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6. Community mobilisation and participation: making it happen
   Last updated: 29.06.02
 
The HIV epidemic is bound up with community structures, norms and values, transformation of which depends on those who live within them. Communities are not single entities but collectives of differing people, interests and ideas. However, it is important to recognise that communities themselves possess expertise, interest in and capacity to bring about many necessary changes in structures, norms and values, which outsiders do not necessarily share.

We know empirically that developing countries like Thailand and Uganda, with remarkable successes to date at slowing or reversing the spread of HIV, have combined top-level political leadership, engagement of civil servants throughout the Ministry of Health and beyond, and widespread community mobilisation.

UNAIDS says: “A community becomes mobilised when a particular group of people becomes aware of a shared concern or common need, and decides together to take action in order to create shared benefits. This action may be helped by the participation of an external facilitator - either a person or another organisation. However, momentum for continued mobilisation must come from within the concerned group or it will not be sustained over time”.

As experiences shared in “Community Lessons, Global Learning” have highlighted, there is solid evidence of several factors which might explain why community mobilisation is so important in effective responses to AIDS. These include:
  • People are more likely to respond to safer-sex and safer-drug taking messages from their peers;

  • Community norms can positively or negatively affect both risk behaviour and risk factors;

  • Most people living with HIV or AIDS depend on their family and their community for most of their care;

  • Some community groups can be more effective than government services or the private sector at reaching particular vulnerable populations, especially the poorest and the most socially marginalised; and

  • Most community organisations can respond relatively quickly to changing needs and circumstances, while some have strong track records of innovation.


As shared at country seminars, partners NGOs of the Alliance often make additional assumptions about why community mobilisation is so important, although there is not necessarily solid data to back up their claims. These include:
  • A diversity of strong and supportive community responses to HIV/AIDS are probably important safeguards to protect and promote HIV-related human rights, which in turn may be central to an effective and sustained response to the epidemic;

  • Repeated health promotion messages through multiple channels are likely to help to sustain behaviour change;

  • More people may respond to prevention and care work if it is linked to other concerns in their lives which NGOs and community groups address, from getting work to spacing children; and

  • Effective and sustained prevention and care probably requires community action on contextual factors such as other sexual and reproductive health and rights issues, gender relations, poverty and discrimination.


Case study: Mobilising and empowering transvestites, FAES, Ecuador
Fundación Ayuda y Educación en SIDA (FAES) was established six years ago in Quevedo - a small town where “everyone knows everyone”. They started as a response to three members finding out that they were HIV positive. The members are transvestites - mostly from poor, rural backgrounds with little education. Many are involved in sex work, alcohol and drug use, and have been the victims of violence. Many have run away from home and live in small groups that work together in cabarets or street corners. Their living conditions are appalling. FAES wanted to respond to specific situations experienced by transvestites, including:
  • Constant mistreatment by the police, clients, and the people of Quevedo;

  • High prevalence of STDs in young transvestites, and a lack of sex education;

  • Guilt, anxiety, fears, and low self-esteem;

  • A lack of opportunities for other types of productive activity.


COMUNIDEC, the Alliance linking organisation, supported FAES in a participatory assessment with transvestites aged 13 - 40, including those engaged in commercial sex and young people recently out as transvestites. The findings of the assessment included:
  • Group members were used to suffering from STDs and not treating them;

  • Awareness that there is no cure for AIDS, but, if asked by a client, no use of condoms. If they use condoms with clients, they did not use them with their regular partners.

  • Many had experienced sexual abuse, and were ignorant about sexuality.

  • It was recognised that their orientation marginalises them from family and society. “We live in a world apart, we dress up, face humiliations, suffer.”


Based on the assessment, FAES developed a programme focusing on the factors that contribute to the group’s vulnerability. The aim of the project is to achieve better prevention of STDs and HIV/AIDS among the transvestites, with emphasis on training in relevant areas, access to health services, and access to and use of condoms. The general objective of the project is to educate, inform and train 32 transvestites, aged 15-30 years in order to achieve better prevention of STDs and HIV/AIDS. The expected results are:
  • A group of trained transvestites who can act as “multipliers” for their group and other sectors of the population;

  • A rise in the percentage of adequate condom use; and

  • Greater access to STD services and adequate treatment.


The project includes:
  • Eight two-day workshops on sexuality, STDs and safer sex.

  • Identifying and developing agreements with health centres and services.

  • Social marketing of condoms.

  • Home visits to follow-up the training and reinforce behaviour change


“Mistrust, curiosity and resentment were the main ingredients of the first workshops, but this changed to an environment in which everyone could express their frustrations and needs and, above all, their wish to be treated like human beings. Now, the project is run by the transvestites. They feel good about their work, and their self-esteem is higher.” Dr Lilly Márquez, a COMUNIDEC Consultant providing on-going technical support to FAES.

Achievements and lessons learned
  • The group feels useful in its work on HIV/AIDS - which has improved their self-esteem. However, it is not easy to achieve self-esteem, due to the situation of everyday violence, fear and anger in the lives of group members.

  • Increased interest in and use of condoms. “When we use condoms we feel safer and not so prone to catching certain diseases.” However, without regular access to condoms and services the prevention work will not be effective.

  • They have begun to reject abuse and discrimination.

  • There has been an awakening of interest in aspects of human sexuality.

  • There now is an awareness of access to services.

  • The Foundation needs organisational strengthening. Leaders need to be trained in facilitation skills.

  • There is increasing access to and demand from the community - both from transvestites and from women who trust the group - to talk about sexuality.

  • It is the only project in Ecuador working on HIV/AIDS with transvestites which is a project of equals where the target population implements the activities.


From involvement to mobilisation
“Everyone seems to agree that community participation is a good thing, but everyone seems to have their own definition of what this means. For some NGOs, participation is using a focus group to test education messages; for others, it is a strategy to gain local co-operation to work on sensitive issues. Those inclined to economics may be attracted to participation as a way of finding inexpensive community volunteers or ensuring financial sustainability beyond funding periods. All these things are important, but I believe what we are learning is that facilitating effective participation is one and the same as facilitating effective community mobilisation. And community mobilisation in response to AIDS may be in and of itself a crucial intervention to catalyse and sustain safe behaviour.”
Jeffrey O’Malley, International HIV/AIDS Alliance

Community involvement
For some NGOs at the “Community Lessons, Global Learning” seminars, participation was essentially about consultation with audiences and recruitment of peers. On an international level, the Alliance has sought to strengthen community involvement by prioritising technical and financial support to nongovernmental and community groups which are closest to their local communities, both geographically and in terms of accountability. The value of reducing the gap between organisations and the communities they serve is appreciated. As Md. Shah Newaz Selim, Community Educator with ACD in Bangladesh, points out: “One important thing is that we are all ourselves from the community...not outsiders from somewhere else. Our families and peers know what we are doing.”

For all its strengths, it has become clear that there are also challenges inherent in this approach. In Burkina Faso, for example, it has meant working with many different language groups in often remote settings of extreme poverty with small organisations, whose capacity to absorb technical and financial support is constrained, and whose geographical remoteness makes them difficult for IPC, the linking organisation, to work with. In Cambodia, KHANA is in its second year of programme development and has decided to work with a mix of smaller community groups and larger NGOs - in order to balance capacity to provide intensive technical support with the need to initiate a number of HIV prevention projects in a country of high HIV prevalence. At the Cambodia country seminar, KHANA explained how this strategy had already resulted in a doubling of the local NGO response to AIDS, despite the intensive technical support needs of most of the groups involved.

Another strategy for community involvement is recruitment from priority populations. Young Power in Social Action (YPSA), a partner NGO of HASAB working with a low caste gardener community in Chittagong, Bangladesh, established their office physically within the community and staffed its team with employees and volunteers from the local area. They have found that this mixture of local personnel is helping to stabilise and sustain both their programme and their organisation. Meanwhile, in Morocco, PASA/SIDA, the Alliance linking organisation, has learned that projects that rely solely on staff or solely on volunteers - even if they are all from the community - are not as successful as those that have a mix of both.

Many partner NGOs have used peer education strategies, in which community members are trained to serve as HIV/AIDS educators for their community. PHANSuP, in the Philippines, has supported a number of NGOs using volunteers and peers from target communities, including Baguio Centre for Young Adults (BCYA) working with youth, and Olongapo City AIDS Foundation, Inc. (OCAFI) working with entertainment workers and people living with HIV/AIDS.

The participation of community members potentially enhances both the effectiveness and accountability of NGOs’ work with communities. As an immediate and continuing channel of communication between NGO and community, ‘peer’ staff can strengthen a sense of community ownership and provide a means of dialogue between NGOs and communities. Evaluations of peer education projects shared at “Community Lessons, Global Learning” seminars suggest that the use of peers improves the credibility and thus impact of HIV prevention messages. Improvements in effectiveness, accountability and reach of projects through the participation of ‘peers’ in project activities, however, seems to require heavy investments in recruitment, training and staff support. High attrition rates are common and the issue of incentives and payments remains problematic, especially in demonstrably poor communities where the payment of ‘peers’ may separate them from other community members and reduce a sense of peer identification.

Working with communities in Burkina Faso
“IPC-supported associations must be based in the communities served by their activities, whether relating to AIDS prevention or to care for people with HIV/AIDS. IPC believes that the closer the proximity between members of the associations and the community targeted by their actions, the more developed their capacity to identify needs and the more adequate their response to those needs.”
Report of IPC’s 1997 Partners’ Meeting, Burkina Faso

“In Burkina Faso, NGOs have worked alongside small, informal community groups to mobilise local people to respond to HIV/AIDS. For example, CEPROFET, an agriculture and development NGO, has worked with groups in 13 villages in the Gonse region. With the support of IPC, the Alliance linking organisation, they have raised interest and action through community meetings and discussion groups about gender, self-confidence, sexuality and STDs.”
Extract from “Alliance News”, June 1998

Building relationships with communities
Many of the Alliance’s partners confirm to the importance of creating relationships of respect with their communities, and a willingness to acknowledge community expertise. The trust that develops between NGO and community also depends on clarifying the ‘fit’ between community needs and desires, project aims and resources, and also on discussing unrealistic expectations. This is an important aspect of community assessments and project planning. For example, rural community development NGOs in Cambodia starting HIV prevention projects with the support of the Alliance’s linking organisation, KHANA, found that villagers expected the HIV/AIDS educators to be medical assistants, bringing much needed medicines into the village. When they did not, the villagers became frustrated with the HIV/AIDS projects. This disaffection could have been avoided if more care had been taken in designing the project with villagers and agreeing what the project could, and could not, offer to them.

Another issue highlighted during country seminars is that, in building close and constructive relationships with their communities, partner NGOs have also been careful to differentiate with whom it is important to develop what kinds of relationships. While it is necessary to work with formal community leaders (often older, richer men), Alliance partner NGOs make use of the concept of stakeholders in building relationships with differing groups which have a key influence on project effectiveness. This includes informal opinion leaders, gatekeepers (such as brothel owners and commanding officers in military establishments) and, most importantly, the intended beneficiaries themselves, however marginalised or hard-to-reach they may be.

Introducing HIV messages over time
“In the beginning, after the needs assessment, we spent three months building a close relationship with the community. We started by discussing general health and social issues - such as diarrhoea, family planning and personal hygiene. We then gradually began to talk about our project and to generally introduce the issue of HIV/AIDS. We found that this approach meant that people were interested in our work and gradually wanted to know more and more about the issues.

As the relationship grew stronger, we began to talk about issues more explicitly and in more detail. Having first created a supportive environment, we found that we could talk openly about issues such as STDs and sexual behaviour. It wasn’t something that happened in one day, it was a gradual process of slowly building and strengthening our relationship.”

Monirul Islam, Co-ordinator of ACD, working with young Bangladeshi women being trafficked across the Indian border.

 
Many of the “success stories” cited by NGOs in the “Community Lessons, Global Learning” seminar series stemmed from the use of participatory methods in community assessments and project design. Techniques shared included community mapping, body mapping, venn diagrams, ranking and scoring, seasonality charts and personal lifelines. As noted earlier, these approaches helped NGOs respond to real needs of community members, and develop strategies to address important contextual issues.

Having benefited from these methodologies, a number of NGOs used the opportunity of the country seminars to explaining how they are trying to respond to an increasing understanding of vulnerability and context - and to emphasise how they have successfully reassessed their own behaviour and attitudes as facilitators of social change. Some of these NGOs noted that, in order to be able to facilitate participatory development, or to use PRA techniques, they had to "unlearn" many of the attitudes and behaviours that they had acquired in other work. As Jerker Edstrom, Alliance Programme Co-ordinator for Asia explained: “NGOs staff and volunteers are learning to step down from the position of "expert," and learn from the communities they work with. Changing attitudes and behaviours is often the most important - and difficult - component of this work.”

Many linking organisations are now encouraging NGOs to establish more participatory processes beyond assessment and design and into implementation and evaluation. An interesting minority of NGOs have already made progress in this area, thanks to staff or volunteers with the skills, attitudes and dispositions to view their HIV work as a process of establishing broader participatory processes within communities - in the hope that these continue not just through project implementation but beyond.

The consensus emerging from “Community Lessons, Global Learning” is that the most successful cases of participation leading to real mobilisation for social change involve NGOs which combine:
  • simple and flexible methods;

  • equalising behaviours and attitudes of their own staff; and

  • empowering processes and frameworks.


Community participation can have a transforming effect on the individuals involved. IWAG Dabaw, a Filippino NGO working with gay men, found that its peer educators developed into community organisers and counsellors. The voices of the women of Despertando in Ecuador are a powerful testimony to the transformative potential of participation. What sets aside these projects from so many others is the realisation of what UNAIDS has described as the basic principle of community mobilisation: that the people involved can now say “We did it ourselves”.

Comments
A view of participation
“A participatory approach means going beyond conventional IEC [information, education and communication] and into actually involving the community. In that way, our work can have a meaning - in terms of social, cultural, political and economic impact on sustainable human development. If we want to have a relevant response, we need to understand and integrate community members on an ongoing basis.”
Baba Goumbala of ANCS, Senegal

Community participation in community change in Ecuador
“We began to realise that the women of Guasmo Norte could work together for the benefit and health of the whole community. The women and youth in our area now know the reality of sexual health. The team of women is my family. We’ve worked together and grown together.”
Angelita Ullauri, member of Despertando

“This project has been very successful for us in a personal way and in terms of showing what women in El Guasmo can do....The most important thing of being part of the group has been to show that community women have a role in improving their own lives and those of the people around them....We’ve shown that we can make a contribution to improving the quality of life of the community.”
Malena Lara, Co-ordinator, Despertando

Participation to policy
At the institutional level, locally-governed linking organisations serve as a channel through which the voices and interests of communities may be heard in national policy and programme dialogues. In 1997, for example, KHANA organised a national strategic planning workshop and the country seminar for the NGO sector - both of which brought together an unprecedented number of small NGOs and community groups to discuss the government’s National Strategic Plan for HIV/STDs and to decide on the NGO sector’s priority roles within a co-ordinated national response. The words of Pawana Wienrawee, UNAIDS Country Programme Officer, in her closing speech to the country seminar serve as a fitting tribute to the importance and nature of community participation in HIV prevention: “Where is the hope for Cambodia? People like you in the community who are the staff of the local NGOs. I believe that local NGOs hold the key to an effective response to AIDS in Cambodia.”

Lessons learned and challenges for the future
As the experiences shared in “Community Lessons, Global Learning” demonstrate, greater community participation is a key to more relevant, accountable and sustainable HIV prevention projects. The key lessons and challenges include:

  • Consultation with community members, involvement of peers in certain aspects of service delivery and paying attention to relationship building are minimum requirements of effective programmes. This is easier when NGOs are themselves close to the community in question, but a wide variety of models now exist to help all NGOs do this work effectively.


  • A more intensive view of community involvement, but potentially far more effective, goes beyond consultation into participation and mobilisation. The investment needed for this approach needs to be compared to its impact, not just over the life of a project, but beyond.


  • Participation does not depend on techniques alone. Effective technical support focuses on the attitudes of respect and relationships of trust that NGOs must develop to promote community participation.


  • Participatory approaches change the relationship between NGOs and communities. They require that NGOs listen to communities, respect community expertise and mobilise communities as partners in HIV/AIDS prevention and care.


  • Strong national NGO responses to HIV/AIDS usually combine both grass-roots or constituency groups and professional non-profits. There are particular challenges in providing both technical and financial support to community-based, grassroots organisations which may have limited capacity to absorb it, but the investment seems worthwhile especially when links are fostered between these community groups and larger NGOs. These links can also enhance the participation of highly marginalised communities in national policy dialogues pertaining to HIV.


Source: Beyond Awareness Raising
This is an extract from Beyond Awareness Raising: Community lessons about improving responses to HIV/AIDS, published by the International HIV/AIDS
Alliance in 1998.

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