HIV and AIDS - Breaking
barriers
Effective communication for universal access to HIV prevention, treatment, care and support by 2010, Lunchtime discussion, November 27 2006
In 2005, 25 years after AIDS was first recognised, G8 governments, the African Union and the UN World Summit called for ‘as close as possible to’ universal access to HIV prevention, treatment, care and support by 2010. Central to this is effective HIV and AIDS communication.
Dr Robin Vincent, Senior policy advisor on HIV and AIDS from Panos Institute London led a lunchtime discussion on the key communication issues of realising universal access.
Dr Vincent described the seriousness of the role of communication. “It has to be mainstreamed and be explicitly identified in country plans for universal access; it has a vital role in addressing the barriers to access,” he said. He used the UNAIDS 2005/06 in-country consultation results to describe the main barriers, which are:
- Stigma and discrimination
- Inequity of women and girls
- Funding shortfalls (lack of predicable and sustainable finance)
- Weak health systems (for example lack of affordable medicine, not enough trained personnel)
A definition of communication
To understand how communication might deal with these requires a definition of
communication. Dr Vincent used the following
expanded definition in his presentation:
Communication can be considered to be the processes of dialogue, exchange of information and resources, and the capacities that enable understanding, negotiation and decision making around an issue.
“Emphasis is on the exchange and two way nature of communication as well as all the capacities that allow people to affect decision making,” he said.
Communication challenges
Within the context of universal access communication challenges Dr Vincent
outlined the following specific issues:
1. How to build on existing responses on ground. Participatory communication works well (for example Reflect or Stepping Stones) but more effort is needed to take them forward. Importantly these approaches begin to tackle the complex social nature of the challenges (such as stigma and discrimination); they have a lot of potential to build on what is already going on. These approaches provide new, more subtle ways to measure the effectiveness of interventions.
2. Ensuring effective coordination on the overall response. This involves making sure there is meaningful involvement by people, securing predictable funding, and ensuring that responses to country plans are led by countries (and not solely by international agencies). Health systems need to be strengthened and services integrated (for example linking HIV and AIDS programmes to sexual and reproductive health or food and nutrition programmes). In all cases the communication opportunities must be utilised.
3. Sustaining advocacy on the drivers of the epidemic in particular; gender inequality, poverty, stigma and discrimination – these all underpin why the epidemic still continues to grow.
“But how to intervene in a programme sense?” asks Dr Vincent. He explained how there is a broad understanding of the different levels of involvement – from looking at structural, economic or legal barriers, to getting institutional policies right (for example in schools and work places) right down to interpersonal communication and community action (for example on gender identity). At the centre of all these levels are questions about social change. Dr Vincent said: “It is about individuals and their social environment changing together.”
Prevention treatment and care
Dr Vincent urged that the communication aspects of prevention, treatment
and care should be dealt with as a whole. He said: “There is a
tendency to focus on treatment and neglect the care and prevention aspects
of programmes. Care is often done by women in communities – it
is unpaid and invisible – finding ways to communicate to carers
is key.” He also talked about focusing on the characteristics of
the epidemics in terms of prevention and gave the recent example of increasing
HIV rates in Uganda as a worrying sign of the negative effects of ‘abstinence
only’ prevention programmes. (Full figures from UN AIDS are due
in 2007.)
Learning and evidence
There are many successes to learn from but often support is needed to share
the benefits and ensure evaluations are not just ‘left on the shelf’.
Dr Vincent gave the example of grey literature; often produced by communities
but not documented by development organisations. He said: “Strengthening
the ability of civil society to monitor official responses is important.
The UNGASS declaration was monitored by groups on the ground and now
there is some interest in monitoring the response to universal access.”
Dr Vincent concluded his presentation by outlining important points for participatory communication practitioners:
- Focusing on participatory communication can be a ‘double edged sword’ as vulnerable people can be co-opted into dominant development agendas.
- Burdens are often put onto already resource stressed communities – it shouldn’t be an excuse for governments not to provide services.
- Linking participatory communication with broader social and political action encourages local change but if political barriers remain can it lead to wider social change?
- There is an issue of capacity of communities to come to meetings (for example the ability to attend meetings or speak in formal environments) to get their voices heard.
- Practitioners need to listen without making assumptions about issues such as stigma and discrimination.
Three questions were raised by the participants that were discussed in more detail by smaller groups:
- What are the challenges around stigma and discrimination?
- How political do you have to be considering the need for advocacy?
- How can we share learning about communication challenges that we face?
The group discussions fed back the following points:
Challenges around stigma and discrimination
The group began by discussing the different levels and layers of stigma
that exist in societies. “Is stigma always HIV related?” they
asked.
The group asked the question: “What communication works?” Interpersonal communication is important but so too are the time, money, skills and strategies needed for effective communication. The relationship between mass media and interpersonal communication was acknowledged with evidence showing that the most effective mass media communications were those that prompted interpersonal discussion using links to personal stories.
Stigma and discrimination could be reduced by engaging leaders – famous figures political, or religious leaders - and by engaging with people living with HIV and AIDS (PLWHA). The vulnerability of some community groups was discussed and the importance of targeting both men and women with confronting issues around gender.
To be effective, communication processes need time and this was highlighted as a key issue.
The question of whether it is acceptable for programmes to target HIV positive people was raised. It is generally accepted that vulnerable groups are targeted rather than those who are HIV positive. Would targeting PLWHA increase stigma? The group was interested to find out if this had been done, and what the challenges might be.
How political do you have to be considering the need for advocacy?
The discussion began by asking whether it was enough for non-governmental
organisations (NGOs) to just provide the ‘space for advocacy’ or
should more support be given. Who is responsible? It was noted that organisations
can gain strength and momentum when they join forces; the effect HIV
has on so many areas of life means there is a lot of scope for this (e.g.
legal rights). In particular newer advocacy groups for people living
with HIV and AIDS can learn a lot from more globally established movements
such as the Women’s movement.
Advocacy works at many different levels, which raise specific challenges. An example was given of a project that worked with communities in Guatemala. Instead of the sex education workshops offered the community wanted income-generating support. This shows the complex nature of advocacy work and the need to examine the underlying issue of poverty in order to give different issues a solid platform.
At a governmental level the group discussed the constraints on governments and the impossible task they would face if they were to meet the differing and sometimes contradictory requirements of separate advocacy campaigns. In Mozambique it was noted that some government funded NGOs work well, achieving a balance of service delivery and being able to lobby government on issues.
Securing funds for civil society organisations was a theme that ran through the discussion. The Department for International Development’s Civil Society Challenge Fund was seen to be a leading example of forward thinking funding, but it was acknowledged that in general finding resources for advocacy organisations was not easy and the environment for this kind of work was fragile. It was up to civil society organisations to keep up pressure to ensure advocacy was given the priority it needs.
How can we share learning about communication challenges that we face?
“It’s a discussion about sex!”
The group noted how rarely sex is talked about considering how HIV is transmitted. Campaigns often desexualise HIV and AIDS; people are more comfortable talking about the social factors of HIV. Recognition that sex is central has been acknowledged in some localised communication campaigns but not much seems to be known about how this approach works. “Can we make sex sexy in terms of HIV and AIDS communication?” asked the group.
Aspects of learning were also discussed:
Intermediaries often find that online platforms are a useful way to share learning but there are constraints, not only connectivity (especially in the South), but also with access to social networks - individuals may not know that networks exist. Intermediaries need to have off-line as well as on-line strategies in different national settings.
Mediators who work in challenging environments need to be able to facilitate changes in attitude or practice. It is not enough to assume that “putting information out there” is all that is needed; it also requires mediators to support the process of transformation.
It was noted that mediators can use networks to form coalitions. These are helpful in finding ways to identify groups that can engage with oppositional figures. This is one example of the pro-active nature of mediators, who also need to look for opportunities to apply learning in the right situation.
Practitioners who work in the field are understandably biased towards action and “getting things done”. How can they contribute to learning? Suggestions included the role of case-studies in providing evidence, and the idea of in-country study tours to exchange learning.
The
lunchtime discussion featured the paper 'Breaking barriers', by Dr Robin
Vincent.
It is available as a PDF on the Panos website.
Breaking barriers paper (PDF on Panos website)