UNIVERSITY OF THE WITWATERSRAND, JOHANNESBURG

The LINC Office - Learning, Information dissemination and Networking with the Community

The Agincourt Research Unit has enjoyed the support of its host communities for nearly 20 years. Since the inception of the unit in 1992, community consent for all research activities was obtained from both civic and traditional leadership, and verbal or signed consent continues to be obtained at household and individual level. However, community-based surveillance work over a prolonged period rests on stable long-term relationships which need to be nurtured and fostered. Primary relationships are between the Agincourt Unit?s LINC office, the 22 elected village Community Development Forums in the study site (three of the 24 villages in the site have a join leadership) and the 21 indunas (chiefs) in the area.

Mission

The LINC office (Learning, Information Dissemination & Networking with the Community) aims to improve local, district and provincial access to and use of research results and to add value to the research conducted in the site.

Objectives

  • To build an evidence base on an effective means of community partnership in a long term demographic surveillance site through:
  • Learning and adding value to research: enabling two way learning opportunities between researchers and community members, maintaining community willingness to participate in research, and ensuring dignity of research participants.
  • Information dissemination: enabling the research site community and service providers to have access to and make effective use of research results.
  • Networking and Community engagement: enabling effective and appropriate community participation in guiding and informing research processes in the site, and developing an appropriate participant support programme.

How does community governance work in the field site?

The field site covers 25 villages in the Bushbuckridge sub district of the Ehlanzeni District of the Mpumalanga Province of South Africa. 7 of these villages fall under the Amashangana Traditional Council, 16 under the Jongilanga Traditional Council, 1 under the Hoxane Traditional Council and 1 directly under the municipality. Although the political power of the traditional councils has decreased considerably since 1994, they are still respected leaders in the community, and are consulted on most matters affecting development.

Local governance operates at three levels ? Municipal, Ward and Community Development Forum (CDF). There are 7 municipal wards represented in the Agincourt Field site, each of which has a ward councillor who is accountable to the municipal offices and to the CDF. Each village CDF is made up of two representatives from every Community Based Organisation in the village, and the Induna (Chief) as a representative of the Traditional Council. Before the CDF is formally recognised by the municipality, issues such as gender representation are investigated to ensure that it complies with government regulations concerning gender and disability representation. Each five villages elects a paid ward councillor two years after every national election ? and this ward councillor, together with the ward council (one person from each of the 5 CDFs) represent village concerns to the municipality. The Indunas of each village meet at their respective Traditional Council offices once or twice a week.

All the CDFs, Indunas. Ward Councillors and local Municipal Officers in the field site are well known to the LINC team, and there is a good working relationship between the team and village leadership. LINC meets with the CDFs when required either at the regular CDF meetings, or at a special CDF meeting requested by LINC or by the CDF. If LINC wants to meet with the Traditional Council, visits can be arranged on the day that all the Indunas have their joint meetings.

LINC Interaction with Communities

Routine interaction includes informing village leaders and communities of forthcoming census updates and research projects, well-prepared feedback and discussion of research findings at village meetings, village leadership meetings and clinics and regular production of village ?fact sheets? to support local development initiatives. Contributions from all research projects conducted in the site are an expectation.

Each research project has to be approved by the Wits Ethics Research Committee on Human Subjects, and also has to be approved by the Mpumalanga Province Health Dept Ethics Committee. These committees are particularly concerned with the consent forms that are used in each project, reasons for the research, and real and potential benefits to the community. Informed consent is either verbal or written, and the field workers are thoroughly trained in the implementation of informed consent prior to each project.

All research projects that are conducted in the field site have to ask formal permission to undertake the research activities from the CDF, the Induna and the community of the villages in which they want to work. We approach the CDF to ask them to call a community meeting at which the research will be presented to the community at large. The date and time of the meeting is set by the CDF. The research team explains the research question and methodology at the meeting, and time is allowed for the community to ask questions. The annual census is also introduced to the community every year, in the same manner.

In general, the types of question asked by the community at this meeting concern the purpose of the research and what benefit if any will be brought to their own community through the research. Often the research in itself does not bring benefit directly to the community but it is explained to the community that the research will affect policy that will in the long run improve their lives. Any possible direct benefit is explained to the community, but the team is exceptionally careful never to make false promises and raise false expectations. Comments such as the following heard at the community entry meeting of a project about to take place in only two villages, indicate the willingness of the community to participate in the research process.

"Why are you taking the same number of houses in both villages. Our village is bigger so we should have more houses involved in the research?"

We also regularly get asked by the ward councillors of the villages surrounding our study site when we are going to expand the site to include their village showing that the village leadership within the site find the research activities and results of benefit.

Since 2007, the LINC office worked with another research organisation to develop a voluntary Community Advisory Group (CAG), with a representative from each village and each health committee in the study. The CAG was responsible for reporting community based problems regarding that research project to the LINC office, and assists greatly in calling village leadership and general village meetings. Although links between Agincourt and the other research project were severed in June 2009, the LINC office saw the tremendous benefit that the CAG brought to the community and to the research itself, and a new CAG for the Agincourt Unit itself was initiated in June 2010, with the support of an HPTN funded project.  This CAG meets once a month, and its main role is to be the eyes and ears of the unit in the community, and represent community concerns to the unit.  The CAG also gives comment in informed consents and questionnaires for any research project requiring such input.  The CAG is also supported by the South African AIDS Vaccine Initiatives Masikulisane project.       

There is a strong commitment to official feedback and collaboration with relevant public sector departments and local government in the Mpumalanga province (including district and provincial departments of health and welfare, education and environmental affairs; the District Community Development Office; and the local municipal offices). Initially, this involves bringing policy-relevant research findings to their attention, and then participating in program development. Research on access and barriers to uptake of the child support grant is an example of policy-related work that culminated in 2006 in successful interventions to increase access for local communities (two-day mobile home affairs and social security campaigns in 20 villages resulted in 8000 people applying for identity documents and birth certificates), and that had a wider impact through the Agincourt Unit's involvement on a provincial task team to increase vital documentation, and its leadership role in a municipal Orphans & Vulnerable Children Task Team. The pilot project in the study site was rolled out across the district.

Every project, including the annual census, gives feedback on their results to the relevant communities both reporting on the progress of the reserach and on the results once the research has been completed and the data analysed. Village fact sheets are distributed to village leadership and service providers every year. Again the CDF organises a meeting to which the whole community is invited. Statistics kept from the last four annual census feedback meetings show that numbers of people attending these community feedback meetings is steadily increasing, indicating that the community finds these meetings useful. The types of questions that the community asks at these meetings have changed over the years. In the past, questions focussed on requests for assistance for provision of basic services, but as the years have progressed, questions are now focussing more on how to prevent health problems, and about research methodology itself. Recently, innovative methods of data dissemination e.g. the use of community theatre have been tried. The community feedback sessions involve not only provision of the research data, but also health promotion around the topic researched, in verbal as well as written form. Experts on the health promotion topic to be discussed are called in to run these health promotion sessions, or to training the field workers to run the health promotion. Short one-page summaries of the research results are also given to the CDFs.

Since 2002, the LINC office compiles and updates information directories on development, education and home-based care resources for the use of community leaders, local organizations and researchers.

Benefits of LINC to the Wits/MRC Rural Public Health and Health Transitions Research Unit (Agincourt)

The LINC office supports the HDSS and projects nested in the HDSS through:

  1. Assisting in ensuring that socially responsible research occurs in the site
  2. Maintaining a village leadership and service provider database
  3. Developing an effective research result feedback process on local, district and provincial levels
  4. Monitoring and evaluating the use of the data at these levels
  5. Ensuring that appropriate community entry is undertaken for all projects