals and families affected by HIV through the formation of a self-help group;
Promoting understanding and developing a sense of responsibility within communities for HIV prevention;
Identifying the physical and psychological needs of HIV-infected people and their families and coordinating support for those in need;
Raising the status of women in family and community life so that women can conduct their lives with dignity and without threat to their physical and mental well- being; and,
Cooperating with other groups and organisations dealing with HIV/AIDS, including the sharing of information and resources.

KIWAKKUKI staff believe that through their mobilization of women to carry out community-based activities for HIV/AIDS prevention and care they can bring about social change. At the village level, many women have been empowered, especially those who are members of KIWAKKUKI, to talk about AIDS prevention with their husbands and children. Staff believe that their voluntary support to PWA and HIV-affected people helps to gives AIDS a face and contributes to reducing the stigma and discrimination surrounding the epidemic.

The most outstanding lesson to be learned from KIWAKKUKI's experience is how quickly and effectively a group of local women were able to mobilize and rally support within their own community. The voluntary spirit of its members, who carry out AIDS prevention and care activities during their free time, is the life force of the project.

A CASE STUDY OF WALIO KATIKA MAPAMBANO NA AIDS TANZANIA PEOPLE IN THE FIGHT AGAINST AIDS IN TANZANIA (WAMATA)

Consultant: Dr. Esther Mwaikambo

WAMATA is the acronym for the Swahili name "Walio Katika Mapambano na AIDS Tanzania" or "People in the Fight against AIDS in Tanzania." WAMATA is based in Dar-es-Salaam, but operates in three other regions heavily affected by the AIDS epidemic. Each district has a local programme office staffed by a social worker/counsellor. This case study focuses only on the programme of WAMATA, Dar-es-Salaam.

WAMATA was created in June 1989 when Theresa Kaijaige and a few friends became concerned about the plight of individuals and families facing the stigma of HIV/AIDS infection. Ms. Kaijaige is a social scientist who comes from Bukoba, on the Uganda border, a part of the country that has been hard hit by the AIDS epidemic. Both she and her husband teach at the University of Dar-es-Salaam. The project started informally with visits to AIDS patients in a nearby hospital and by offering solace to afflicted families.

WAMATA's overall objectives are consistent with those of Tanzania's National AIDS Control Programme (NACP): 1) prevention of HIV transmission, 2) amelioration of the social and economic consequences of AIDS, 3) collaboration with national and international organisations 4) condom promotion, 5) community support, and 6) research on HIV/AIDS related issues. However, WAMATA's specific objective is to serve HIV-positive individuals, persons with AIDS and their families (especially those who have low incomes), support community groups in the care of those with AIDS, and to assist in the care of orphans.

Working with the Ministry of Health (MOH), various non- governmental organisations (NGOs) and other institutions sympathetic to its cause, WAMATA undertakes the following activities, to the extent possible depending upon availability of resources:

Identification of HIV-positive individuals, people with AIDS and their families in need of services;
Home visits that include counselling and medical care;
Dissemination of information on the prevention of HIV/AIDS;
Provision of condoms;
Educating HIV-positive individuals and people with AIDS as to their rights and responsibilities, both to themselves and to the community;
Provision of basic necessities to people with AIDS such as medicine, food, clothes, and school supplies for their children; and
Helping families and communities to care for children orphaned by AIDS

WAMATA staff believe that their most difficult tasks are to counsel women how to inform their partners/husbands that they are HIV-positive and how to suggest that their fiances get tested for HIV. They also find it difficult to explain to HIV-positive women why they should not conceive. As a result of counselling, the majority of the clients interviewed for this study (who were mostly women) responded that whenever they have sex, they now use condoms because they are worried about infecting others. However, many women in the community are still afraid to ask their partners to use a condom.

WAMATA staff interviewed for this case study consider the organisation's greatest strength to be the tremendous participation of its more than 200 members with AIDS in project activities and its collaboration with local organisations. Clients feel that WAMATA has helped them realize that they are not alone in dealing with AIDS and the organisation offers them an opportunity to communicate with one another, to socialize, and to learn to become self-reliant. Because of WAMATA, they feel that when they have problems, there is always help available. Clients expressed gratitude for the help WAMATA has given them to plan ahead, particularly for the future of their children.

COMMUNITY - BASED PREVENTION AND CARE OF AIDS A CASE STUDY: KENYA AIDS SOCIETY (KAS)

Consultant: Jane Murago-Munene

The Kenya AIDS Society (KAS), formerly known as Know AIDS Society is a nongovernmental organisation (NGO) that operates mainly in urban areas. This case study was conducted in the eastern suburban section of Kenya's capital, Nairobi, and is typical of most of the communities KAS serves.

The Kenya AIDS Society was founded in 1989 when a group of HIV-positive Kenyans realized that while individually they could not do much to address the problem of AIDS, as a group they could be much more effective. They could have an identity and encourage more people with HIV/AIDS, and other concerned individuals, to come forward and help prevent further transmission of the disease and to provide assistance to those already afflicted. The founders of KAS were among the first people with AIDS in Kenya to speak publicly about their condition.

The primary goal of KAS is to reduce the disabilities and stigma associated with HIV infection. To realize this goal, KAS tries to mobilize people with AIDS to respond to their own health problems in a positive way and to use its own members to inform the community about AIDS prevention and care of those affected by the disease. Specifically, KAS aims to:

mobilize people with HIV/AIDS for counselling, outreach, education, and advocacy;
unite persons with or affected by HIV/AIDS so they share experiences and learning from each other about how to live positively with HIV/AIDS;
collaborate with and encourage support from the community-at-large; and
develop and maintain supportive relationships with other community organisations.

However, first and foremost the organisation is OF and FOR people with HIV and people with AIDS. The need for advocacy in support of the rights of AIDS patients and the desire to assist AIDS orphans have also become significant concerns for the organisation.

In addition to the strain of dealing with family and community attitudes, staff continually must deal with clients' problems in securing adequate food, lodging, and medical care. For this they maintain liaisons with numerous other organisations so that they can refer clients for help. But often the need far exceeds supply. Further, clients are faced with concerns about maintaining their families, such as paying school fees for their children.

But on the positive side, more and more people are obtaining information from educational materials, using the KAS hotline and, according to KAS counsellors, engaging in safer sex by using condoms and having fewer partners. It is unfortunate, however, that most of the educational materials currently available to KAS are in English and therefore of limited use to non-English speakers (the majority of KAS clients), not to mention low- literate or illiterate audiences.

KAS clients report that "people feel free at heart" to talk openly about HIV/AIDS in the group therapy sessions. They say that some people have changed by becoming spiritually committed and that many have started to take measures to avoid the spread of AIDS by using condoms. Sex workers are also trying to find alternative means of earning a living. From the administrators' viewpoint, change in sexual behaviour has been most notable among sex workers. According to KAS, more and more people are using condoms to protect themselves from infection, although some people still continue to spread HIV due to ignorance.

Both staff and clients believe that men are the main problem in preventing the reduction of the spread of the disease because they are reluctant to use condoms--"it's like eating a sweet with the wrapper on"--and because they continue to visit prostitutes. Some women interviewed said that condoms break or that men tear them deliberately. Staff feel that the group currently at greatest risk of contracting HIV/AIDS infection is female adolescents, aged 10-19 years old, due to the dogo-dogo syndrome. That is, older men or "sugar daddies" provide material and financial support to young females (for school fees and supplies, food, etc.) in exchange for sexual favours.

CASE STUDY REPORT ON VOLUNTARY WOMEN REHABILITATION INSTITUTE (VOWRI)

Consultant: Jane Muriithi

The Voluntary Women Rehabilitation Institute (VOWRI) is a project that is helping sex workers in Kenya protect themselves from sexually transmitted diseases (STDs), including AIDS, and involving them in the effort to reduce HIV transmission. The project is also assisting these women develop alternative sources of income to help them reduce or eliminate their financial dependence on prostitution.

In 1984, studies of sex workers in urban Nairobi showed that 30-88 percent of the women surveyed were HIV positive. Data from these studies also revealed a high prevalence of other sexually transmitted diseases. In response, the Departments of Microbiology and Community Health at the University of Nairobi set up an STD clinic in Pumwani specifically to meet the needs of prostitutes. However, the women did not like being labeled as sex workers through use of this facility. So, when five other service delivery points were integrated within the existing primary health care centres about three years ago, STD services were made available at each unit. While such integrated services were able to meet broader health care needs, the sex workers clearly had special needs and were particularly vulnerable to HIV infection.

To better meet the needs of these women, Dr. Elizabeth Ngugi from the Department of Community Health, University of Nairobi, and some of her associates, formed an organisation called the Voluntary Women Rehabilitation Institute (VOWRI) to specifically address the problems that were facing prostitutes and to engage them in STD and HIV/AIDS prevention activities as well as socio- economic development. The project has been fully operational since 1990.

VOWRI attempts to combat HIV transmission through behavioural modification, empowering sex workers to negotiate for safer sexual practices and assisting women in developing alternative or supplementary means of earning income. Women either come to VOWRI on their own or are referred by clinic staff.

Each group of women meets weekly to: 1) share experiences and participate in group counselling sessions; 2) participate in a merry-go-round savings strategy which provides each woman with a small sum of money on a rotating basis; 3) maintain a joint savings account which can be used to support group projects; and 4) encourage members to maintain their own individual bank accounts.

The fact that many HIV-positive men are still reluctant to refrain from casual sex or to use condoms underscores the importance of increasing women's assertiveness in sexual negotiation. VOWRI members' increased knowledge about the sexual transmission of HIV and effective use of peer pressure have enabled this group of sex workers to reduce the frequency of risky sexual encounters.

BUILDING ON WHAT HAS BEEN LEARNED

We have attempted to learn from the experience of the organisations surveyed--and, most particularly, from the eight local organisations that participated in the case studies--in order to better understand how they have been able to mobilize support at the community level to establish, expand and continue their activities. The experience has made it clear that local people--including people living with AIDS--can become active and, in many cases, dynamic agents for changing attitudes and providing support to those in need within their communities.

Advantages of Community-Based Initiatives

One of the goals of the community-based AIDS project was to assess the effectiveness of integrating prevention and care activities within the same project--a topic of considerable debate, particularly in developed country settings. However, it quickly became apparent that, in the context of the five African countries where these studies took place, there is no dichotomy at the community level between working towards stemming the tide of the epidemic and caring for those already affected. At the local level, where people are living with AIDS on a daily basis, artificial distinctions between prevention and care are revealed to be more the result of top-down programme stratagies than a realistic response to people's needs.

Another clear advantage of organisations working at the community level is their ability to encourage not only the support but the participation of local leaders in AIDS prevention and care activities. In Africa, the role of the elders cannot be underestimated. Enlisting their support, as well as the involvement of local government officials, is an important first step in sanctioning the participation of the community and enlisting the support of prominent individuals and other local organisations.

Having the focus of a project at the community level also builds in an accountability factor. Unlike donor-driven initiatives conceived, executed and fully funded from above, if a community- based project is not perceived as useful by local people, they simply will not participate in the effort or provide the support needed for the project to continue operating.

Local initiatives also seem to be particularly effective in mitigating some of the effects of the epidemic on those who are HIV positive or have AIDS. The projects studied appear to be far more effective than mass media or national education campaigns in addressing this problem because they are actually putting a human face on the epidemic.

In addition, all of the projects are helping those who are HIV positive or who have AIDS to live more positively with the disease. For example, by carrying out home visits, the projects are making the lives of AIDS patients easier and are demonstrating to their families and neighbours that there is nothing to fear from relating to them in a normal way.

The last advantage is one that is almost impossible to measure: behaviour change. All of the projects report some degree of behaviour modification on the part of their clients in terms of increased condom use and greater avoidance of risky sexual activity. There is also some evidence that with increased knowledge some people are able to avoid participating in traditional practices such as circumcision or widow inheritance/ritual cleansing that involve the risk of HIV transmission. However, it must be remembered that none of these projects operates in a vacuum. Their clients are also affected by mass media campaigns and the work of other programmes in the community. So while the extent of their influence on behaviour change cannot be accurately gauged, the projects do appear to be making some difference in this critical area.

ELEMENTS OF SUCCESSFUL PROJECTS AND RELATED CHALLENGES

In reviewing their experiences, the eight projects studied seem to share a number of common elements of success. However, in almost every instance where we can identify what works, we can also point to challenges that must be overcome.

Strong Foundations Foremost among the elements of success is the role of strong and determined people in getting things off the ground. Even in developed countries--particularly the United States--the response of governments to AIDS has often been criticized as too slow and too little. In these situations too, it was the efforts of highly committed, resourceful and energetic individuals and private organisations that spearheaded the response to the epidemic.

Reaching Out - But no matter how tireless or committed such individuals may be, the experiences of the projects studied also make clear that these efforts are surviving and growing because they have been successful in initiating links with a range of other institutions. Most projects have by now established liaisons with the National Aids Control Programme in their country as well as a variety of supportive relationships with both governmental and non-governmental organisations and the private sector. These institutions are a major source of information, educational materials, commodities, expertise and, in some cases, financial support.

The Role of Volunteers - While some organisations do operate with the assistance of paid staff, in almost every case the work of volunteers is, if not their primary resource, then an invaluable support in carrying out project activities. These efforts demonstrate that when provided with appropriate training, supervision and support, community members can play a vital role in educating their peers and caring for people with AIDS. However, for even committed volunteers to continue as active participants they need to receive some form of incentive. The challenge projects face, therefore, is not just how to provide salaries to paid employees, but how to offer volunteers a sufficient incentive for them to stay involved.

Access to Health Care - People with AIDS have intensified health care needs and the population at large needs to know where they can go for HIV testing and counselling. By establishing links with the local health facilities, projects are offering an important service to their clients by providing access to services and medication that might not otherwise be available to them. However, in situations where the health care infrastructure is already overstretched and suffering from shortages of staff and commodities, the projects are faced with an almost perpetual need to find new and varied sources of care for their clients.

Training and Support - One important element present in varying degrees in all the projects studied is counselling. By providing clients with opportunities to participate in individual and, more importantly, group counselling sessions, projects are helping to dispel a sense of isolation and frustration often experienced by those affected by AIDS.

COMMON CONSTRAINTS - All of the projects studied are operating under significant constraints in terms of resources. Not only is funding often insufficient, sporadic or at times absent, but projects also face perpetual shortages of materials and commodities. Those that support home-based care lack medicines and supplies to give to patients, while those carrying out information programmes lack educational materials--especially materials that are culturally appropriate and in local languages and simple formats that can be easily understood by their clients. And project staff consistently face the problem of insufficient transport to enable them to effectively carry out their work.

Besides trying to meet the immediate needs of their clients, all the projects are grappling with the growing phenomena of orphaned children. In addition to the many young people already at risk, the fear of who will care for their children when they die and how they will be able to stay in school haunts parents already affected by the disease. The traditional resilience of the extended family is hard pressed to meet the need--especially in urban areas where people often live far from their kin. Beyond supporting family networks so they can increase their capacity to care for children in need, one of the greatest challenges these organisations face is how to establish substitute mechanisms that can provide children not only with physical care, but with the emotional, psychological, and social support they need.

If you're interested in getting a copy of the complete report or for more information on the Community Based AIDS project, please contact publications@popcouncil.org

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This page updated on
19 October, 2007