Having an honest conversation about ethics in participatory research

NCRM news
Akua Quao, Senior lecturer in Public Health, University of Central Lancashire
A network of wooden cubes with speech bubbles linked to each other with linesA network of wooden cubes with speech bubbles linked to each other with lines

I am one of several organisers of NCRM’s Collaborative and Participatory Methodological Special Interest Group, which has helped to shape a new webinar series called Critical Conversations. As a senior lecturer who is also currently completing a PhD, I was keen to hear from other researchers working with participatory methods during these sessions, the first of which looked at ethics.

In this opening session, four speakers shared their short and snappy "lightening talks", providing an insightful and stimulating overview of ethics with reference to participatory research. These talks were followed by breakout sessions where extensive debate around the strengths and challenges associated with participatory research were discussed with participants from across the UK. In this blog post, I share my thoughts on some of the main talking points from the event.

The lightening talks

Nicole Brown

Nicole is from the Institute of Education, UCL. She began by reminding us of the criteria that underpin and define participatory research. Reference was made to work by Tandon and the fact that for participatory research to be authentic participants must have a role in setting the agenda, taking part in the data collection and analysis. However, based on observations of researchers in practice, Nicole suggested that we should not aim to conduct participatory research for many reasons. Often what is presented as participatory research is not, in fact, participatory. There appears to be a misunderstanding that because a researcher is using creative methods they are doing participatory research.

Nicole pointed out the importance of recognising that there is a continuum in practice where, at one end, there can be minimal participation and, at the other end, the participants are co-researchers, which is congruent with the definition from Tandon of "real" participatory research. Therefore, being clear about the distinction between engagement, participation and involvement is crucial when using participants as experts in health research or as consumers.

Concluding her talk, Nicole stressed that participatory research should be more than transcending the power hierarchy. Participatory research is considered as a political and activist activity, and the real purpose of participatory research is to bring about change and make the world a better place. For this to happen, as researchers we must ensure that participants know and understand what they are engaging in as they disclose and share in the research process.

Izzie Latham

Izzie Latham, the Researcher in Residence for Hallmark Care Homes, spoke about how participatory methods have the real potential to enhance ethical practices. This is particularly the case in studies involving people living with dementia, or those in the area of learning disabilities and mental health. The dementia engagement and research project that Izzie leads on at Hallmark Care Homes involves reviewing lots of ethics processes and has highlighted that these can be time consuming, resource draining and most importantly excluding for people living with dementia. Izzie referred to work by Dewing (see publications from 2002, 2007 and 2008) who challenges us to think about how we seek consent from people living with dementia in research, considering both informed consent and process consent. Informed consent as it currently stands is cognitively biased towards those living with cognitive disabilities.

From Izzie’s experience, participatory research approaches allow for better ways for gaining consent from those who are able to give it. The approach also enables better involvement and honouring of those who lack capacity. With participatory approaches, a researcher can help people to understand concrete rather than abstract ideas, which reduces their reliance on memory. There can be less focus on talk and more practical elements. The benefit of this is that it reduces the reliance on language, which means a participant can show consent through body language, allowing for situational consent.

Participatory research provides a good opportunity to illustrate person-centred practice to others. Izzie said: "For example, if I give out a piece of paper and ignore anyone who can’t sign the paper, I send a contradictory message."

The approach also utilises the expertise of others such as family or friends; it is through the people who know the participant best that we can request their consent. In conclusion, participatory approaches can enhance ethical practices through the commitment of the researcher to building relationships that are enabling and honouring towards participants.

Julia Hayes

Julia Hayes is a disability inclusion consultant who is commissioned to work for many children’s and young people’s organisations. In this talk, she shared her experience of participatory research with children with disabilities in countries in the global south. Despite this being a growing area of educational research, the voices of the children in the global south are not often found in mainstream research. Julia’s concern is that researchers may be apprehensive about how they get children involved in research, as the process may seem complicated, so they are currently excluded.

This raises the issue of researchers exploring the "how" of methods, as well as asking whether the research project is ethical from the very first idea to its conclusion. The key question that underpinned Julia’s research is: "what and whose truth will my research perpetuate?"

There is a common global narrative supporting inclusive practice in education. However, substantial research points to the fact that in the global south it is not working as effectively as expected.

Julia proposes that an appropriate and critical approach would be to think about what the different ideas and interpretations about inclusion are. To be effective, this must be done with reference to context and culture with an exploration of what works well locally. She argues that we must look at the north and south inequalities, and acknowledge the positive enabling factors, if we are to conduct disabilities research effectively. She also encourages researchers to think broadly about the impact of intersections, such as poverty, gender, race and how they construct and perpetuate disability. In conclusion, it was emphasised that by employing situated ethics we take into account the local experience with an understanding of what already works in that culture and is sustainable for the future.

Niamh O’Brien

Niamh O’Brien, from Anglia Ruskin University, discussed situational ethics, more specifically ownership of data and the data interpretation of findings. This problem within participatory research is related to communicating to co-researchers and community members that the recommendations and actions from the research project are co-created.

The involvement of the community in the analysis brings a new dimension to findings from the project as participants bring their lived experiences to the discussion. This resonates with work by Veale, who states that the "main purpose of participatory research, is the generation of knowledge through academic and local expertise to provide people with the tools they need to make changes in their lives".

This co creation of knowledge will impact how data is analysed, co researcher and community members might want to highlight the positive outcomes from the research and steer the analysis towards a biased interpretation of the data. Niamh stressed the importance of recruiting a steering group to bring about clarity, balance and transparency around the analysis and theme generation.

To conclude, Niamh stated that all research has a beginning, middle and end. From her experience, people join research projects for different reasons. For example, during lockdown she was involved in a research study about support for care leavers. It became apparent that the weekly meetings were important because it was the only form of social contact that participants had. As a result, a chat group continued after the project ended. Therefore, in participatory research it is important to acknowledge how the end of the study affected those who participated.

My final thoughts

The safe space created by this event and the energy generated, enabled a level of openness and willingness to find answers to what I came to understand as prevailing problems, quite literally critical conversations were had! As a PhD researcher, I found it reassuring to hear the experiences and views from a range of people about the practical challenges and solutions developed. I left this Critical Conversation with confidence that there is a growing network of participatory researchers working towards providing strategic and practical solutions as they seek to enhance the profile and integrity of participatory research.

Visit the collaborative Padlet to access lightening talk slides and other resources