|Partners in Prevention: International case studies of effective health promotion practice in HIV/AIDS (Best Practice - Key Material) (UNAIDS, 1998, 84 p.)|
by Anne Malcolm and Gary Dowsett
HIV prevention programmes delivered through community organizations in partnership with government are demonstrating their effectiveness in reducing the transmission of HIV and in increasing support and awareness of HIV among communities. Although the approaches differ between countries, it is clear from the case studies presented here that there are a number of common elements crucial to developing and sustaining successful prevention programmes. These are:
· political will and government support;
· community mobilization and involvement;
· alliances and networks between community agencies, government and private sectors;
· community capacity-building;
· involvement of PLWHAs;
· development of safe and supportive environments;
· multisectoral approaches;
· involvement of researchers and evaluation of programmes.
Community organizations comprise a range of differing entities and their capacity to function effectively in the context of HIV/AIDS prevention depends on their mandate and representativeness within the community in which they work. Community organizations are essentially community-based organizations (CBOs) that work closely with communities, employ people from within these communities, and may or may not be managed by people from these communities. Non-governmental organizations (NGOs) are organizations independent from government and are often involved in grassroots activities. Other terms such as AIDS service organizations (ASOs) are used to describe those organizations not part of government services.
The distinction between CBOs, NGOs and ASOs is not clear, and these terms are used interchangeably. NGOs working in HIV/AIDS cover a broad range of organizations. These include organizations formed through interest groups and by people most affected by the epidemic such as TASO in Uganda initiated by PLWHAs, EMPOWER in Thailand established by sex workers, and AIDS Councils in Australia set up by gay communities. NGOs may also be large international development organizations such as the Red Cross, Oxfam, or the Salvation Army, which often operate independently of the communities in which they work, but fund organizations that work closely with communities.
Many community-based HIV/AIDS organizations were established through concerns within their communities and because of a lack of any other initiatives to address emerging epidemics. These often operate as 'self-help' organizations to alleviate social problems through action within their communities. These organizations tend to involve members in activities that reflect the needs of their specific communities, and in the case of HIV/AIDS these have often functioned with volunteers from affected groups within the community. For these reasons, many HIV/AIDS CBOs are characterized by cultures of commitment, volunteerism and advocacy, where there is an emphasis on involvement and participation of those most affected in decision-making and a focus on human rights and advocacy for vulnerable and marginalized groups (Altman 1994).
In many countries, HIV/AIDS CBOs have grown significantly in scope and responsibility, not only within their communities, but also in their capacity to influence at a broader level. As a result of the epidemic, many CBOs are now much larger organizations, with substantial funding and resources, and they provide a broader range of programmes than was originally intended. For some groups, this has meant moving further away from the communities within which they were initially established; for others, this has meant developing new ways to maintain participation and involvement of their constituents. The increasing influence of these organizations at a broader level may be due partly to the networks that have been established between organizations, which strengthen their sphere of influence, but it is also due to the significance of their intervention programmes within the communities in which they work, which have become models for other communities.
CONCEPT OF PREVENTION
HIV/AIDS health promotion has evolved through a number of stages since the beginning of the epidemic. The initial stage was characterized by programmes focused on individual risk and responsibility through provision of information, awareness-raising, campaigns and, sometimes, fearful messages. As the epidemic progressed, it was clear that the efforts to maintain behaviour change were paramount, and health promotion messages needed to focus on sustaining safe behaviour. Greater understanding of the cultural and social dimensions of behaviour were crucial to developing more sophisticated responses aimed at facilitating community support for changed behaviour. After more than a decade, the epidemic in many countries has resulted in a sense of complacency as people grow tired and despairing of an end to the epidemic, and messages are having less and less impact on behaviour. Younger generations may think that, for them, HIV/AIDS is less relevant. Also, in countries where new treatments are having a significant impact on the health of PLWHAs, AIDS is less likely to be the outcome of an HIV infection, and uninfected persons may fear infection less than they once did. This multiplication of responses to the extending but ever-changing epidemic has been termed the 'post-AIDS epidemic', not because the epidemic is over but to acknowledge that there are multiple perceptions and divergent experiences of the epidemic, and new initiatives are needed to rekindle the sense of immediacy among those who have been living within the epidemic for many years (Dowsett, 1996). This diversifying epidemic makes the problem of prevention education and health promotion for PLWHAs a process that is becoming more complex and more diverse.
In many countries, the focus of HIV/AIDS health promotion has broadened to include sexual health and reproductive health, and, as described in the Canadian report, a shift from a health promotion approach to population health. Broadening the approach which includes the recognition of the multiple social and environmental factors that impact on health outcomes is an important shift in furthering the response. This is also termed an 'holistic' approach, where HIV is seen as part of comprehensive primary health care that takes account of the social and environmental factors impacting on general health. This has been the focus of community building and development, key strategies used in many countries.
In this, community organizations have had a primary role in initiating responses that best meet the needs of their communities and begin to change structures that may improve health outcomes of their populations. Redressing poverty and increasing education programmes are good examples of structural approaches to improving health outcomes. An example of such an approach is the income generation scheme, which in many developing countries has been used to provide alternative options for women whose only opportunity for income has been through sex work. These schemes are improving the status of women and developing a more secure future for families, as well as reducing poverty.
It is clear that the strategies used in HIV/AIDS health promotion have also evolved over the past decade in many countries. The notion of 'individual risk' and 'risk groups' has been replaced by collective responsibility and a greater understanding of the impact of social and cultural contexts in which people live and how these environments influence beliefs and behaviour. The focus for health promotion has consequently shifted from the individual to the community, and strategies such as the development of 'enabling environments' and peer education are providing more support for sustained behaviour change. These strategies also work to strengthen communities and facilitate their development and sustainability.
The need to create health-promoting environments has long been a goal of public health; however, it was the Ottawa Charter for Health Promotion in 1986 that finally established a comprehensive approach for public health action. This approach acknowledged the social and environmental factors that influence individual behaviours, and included the strategies for health promotion programmes: build healthy public policy; create supportive environments; strengthen community action; develop personal skills; and re-orient health services. These strategies are being applied through many of the programmes described in this report and, together, they have created significant changes in people's behaviour.
Four key models used in HIV/AIDS health promotion programmes have been described. These are: (1) the information-giving model; (2) the self-empowerment model; (3) the community-oriented model; and (4) the social transformatory model (Aggleton, 1993). These approaches are not necessarily mutually exclusive, but differ in terms of the processes they use and their outcomes. Information-giving and self-empowerment models are most commonly used in HIV/AIDS work; however, with the need for broader community involvement and social change, community-oriented and social transformatory approaches are more often being utilized.
The shifting emphasis in the use of these models is in keeping with the re-focusing of health promotion from individual to collective responsibility, described in the Canadian and Thai reports, highlights the need to consider health promotion programmes within a continuum where particular approaches may be used depending on the outcomes desired. For example, within a community-oriented approach, there may also be the need to provide information and self-empowerment through written material and counselling. Similarly, campaigns and pamphlets may complement social transformatory approaches.
The methods used by CBOs to educate and inform vary widely. These range from the provision of written and visual information through pamphlets, posters, campaigns, videos, films and drama groups, to personal contact such as public speaking, counselling, direct outreach and group support. Campaigns and social marketing are essentially top-down approaches that have been used in HIV/AIDS education with varying success. The '100% condom campaign' is an example of such an approach. This campaign was conceived by Thailand's national AIDS programme and was successful in raising awareness and enforcing behaviour change through the cooperation of a number of sectors within the country. Other similar top-down approaches have been used by national governments and are often without sustained success, in that they may raise awareness, and sometime fear, but may do little to change how people behave in the longer term. It is clear that the cooperation and participation of communities in such campaigns can help to ensure that educational messages are embedded in daily practice and clearly understood. Other educational approaches, however, need to accompany social marketing campaigns, as was demonstrated in the Thai condom campaign. Here, brothels and community groups actively supported the campaign through the provision of condoms and information on HIV/AIDS.
Peer-based education is an approach commonly used within communities to develop personal skills and the capacity of these communities to make behaviour changes. The development of organizations of sex workers, injecting drug users, young gay men, and women who have lost their husbands are examples of how people can come together to develop innovative ways of working with their own communities to prevent further transmission of HIV. Some of these innovative strategies have included the use of drama. For example, in Vanuatu, in the Pacific, a small group called 'Wan Smolbag' invites people from the community to develop educational plays based on HIV and other health issues, which they then perform in their communities. Similar drama initiatives include the 'White Line Dance Troupe' in Thailand, which performs in gay bars; and MAPS, an audio-drama programme aimed at rural people in northern Thailand. The development of visual material such as comics has also been a successful strategy used in a number of communities. Here, stories are developed by particular groups within communities and are depicted through images and language appropriate for those people. This has been an effective way of reaching hard-to-reach groups.
The use of peers as outreach workers has been a widely used strategy to ensure that messages are appropriately communicated and the needs of the target group are better understood. Furthermore, this approach operates from the principle that there is an equal relationship between peers, which can facilitate greater learning and awareness, as well as support for ongoing behaviour change. Peer education is often instituted within a community development approach, which can assist to build the capacity of communities to respond and begin to change community norms through increasing the skills and knowledge of individuals. Examples of this approach include the use of peers to target sex worker in bars, outreach workers to reach men who frequent public places for male-to-male sex, and PLWHAs to provide information and support to other infected people. These activities not only provide information to peer groups, but people from these groups may in turn become involved in acting as educators within their own networks. The use of these strategies has been shown to increase awareness among those whose behaviour places them at risk of infection and to facilitate the development of a culture within communities which supports safe practices.
There has been an increasing focus within health promotion programmes on PLWHAs, not only as recipients of, and participants in, education programmes, but also in their involvement in the design and implementation of interventions targeting both HIV-positive and HIV-negative people. Peer-education strategies, such as the use of HIV-positive speakers and support groups for positive people facilitated by peers, have been successful in promoting awareness and understanding of risks associated with HIV/AIDS as well as increasing self-esteem and well-being of those involved.
Approaches to the provision of prevention and care services have been integrated in many countries at the community level. For communities with a high prevalence of HIV and AIDS, messages to prevent further transmission of the virus are an essential part of support to people already infected. In these communities, contact with people with HIV/AIDS may be more frequent, and this can be a powerful strategy to prevent further infection. It is also the case that in many communities resources are limited, and the use of prevention and care programmes to provide an integrated service is a cost-effective option.
Strategies to develop supportive environments are becoming essential components of many health promotion programmes, including the need to ensure the provision of basic health and social services. Legislative changes, such as decriminalizing prostitution and homosexuality, are examples of law reform that promote greater acceptability and openness towards people who may be isolated and hidden within communities. Similarly, the development of policy and frameworks, such as harm minimization, provide a supportive approach to those whose behaviour places them at risk of HIV. For example, needle exchange programmes based on a non-judgmental approach towards drug users have been used successfully in many countries to reduce transmission of HIV through changing people's practices of sharing contaminated injecting equipment. Other policies and legislation to reduce stigma and discrimination have helped to increase access for those most vulnerable to much-needed information and services.
THE ROLE OF PLWHAS
PLWHAs have a crucial role in health promotion programmes. Their contribution as educators through public speaking, counselling, peer support and information, and as advocates and policy makers has resulted in greater acceptability and visibility of those infected within communities. Increasingly, PLWHAs are part of government decision-making bodies. Their inclusion is seen as essential for good policy decisions and to ensure that government decisions are properly informed and cognizant of the needs of those most affected.
A common strategy has been the utilization of PLWHAs as public speakers. This can have a profound impact on others' behaviour, as meeting a person infected with HIV provides a reality to what is often perceived as an abstract or distant issue. The role of positive people as educators is illustrated in the comment that the spread of HIV is affected by 'whether conditions exist for people to tell their stories of being infected, and their stories of changing their behaviour to prevent themselves from being infected' (Reid, 1992: 30). Prevention strategies are recognizing the need to target people already infected rather than focus only on those uninfected. The inclusion of PLWHAs in community efforts to prevent further transmission of HIV has been a feature of successful responses to the epidemic, and prevention strategies are recognizing the need to target people already infected rather than focus only on those uninfected.
The formation of PLWHA groups has been an important feature of prevention responses. These groups were initially established to provide mutual support, but have come to represent the interests of people with HIV/AIDS, and in many situations to act as advocates for better services and policies as well as establishing direct services for their members. They have also contributed to raising public awareness within their communities. TASO in Uganda and New Life Friends Association in Thailand are examples of PLWHA organizations which provide a range of prevention, care and support services to their communities. Other organizations like National Association of People with HIV/AIDS (NAPWA) in Australia have a strong advocacy role and wield considerable influence at the national level through their involvement in policy and in the development of education strategies.
Government commitment to fighting the epidemic has seen the establishment of national control programmes in most countries around the world. Although many governments were initially slow to respond and set up national programmes, they now have accepted the responsibility to provide policies, education campaigns, health and social services, as well playing a central role in coordination and the provision of technical support to those working in the field. Political will to act through defining national strategy and a coordinated response has been shown to be crucial for the development of effective prevention. The establishment of national AIDS councils or control programmes with an advisory and/or strategic function in many countries, and often chaired by senior government officials, reflects this willingness to act to prevent what is seen as a serious public health issue.
Increasingly governments are seeking to work closely with community organizations and are providing funding to enable these groups to continue to work directly with their communities. Partnerships between communities, governments and people most affected by the epidemic have resulted in a greater understanding of the needs of these communities and the specific approaches required to have an impact on people's behaviour. Whether these approaches are locally based or have a national focus, they need to be developed within the context of this partnership relationship, ensuring that education messages are relevant, understood by those who provide funding, and supported by those at whom they are targeted.
It is clear that the development of a multi-sectoral response is a key feature of successful prevention efforts. The collaboration of government departments, community organizations, PLWHA groups and sectors such as international donors, private industry and media has been shown to be an effective way of mounting a broad approach to managing the epidemic and initiating effective strategies. These broad coalitions are often effective in commanding a level of authority at a high levels of government, primarily due to the credibility and strength they derive from the affiliation of a diverse range of community groups. Examples of this kind of coalition with significant influence at a national level are the Malaysian AIDS Council, which coordinates 32 NGOs, the Australian Federation of AIDS Organisations (AFAO), which acts as a peak body for NGOs at the national level in Australia, and the Canadian AIDS Society in Canada. There are also many examples of the creation of alliances and networks within communities; however, while these are important to coordinate and conduct programmes at a local level, they are rarely able to exert influence outside of their communities towards government policy or national direction.
In the current global economic climate, funding for HIV/AIDS programmes is under threat as governments look to cut back spending and have other priorities for funding. It is also the case that international donors are looking to reduce or reprioritise funding arrangements. This is evident where donor organizations are shifting funds away from countries that have more stable epidemics toward countries with emerging and rapidly developing epidemics. Many community organizations rely on government and donor funding and are having to consider other ways to raise monies to continue to sustain their programmes and services. Fund-raising and the use of volunteers have been part of how many HIV/AIDS community organizations operate; however, these efforts are proving difficult to sustain in areas where resources are limited and where communities have been devastated by the epidemic. Developing new partnerships such as those with private sector organizations may provide an opportunity to continue prevention efforts; however, these would still need to be developed within broad national strategies and through a coordinated response.
ROLE OF RESEARCH AND EVALUATION
Partnerships between research institutions and community organizations has been a feature of many successful prevention efforts. These partnerships have primarily occurred between social researchers and community-based services, and functioned as a way to inform prevention efforts and assist those working in communities to apply a greater theoretical understanding to their work. These partnerships also provide the opportunity for social research to view more critically their approaches and to refine and develop new methods of inquiry.
Research conducted with affected communities in conjunction with community-based services has played an essential role in informing the development of appropriate strategies for the prevention of HIV. An approach commonly used in a number of countries is participatory action research, where small-scale projects are set up within communities and research is undertaken by community members. These projects derive their strength from the learning processes that occur between those involved, through the development of ideas and practices, and in the evaluation and critical reflection of these practices. This approach has worked to benefit many prevention programmes through the processes established to gather new information, and in the development of skills for community workers. It also provides a cost-effective way of evaluating and refining interventions.
HIV prevention research is an integral part of the national priorities, and funding for research is an important component of the government response to the HIV epidemic in many countries. Research institutions are playing an important role in the development of national policy through their participation on national committees and through their contribution to practical and theoretical understanding of key issues relating to effective prevention. Research evaluation of the effectiveness of prevention efforts has also been used to inform policy and the development of strategies at a local and national level. An example of this is described in the Canadian report, where measures have been developed to assess the impact of prevention programmes through community participation and strengthening the capacities of community organizations. The indicators developed assess organizations' capacity to develop mechanisms for increased participation and involvement in project planning and evaluation, through to developing coalitions and building alliances with other agencies.
It is clear from the case studies that these countries are not dealing with a single epidemic, that there are a variety of epidemics occurring, which requires a range of responses. These have presented differing challenges for communities and governments. Responses to newly emerging epidemics are requiring different prevention approaches than those used at a similar stage of epidemics in other countries. For example, in Thailand, responses to manage a relatively new epidemic have been derived primarily from adapting existing structures and approaches within communities, rather that looking to other countries for solutions. In these new epidemics we see the growing energy and commitment of communities in crisis and the development of partnerships and alliances between government and community groups. At the same time, however, countries like Thailand are also experiencing rapid economic development, which presents new challenges in relation to social dislocation and changes to traditional patterns. This significant social and economic change is testing the capacity of these countries to maintain an effective response to the epidemic.
Countries with mature epidemics, where patterns of infection are relatively stable, such as Canada and Australia, are beginning to consolidate practice and more critically analyze their efforts in order to address future strategies. These countries are also experiencing a growing sense of complacency, as rates of new infections fall and people begin to re-assess their level of risk of HIV infection. In this environment, there is also the risk that governments will begin to minimize their commitment to maintaining a specialized focus on HIV/AIDS and change the partnership arrangements that have been the keystone of a successful response.
This is evident in both Canada and Australia, where a broader public health or population health approach is being applied to achieve better health outcomes for population groups at risk, through coordination and collaboration of public health programmes. However, population-based health objectives may in some cases rely less on the involvement of communities than HIV/AIDS has done to date. Within the population approach, funding for specifically targeted programmes for HIV/AIDS must compete with other public health programmes for priority. This may inevitably lead to a diminished focus on HIV/AIDS as other priorities are put forward.
Similarly changes in political leadership can impact on effective responses. In Uganda, for example, the election of President Musevani placed responsibility for managing the response to the epidemic at the highest level. This commitment has been demonstrated in other countries, however, it is equally likely that a change in political leadership can result in a reduction of commitment to maintaining HIV/AIDS prevention efforts.
What can we do for the future?
Without a vaccine or affordable treatments in the majority of HIV-affected countries, prevention remains the most effective way of reducing the burden of HIV/AIDS. It is vitally important therefore, that we maintain the effort to find approaches that work, foster the development of new initiatives and provide sufficient resources to optimize their implementation. In the development of good practice in HIV prevention, we must remain vigilant, reassessing and restructuring our approaches, knowledge and learning.
Second, it is important for governments to maintain a focus on HIV/AIDS. Letting this slip to become a lower priority reduces the capacity of communities to maintain an effective response, and signals to those whose behaviour places them at risk of infection that HIV is no longer a serious issue. Governments also need to maintain leadership in this area not only in the development of national strategies to contain the epidemic, but also in developing sound public policy to reduce the impact of HIV/AIDS within communities.
Third, we need to strengthen the networks and alliances between community groups and other government organizations. These alliances can assist with building the capacity of communities to mobilize and act to gain resources and influence. The establishment of broader networks also promotes learning across communities and provides for a more effective coordinated response.
Finally, we need to look at how we can integrate our responses to ensure the longer-term effectiveness of our efforts. The integration of prevention with care and support programmes as well as with research, advocacy and policy adds significant value to any community response. HIV/AIDS prevention works where an integrated approach can provide a broader framework through which effective interventions can be developed.
Aggleton, P. 1993, 'Promoting whose health? Models of health promotion and education about HIV disease', Advances in Medical Sociology, vol 3, pp. 185 - 200.
Altman, D. 1994, Power and Community: Organizational and Cultural Responses to AIDS, London, Taylor and Francis.
Dowsett, G.W. 1996, 'Living 'post-AIDS'', National AIDS Bulletin, vol 10, no. 2, pp. 18 - 23.
Reid, E. 1992, 'The global spread of AIDS', National AIDS Bulletin, vol 6, no. 7, p 30.
This list of resources includes reports of interventions, research, and policy relating to HIV/AIDS health promotion. It is intended as additional material that might assist people with further information about aspects of HIV/AIDS prevention in practice. Each reference is followed by a short annotation that outlines the content and strengths of the resource.