"Don't forget us - hiding behind the statistics is the real face of HIV/AIDS" A concept paper for contributing to the fight against HIV/AIDS in developing countries
Today over 38 million people - mostly in developing countries - live with HIV/AIDS. In 2003 alone, close to five million people - the highest number registered in any one year - were newly infected by the disease (UNAIDS, 2004). And in spite of an exponential increase in funding and of activities aimed at prevention and support, the challenges that the epidemic brings are expected to outpace efforts to prevent its further spread.
The face of HIV/AIDS has changed in the two decades since it was first discovered. Today, in many regions of the world, it is young people and women who are the most vulnerable to the disease. As the disease takes its toll, families are falling apart, the number of orphans is increasing and key participants in the workforce are being lost.
Yet even if the social, economic, demographic, and psychological consequences of the disease are increasingly obvious, its reality often continues to be elusive, even in countries with high levels of HIV/AIDS prevalence. There are various reasons for this. Many governments have been slow to put in place awareness and care programs, and attempts to address the disease are complicated by myths and misconceptions and by the fact that the subject of sex is taboo in many contexts. In addition, prevention programs are not always reaching the people who most need them, partly because of issues related to funding but also to management of programs by donors and their local partners. As UNAIDS points out in its latest report on the state of the pandemic (UNAIDS, 2004) progress has, however, also been made. Today there are lessons from a variety of global, country-wide and local initiatives that provide valuable pointers on priorities and future interventions. Among other factors, strong leadership, harmonization of responses from various sectors, research linked to action, accountability, involvement of civil society, and decentralization of response are key elements proposed by UNAIDS for the coming years.
Using research as a key building block for effective action
Over the past two years, LDI has been working on providing a contribution to the fight against HIV/AIDS through a variety of research and awareness initiatives. The overall purpose of these initiatives has been to contribute to a better understanding of the complexity of factors that impact on individual and communal perceptions, decisions and behavior as it relates to HIV/AIDS. In doing so, LDI has sought to acknowledge that the factors that contribute to the spread of the disease are both complex and context specific, and that a solid understanding of these issues is a first basis for developing adequate theoretical and practical models and approaches to contribute to addressing this issue in the field.
By way of illustration of the research focus so far, a selection of on-going initiatives is briefly summarized below: The links in the text lead to the full documentation regarding the relevant studies.
Initiative #1: The influence of personal difference variables on intentions to discuss HIV/AIDS
This study collected qualitative and quantitative data from a stratified sample of 610 primary and secondary school teachers in southern Mozambique. The results highlight the importance that a number of individual difference variables (such as personal experience with HIV/AIDS, level taught, condom use, and attitudes) have in determining whether teachers are willing to address HIV/AIDS in their schools and communities. The results of the study are potentially of key importance to decisions on the nature of media campaigns, training and support that different groups of teachers will need to have in order to be effective communicators about the disease in their schools and communities.
Initiative #2: The impact of personal experience on intentions to address HIV/AIDS
In Mozambique teachers have been given a major role in promoting HIV/AIDS awareness and behavioral change among children. This three-month study illustrates the variety of ways in which teachers' own experience and attitudes influence how they deal with this challenge. In the course of this analysis the study provides a kaleidoscope of personal accounts of the impact of HIV/AIDS on teachers' lives and their work, how children are confronted with the disease, and how instructors perceive their role as communicators in combating this pandemic. Teachers emerge from this study as researchers themselves, actively seeking to understand the complex manner in which HIV/AIDS is linked to issues such as poverty, conflict in society, corruption, human rights and certain cultural habits and beliefs.
Initiative #3: Breaking the culture of silence by producing discussion materials on HIV/AIDS
A selection of materials that aim at enhancing awareness and discussion of the impact of HIV/AIDS for students and educators were produced around three key themes: a) teaching about HIV/AIDS; b) HIV/AIDS in the workplace; and c) planning and impact mitigation. The papers combine real-life impressions and experiences with key statistics, illustrations and questions for individual reflection and discussion. These materials are being used in UNICEF supported activities for training of teachers and school administrators in Mozambique. Preparations are ongoing for the development of further materials, among other target groups for students, decision-makers and community leaders.
Initiative #4: Using personal stories as a basis for understanding the role of learning and health in the lives of rural communities
This study asked a selection of men and women of different ages in a rural community in Mozambique to reflect on their learning experience in a variety of areas, including in the field of health and HIV/AIDS. Respondents were interviewed collectively and individually and asked to tell the story of learning as they experienced it personally. The learning stories that were collected in this manner show that learning is a holistic and life-long experience for people in Mozambique, but more so for men and women. Within this learning experience the school continues to hold a potentially important role, even if its current day-to-day and practical value is considered by most to be reduced and disappointing. Critical recommendations are made for an expanded role of communication and media as a vehicle for promoting debate and discussion on learning in general and for the adoption and implementation of basic ethical guidelines for development interventions.
Initiative #5: Drawing lessons from the media portrayal of HIV/AIDS
This study used a content analysis to examine HIV/AIDS in headlines and lead paragraphs in a major South African newspaper between1998 and 2002. The study highlights that HIIV/AIDS is dealt with predominantly as a social, political and health issue and presents clear evidence that secondary themes changed over time, with more articles focusing on the pandemic from a political perspective, potentially clouding the debate around other important facets of the disease. Comparing articles that focused on HIV/AIDS as a local issue to those that portrayed it as an international issue, it was found that local articles were far less likely to portray HIV/AIDS from a medical perspective. The implications for perceptions of the public about HIV/AIDS are discussed.
Putting together the elements of a strategy
Taken as a whole, there are a number of tentative conclusions - some of which have also been substantiated by other research - that can be drawn from the research and development projects that LDI has been involved in so far. These points are listed below. In addition, the quotes in the side bars, gathered in the course of research that was done in Mozambique, serve to further illustrate some of these points.
- The reality of the disease is still elusive to many - even in areas that are very much affected. There is a culture of silence surrounding the disease which is perpetuated, among other factors, by myths, cultural issues, poor knowledge, and by the stigma and discrimination surrounding the disease.
- At the same time, however, there is a tremendous demand for more information. People who come into contact with the reality of the disease - either through personal experience, through stories from others, or through the media - are at pains to learn more in order to reconcile their belief systems with that the challenges that HIV/AIDS brings with it.
- Information that is being made available in communities is often perceived as being very negative, stressing the dire consequences of the disease and equating its presence with death. There is a need for more positive messages that point individuals and communities to ways and means of living and continuing to live positively with HIV and AIDS.
- In many places mass media campaigns and other awareness activities are unable to adequately address the complex questions that individuals and communities have. Campaigns and awareness activities tend to generalize and simplify messages. While effective as tools for enhancing visibility they fail to answer the multiplicity of very detailed and context specific questions that individuals may have. The culture of silence that was mentioned above further contributes to restricting the potential for debate around the issues of HIV/AIDS and reduces the chances that people can address these complex questions collectively and learn from each others experience.
- On a more positive note, these studies illustrate that a tremendous amount of local reflection and experience remains untapped, especially among those that have been confronted with the disease. Individuals who have personal experience with HIV/AIDS struggle to make sense of what is happening in their environment and when prompted can provide insightful, elaborate and resourceful accounts. However in the absence of adequate fora for discussion, and lacking specific encouragement and opportunities for sharing these reflections, the learning potential from these experience remains unused and fails to contribute to mutual building of ideas and action.
- In addition, the studies also demonstrated that in some communities, there is untapped potential for conducting local research. Evidence was found of the existence of individuals and institutions which have the interest and commitment to conduct basic research but are limited in doing so because they do not have the technical capacity to do so. At the same time many of the development models that are being used to address HIV/AIDS are based on the assumption of rational decisions making patterns and fail to take into account the often irrational, context specific and emotional aspects that influence behavior. Provided with the right kind of support, such individuals and institutions at local level could potentially play an important role in enhancing awareness of the disease by bringing localized issues and examples to the table for discussion and reflection. In addition they could provide key elements for further enriching models and theories that are currently being used as starting points for HIV/AIDS campaign design.
While these conclusions are based on experience in very specific environments and with very specific populations and can thus not be generalized, they do make it possible to identify a number of starting points for a strategy that LDI would like to pursue in contributing to addressing the challenges that are posed by HIV/AIDS. A tentative agenda for further research is identified below and is followed by a summary of the key areas of activity that LDI will actively develop in the coming years.
LDI agenda for further research and action on HIV/AIDS
With these preliminary conclusions in mind LDI has identified a preliminary agenda for research and action on HIV/AIDS which consists of the following key areas of activity.
- Promote dialogue and discussion about HIV/AIDS at community level as a means to break the culture of silence around the disease.
- Identify key questions that exist at local level about HIV/AIDS and actively pursue strategies for providing resources to individuals and communities in general that will make it possible for people to seek their own answers and interpretations regarding these complex questions.
- Identify and promote ways of making local experiences and interpretations related to HIV/AIDS widely available and use these as starting point for enhancing awareness of the disease, focusing in particular on priority groups such as women and young people.
- Provide inputs and carefully selected resources (in particular in the form of training) in order to encourage studies and research at community level and use the results of these studies to broaden the agenda for research and action on HIV/AIDS.
- Identify and put in place activities that make research results in general (including research done at local level) available to a variety of stakeholders in communities, in particular those who play a key role in advocacy and awareness
- Integrate these strategies into campaigns/education/outreach (IEC campaigns), and closely monitor and evaluate their impact.
- Aggressively pursue channels for advocacy and action in policy and political spheres to ensure that research and action finds a platform among those who are responsible for making long term decisions.
Activities and next steps
LDI is actively seeking partnerships and opportunities to further develop its work in the field of HIV/AIDS. As such our interest is in finding ways and means to put into practice the results of the studies that have already been conducted, to continue to broaden and strengthen our research agenda, and to collaborate with other partners on relevant initiatives in the field of HIV/AIDS.
In the coming months this agenda will be further discussed with LDI partners and associates. In the meantime, LDI will build on what it has done so far by developing the following activities:
- Production of a selection of clearly written, accessible and adequately illustrated broachers containing summaries of key research findings which may help to address some of the questions that practitioners at community level face. These brochures will include guidelines on promoting discussion sessions and reflection with colleagues and others who are involved in addressing the impact of the disease.
- Collection and production of a selection of learning stories of people who have in some way been confronted with the reality of HIV/AIDS for use by teachers, community leaders and others.
- Actively engage in research that will make it possible to develop more positive messages regarding HIV/AIDS, and its impact.