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Reflections on Communication Challenges of HIV-AIDS
by Alfonso Gumucio, Ailish Byrne and Denise Gray-Felder

Extracts from Working Definition of Communication for Development[1]

Communication for Development…
Is based on dialogue, which is necessary to promote stakeholders' participation. Such participation is needed in order to understand stakeholder perceptions, perspectives, values, attitudes and practices so they can be incorporated into the design and implementation of development initiatives.

Follows the two-way, horizontal model and not the traditional one-way, vertical model of Sender-Message-Channel-Receiver and increasingly makes use of emerging many-to-many forms of communication made possible through new technologies. Even when used along more unidirectional models (e.g., campaigns), communication needs to facilitate the understanding and taking into account of people's perceptions, priorities and knowledge.
Gives voice to those most affected by the development issue(s) at stake, allowing them to participate directly in defining and implementing solutions and identifying development directions.

Is contextual. There is no universal formula capable of addressing all situations and therefore it should be applied according to the cultural, social and economic context.

In spite of large amounts of funding invested in information and dissemination activities around HIV-AIDS, the spread of HIV continues to progress at pandemic levels in many countries of the world. Although some progress has been achieved in specific country settings, the overall picture remains somewhat gloomy. One set of commonly held beliefs – that if people only understood the disease and had information about AIDS readily accessible then they might change risky behaviors -- has proved again and again to be untrue.

In some regards, one might conclude that creativity and innovation devoted to HIV/AIDS communication has lagged behind other medical and scientific interventions.

Yet, no other public health crisis has ever received so much attention. HIV-AIDS has prompted multilateral and bilateral agency cooperation on unprecedented scales. Academic and scientific institutions, recipient governments and non-governmental organizations have all joined resources along with a critical mass of cumulative experience to better understand the crisis of AIDS and the most effective weapons in this fight.

Nevertheless, and despite all the efforts to disseminate information about HIV-AIDS, communication has not substantially dealt with the complexity of social issues surrounding HIV-AIDS, such as stigma and discrimination. Such missed opportunities are discussed is the publication Missing the Message? 20 Years of Learning from HIV/AIDS (Panos Institute, 2003).

At the Communication for Social Change Consortium, we believe that the main reason for this is that information dissemination per se, or marketing messages, is not enough. It cannot replace communication processes that involve people and help them bring about needed shifts in the normative cultural values present in their societies. This is particularly true of such sensitive fields such as human sexuality and HIV/AIDS, where behavioural change remains strongly influenced by socio-cultural contexts, beliefs and norms. These are merely confounded by poverty, a characteristic common to high-risk communities, which further limits choice and scope for change.

Thus, while studies show that most at-risk populations and societies at large know much about HIV-AIDS, including how the disease is transmitted and its devastating effects on individual’s health and the society at large, this knowledge has not fundamentally changed the social response to HIV-AIDS. Clearly needed is emphasis away from limited individual behavioural change and towards deeper and lasting social change. This implies significant shifts in thinking and practice relating to communication for HIV/AIDS.

In this context, we recommend the following major shifts in approaches to HIV/AIDS:

  1. Greater utilization of two-way participatory communication in which affected people control the process and response.

    For any public health crisis, information is essential. But with HIV-AIDS it cannot work in isolation. Information dissemination is necessary but, in isolation, has not proved effective in preventing HIV-AIDS. More communication is needed, which means involving people in meaningful participatory approaches based on dialogue, listening, responding to expressed needs and collective planning and action. Communication encompasses a two-way horizontal process that facilitates the process of communities empowering themselves, whereas information usually entails vertical one-way activity (messages) sent from a central body to multiple “receivers.”

  2. Greater focus on changing social contexts and norms and less on individual behavioural change.

    The dominant paradigm remains Behavioural Change Communication (BCC) with its emphasis on directive messages aimed at individual behavioural change. In contrast, experience highlights the need for a shift to longer-term and more sustainable changes in social contexts and norms that themselves significantly influence individual behaviour and scope for change. That is, communication processes should help affected groups discover how they can improve their lives, through participation in inclusive, non-directive communication processes that inspire positive action. (See A Dialogue on Communication for Social Change for an understanding of the CFSC process.)

  3. Support for and investment in the development of indigenous, home-grown, culturally appropriate communication processes and infrastructure, in appreciation that models cannot simply be exported and replicated in different contexts.

    Too often models of information dissemination, notably large public information campaign techniques, have been copied and used in cultural, social and political contexts that vastly differ from the contexts where those models were originally developed and applied. Such dominant models continue to clash with traditions and cultural patterns in countries where they are exported to, in particular those in Asia, Africa and Latin America. Locally designed approaches are needed, where participatory processes define the media, the messages and other communication activities that are appropriate and needed. As the OurMedia 2007 Sydney Declaration notes: Greater understanding of the social, political and cultural barriers that perpetuate stigma and discrimination can contribute to ensuring that governments act in the interests of public health. There is a wealth of international experience in participatory approaches, including valuable tried and tested methodologies and tools, to build on here.

  4. Investment in longer term communication policies and strategies

    Most often, information campaigns about HIV-AIDS are short-termed and limited in scope: “put together an outreach plan to reach truck drivers and commercial sex workers, and show indicators of progress within 12-18 months time,” for example. Often, such efforts consist of the production and massive dissemination of messages through commercial radio and television or through billboards or flyers/bulletins. Such materials are often produced by “experts” living in capitol cities or imported from outside the affected countries. We see far fewer examples of in-depth, community-rooted communication which involves a serious commitment to hearing and understanding what the obstacles and opportunities are for communication within local communities – and expressed by local people in their own voices and ways.

    Communication for social change and other forms of participatory communication require long-term commitments of time and money. “Indicators” of progress often mean looking analytically to see how stated norms and belief systems are changing over years, not months – and not just looking at how messages and information are disseminated and received. Especially with AIDS, we cannot assume that knowledge translates to positive action.

    It is far easier to undertake short-term information campaigns – which most often satisfy donors that communication is included in the response – than to invest in shifting power, influence, policies and control of communication processes to the affected people.

    This is somewhat understandable: given pressure to “do something with communication” most well-intended professionals fall back on what they know how to do best.

    Yet we miss the opportunity to work with local governments to change policies that make communication more difficult –such as broadcast or freedom of information policies – or to introduce systemic change, such as educational policies or employment policies that discriminate against people living with HIV and AIDS.

  5. Strengthen and enhance professional communication competences, particularly in poor countries.

    There is an urgent need to invest in developing communication capacity, particularly in communication for social change and other participatory approaches. Far too often, countries retain commercial operations to implement information activities or mass media campaigns. When the work ends, little is left in country. Even when organizations well versed in development are retained, how often are they encouraged to invest in long-term strategies and to facilitate the growth of local competencies? Who challenges their assumptions that more information is needed? Who looks critically at how information is used and flows within communities at risk?

    And within development and other UN agencies, investing in participatory communication skills training of its professionals is too often a low priority. How often do we hear that such approaches are “soft or fuzzy.” What evidence do we have that counting how many people view a billboard or television ad has brought about any measurable change in actual behaviour. (Some research “intuits” that “stated behaviour change” equates to actual behaviour change.)

    Might we suggest that the elements that make up human sexual behaviour are not only “fuzzy,” but also that how and why individuals learn their sexual behaviors are greatly influenced by cultural, societal, environmental, familial, gender and peer relationships – all of which may be hugely complex, opaque and unclear to those looking in from the outside.

  6. Refocus and strengthen communication budgets for participatory communication at scale

    All development agencies and national governments need to develop and support capacity development in participatory communication methodologies that are required to produce lasting social change. Though many organizations claim that they have assigned significant budgets to communication activities, a review of expenditures shows that generally the investment has been in information and dissemination campaigns, public relations or even institutional positioning. It is not in communication that serves and meaningfully engages the communities most affected. A clear sign of commitment to communication is when an organization has separate budgets for (i) information and dissemination activities, and (ii) communication strategies that relate to programmes.

In view of the above, we recommend a communication approach that involves all stakeholders, and aims to provide state-of-the-art national communication and information strategies that are intimately related to the national plan to combat and prevent HIV-AIDS.

Developing National Communication Strategies

Such communication strategies cannot be drafted in Europe or North America, by experts who are not developing country communication specialists or are unlikely to be adequately aware of the social, political, cultural and economic contexts of particular poor countries or regions.

The process of developing national communication policies and strategies for HIV-AIDS needs to go through various stages at country level, with support from communication specialists from development organisations and specialised agencies such as UNAIDS. The role of communicators is as facilitator -- different from the role of journalists: communicators should be facilitators of dialogue among all stakeholders, and provide technical advice for the drafting of strategies that will be appropriated by local organisations, governments and institutions.

This process cannot be based on implementing ready-made recipes, since each context is particular. The stages to take into consideration when developing a national communication strategy for HIV-AIDS include:

Phase 1: Identify all organisations working on HIV-AIDS and leading communication staff

This includes local and international non-governmental organisations (including associations of PLA); government ministries and agencies related to HIV-AIDS (Health, Education, family, Youth and Sports, etc); bilateral aid agencies (funding HIV-AIDS programmes); multilateral development organisations (UNAIDS, WHO, UNICEF, ILO, etc); journalists and media managers (both of mass media and community media); and academic and training institutions. Also identify communication staff as focal for the whole process, with enough leverage to make decisions in the name of their organisations.

Phase 2: National seminar to gather all stakeholders

Too often organisations have their own agendas for HIV-AIDS, which results in an overlap and duplication of activities. A classic symptom is the proliferation of materials (posters, brochures, etc.) with similar messages and content, produced by multiple organizations within the same country with a total lack of institutional coordination. Gathering stakeholders together for 4 or 5 days would allow them to plan, exchange experiences and, most importantly, enable participants to identify and discuss problems they face in their information, education and communication approaches. As the recommendations from the WCCD (October 2006) emphasise: Strengthen partnerships and networks at international, national and local levels to advance communication for development and improve development outcomes. A problem tree of information and communication for HIV-AIDS should result from this first workshop.

Phase 3: Provincial seminars

The diagnosis at national level may not represent the problems in less advantaged areas that face particular constraints and challenges. It is important to establish similar consultations among stakeholders at the provincial level, including all those development and health organisations involved with programmes and projects in particular provincial settings and rural areas of the country. This process should give voice to more marginalised groups and communities (often those at highest risk) and ensure these are heard by the more powerful stakeholders.

Phase 4: Planning and strategic sessions

With the critical mass of information provided by stakeholders at the national and provincial seminars and workshops, an exercise of participatory planning sessions should be conducted. Facilitated by external communication specialists, this will involve a smaller team appointed by the stakeholders (for example: one representative from multilateral agencies, one from bilateral agencies, one from government institutions, one from international NGOs, one from local NGOs, from CBOs etc). The objective is to identify priority areas of intervention and choose communication approaches that are relevant to the particular social, political, economic and cultural context. The result of this exercise is to draft a meaningful communication strategy that encompasses the objectives of the national HIV-AIDS policy.

Phase 5: Validation of communication strategy by those most concerned

To ensure relevance, quality, commitment and local ownership, the draft communication strategy needs to be validated by all stakeholders. This is essential so they appropriate the communication process and share responsibility for its implementation. The entire participatory process will not be meaningful or useful if sole responsibility for implementation resides in one or two stakeholders, such as the national AIDS Commission or an international agency. The WCCD (October 2006) recommendations emphasise moving towards a rights based approach to communication for development, i.e. one fundamentally based on the principles of self-determination, participation and inclusion (Ford et al, 2003).

Phase 6: Implementation and networking

Implementation of the communication strategy should start by establishing a network of all stakeholders and defining the responsibilities of each. Teams will be organised to deal with different levels of the strategy, taking advantage of the experience and expertise of different stakeholders. For example: a team for community media, a team for mass media, a team for capacity development and training, a team for external relations, a team for monitoring and evaluation, etc. Emphasis will be on a new approach that incorporates dissemination of appropriate information, but goes far beyond this by locating it within broader processes of dialogue and communication for social change.

Phase 7: Participatory monitoring and evaluation (PM&E)

Development communication programmes should be required to identify and include appropriate monitoring and evaluation indicators and methodologies throughout the process
WCCD Recommendations, Rome, October 2006

In order to share lessons learned and best practices as well as to demonstrate impact, there is a widespread need to strengthen capacity to research and evaluate HIV/AIDS communication initiatives in appropriate ways. We echo the call of The Sydney Declaration for national governments and bilateral, multilateral and private donors to allocate 10% of all resources for HIV programming to research… without such funding we will fail to maintain a sustained and effective response to the AIDS pandemic. Participatory approaches would do much to complement current M&E practice, as highlighted below.

A baseline survey is advisable before implementing new communication and information activities, with ongoing monitoring and periodic evaluations recommended, using participatory approaches. There is no one approach to PM&E which, by definition, will vary according to local context and needs. However, a core set of principles guides the process. Recommended stages include: deciding to use PM&E as part of a CFSC strategy, assembling a core PM&E team, developing a PM&E plan through dialogue, collecting, checking, interpreting and reporting the data and, importantly, using PM&E findings to adjust the CFSC strategy and develop action plans for the future.

What fundamentally distinguishes participatory M&E is that “success” and “significant change” is determined by the intended beneficiaries. When done in participatory ways, the evaluation process is itself an important way to document and amplify the voices of beneficiaries and marginalized groups, provide safe space for collective reflection and analysis, and strengthen trust and connections between partners. To evaluate CFSC processes at scale remains challenging because much impact relates to intangibles that are not easily measured and that do not change overnight, e.g. voice, confidence, esteem, challenging traditional assumptions, roles and behavior, and shifting societal norms. As well, processes of partnership, connectivity, communication and collaboration are central but not easily measured. Nevertheless there is a substantial body of related experience to build on. The sensitivities and complexities inherent to communicating around HIV/AIDS, gender and other sensitive issues fit well with less pre-determined, more open and more community-oriented approaches to evaluation. Importantly, since “success” is determined by intended beneficiaries, their active participation tends to inspire greater understanding, commitment to and use of results -- as findings are more likely to be fed into planning processes and to inspire action

Experiences From Around the Globe

We’d like to share a few experiences notable for their creativity, local origin and design and participatory approach. All give priority to creating space to hear voices of marginalized people and of those previously voiceless community groups and members. All are solidly grounded in their particular local context. This explains their diversity which is seen as an advantage. The examples testify to the potential and value of locally-driven participatory communication processes to HIV/AIDS initiatives.

1. Video SEWA (Self-Employed Women’s Association), India
Video SEWA has successfully and powerfully made visible and brought attention to key issues that face self-employed women in India. It is part of a national organization and trade union movement that fights for the rights of women workers in Ahmedabad. Video SEWA is made up largely of illiterate women, who are supported to make videos on issues that affect their own community of working (mainly self-employed) women. The videos are used to raise awareness, inspire discussion and to support broader efforts to improve their livelihoods, e.g. providing evidence for related advocacy and legal campaigns. Video SEWA is strengthened by its solid foundations in the labour and women’s movements. Video SEWA demonstrates how video can be used effectively and extensively by workers; the women typically develop the script, film the video and edit the films themselves. Video SEWA has been making simple, appropriate and modern video technology available to poorer women since 1984 and the process of making and screening videos has become an important part of workers’ education classes, fuelling understanding, empathy, mutual support and collective social action. The videos have effectively helped to bridge barriers of distance, class and culture. Diverse subjects are covered including: multiple issues faced by street vendors, public health issues like smokeless stoves and ORT, human rights issues, gender issues and awareness raising about a national census. Their films have been aired on national television and have supported professionals across disciplines in their fights for social justice for poor women.

2. TV Maxambomba, Brazil
Since 1986, created as the Popular Video Project, TV Maxambomba has used video to (i) Communicate the experiences of local people, (ii) Reaffirm the achievements and strengths of local organizations and (iii) Share information about people’s rights. Going far beyond merely documenting reality or producing videos, TV Maxambomba engages and reaches people through participatory processes, which involve poor communities in programming that relates to their daily life contexts. Central to TV Maxambomba is using TV -- which 80% of the Brazilian population has access to and over 90 million people watch -- to strengthen local organizations, stemming from the principle that a democratic society results from conscious, participant communities. TV Maxambomba is located in Nova Iguacu, an impoverished area on the outskirts of Rio de Janeiro, with a population of approximately two million and one of the highest rates of infant mortality in Brazil. More than 100 documentaries on social issues have been produced since 1986, including pieces on HIV/AIDS, health and sexuality, as well as mini soap operas and political satire. These are typically shown on large screens in public street screenings, to 200-300 people, and followed by community discussion and dialogue: “TV Maxambomba’s street screenings bring neighbours together and build communities where presently none exist… the information is organized in such a way that it corresponds with the language, the experiences and the real problems faced in their everyday lives.” These screenings and discussions have inspired collective action and concrete solutions to numerous local problems, as well as increased confidence and participation in democratic processes. TV Maxambomba works with students to encourage critical insight into communication possibilities and offers video production training for youth known as “Reporteres de Barrio.” Noting TV Maxambomba as an especially effective project, UNICEF complements the initiative for encouraging “teenagers to use video cameras to record themselves talking about subjects like dating, relationships and HIV/AIDS… By allowing teenagers to film each other and to see themselves on camera, the workshops bring a new dimension to the discussions.” ( 8).

3. Aarohan Street Theatre, Nepal
Performing street theatre since 1988 on issues of social justice, democracy and pluralism, Aarohan performs in rural and urban areas, building on a Nepalese tradition of interactive open-air performances. As well, the rural and mountainous landscape of Nepal makes mobile street theatre particularly appropriate and accessible to isolated communities, in a country where few have access to mass media. Aarohan performs in 55 of 75 districts of Nepal and actively involves local and affected communities in production processes, staging performances for up to 3,000 people. They promote the use of street theatre to engage local populations and raise awareness about different social issues and have trained some 30 drama groups who constitute an informal network with great potential for social change. Among other topics, notable success has been witnessed on issues of leprosy (inspiring great uptake of check-ups and treatment), street children (widely changing negative perceptions) and sanitation (greatly increasing demand for latrines). Five districts and three jails have been involved in the development of performances on HIV/AIDS and they have developed a 136-episode long radio drama focusing on AIDS. They have recently begun using kachahari, interactive theatre where the audience directs the play and determines the outcome of the performance, to great effect. Importantly, Aarohan prioritises (i) training new, local groups (youth in particular) in participatory theatre to multiply their impact in culturally-sensitive and appropriate ways, (ii) actively researching local customs, contexts, music and drama to develop locally-grounded new performances, and (iii) always encouraging audiences to participate in various ways, including in post-performance discussion which follows every performance.

4. Izcanal Community Radio, El Salvador
Radio Izcanal was started in 1991 by Salvadoran exiles from the civil war, committed to strengthening their communities by mobilizing around key issues relating to health, education, human rights and democracy. A strong example of participatory communication and media that is totally owned by the local community, Radio Izcanal has grown from humble roots to become the main community radio station in the region. From the start, representing the voices of all rural people in Usulutan has been priority of Radio Izcanal. They regularly include the voices and perceptions of people living in small towns as well as in urban areas; listeners have quickly came to see it as their station. Radio Izcanal actively strengthens local cultural identity that was largely destroyed by war and modernization and elevates indigenous languages. Local youth are constantly employed by the radio station, helping keep it vibrant and relevant. The station encourages and creates space for the local population to participate by using the radio to inform, express opinions and be heard. Radio Izcanal has formed important partnerships with like-minded media organisations, allowing them to air and produce educational programmes together. Radio Izcanal helps ensure its sustainability as an active member of ARPAS, a large network of community radio stations in El Salvador, most of whom share a specially purchased radio frequency.

5. Dialogues on Female Genital Cutting, Senegal
Since 1997, 1,748 communities in Senegal have abandoned FGC, representing some 33% of the 5000 communities that practiced FGC at that time ( Based on the Human Rights principles of self-determination, participation and inclusion, CFSC processes have effectively assisted affected communities to learn how they can stop the practice of FGC, through engagement in participatory communication processes. Since the mid- 1990s, led by a local NGO Tostan and supported by UNICEF, the process has involved structured non-directive community discussions based on human rights principles, as well as public declarations against FGC by communities whose families traditionally marry each other. A range of marginalized groups and local leaders (such as traditional and religious leaders) have been actively engaged. In this process, local women facilitators help to create safe spaces for the discussion of sensitive issues, to develop local capacity and co-facilitate dialogues and to negotiate collective change by assisting communities to reach consensus about desired change. The communication strategy and processes are thereby contributing to the creation of an environment conducive to lasting social change relating to FGC. Importantly, discussion about human rights and responsibilities is the main focus, with education about the heath consequences of FGC incorporated within this. The extremely sensitive and deep-rooted nature of FGC makes progress in this field particularly noteworthy to those working on communication for HIV/AIDS.

6. Community Conversations and Youth Dialogues, Ethiopia
Over 400 youth clubs in five regions in Ethiopia are involved in an effort to take to scale CFSC processes of dialogue and decision-making around HIV/AIDS, based on principles of human rights communication. In recent years the Consortium has witnessed and heard numerous stories of significant change in young peoples’ lives as a result of their participation in youth dialogues focused on HIV/AIDS. Preliminary findings indicate that some social norms that influence people’s perceptions and possible life styles are starting to change in significant ways. Well established as social and educational institutions, the youth clubs increasingly contribute to public dialogue around HIV/AIDS. Their growing links with the media constitute a powerful channel to ensure that youth voices are heard and become active in setting the agenda relating to individual, media and governmental decisions about HIV/AIDS. The dialogues create spaces for people to discuss related issues in their wider socio-cultural contexts, to identify their problems, define their capacities and mobilize resources. They enable the exploration of issues in a respectful, safe environment and are reaffirming of local culture, language, knowledge and lived experience. Participatory approaches are used to put into practice key CFSC concepts of voice (marginalized and excluded), space (enabling places, media and policy) and connectivity (alliances, horizontally and vertically). Key objectives are: to increase the quality and quantity of youth dialogue on related issues, to increase the effectiveness of youth action and connect youth ideas to those of other key actors, to bring youth voices to national, regional and local attention through the media, to create channels for decision-makers to respond to youth ideas and action and, ultimately, to help lower HIV prevalence in Ethiopia. Research to date shows that local ownership and control, active participation and solid roots in local socio-cultural contexts are widely seen as key strengths of the dialogues. Impact includes young people empowered to speak out in policy implementation processes, increased use and demand for condoms, increased VCT and greater demand for youth-friendly services. As well, many clubs are actively supporting PLWHA in their homes. The dialogues are sparking wider discussion in homes and communities, while the outcomes of dialogue increasingly feed into popular newsletters and radio dramas. Many sensitive and previously taboo issues including female genital mutilation (“cutting” in Senegal example), wife-inheritance, gender issues and the abduction of girls, have been subjects of discussion, with notable positive impacts. Partnerships with a variety of media are deepening and strengthening (e.g. radio dramas and relevant programming, youth newspapers, panel discussions, radio phone-ins and retraining media personnel).

Select References
Ford, Neil, Communication for the Abandonment of Female Genital Cutting (FGC): An Approach Based on Human Rights Principles

Ford, Odallo and Chorlton (2003). Communication from a Human Rights Perspective: Responding to the HIV/AIDS Pandemic in Eastern and Southern Africa. Journal of Health Communication, Volume 8 Number 6.

Gumucio Dagron, Alfonso, ed. (2001). Making Waves. Stories of participatory communication for social change. New York: The Rockefeller Foundation (under perpetual license to Communication for Social Change Consortium).

Parks, Will et al (2005) Who Measures Change? An Introduction to Participatory Monitoring and Evaluation of Communication for Social Change. New York: Communication for Social Change Consortium.

[1] As agreed by the Steering Committee and organizers of the World Congress on Communication for Development (Rome, October 2006):µId=101

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