By Kim Ozano, Abu Conteh, Laura Dean and Kate Hawkins

ARISE will engage with communities in participatory method design, data collection and analysis to develop priorities and actions. To make this a reality we are debating the community based participatory approaches we will use. It’s a rich and challenging discussion! In this blog we outline some issues which are taxing us. How can we build on existing community strengths? How can we ensure that the most marginalised community members are included in our research? What safety challenges will we face in the research process? So, if you have experienced any of the same dilemmas, please comment below. It would be great to talk and share experiences!

How to build on existing community structures

ARISE wants to engage and work with existing community structures and processes. However, how to do this is not straightforward. We have had a lot of discussions about the best way to introduce the project and how to capitalise on the strong work that is already underway in relation to accountability and health.

Researchers and co-researchers (their community counterparts) recently met in Sierra Leone. There is a lot going on in the informal settlements of Freetown. Community members are actively collecting data contributing to local development and advocating for change. Because of this, co-researchers wanted to take advantage of these pre-existing structures in the ARISE research. They felt very strongly that setting up parallel ‘research specific’ systems was risky because they might not properly respond to the situation in informal settlements.

For example, representatives from the Federation for Urban and Rural Poor (FEDURP) believed members who are community mobilisers would be good at raising awareness and explaining the purpose of the research. However, communities didn’t always think these community mobilisers were ‘trustworthy’. As a result, other FEDURP members – who are passionate about accountability and health – might be better at data collection or facilitation. These passionate change makers need to be identified by community members as opposed to being handpicked by powerful community members. We discussed how incentives can compromise organic processes to identify change makers and should only be offered later in the research process. Therefore, the process of selecting co-researchers was systematic, trying to select the best from FEDURP, community representatives and community mobilizers. Selection was based on skills such as facilitation, mobilization, community activism and awareness raising skills, particularly on health.

Defining researchers, co-researchers and participants

FEDURP felt part of the ARISE research consortium, particularly as they had been part of the original consortium planning process. They were confused about whether this made them co-researchers or researchers. FEDURP is a representative organisation for people living in informal settlements. Does this immediately make all its members co-researchers? If FEDURP is a core-part of the ARISE family, should all co-researchers in Sierra Leone be members of FEDURP? Members of FEDURP, who also live in informal settlements, became further confused when they considered that they could also be ‘participants’ in the research process.

As we moved through our conversations it became clear that co-researchers should not be considered a uniform group with a ‘one-size fits all’ definition for their engagement, roles and responsibilities. Community members and organisations might move through different positions/spaces of participation in a fluid way. Co-researchers and researchers must develop trust with each other, the process cannot be forced or pre-designed, rather organically developed alongside the research.

How to facilitate the engagement of marginalised groups

Pre-existing community platforms for engaging co-researchers are unquestionably valuable to a new research project like ARISE. However, we want to ensure that marginalised or vulnerable community members are equitable participants in the process. These people may be less able to participate in pre-existing community development and advocacy. So, we will need to look for new ways of engaging to make the process inclusive.

We have been grappling with the dilemma of what to do when marginalised groups are disempowered and as a result unable to participate as co-researchers. Co-researchers – who have local knowledge on what is feasible and acceptable – could adapt participatory methods to better engage marginalised groups. Getting a better understanding of how marginalised groups like to communicate (e.g. through storytelling, drama, drawing pictures) and working with them to create outputs may help them feel more empowered. Informal discussions and ethnographic observation – interacting with marginalised groups in their own settings – might spark ideas. We also considered using ‘gatekeepers’ (or powerful people or institutions who provide an entry point to marginalised communities). For example, disabled persons organisations will usually know how to communicate with their constituency and support their participation.

Working with children and young people

Children and adolescents in urban informal spaces are often vulnerable to ill-health and have difficulty accessing accountability. However, we are concerned about how to ensure that we have a clear process of consent for their engagement in the research. Often children do not have a parent or guardian that can agree to their participation. We must strike a balance between the democratic principles of participation and empowerment and the ethical challenges of appropriate management, support and protection. Collaborative projects with young people are key to understanding their experiences of health and well being. But young people are often excluded from, or left out of, research projects.

Other marginalised groups

People with cognitive or intellectual disabilities may not be able to provide consent through conventional processes and we will need to account for this in the way we work. Sex workers and  LGBT people may not want to be involved because they don’t want to be identified. These groups might be reached through community agents who have connections with them. We will continue to explore this ongoing dilemma during our research.

How to minimise risk and harm

We want to ensure our work is ethical and that people are safe. Community members and co-researchers might be put at risk if: tensions arise about the choice of co-researchers; communities are hostile to data collectors; or the findings of the research cause ructions.

Our discussions have thrown up a number of strategies to mitigate risk. We will involve communities in selection of co-researchers. That way they have ownership over the process and are more likely to support the research. We will try and be open and transparent in our working practices – communicating our intentions and the process. Research teams will keep an open dialogue going to keep abreast of emerging risks. It is important that ethics and safety are central to researcher training on participatory methods. They will be are aware of the boundaries of their role as researchers and put the safety and wellbeing of communities first.

Concluding reflections on participatory research

As ARISE is rolled out, we are thinking critically about power and participation. What does this mean in practice and in terms of generating equitable research partnerships?  We are particularly keen to disrupt the balance of power between ‘researchers’ and the ‘researched’. Working through ethical dilemmas together and documenting this process will help us to learn and share with the wider research community.

There is no single blueprint for participatory research. It is a process rather than a set of uniform steps with predictable outcomes. Because we all come from different starting points, we have created an internal community of practice to exchange ideas.

We welcome, through the comments below this blog, insights from others who have experienced similar dilemmas.