|Partners in Prevention: International case studies of effective health promotion practice in HIV/AIDS (Best Practice - Key Material) (UNAIDS, 1998, 84 p.)|
by Dr Elizabeth Madraa, Programme Manager, STD/AIDS Control Programme,
Ministry of Health, and Major Ruranga-Rubaramira, Assistant Administrator,
Coordinator, Ngeni National Guidance and Empowerment Network of
PLWHIV/AIDS in Uganda, Joint Clinical Research Centre, Kampala.
Uganda ranks among those countries hardest hit by HIV/AIDS. Despite this, the country is fortunate to have strong political support for the control of the epidemic and a government policy of openness on AIDS. This has prompted a number of intervention strategies such as political involvement, the establishment of the Uganda AIDS Commission and National AIDS Control Programme, encouraging community response and involvement, a multisectoral approach, and fostering research. Various studies have shown that today in Uganda there is a high level of HIV/AIDS awareness, over 80%. There is also encouraging news from population-based KAPB (knowledge, attitude, practice, behaviour) studies carried out in various districts in the country, which show a change in sexual behaviour particularly among the youth.
OVERVIEW AND CONTEXT
It is estimated that there are 1.6 million people with HIV are living in Uganda, which represents 8% of the total population and around 15% of all sexually active men and women (UNAIDS 1997). The reported cases of AIDS at March 1996 was 48,312 (Uganda Ministry of Health 1996), although it is suggested that the number of AIDS cases is more likely to be around 500,000. Surveillance data also show that there are much larger numbers of young women with AIDS than young men and there is a concentration of cases of AIDS in the city areas, especially around the capital, Kampala, in southern/central rural areas, and in the war-torn district of Gulu in the North (Uganda Ministry of Health 1996).
Some information about Uganda
Uganda is one of the countries of East Africa, bordered by Sudan in the north, Kenya in the east, Tanzania in the south, Rwanda in the south-west and Zaire in the west. In 1996, Uganda had a population of about 21.3 million people with four main ethnic groups (Bantu, Luo, Nilo-hamites, and Nilotics) and over twenty tribes. The cultures are as diverse as are the tribes. The majority of Ugandans are Christians (Catholic, Church of Uganda, Orthodox, and Seventh Day Adventists), with Moslems forming the minority. There are strong cultural ties among the tribes of Uganda giving rise to tight but open intertribal communities. Politicians have used this in the past as a divisive element, giving rise to a number of civil wars and tribal stress. The civil wars have directly affected the economic status of the country, resulting in high poverty levels in some war-torn zones. This has hampered the delivery of social services like health.
Uganda is a developing country with a gross domestic product (GDP) per capita income of about US$160, 40% of which is non-monetary. Ninety-one percent of Ugandans live in the rural areas, with the majority involved in subsistence farming. There is a clear difference between the urban rich and the rural poor, with the literacy level low in rural areas. About 49% of the people have access to basic health services. Although Uganda has gone through much political turmoil over the past ten years, the country has been through a period of recovery that has improved the infrastructure and social services. The country recently accomplished the election of the first democratically elected President.
History and structure of the community-based response
The first AIDS cases in Uganda were recognised in 1982 in Rakai district, situated in the south-western part of Uganda. Although AIDS was recognised at this time, there was a 'silence' about the disease until 1986, when President Kaguta Yoweri Museveni came to power. This long period of silence coupled with the political turmoil could have contributed to the rapid spread of AIDS in the country. Soon after gaining power, President Museveni recognized, acknowledged, and was open about the existence of AIDS in the country. He immediately requested a donor's conference, which was held in Kampala, and this led to the establishment of the National AIDS Control Programme (NACP) within the Ministry of Health with support from WHO's Global Programme on AIDS (GPA). One of the largest AIDS prevention campaigns ever mounted in Africa soon followed. This campaign dealt almost exclusively with prevention of transmission and advised people to 'love carefully' and 'love faithfully', giving little regard to the fact that there were already people being diagnosed with HIV and AIDS. The impact of this campaign enhanced fears of contagion among the population and resulted in discrimination and stigmatization of people with HIV/AIDS. As a result, families failed to care for their loved ones and many health care workers expressed prejudice in using scarce resources to care for AIDS patients who were 'going to die anyway'.
In some areas, community groups began to spring up where there was a gap in services. For example, the Christian church spearheaded AIDS care services in Uganda, led simultaneously by religious sisters at Kitovu and Nsambya Hospitals. These two hospitals, Kitovu in a rural area and Nsambya in an urban area are situated where the HIV epicentre was first located. Government efforts to care for AIDS patients were spearheaded by a physician, Dr. Katabira, responding in 1987 to the increasing numbers of AIDS patients he was seeing by setting up the first AIDS referral clinic at Mulago government hospital. It was also in early 1987 that Christopher Kaleeba, who had been diagnosed with AIDS while studying in England the previous year, died at Mulago hospital. Prior to his death, he and his family had experienced stigma and rejection, which had led them to seek support and to want to share their agony with other families with similar experiences. They formed a support group named TASO (The AIDS Support Organization) and began to advocate for care and support, not only for AIDS patients, but also for persons and families living with HIV, by example and practical demonstration of what could be done. This triggered a powerful care and support movement under the slogan 'living positively and dying with dignity'.
AIDS service organizations (ASOs), covering activities ranging from awareness promotion, counselling and testing, legal advice, and care and support of infected and affected persons, sprang up with moral support and technical guidance provided by the government through the NACP. This trend has continued, allowing Uganda to demonstrate a unique partnership which has been the foundation of the current strides made in the national HIV/AIDS response. There exists today in most urban areas in Uganda a comprehensive approach to respond to the HIV epidemic, with both government and community groups involved in providing a range of programmes. These ASOs or NGOs include:
· women's groups: Uganda Women Foundation Fund, Slums AIDS Project, Uganda Women's Effort to Save Orphans;
· religious groups: World Vision, Islamic Medical Association of Uganda, Baptist Student Ministry, Uganda Catholic Secretariat, Protestant Medical Bureau, Church Human Services Association (Church of Uganda);
· youth groups: Uganda Youth Network on AIDS, Uganda Youth Development Link, Uganda Youth Anti-AIDS Association;
· other organizations: TASO, AIDS Information Centre, AIDS Care Education and Training, Uganda Red Cross, Federation of Uganda Employers.
The majority of these groups and organizations are providing information, education, care and support of infected and affected persons as well as counsellor training. Government and mission hospitals provide hospital care, and there many families and community groups which are providing much needed home care for people with AIDS.
The stage for the Ugandan community response to HIV/AIDS may have been set well before the onset of the HIV epidemic. The people of Uganda have had well-established community structures: one belonged to a family and the family belonged to a clan and the clan belonged to a tribe. Another example is the unity within a given village. It was easy for a neighbour to be assimilated into a family to which he or she did not necessarily belong even as a clan member. These structures had well-established cultural norms, which made it easy for the community to respond promptly to any threats, whether these were natural disasters, wars or epidemics. The onset of the HIV epidemic was seen as a threat to the existence of the community. Initially, communities turned to supernatural powers, and when they saw no immediate response they turned to the government. Once activated, the government responded immediately to the community concern. The Ministry of Health was charged with the responsibility of handling the epidemic by developing intervention strategies, and its medical services were responsible for the treatment of AIDS-related complications. They were also charged with the responsibility of ensuring that there was screened and safe blood for transfusions.
CONCEPT OF PREVENTION
The first health promotion campaign started with a cultural signal of the beating of the drum on radio and television to warn people of the HIV/AIDS danger. Due to similar cultural influences, most of the original messages were threatening and embedded in fear. The initial response was the responsibility of the NACP, which was charged with mobilization of resources, developing intervention strategies and surveillance of the epidemic. These included the development and production of posters, pamphlets, booklets and use of mass media.
The epidemic of HIV became increasingly difficult to monitor, and the Ministry set up a surveillance system specifically to monitor HIV/AIDS trends in the country. Although the district hospitals were charged with passive surveillance, the district health educators were responsible for the implementation of health promotion interventions. Drama, songs, films, and even the churches and mosques were used to pass on HIV/AIDS messages. Both these government and cultural institutions made it easy for the messages to get to the communities. This was primarily through the political structures of local counsellors who through their administrative systems assisted in setting up strategies at the local level. Alongside the government response to the epidemic, the community started a number of intervention strategies to complement government efforts.
The approach to prevention has changed over time as new ways of imparting information and education have been developed based more on positive messages. Early in the epidemic, the NACP invited a prominent Ugandan pop musician with HIV/AIDS, Philly Bongoley Lutaaya, who was living in Sweden, to return home to Uganda to help with the prevention response. Increasingly, PLWHAs have become involved as educators within their communities, and this approach has helped to reduce stigma and community fear as well as build community awareness of HIV and strategies for behaviour change. Prevention and care are to a large extent integrated at the community level, where community groups and organizations are providing both education to those at risk of HIV and support to those most affected.
There are currently two main strategies for health promotion in Uganda. These are promotion of safer sex behaviours and the prevention and treatment of sexually transmissible diseases (STDs). Strategies to promote behaviour change include condom marketing and distribution, radio and TV advertising, peer education, and use of PLWHAs as educators. There is also an increasing focus on prevention and treatment of STDs as part of a broader approach to HIV/AIDS health promotion, and the STD Control Programme has now merged with NACP at the national level, allowing for a more strategic approach to management of sexual health.
The use of a multisectoral approach and community involvement has enabled the government to undertake a greater range of prevention strategies. With the increasing prevalence and growing numbers of people with HIV/AIDS and deaths from AIDS, and the potential socio-economic impact of the epidemic, the government was convinced that this was a problem that could not be handled by Ministry of Health alone. As a result, a range of sectors, government ministries, NGOs, both local and international, CBOs, religious organizations and other bodies came together in a multisectoral setting to consolidate care and prevention interventions. With this approach, individuals at the grassroots level have had greater access to care, counselling, education services and prevention information, and this has enabled many more people to access information on factors that predispose them to the risk of HIV infection. These factors include the cultural barriers to behaviour change and risk situations, such as uncontrolled alcohol consumption, multiple sexual partners, and unsafe sexual practices.
The success of Ugandan prevention efforts would not have occurred without the intensive participation and involvement of the community leaders. After an initial sensitisation and training, community leaders were involved in the mobilization and dissemination of health promotion activities. Community groups have also used innovative means in music, dance and drama to bridge the knowledge gap, and to appeal to people's emotions and change their attitudes. Local talented artists have produced plays in local languages to appeal to different audiences.
Involvement of PLWHAs
The willingness of PLWHAs to participate in the prevention interventions contributed to the positive coping mechanisms for those who are infected and silent. It also empowered individuals, especially young people, to take personal responsibility for remaining uninfected. This willingness also contributed to the high level of acceptance PLWHAs and the establishment of the Legal and Ethics Network. This network helped to respond to discriminatory practices that threatened the rights of PLWHAs in workplaces and within their communities. PLWHAs have also formed their own networks to respond to care and prevention intervention.
A prominent example of a PLWHA organization is the Philly Lutaaya project. This initiative is named after the musician Philly Bongole Lutaaya who, after being diagnosed with AIDS, spent the last year of his life leading a campaign to give AIDS a human face. In this initiative, young men and women living with HIV volunteer to be trained in communication skills and then offer testimony of their experiences in order to mobilize communities to change risky sexual behaviour and reflect on their attitudes towards PLWHAs in their own communities. They also carry the 'Living Positively' banner from village to village, through music, drama and face-to-face discussions. This has proved to be a crucial tool in a country where a large percentage of rural people cannot read or write. It has also given AIDS a human face in Uganda.
COMMUNITY AND GOVERNMENT
As important aspect of the Ugandan response has been the collaboration between a broad range of community, government and donor agencies in the struggle against HIV/AIDS. The openness of the government has created a conducive environment for interested agencies and organizations working in HIV/ AIDS activities to work together. Included here are a large number of international donor agencies that have contributed financially and offer technical assistance to the Ugandan government and community organizations. The government policy to adopt a multisectoral approach in the management of HIV epidemic has led to the following:
· acceptance of sharing responsibilities in the HIV/AIDS prevention intervention and care programmes;
· the decentralisation of implementation programmes, and the integration of HIV/ AIDS services into existing structures;
· establishment of a national coordinating body, the Uganda AIDS Commission, for all HIV/AIDS programmes in different ministries, NGOs, CBOs, etc.;
· resource mobilization at local, national and international levels.
The Ugandan AIDS Commission was established in 1992 to coordinate national policy and provide advice to a range of other organizations, including the NACP. The Commission comprises twelve members from a cross-section of government departments, including the Ministry of Health, NGOs and religious organizations. As part of the structure of the Commission, a broad-based Advisory Committee and a number of technical committees have been established. These committees focus on speciality areas such as prevention and control, care and support, policy and ethics, research and development, and traditional practices. The Advisory Committee includes representatives from NACP, PLWHA groups and UNAIDS.
The partnership between government and community was formalized early in the epidemic when Noerine Kaleeba, one of the founders of TASO, was appointed to the first National AIDS Control committee. This committee comprised representatives from the major religious communities in the country. Increasingly, PLWHAs began to be represented on all major committees as they became more visible and involved in the response. PLWHAs are also represented on the Uganda AIDS Commission and are appointed by the President. They are also represented on all major policy and strategy committees, such as the law, ethics and HIV.
As has already been mentioned, the community response to HIV in Uganda was triggered by the need for compassionate care, and, as the epidemic grew, community response became more and more oriented toward care and support. It is not surprising, therefore, that research efforts in the country have been influenced by this need felt by the community. Research projects whose agenda had not been planned to include care and support components have had to revise these agendas after realizing that care was a very appropriate entry point into communities who were having to bear an increasing burden of care.
Numerous research projects have been carried out ranging from behavioural KAPB studies, behavioural intervention studies, and clinical trials. There have been, for example, two notable research projects situated in rural southwest Uganda: a Medical Research Council project in Kyamuliibwa, Masaka district; and a Columbia University collaborative study in the Rakai district. These have demonstrated positive collaboration between government and external researchers, and have been instrumental in boosting the research capacity of the Uganda Virus Research Centre through staff training and support, infrastructure development and providing laboratory services to the National AIDS Control Programme, mission hospitals and other NGOs.
The initiation of these two research projects involved extensive community consultations using the popular system of governance known as 'local resistance committees'. Researchers working on these projects live in the communities where the research is conducted. Over the years, research findings from these projects have been used to structure community prevention services. For example, in response to findings and community requests, two projects are providing STD care and counselling as well as home care for AIDS patients.
Community-oriented intervention studies like the recently concluded mass treatment of STDs and the ongoing comparison study between treatment of STDs and health education alone have cemented the researcher-community relationship. These studies were set up as community-based surveillance studies periodically (every six months) to monitor the epidemic in the community. Observations from these studies have been crucial in substantiating the NACP sentinel surveillance data that shows a fall in HIV prevalence. These projects have also shown a fall in incidence rates among specific age groups, in particular young people.
MEASURES OF SUCCESS
The political commitment of the Government of Uganda, combined with the efforts of the donor agencies, bilateral and multi-lateral, international and local NGOs, CBOs, PLWHAs, and religious organizations in the struggle against HIV/AIDS in the last decade has contributed to the following successes.
· The HIV/AIDS awareness level is above 80%. This has been recorded by several surveys carried out within the country, recording a positive response to preventive strategies such as condom use, and the acceptability of and demand for condoms. In all peripheral health units, there is a demand for sterile and/or disposable syringes and needles. In the communities, the Traditional Birth Attendants demand protective hand gloves for delivery. Traditional surgeons for circumcision use sterile or one knife for each candidate instead of the old tradition of one knife for many candidates.
· There is an increased demand for voluntary testing and testing facilities. More and more couples are being screened before marriage. Also a high demand for condoms is reported at testing sites.
· The increased targeting of youth groups has contributed to the decline in HIV incidence among the age groups of 13 - 19 and 19 - 24 years.
· Increased counselling services have increased coping mechanisms and the adoption of preventive measures among the PLWHAs.
· Formation of independent networks of PLWHAs has led to increased self-esteem, a sense of belonging, shared confidentiality and breaking of the stigma associated with HIV/AIDS.
· Uganda stands out as the country in the 'south' with the highest number of open PLWHAs, almost similar to the gay community in the 'north'.
· Collaboration between government, NGOs, CBOs and religious organizations has led to capacity-building, channelling of resources and funds from government to NGOs for implementation of HIV/AIDS interventions, development of mid-term plans, support and supervision, technical assistance, training and monitoring, and evaluation.
· This has led to the formation of spontaneous self-help groups - NGOs, CBOs and AIDS service organizations - which has meant better coverage of services and prevention information to the grassroots throughout the country.
· Government has developed a strategy of joint action with international donor agencies, e.g. the Uganda/UNDP programme on HIV/AIDS prevention and poverty reduction, the World Bank District Health Service Project/Sexually Transmitted Infection Project, and the MILDMAY International in the field of holistic care and support for the terminally ill.
· Requests led the government to establish a palliative care centre for the terminally ill with stress on PLWHAs.
The STD/AIDS Control Programme in the Ministry of Health has been estimating the HIV prevalence rates using antenatal sentinel populations since 1989. Recent studies have shown declining prevalence rates among women attending antenatal clinics in some sentinel sites. Other studies carried out by Mulago Hospital among pregnant mothers and by the AIDS Information Centre among people who come for voluntary HIV testing and counselling have also shown declining HIV prevalence rates. Through this surveillance system, declining HIV trends in the urban sentinel sites have been observed. Collaborative evidence from a cohort study in Kyamulibawa-Masaka has also shown declining HIV incidence among young adult men and women living in the rural areas in Masaka district.
These observations prompted the carrying out of population KAPB surveys in five districts in the country to ascertain the probable explanation for the decline. The following interesting issues came out from these surveys:
· A high proportion of respondents (68%) reported change in behaviour in the last five years in response to HIV/AIDS. The reported changes were 'sticking to one partner', faithfulness, abstinence, and condom use.
· There was a reported increase in overall condom use. In the capital city Kampala, for example, the increase was from 7% in 1989 to 24% in 1995. This observation was more pronounced among the age group 15 - 19 years, where the rate among females has more than trebled.
· There is high condom use with non-regular partners. In Kampala, this was 64.2% among the males.
· There has been a significant delay in the age at first sexual intercourse. A smaller proportion of the 15 - 19 years age group report sexual intercourse compared with 1989.
AT WHAT COST?
Funding for HIV/AIDS programmes in Uganda amounted to US$700,000 in 1995/96. This amount will exceed US$1.1 million in 1996/97. There is substantial funding provided for the national Sexually Transmitted Infections project for the period 1994 through to 2000. This is in addition to the funding for HIV/AIDS activities. In terms of opportunity costs, resources in the health sector to fund to HIV/AIDS prevention activities may be viewed as a diversion of funds and resources from the economic sector. Further cost analysis, however, could focus on whether the improvement in the knowledge and behaviour change among the communities has been the result of prevention measures or the control measures resulting in the provision and improvement of the existing health care delivery services systems. External funds have also greatly enhanced Uganda's support of HIV/AIDS prevention activities since 1986. There have been various and unconsolidated levels of support and it is difficult to determine a definite cumulative cost of HIV/ AIDS prevention programmes.
In the achievement of the successes mentioned above, Uganda has learnt several lessons. The key lesson was that effective HIV prevention cannot be managed by one sector. HIV/AIDS is not only a health problem and, therefore, the intervention cannot be based only on public health approaches. The large numbers of PLWHAs, orphans and widows have had a significant socioeconomic impact and, as a consequence, the social impact of the HIV epidemic on the government, social services and the labour force could not be ignored. The country, therefore, had to change strategies and adopt a multisectoral approach to prevention of HIV/AIDS.
Another lesson learned was that without the active participation and involvement of the community, personal responsibility for HIV prevention could not be achieved. The involvement of the community leaders in any intervention is crucial, because they already belong to and lead an existing community, and this enables them to play a catalyst role in mobilization and sensitization. Prevention without care of PLWHAs is 'like pouring water in a basket'. It was necessary to take care of and involve PLWHAs at all levels as one of the key preventive measures. It takes two people to transmit the virus: one who is infected and another who is not.
In the implementation of the prevention interventions, there are areas that are lacking: (1) health promotion messages focused on the uninfected and the infected were not targeted adequately; and (2) lack of basic treatment and care services for PLWHAs. There is also an apparent gap in intervention between: (1) urban and rural, e.g. media coverage is wider in the urban areas than in rural areas, and AIDS service organizations tend to prefer areas of high infrastructure, usually urban areas, and, as a result, condom acceptability, accessibility and use is higher in the urban areas than in the rural; and (2) female and male accessibility to intervention messages, e.g. in both urban and rural areas, the males tend to be better informed than the females. These areas will need to be addressed in future programmes within Uganda.
WHERE TO FROM HERE?
There are a number of areas to focus on in the future, which will assist the government and communities to continue to respond effectively. These are:
· the current STD/HIV/AIDS surveillance system needs to be broadened and strengthened through adequate financial and technical support to ensure its sustainability;
· PLWHAs must be empowered to manage their own organizations and provide support to infected and affected families;
· health promotion interventions should continue with specific emphasis on rural areas and on targeting youth, women and other vulnerable groups, and condoms and other HIV-related services need to be provided to rural communities;
· the community requires more testing centres, counselling and social support services, and the government will need support from local and international donor agencies to meet this demand;
· there is need for regional cooperation to address issues regarding policies, intervention strategies, research, resource mobilization and equitable allocation of resources to HIV/AIDS prevention;
· asic medical and nutritional care for PLWHA needs be made available and accessible.
Uganda has a substantial epidemic where one in ten adults may be infected with HIV. There is still a long way to go to meet the needs of people and communities affected by this epidemic. In the last decade the basis of good prevention programmes has been established; however, there are some key areas on which a focus needs to be maintained.
First, government ownership of the issue of HIV/AIDS and political commitment to resource mobilization and facilitation in intervention programmes has been crucial in the development of HIV/AIDS prevention intervention strategies. In addition, the collaboration between multilateral, bilateral donor agencies and NGOs in supporting HIV/AIDS initiatives has been a vital part of Uganda's effort to curtail the epidemic. These partnership arrangements need to be maintained if Uganda is sustain its high level of community awareness of HIV and achieve a continuing decline in its HIV incidence rates. Second, community involvement at all levels is a key element in making prevention work, as is the development of strong networks between PLWHAs and HIV/AIDS intervention programmes. These need to be established and strengthened to enable the effort to continue. Finally, it has been demonstrated that a strong and effective surveillance system is an important prevention factor in monitoring trends and evaluating interventions, as well as identifying the successes. These systems need to be adequately resourced and have sufficient expertise to ensure that programmes can be developed and modified on the basis of accurate and up-to-date information.
Uganda Ministry of Health 1996, HIV/ AIDS Surveillance Report, March and May.
Uganda Ministry of Health 1997, HIV/ AIDS Surveillance Report, March.
Uganda AIDS Commission 1994, National Operational Plan.
Uganda AIDS Commission 1993, The Multi-Sectoral Approach to AIDS Control in Uganda.
Uganda Ministry of Health 1996, A Report on Declining Trends in HIV Infection in Sentinel Surveillance Sites in Uganda October.
UNAIDS 1997, UNAIDS Country Profile.