How to improve the engagement of communities in research?

Alice Obrecht of ALNAP moderated this session. Panellists were Gwen Luc of Action Against Hunger (AAH) Link Nutrition Causal Analysis (NCA) project, Lillian Omutoko of the University of Nairobi and Stephen Kodish of the World Food Programme (WFP), who were asked to talk about their area of work and how they had engaged communities in research.

Gwen Luc described the approach of Link NCA, which is a participatory method of assessing the causes of malnutrition in a community and facilitating agreement on which ones to prioritise. Researchers meet to examine available evidence on the prevalence of malnutrition and the range of underlying causes. Communities decide whether the causes identified represent priority problems for them and hold discussions with the researchers to reach agreement on how they can be addressed. The methodology can be adapted to different contexts; the aim is to use existing data to better understand the mechanisms that lead to malnutrition. There is a focus on risk factors identified by the community: what the community considers to be its main problems and the central risks underlying malnutrition. Community action plans are developed which identify problems, solutions and what is needed to put them into action in the prevailing situation. Social behaviour-change communication (SBCC) approaches are used to examine how to address the problems identified.

Lillian Omutoko spoke about HIV/AIDS research and vaccine development in three African countries with high prevalence and infection rates: Uganda, Kenya and South Africa. In each country vulnerable populations were fully engaged in the research. Each situation involved marginalised and highly vulnerable people in environments where there were a high number of deaths. Research was dependent on communities to the extent that HIV vaccine development would not have been possible without community engagement. Communities were involved in recruitment of trial participants as well as ongoing outreach throughout the research period. The project provided leadership development to train community leaders in research development with the aim of avoiding the exploitation of communities and to encourage ownership of the trials and the findings.

In urban, informal settlements of Nairobi there were various forms of engagement with communities. The research protocol required establishment of community advisory boards to guide researchers on managing expectations of communities and how to pursue community entry and engagement. Communities were trained and supported, based on their needs, which could either be community-driven or research-driven.

Stephen Kodish described how WFP moved from food aid to specialised foods and at that point recognised an increased need to concentrate on demand as well as supply. He illustrated an example from Kakuma refugee camp where a micronutrient powder (MNP) distribution achieved just 30 per cent uptake by the target population. This highlighted the importance of involving communities and developing culturally appropriate messaging, which entailed more in-depth consultation and research in communities than the organisation had previously contemplated. Critical to this approach was taking the findings of the qualitative and ethnographic studies back to the community to check them before finalising the conclusions. Sometimes this validation exercise resulted in a change to the final conclusions.

Some common themes emerged from the experiences shared in terms of the need to work flexibly and openly with communities and to prepare to be genuinely community-led where necessary.

Complementarity of researchers and communities in working towards effective solutions

The Link NCA model seeks to ensure that research findings are taken up by the community and therefore has an emphasis on agreeing practical and effective solutions. For example, in a Niger Link NCA, the impact of women’s workload was highlighted as one of the multi-sector causes of malnutrition. Researchers sought to sensitise men and women and encourage men to assist women with household chores, such as collecting water. Women identified that carts were the solution; men would not carry water on their heads for fear of being laughed at, but they could collect water with a cart. This example highlights that it is essential to identify not just technical solutions but approaches that are also culturally acceptable and feasible. In this case, the complementarity between the technicians/experts and the community led to an effective solution.

Combining formal and informal approaches

Both formal and informal approaches are required when working with communities. For example, the HIV/AIDS researchers promoted the establishment of advisory boards in each community they worked in. Approaches to setting up these boards were contextual and often informal. For example, in South Africa pre-existing women’s groups formed the advisory boards. This helped with retention of board members and enabled strong outreach as the women’s groups had already established access to vulnerable households in the community. In Uganda, football and drama were employed for sensitisation and dissemination of research. In Kenya, groups with higher prevalence of HIV, such as lakeside fishing communities, were the focus for community engagement and SBCC. Defining which community approach is best is a context-driven decision.

Methodological challenges when working with communities

There was discussion about how to mix quantitative data with ‘something of value’ from the community and how to ensure rigour in qualitative approaches to obtain data that represent some ‘truth’. There are established rigorous methods to carry out social, qualitative work and analytical methods are available. However, much participatory work is unpublished and therefore may be less available to those seeking reference to robust studies. Measuring the impact of community engagement is a challenge and innovative partnerships are needed between researchers and communities to develop a successful approach.

A difference of power exists between a community and researchers and there are also power differentials within the community. To reach the most vulnerable in a community is often no easy task and there is a need to establish models to guide engagement of communities. Examples were given of work in Niger and Chad where women were not used to giving their opinions. Community entry to carry out research is not easily achieved; it requires contact people and the authority to find the people in the community that you need to work with.

Who is the community? Who is asking the questions? The researchers are frequently the ones defining the issues and the research priorities. An example was shared of an evaluation of a cash-transfer programme in northern Kenya. Non-governmental organisations (NGOs) and local government were invited to identify community groups, after which the evaluators met with eight community groups. They listened to them to understand their context before posing any questions and asked them to rank the issues of importance to them. This revealed that the evaluators had overlooked discrimination in the community (of orphans and single mothers) and issues were presented that they had not previously considered.

Does all research require community engagement?

While opinions differed over whether all research requires community engagement, it was noted that ‘community’ may be represented at different levels and government or local authority representatives might be good places to start. However, engagement should start at the design phase and continue all the way until feedback of analysis and findings is given to the community; this final part is too often left out. In some of the Uganda and Kenya HIV studies participants complained that they were being treated as ‘guinea pigs’. A lack of trust between the researchers and the community resulted in the research having to stop. This highlights that the community needs to perceive the benefits of the work for its members and that their willingness to take part is critical.

From research to programme design

It was noted that the Link NCA tools are also applicable to operations and can be used for community consultation to assist in understanding contexts and adapting programmes accordingly. The tools facilitate a process of looking together with communities for solutions and developing community action plans adapted to the context. More visible results have been noted in programmes that have invested in a higher level of community engagement to develop culturally sensitive approaches. However, time available for assessment of the situation is one factor that often restricts effective use of this methodology.

The social dynamics of poverty need to be understood to enable design of appropriate programmes, which means talking to the community and understanding population dynamics. For example, in many communities, a discussion with mothers quickly reveals that fathers and/or mothers-in-law are the ones who make the decisions. Programmes focusing on discussion and counselling solely with mothers are therefore liable to have limited success. People living in poverty often have a social network to draw on, which merits thorough understanding. Simple questions such as, ‘Who can you go to if you need food tonight?’ can help tease these out. Knowledge and beliefs of the target community also need to be well understood; for example, during the Ebola emergency many people did not understand viruses enough to value the protection of hand-washing.

Conclusion

This rich and varied sharing of experiences concluded with a strong affirmation of the value of engaging communities in research and a recognition of the need to continue to enhance current practices and seek innovative methodologies to improve the quality of that collaboration.