aids2031 Examines Long-Wave Phenomena
by Denise Gray-Felder
After nearly two years of work, aids2031, a consortium of institutions and individuals who have come together to examine what the world has learned about the AIDS response in its first quarter century, will issue its recommendations by year-end. By taking a close look at the implications of what has worked, what has not worked and what's necessary in the future, aids2031 working groups have focused on the following thematic areas: programmatic response, financing, social drivers, leadership, countries in rapid transition, hyper-endemic countries, science and technology, modelling the epidemic and communication. In addition, initial public dialogues and conversations during a San Francisco kick-off event led to an aids2031 Young Leaders Network that continues to focus worldwide attention on the needs of young people, who are at greatest risk of AIDS.
What is aids2031 doing?
Based on innovative thinking, critical analysis and public debate, aids2031 is creating an Agenda for the Future that will chart options for future worldwide actions on AIDS. Aids2031 is about what we can do differently now, today, to change the face of the pandemic by the year 2031. 2031 marks 50 years since the first report of AIDS.
Aids2031 has engaged thousands of stakeholders including people living with HIV and AIDS, scientists, healthcare professionals, social and political scientists, and communication and information technology professionals to question conventional wisdom, and to stimulate new thinking, new public dialogue and new models. We have looked at social and political trends, science and technological trends, current AIDS programming, public attitudes and beliefs, policies and effectiveness of leadership, among other things.
We expect that the aids2031 Agenda for the Future will be a catalyst for ongoing public debate about the future long-term management of AIDS response globally and at local and national levels.
The CFSC Consortium led the aids2031 communication working group and also managed a series of public dialogues about the future of AIDS. The aids2031 communication group took a close look at the evolution of AIDS communication, how AIDS communication has been financed, special communication challenges of people exposed to chronic violence, and social networking and its influence in how young people define their sexual identity. The report on social networking, Future Connect, is available in summary form in this issue of Mazi and in full-length on the Consortium's Web site.
What follows are the recommendations from the aids2031 working group as well as the summary report of the second aids2031 Youth Network Summit.
aids2031 Communication Working Group Members:
Saida Ali, Young Women’s Leadership Institute, Nairobi, Kenya
Obinna Anydike, IRINNEWS Positive-Plus,Johannesburg, South Africa Michael Bartos, UNAIDS, Geneva, Switzerland
Guilherme Canela, UNESCO, Brazil
Peter da Costa, CFSC Consortium consultant, Kinshasa, Democratic Republic of the Congo
Denise Gray-Felder, CFSC Consortium, U.S.
Ann T.C. Kao, communication consultant, Bangkok, Thailand
Jonathan Kopp, Ketchum Public Relations, U.S.
Fatou Mbow, physician, Dakar, Senegal
Alex Melvin, 180 Agency, Amsterdam, The Netherlands
Karen Merkel, CFSC consultant, London, UK
Nick Perkins, Institute of Development Studies, U-Sussex, UK
Denise Searle, CFSC Consortium consultant, London, UK
Magda Walter, strategic communications consultants, London, UK
Susana Zarco, formerly UNAIDS, Johannesburg, South Africa.
Advisers: Audrey Brown, BBC; Pete Cranston, consultant, and Theo Sowa, consultant.
Here are the aids2031 communication working group’s recommendations:
Agenda for the Future
Rationale and Methods:
Communication for HIV/AIDS is a huge area that often lacks precision of approach, language and definition. The Communication Working Group waded through this imprecision attempting to find a universally understood definition of what is included in the term AIDS communication, on the dominant communication approaches and how they have worked, an assessment of how AIDS communication is funded, where and how is AIDS communication used and by whom, how has such communication evolved, how has it historically been practiced in countries at greatest risk, what is the current state of such communication--including uses of social networking technology--and where is the field, including social networking technology and related communication platforms and channels, headed in the future.
This research has informed our thinking about future scenarios, some of which we suggest below.
Our recommendations are based on the following key research questions:
- Where have we been in terms of HIV/AIDS communication since the HIV virus was identified in the early 1980s to the present time and which communication opportunities have we missed in the first 25 years of the AIDS response?
- What are the key communication challenges we must address going forward and in the next 25 years?
- In emerging economies like India and China, how can we best influence public beliefs and attitudes about AIDS during the next 25 years? With dramatic growth in communication infrastructure and popular culture in such countries, how do we engage those specialists/thinkers/experts who might be in a position to help create the next communication revolution that might change the way people communicate, manage and maintain personal networks essential to a community’s AIDS response?
- What new communication leadership is needed and how do we catalyze it?
- What is the anticipated role of community-based communication efforts as well as mass media now and in the future in influencing public and private beliefs and values about AIDS?
- How can we harness existing communication technology on a global basis, as well as locally, to benefit future management of AIDS responses?
- How should we prepare for future (unknown) communication challenges and what type of community engagement and communication advocacy would be helpful?
- How can we achieve real value for money from AIDS communication activities and what might that look like?
We hope that our work will contribute to:
- Keeping aids on the global policy agenda.
- Facilitating behaviour and social change that will help communities and individuals protect themselves from HIV.
- Helping those affected by HIV/AIDS better understand the disease and the options available to them.
- Creating a more enabling environment for innovation--and effectiveness--in communication around AIDS.
- Enhancing communication networking on AIDS in the future through sharing of lessons learned and good practice (knowledge management).
- More focused AIDS programming that addressing societal norms and dominant public values and perceptions.
- Developing means to help better understand and influence behaviors and attitudes that put individuals and communities at risk of infection with HIV.
- Innovative ways to engage hard-to-reach individuals and communities.
- New communication scholarship and thinking.
- Greater cohesion and leadership of HIV/AIDS communications efforts globally, while at the same time ensuring that individual strategies and tactics are tailored to local and audience characteristics.
- A common definition and language of “AIDS communication” that will facilitate aligning donor criteria and evaluation of impact.
- A recognition and application in all fields of AIDS work of the essential role of coherent and strategic communications approaches.
Globally, there has been a progressive increase in popular knowledge about HIV and aids brought about, in part, by the contribution of communicators; there have been indications of greater attitudinal acceptance of the epidemic and of people affected by the disease, and to a lesser degree, changes in behaviour amongst some risk groups, depending on regional variation and contextual differences. National campaigns and large-scale awareness and prevention communication efforts, including mass media campaigns--which still dominate throughout high prevalence countries--have increased public awareness of HIV/AIDS.
Generally, more people are looking for information and finding it, via traditional and new media; more people are engaging with communication that targets attitudinal change because the aids discourse is being normalized in many societies and it is more difficult to distance or deny it as a relevant subject to engage with.
Also, our evolution study has demonstrated that HIV/AIDS has a different impact in almost every country, depending on prevalence, cultural practices, legal and rights frameworks, overall wellbeing/poverty levels, etc. Yet aids communication tends to follow global trends rather than local/national specificity. There is also limited evidence to suggest that community-based approaches have produced sustained shifts in social beliefs.
What is not as clear, however, is what change has occurred in audience engagement with behavioural-focused communication; this area has developed in design and variety, but there is limited evidence or compound learning about whether, or how, communication has actually influenced behaviour change; this requires comprehensive further research globally and regionally, perhaps some outside the expertise of communicators, by psychologists and social psychologists to determine why people equipped with relevant information persist in risky behaviour.
The ownership of aids communication messages remains largely with international institutions and organisations; however, there is increased emphasis on enabling people who are more affected and engaged with AIDS to have an influence in ownership of the message through greater representation and voice, and greater involvement in the production of the communication.
Possibly the greatest challenge this group faced in its work was the vastness of human activities that fall under term communication. This was most starkly demonstrated in our funding paper as the author sought to apply consistent criteria to the various categories of activities funded under the heading of communication, either explicitly or implicitly. Those were differently classified in various source materials as:
- UNAIDS National AIDS Spending Assessment (NASA) uses a very detailed classification system that defines communication for social and behaviour change as programs that focus on the social determinants of individual change including mass media.
- The rest have categorized communication with advocacy, research and public policy.
- Other, smaller studies of HIV AIDS resource tracking limit their definition of communication to mass media campaigns or information, education and communication (IEC).
- Another defines it as social communication, which is a combination of mass media and face to face activities.
- Gates Foundation: HIV AIDS, public policy and advocacy (largest awards were for projects that advocated for better access to treatment and research). Large emphasis demonstrated by largest grants to wide range of advocacy projects supporting prevention, addressing stigma towards vulnerable populations, and promoting coherence and collaboration among stakeholders.
- Funders Concerned About AIDS and the European HIV AIDS Group Network: communication, public policy and advocacy, and awareness/prevention (including harm reduction)--categories isolated for purpose of funding paper. Include education (help lines and information services)
- In another dimension, some donors combine AIDS spending with STDs and population issues, so identifying allocation to AIDS alone was difficult.
This is not a challenge faced exclusively by the HIV/AIDS field. Similar inconsistencies of interpretation of the term exist across the private and public sectors as well as the vast range of activities of non-government organisations. Whereas much of the private sector has generally an easier task in separating communication from the core activity of a company, defining it usually as internal and external communications, with external covering marketing, media relations, advertising, shareholder, investor and government relations, it becomes particularly muddied in the non-profit sector, where communication is most often at the very core of an organisation’s activities, aimed so frequently at behaviour, attitude and policy changes. Communication is often an inseparable component of core programme work, including educating and persuading beneficiaries and other audiences, and encompassing advocacy, campaigning, awareness raising, lobbying and media relations.
For the purpose of our work, we need to take a two-pronged approach, yet some of our findings indicate that the next 25 years will see the two prongs increasingly interwoven and hard to separate. Communication in our work must be separated into unmediated and mediated, the latter being the premise of the discipline of communication, employing professional communicators.
We believe that in the past there has been greater emphasis on mediated communication, rather than stimulating unmediated discourse and that all we can anticipate about future developments in communication, some of which we are already witnessing, this emphasis will change.
It is in line with this thinking that we propose that the findings and recommendations from the communication group be integrated into the Agenda for the Future in two ways: They need to be woven into recommendations from other working groups, where appropriate or relevant, but also stand alone (where generic to communication, the discipline, or overarching communication recommendations) in a separate section (assuming sections of the Agenda with be organised thematically in the same categories as those of working groups).
When the work of different groups is collated we need to provide input into more effective ways to employ strategic communication techniques and tactics as an integrated tool in the aids programmatic arsenal.
Funding/Measurement and Evaluation of Effectiveness:
Investment in AIDS communication during the first quarter century has been greater than many realise. Yet, we still have inadequate measurements of the true impact of communication processes and how they have contributed to noticeable shifts in how people within countries respond and act.
As noted, we do not know exactly how much because aids communication is often not budgeted or accounted for separately. In many cases, communication activities are costed as part of wider aids intervention activities, such as prevention or treatment promotion.
When allocations are made specifically to AIDS communication, inconsistency of definitions of what that actually entails makes comparative studies and aggregate learning difficult.
Also, we do not know how successful aids communication efforts have been because they are almost never evaluated against desired outcomes. There is sometimes measurement or even review of the communication output products (such as TV commercials, posters or leaflets or the media reach of articles or TV and radio programs), but there has been very little analysis of their impact on the communities they are supposed to reach, which prevents detailed assessment of how sharing and processing of information contributes to essential societal shifts in attitudes, perceptions, social norms, and values about sexual intimacy.
Even when communication processes are intelligently employed, the measurements used to determine effectiveness have typically been inconsistent and inadequate to determine change.
Funders and leaders of organisations involved in aids interventions tend to want to see tangible products from aids communication activities. This leads communication practitioners to continue to produce materials for funders and leaders to see or hear, rather than arguing the case for spending resources on less tangible activities such as detailed, context-specific audience research and evaluation, which might actually produce more positive benefits.
There has been little learned or sharing of knowledge about what makes effective aids communication. The evolution of knowledge and response to aids has not resulted in sufficient significant impacts or indicative change that can be attributed to communication interventions; in situations where verifiable change has occurred evidence is not robust or it is small-scale. aids communicators’ learning is as yet largely un-documented or un-synthesized.
It is vital to discuss issues related to coming to a consensus on what HIV AIDS communication is because it is hindering the way we track resources. In the same way, it is also important to talk about the pros and cons of integrating communication to broader programmatic themes of donors. We need to help stakeholders understand how they can use available data on AIDS communication spending to improve the cost effectiveness of their overall response and work with them to identify what other information is needed.
Much current HIV/AIDS communication does not engage the individuals and communities that are most at risk of HIV/AIDS. This is partly because AIDS communication practitioners and/or those responsible for directing or funding AIDS programming do not know how to, or do not want to, reach the most vulnerable individuals and communities. The result is often poorly targeted, general communication that uses one-way, broadcast-type techniques to attempt to convey complex, culturally sensitive information. This is a waste of resources and brings very limited positive results.
HIV/AIDS communication in each national or local context needs to include a powerful listening element (including of attitudes and beliefs) and be targeted at sections of society most at risk of HIV/AIDS whoever and wherever they are, without making moral judgments about these individuals’ activities or lifestyles. The need to reach vulnerable groups must supersede political, cultural or moral preferences and prejudices.
Communicators working in aids response have developed more segmented targeting strategies as knowledge of risk groups and prevalence patterns has developed. Mass targeting of audiences was the primary trend in the 1980s and into the 1990s, however some more targeted communication to specific risk groups and segmented audiences has been evident in the 2000s, as seen in the focus of the UNAIDS Framework for Communications (1999), which emphasised the increased application and understanding of social change approaches in the past decade.
However, there is limited success in communicating with hard-to-reach groups such as men having sex with men (MSM) and commercial sex workers (CSW), particularly in countries where these practices are illegal.
It is an established fact that geographically the epidemic is concentrated in Sub-Saharan Africa. Our research also shows that within that region some of the groups most at risk are among populations subjected to high levels of chronic violence and trauma, often of sexual nature. There is an established correlation of high risk/high prevalence of HIV/AIDS in those populations. We propose that there is insufficient tailoring both of the content, and tone of, messages, and channels needed to reach these groups.
Messages: Evolution and Gaps:
For the first 20 years of the epidemic, communication was primarily focused on changing behaviour that put people at increased risk of HIV. Heavy emphasis was put on explaining transmission and the science of AIDS, helping the general public stay HIV-free, highlighting condom-use (and for some donors a focus on abstinence), and mass-scale public education campaigns.
Mass media and traditional information, education and communication (IEC) materials were employed heavily in developed and developing countries alike. In developed countries a large proportion of mass media communication contributed to isolating those populations most at risk, inadvertently making AIDS “a gay man’s disease” or an “injecting drug-user’s disease” in the earliest days. This too has evolved as challenges to those perceptions in the face of official and cultural prejudice emerged.
Such communication has also served to segregate geographically attention to Africa. Much of the communication then--whether directly with populations at risk or communication about those at risk--served tacitly to say to the world that HIV/AIDS is primarily an African problem and less relevant to other regions. As donor money poured into Africa for AIDS, the latter impression has been reinforced. In African countries, in turn, political leaders stayed in denial while other regions, in the North and in Asia for example were actively addressing the disease.
Messages in those first two decades seemed largely disempowering to individuals as well as to communities: They were not in control. For those living in high prevalence countries this created a subtle but lingering mindset of dependency. We suggest that the world needs to reverse that mindset in future AIDS communication strategies.
In the past decade, we’ve seen noticeable shifts in how AIDS communication is thought about and delivered: from an individual focus to greater interest in community-based, participatory strategies aimed at positioning AIDS as “everyone’s problem.” While behaviour change strategies still abound, we have seen greater willingness to use community-based participatory communication that seeks to use community strengths to bring about needed shifts in public beliefs, attitudes and social norms that contribute to HIV vulnerability.
There is more information on testing and treatment and communicating about positive living and AIDS normalization. Such communication is empowering and provides a far-easier way for constituents to come together to decide what they want to change and how to do it. Their voices are being elevated and heard more clearly. There has been a growing understanding amongst communication strategists and other stakeholders that priorities of targeting individuals as well as communities are equitable, that they need to be run concurrently rather than sequentially, and that the local context needs to determine the message objectives.
This largely coincides and will be made increasingly possible by the global communication revolution driven by the Internet and the explosion of social networks to which we devote a substantial part of our future recommendations. Accompanying the technological developments is a breakdown of traditional sources of authority, be they governments, organisations, “old media” and religion, especially in developed countries and increasingly in the developing world, particularly among younger generations. These young people increasingly look to peers for role models, guidance and sharing of experiences.
It is in this context that we must look ahead at future evolution of HIV/AIDS communication as the essential ingredient of an effective AIDS response, especially when striving to shift dominant beliefs and perceptions about sensitive issues of intimacy, sexuality, relationships, love and life partners.
Overall AIDS communication in most countries has shied away from direct two-way communication about such personal values in favour of instructing populations at risk about how to behave in order to avoid exposure to HIV. The emphasis has more often been on the risky behaviour and not on the underlying power relationships, values and beliefs that make it difficult for people to avoid risky behaviors.
Thus we have inadvertently contributed to an AIDS narrative in which those who should be communicated with most honestly and directly are more often perceived as “victims or perpetrators”--stimulating a communication class of “others.” This makes it much harder for general populations to include themselves in long-term thinking about managing AIDS in the future.
An initial lack of knowledge about the disease affected communicators’ ability to communicate accurately and not sensationally. But, subsequent discoveries about transmission patterns, testing, treatment options and factors related to living positively-–information about discordant couple strategies for instance or childbearing--have provided more diversity in subject matter and angles for communicators in aids.
The stigma attached to aids and many of the activities that can lead to infection with HIV is deep-rooted in the collective mind of world society. The stigma has traditionally been encouraged and remains as much fed as combated by communication. Feeding into and from stigma, profound taboos and walls-of-silence prohibit the progression of communication. In the North there is a reluctance to communicate about regional sexual and cultural practices in the South which contribute to high levels of infection. The language used when communicating about HIV/AIDS is very influential: Usage of stigmatising language promotes stigma. Censorship and self censorship debilitates the communications message and its reach.
For those at highest risk--the previously mentioned groups exposed to violence in the most affected Sub-Saharan Africa region-–where the situation is indeed a public health emergency, it is a particularly urgent imperative that those messages shed the language stigmatizing the condition and the high risk behaviours, and concentrate on testing, objective prevention and protection measures, and replace euphemistic or moralistic language with that of sexual and clinical openness.
Media/Other Channels or Messengers:
Poor quality and insufficient media coverage globally has increased challenges in response to the aids crisis in many parts of the world. However the global media’s engagement with the issue of HIV/AIDS is changing. Having initially responded slowly, often negatively or with considerable lack of knowledge, media is now showing more positive developments, with greater mainstreaming of the aids story.
The "use" of media by AIDS response stakeholders continues to be largely instrumentalist-–i.e. viewing the media as a delivery mechanism or contractor base rather than as key partners and communicators themselves; this is changing somewhat in the light of a changing media environment, social change strategies and the development of significant partnerships between media, and AIDS response as seen in the multi-stakeholder media initiatives which have helped bring together aids response and media communicators and others to work together.
As channels available to aids communicators have developed since the 1980s, with increased fragmentation of the media environment due to the rise of digital and satellite TV, greater numbers of radio stations, the rise of community media and improvements in the regulatory environment for media in many countries. New information communication technologies and, in particular, the Internet, have significantly increased the options for communication. The use of media has changed in line with the development of these options; however the instrumentalist approach of aids response communicators to media has not changed enough.
Advocates, including celebrities such as actors, musicians and sports figures, can be hugely valuable in providing the "human face" of aids communication and be less prescriptive, particularly for young people. There has also been a growing acknowledgement by HIV/AIDS communicators that the voice of people living with HIV/AIDS (PLWHAs) themselves has been a significant influence in advocacy in the developed world and it is a voice that needs to be more articulated and more present in developing and transitional countries.
With the development of social networking technology which is increasingly widely accessible, interactions between people are rapidly changing. And our research indicates this will also change the way people communicate about issues and behaviors that impact on HIV vulnerability across the globe.
It also shows that people and organisations in the South are only just beginning to use social media for social change purposes. From activity in the United Kingdom and United States over the past five years, there is a growing body of evidence of how organisations and individuals can use new media effectively. New media itself makes connecting these constituencies easier and more cost effective than traditional capacity building activities since regional, national and local face-to-face activities are more easily facilitated and supported.
The new online environment known as Web 2.0 which reflects a state of mind as much as a set of technical features: informal; participative; playful; careless of copyright and applauding innovative re-combinations of content; encouraging of self-promotion while developing and negotiating new norms of privacy; social; and many more. This combination of features and mindset results in an identifiable culture within which traditional communication can appear clumsy, alien and forced.
Because large-scale mass-media or even community communication does not seem able to intervene at private moments when people are at risk of infection with HIV, effective communication has be more sophisticated, less direct and based on the recipient choosing to engage. Social networking sites (SNS) live in exactly these spaces and can provide clues on how individuals and communities consume, create, share and participate in online content, not necessarily directly related to AIDS but from which we can draw lessons. The key is to find ways of working with these communication environments, and not to try to overtly manipulate them.
SNS provide very private places. This dimension of SNS is important territory for supportive outreach and counselling services. It is also a crucial area because it offers opportunities for engaging at a more intimate level than many traditional modes of communication, one where the intensely personal centre of sexual behaviour - with its supporting assembly of myth, identity and personal knowledge--might be navigated by peers or professionals alike. It is certainly one where crass trumpeting of simplistic messages simply drives people away.
SNS can also be very public spaces. This dimension of SNS offers enormous opportunities for organisations and movements. Approaches more sophisticated than those deployed in AIDS communication to date that are sensitive to the culture of the spaces and the way that people operate within them are likely to be most effective.
There is ample, chilling, evidence that there is risk to both organisations and individuals in these new spaces, although the level of risk is sometimes dramatised or exaggerated in media reports. Organisations in particular need to operate within a carefully thought-through risk management framework.
The following findings from our research are more specific to relevance of SNS in HIV/AIDS communication in developing markets:
- Our research provides evidence that young people in developing countries actively social network using digital technologies when it becomes affordable and practical for them. Our four case-studies--from Brazil, India, South Africa and Thailand--show that this is not restricted to the affluent or the middle classes and that young people will use whatever technology or access route is possible and affordable. Importantly, the material from South Africa illustrates how mobile phones are an effective platform for social networking.
- Cost or technical constraints limit people’s access to such tools in many parts of the world but these limitations are slowly becoming less significant. Access to digital communications is likely to improve at faster rates in the medium term.
- There is sufficient evidence from the United Kingdom and United States (developed SNS markets), to be able to describe, interpret and-–to a certain extent--predict patterns of behaviour in such markets. The evidence from the focus groups and other material in the case studies is that general patterns of behaviour are replicated to a large extent in newer markets, albeit influenced specifically by culture and language.
- The anecdotal evidence supports the position that the digital divides relating to age are at least as significant as those related to access and income. Importantly, this is also true of organisations in both developed and developing markets.
- There is a growing body of material showing how individuals and organisations can pursue social goals effectively within SNS. However, there is not yet a similar level of take-up in the developing world–-and indeed, within many developed countries. While there is limited hard data relating to return on investment and impact of these activities there are many, many case-studies that illustrate the possibilities for impact. SNS are a possible window into the world of genuine communication with young people in general and at risk communities in particular.
Aids communication to date has brought very limited benefits in terms of tracking changing behaviours or increasing our understanding of the motivations of at-risk groups and individuals. SNS, because of their interactive, buy-in nature, can at least provide an indication of whether individuals and communities are engaging with content, which is an important step in understanding what works and what doesn't.
There is limited interest among general populations in discussing AIDS as a long-term risk. Yet there is tremendous interest among healthcare providers, PLWHA, those in the AIDS “community”--academics, funders and government influencers--in doing so. Thus it appears that we have been unsuccessful in positioning AIDS as an issue of critical importance to all elements of society unless we are working in hyper-endemic countries. We suspect that as drug therapy improves and people live longer with AIDS in all countries the level of interest will only decrease.
Yet we can stimulate great interest in talking about relationships, love, sex and sexuality especially when confidentiality can be assured and safe spaces for dialogue created.
Communicators may have inadvertently contributed to stigma and discrimination through use of language and continually positioning AIDS as a crisis among certain segments of the population.
There must be recognition of the need for change at two levels, and there exists a tension within that need that has to be resolved. On the global level, there is need for greater cohesion and coordination of efforts in all fields of HIV/AIDS response including communication.
On the other hand individual program planning and implementation has to integrate grass roots community input that reflects local cultural and audience characteristics and needs.
Addressing these two seemingly conflicting macro and micro imperatives--typical in all activities aimed at resolving global challenges while allowing for local specificity --will go a long way toward greater effectiveness in HIV/AIDS communication in the future and identification of gaps. All of our detailed recommendations address one or the other of these needs, but the need for reconciling them under a unified global leadership must be clearly communicated in the Agenda for the Future document.
- There is a need for a more coherent and coordinated global approach to all of HIV/AIDS response, including communication. To make that possible a common definition and language defining what AIDS communication is and what it includes must be established. Without such common language and criteria it is impossible to plan, implement and evaluate communication interventions, nor to compare and allocate funding.
- When investing in communication approaches, especially in hyper-endemic countries, funders must also invest in communication process measures that are determined in advance with active participation of people from the affected communities. No aids communication activity should be embarked upon without demonstrating that research has been carried out to understand the community to be reached, with respect accorded to all stakeholders. Given the personal nature of most activities connected with aids prevention or management, the communication activity must directly relate to the results of this research. The voice of all risk-groups must be encouraged and heard.
- Introduce more standardised, rigorous monitoring, evaluation and analysis of the outcome of AIDS communication initiatives as set against their original objectives. These procedures must not focus on measuring the outputs of communication initiatives but on the sustained impact over time. Donors and implementing agencies must move away from a product/output-based approach to communication.
- Donors, community groups, civil society groups, government AIDS councils, schools, parents, religious groups and others must pledge to work together on communication and local culture, especially as it applies to how belief patterns about sexuality and sex are formed and nurtured among its youth. To do so, we must listen and encourage honest dialogue without judgment. Any communication effort must build upon existing cultures and norms, not attempt to replace them.
- AIDS communication must be funded to plan and implement research-based social marketing and communication strategies at market rate as part of every country’s AIDS response. Analyse how the level of investment in AIDS communication relates to factors such as prevalence rates, budgets for treatment, care or other prevention activities. The aim is to set frameworks to guide the aids community when attempting to plan communication spending for countries with different levels of HIV/AIDS prevalence and in different contexts.
- HIV/AIDS communicators must learn about and adapt to the radical nature of the changes in the digital communication environment. Engage wholeheartedly in these spaces and devote significant resource to developing and sharing good practice.
- Invest aggressively in building capacity and shared learning about social networking in non-OECD countries where social media are taking off. Investigate and consider community ownership of social networking sites, or at least of its content.
- There needs to be a focused strategy to gather evidence about best practice and centralise knowledge. Donors and the international AIDS community should establish a central repository or clearing house of good communication practice and lessons learned, particularly in the following areas:
- In engaging hard-to-reach individuals and communities in culturally sensitive environments. The bar must be lifted so that non-judgmental needs-based AIDS communication is the norm and is supported.
- Development and adherence to standardised funding criteria and the methodology for evaluating and analysis of how money is spent and tracking resources
- Such a central resource could also incorporate the tracking of needs identified by grass roots stakeholders to inform donor priorities. Current programme design too often follows top-down donor preferences while the opposite should be the case
- The lack of sustained learning around aids communication must be urgently addressed. There needs to be identification of gaps where there is insufficient evidence and learning gathered. The aids response community must prioritise learning from a large body of experience to enable communicators and strategists to adapt in a more informed way. There needs to be more resourcing and support for methods to synthesise learning from experience, to develop compound learning about effectiveness and to distribute this widely.
- AIDS communication stakeholders need to build their capacity to anticipate the unforeseen; to strengthen their strategy skills and communication ability, and to develop flexibility-–so that they can quickly adapt to changing situations and ensure that what they are communicating is effective in addressing HIV/AIDS.
- Funders and implementing agencies should establish mechanisms for tracking aids communication expenditure, separately and as part of the wider aids response and management. Greater transparency is needed in HIV/AIDS communication spending disclosure from donors. Currently the receivers of the money carry the burden of reporting spending in a very detailed fashion but the funders can withhold information.
- We need to ensure that communication (not just aids communication) has wider relevance in tackling some of the underlying social issues, such as communicating about and with high-risk and often stigmatised groups, such as CSW, MSM and IDUs
- Develop a social network /group within SNS for practitioners involved with AIDS 2031 and associated programs and commit resources to community management to help this grow as a knowledge and practice sharing hub.
- Establish programs to test and innovate in SNS based outreach, bringing together people who work in social media with those experienced in working with young people in specific locations. The experience and good practice standards that youth workers bring to the table needs to inform and enable application and program development while enabling them to operate without having to scale a long social-media learning curve.
- AIDS communication in the future must focus clearly on communicating about intimacy, relationships, love and sexuality despite guaranteed push-back from some religious, community and educational organisations. Age-appropriate and accurate sex education for young people at all levels of a society-–using all available communication channels-–must be a part of this.
- AIDS communication must be firmly rooted in local realities and context. Programmers and funders must resist temptations to engage in generic communication targeting mass populations unless awareness is the only goal. Dialogue organised and owned by local communities is preferred.
- There needs to be constant research into developments in the communication environment in particular those that relate to communities affected by aids or potentially at risk of contracting HIV. This is vital so that they are maximizing the benefits of using new tools such as the Internet and mobile telephony, while maintaining a focus on using the most effective options such as newspapers and radio. In a global environment where ICTs are rapidly spreading and developing, Aids communication must take advantage of all the opportunities for communication.
- Aids communicators need to create strategies for developing sustained relationships with the editors and journalists to understand what they need to provide sustained media attention about AIDS, such as events to be used as landmarks to promote media coverage repeatedly and consistently. Communicators must move away from instrumentalist approaches towards the media and focus on continued relationship building, capacity development and partnering for long-term AIDS communication locally and nationally. World Aids Day is not enough to maintain media interest.
- Short term recommendation 7 will also require long-term investment in communication infrastructure including schools of communication, communication practitioner training and more skills-specific media development.
- While it is traditional for research reports to recommend new areas of research we sincerely believe that social networking is both growing in importance and changing so rapidly that continued primary research is essential to be able to keep pace and identify the most promising areas for AIDS communicators to develop. Specifically, we suggest:
- Develop a social media monitor (research program) focused on HIV/Aids education.
- Update and maintain the information we have gathered on our target areas; develop similar data sets for other locations of specific interest to the HIV/Aids activists or where usage is exploding.
- Research in more depth and over a longer time period behaviour and usage patterns in developing and transition countries than we have been able to do in our first rapid study.
- Develop a light-weight monitoring and evaluation framework to calculate the return on investment of SNS based interventions. Develop a risk-assessment framework for engagement as well. We should in fact develop a return on investment formula for all aidS communication interventions.
- Engage in a structured way with major players, particularly in the area of cross-media applications, including in mobile phone environments.
- Social networks integrate broadcast and online media in multi-platform productions. Soap operas and community narratives is a format that has been used for development communications in radio and TV. Extending this approach into SNS is a major opportunity. There is likely to be interest from major platform players, who have already shown their preparedness to work in the HIV/AIDS field and for whom such a partnership offers increased access and reach in critical developing country markets.
- Establish innovation funds to pilot new ideas for SNS based outreach and communication. Working with social media in particular and Web 2.0 in general requires a very different approach to traditional principles for engaging with technology. Organisations and campaigns should engage with established social networks and this needs to balance working to a standard structured, managed framework with relaxing control in terms of content and engagement activities. Many of the most successful activities started informally, often with an “amateur” look that gave space to more informal conversations.
Our recommendations integrate lessons from the past two and a half decades with future trends identified by our group, other working groups and external literature (with input from modelling of future trends applied by relevant academic disciplines and the private sector) to reflect anticipated changes in the global AIDS landscape, as well as general future global trends, including those in communication.
Those trends point to a dramatic shift taking place in the way we communicate. There is a move from the top-down, one-to-many model to that of many-to-many. This weakens the role of gatekeepers and purveyors of knowledge - the traditional professional communicators--in favour of catalysts of unmediated debate, dialogue and exchange of ideas. The future emphasis will be not so much on creating or harnessing networks but on joining them.
The very nature of community may be redefined, not along geographical lines but by age, digital literacy and themes of common interest. By the same token the role of organisation will possibly become less significant, therefore disseminating organisational messages will be less of an imperative as opposed to more cross-cutting themes.
This has to be factored in future communication approaches, particularly when taking a long term view, as in the short and medium terms the need for localised, and mediated communication at the local grass roots level-–as we note frequently, to date neglected--must be met. We also need time to ascertain which projected trends will be sustained and which will be transitory.
Aids2031 by its very nature and though the sum of its work, has an unprecedented opportunity to propose bold global approaches and solutions that transcend and challenge the diverse, conflicting or overlapping, and sometimes parochial agendas of a range of leading agencies--none of which is de facto a global leader--and in itself deliver global leadership and significant change.
Its recommendations can provide a global leadership model that can be replicated in dealing with some of the other most intransigent of global issues such as the environment or poverty reduction, many of them plagued by the same challenges we identified in our work in the area of communication: multiple donor and stakeholder agendas, lack of cohesion and coordination, duplication of some efforts, and gaps in other areas resulting from donor preferences and lack of coherent world leadership.
aids2031 Young Leaders Network Summit
The Young Leaders Network held its second Youth Summit in Oslo, Norway in June 2009 hosted by the crown prince and princess of Norway. This summit resulted in a set of recommendations from young people about young people as the world prepares to manage AIDS for the long term. These recommendations are included in the Young Leaders Second Summit Summary Report below:
Young Leaders Summit: Outcomes and Recommendations
Building a Stronger AIDS Response with Young People
In June 2009, 27 young leaders from grassroots organisations and policy groups from more than 22 countries united at the aids2031 Young Leaders Summit to discuss better addressing HIV-related stigma and discrimination. What did they have to say?
Recognize and foster the leadership of young people living with HIV as a central strategy to strengthen the AIDS response. Channel funding and support to youth-led initiatives that demonstrate effectiveness at challenging HIV-related stigma and discrimination and providing youth-specific services. Make space for young people to shape health policy and mentor young people to lead.
The following are the key outcomes and recommendations from the Summit on creating an AIDS response prepared to address the stigma and discrimination faced by young people both positive and negative. The full meeting report is available online at www.aids2031.org.
Safe Spaces for Young People Living with HIV
Greater investment to support the engaged leadership of young people living with HIV in the AIDS response will help sustain young leadership in the long-term AIDS response. Barriers currently limit the long-term participation of young people living with HIV, including burnout, over-engagement of involved activists and lack of institutional support.
- Create better programs for addressing the isolation and trauma faced by young people living with HIV. Increase global networking among young positive-led organisations and initiatives; develop standards of care for HIV-positive speakers, such as debriefing sessions for young leaders after speaking at meetings and conferences; and further develop and strengthen international interactive information technology platforms to connect young people living with HIV and young leaders prior to key events, so that an ongoing support mechanism is in place.
- Develop strategies for supporting new leadership among young positive people. This could include young leaders living with HIV acting as advisors to AIDS program directors, helping to monitor and evaluate projects, and serving as integral staff members of organisations. These strategies should be developed and implemented by donors, U.N. agencies, civil society groups, and other partners in the AIDS response.
- Create safe spaces for young people living with HIV within spiritual and academic institutions. Map global religious partners working to decrease stigma and discrimination and address why young people living with HIV do not have safe spaces in many spiritual institutions. Ask academic institutions to create or revisit their programs and services for young people living with HIV to ensure they meet the needs of students.
- Conduct research on the meaningful participation of young people living with HIV. Operational research will help demonstrate the value of the meaningful participation of young people living with HIV in program and policy creation. The research process must be led by (and for) young people living with HIV. During the Summit, UNAIDS committed to support the facilitation and administration of this research.
Funding for Initiatives Led by Young People
Targeted support for young people leading their own initiatives, including management training programs linked to funding to support skills building in grant writing, project management and monitoring and evaluation, will lead to higher rates of success among youth-led organisations.
- Young Leaders Fund: The Young Leaders Fund is a collaborative, grant-making mechanism to support youth-led initiatives on HIV/AIDS. The Fund specifically seeks to support the core costs of initiatives, and also the leadership development needed to create sustainable initiatives. aids2031 is currently taking the lead in establishing a host organisation for the Fund, and in Fall 2009 will convene youth AIDS networks to set the fund’s grant-making priorities and governance structure.
- Five percent for the Future Campaign: This campaign calls for five percent of donor HIV funds to be allocated to youth-led organisations. The campaign aims to help funders commit to an ongoing investment in young people to ensure relevant and innovative solutions now and strong leadership for the future. The call is directed to multi-lateral donors, bilateral donors, national governments and foundations.
- Develop a donor report card on young people: The creation of a donor report card on youth-led initiatives, with a template for donors to report their efforts to support youth-led organisations working on HIV, could act as a mechanism to incite donor accountability to young people. Such a report card could highlight the percentage of funding given to youth-led organisations, as well as other ways donors support young people and young leadership.
Use Media and Technology to Challenge HIV-Related Stigma and Discrimination
Leveraging the power of media and technology can help address HIV-related stigma and discrimination. Many AIDS campaigns using new media and technology do not convey anti-stigma messages, and the media is often a stigmatising force towards young people and young people living with HIV.
- Capitalise on the upcoming FIFA World Cup South Africa 2010 to launch an anti-stigma and discrimination media campaign. The World Cup 2010 is a key media opportunity to reach young people and address HIV-related stigma and discrimination in South Africa. For example, although soccer players are often engaged in HIV prevention campaigns, there could be greater focus on engaging sports celebrities on specific stigma and discrimination issues relevant to young peoples’ lives.
- Utilize text messaging to reach young people with anti-stigma and discrimination messaging. A campaigning idea was proposed called the “Text 4 Truth” campaign, which would use SMS messages to reduce stigma and discrimination through an interactive text message quiz. The quiz’s aim would be to debunk HIV/AIDS myths.
- Develop and disseminate a media training program to address stigma and discrimination by journalists and media professionals towards young people. This could be in the form of “Dos and Don'ts” developed by young people living with and affected by HIV/AIDS.
Strengthen the Capacity of Young People to Participate in Policy and Lead
A sustainable and effective global response to HIV is rooted in human rights frameworks that cater to specific needs of different communities. Young leaders need access to information, networks, and skills-building to better influence policy development concerning stigma and discrimination.
- The Young Leaders Mentorship Hub: The goal of the Young Leaders Mentorship Hub is to create an exchange of ideas and knowledge between young leaders and more established leaders, including decision makers in media, policy, and funding. Such an exchange would allow young leaders to gain insight and skills towards building sustainable initiatives, and allow decision makers to learn from the capacity and ideas of young people. UNAIDS has committed to incubate the Hub.
- Document achievements and collect evidence on the value of participation of young people in policy making through a published collection of “success stories.”
- Provide simple and youth-friendly tools on understanding stigma and discrimination, governmental processes and using human rights frameworks, along with building leadership and advocacy skills through trainings, online courses and pre-conference workshops.
Young people are an integral piece of the AIDS response. Start thinking differently about young people, and young peoples’ needs, and create a different future for AIDS.
The second aids2031 Young Leaders Summit was organised by aids2031 in close collaboration with a youth-led planning committee, the Norwegian Ministry of Foreign Affairs and the UNAIDS Goodwill Ambassador HRH Crown Princess Mette-Marit. The youth led planning committee included members from the Global Youth Coalition on HIV/AIDS, the World AIDS Campaign, Hope’s Voice International, and UNAIDS. http://www.aids2031.org/