Participatory research and power

By Diana Rose

Diana Rose
Diana Rose (biography)

Can even the most well-designed participatory research really level the power relations between researchers and the relevant community? The key issues are who sets the research agenda, who drives the research process and governs it, and who interprets information. In all these aspects of research, the aim is for the community to no longer be ‘subjects’ but equal partners.

In this blog post, I outline challenges to achieving this mission, so that we can be realistic about what’s involved in trying to achieve equal partnerships. The difficulties identified are not proposed as tensions to be ‘solved’ but as dilemmas that can be articulated so as better to facilitate good practice, not reach an unattainable perfect state.

In my research on mental health services, my team and I are mental health service users ourselves and are therefore more intrinsically part of the community being researched. My research team and I disclose our mental health experience with the objective of making the research a non-hierarchical and non-medical space. Meetings are held in community venues, not hospital premises. This is in contrast to most participatory research projects where researchers are external to the community they work with and have a single ‘professional’ identity, even though this may be constantly put in question.

Nevertheless our research has identified major challenges. I describe these using five questions that researchers can ask themselves in their attempts to establish good practices.

Are there differences in compensation for being involved in the research?

In our research, participants are paid for their contributions. However, in the UK, where our research is conducted, welfare benefit regulations limit the amounts that can be paid. Thus, researchers and researched are not equal in this respect. This discrepancy is common in participatory research.

Is full participation of all community members possible?

In our research, we do not have unfettered access to potential participants. To find people who would like to participate, our gatekeepers are the mental health professionals who have primary responsibility for them. These are mainly nurses and social workers and they are selective in whom they put forward. They routinely filter out potential participants who they deem to ‘lack capacity’ (although no formal assessment occurs) or too chaotic. Often these are the very people most affected by the research topic. They may also, for reasons of beneficence, exclude people with ambiguous or no residence rights. In any participatory investigations, researchers are unlikely to engage all sections of a community equally because there will always be gatekeepers, often elders in low resource settings

Are there systemic injustices?

In mental health services in both the UK and USA, people from black and ethnic minority communities are more likely to be detained and compelled, more likely to receive a diagnosis of psychosis, more likely to enter mental health services via the police and less likely to receive psychological services. Including black and ethnic minority community members in research is vital but at the same time they cannot be expected to carry the weight of the history that has led to the injustices described. In addition, the anglophone scientific paradigm of generating knowledge through empirical research may not be adequate to capturing the systemic injustices at stake. One participant put this succinctly: “Stop treating us as guinea pigs, as the problem. Research yourselves and the systems you create and inhabit”. A base context of systemic injustices is common in participatory research.

Do participants perceive power relations as equal?

While researchers can control how we present ourselves, we cannot control how we are perceived. At the end of one focus group in our research, a participant said “oh, I forgot you are not psychiatrists”. For this participant at least, something about the very fact that we ran the groups made them like any other research encounter, and what these participants are used to is research run by clinicians. Such perceptions are even more likely when researchers are external to the communities they work with.

Is there a potential conflict between reciprocity and not contaminating the research?

We often emphasize a principle of reciprocity. But at the end of one focus group, a participant asked me if my experience had been the same as that described during the group. I had not anticipated this question and did not give an adequate answer. This was a lesson for future research. Participatory research such as ours requires a balance between disclosure and not contaminating research, an issue which should be thought through beforehand. This may also be a problem for participatory research more generally.

As these examples aim to demonstrate, the whole issue of equal partnerships requires much deeper interrogation and a new set of research principles to facilitate good practice and to explicitly describe inequalities that remain. What have your experiences been? Are there other key questions that should be asked to establish good practices?

To find out more:
Rose, D. (2018). Participatory research: Real or imagined. Social Psychiatry and Psychiatric Epidemiology, 53: 765–771. (Online) (DOI): https://doi.org/10.1007/s00127-018-1549-3

Biography: Diana Rose PhD is Co-director of the Service User Research Enterprise and Professor of User-Led Research at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London in the United Kingdom. She has also been treated by mental health services all her adult life and uses that experience to conduct as best she can research led by consumers, or in English terminology, survivors.

Five principles of co-innovation

Community member post by Helen Percy, James Turner and Wendy Boyce

Helen Percy (biography)

What is co-innovation and how can it be applied in practice in a research project?

Co-innovation is the process of jointly developing new or different solutions to a complex problem through multi-participant research processes – and keeping these processes alive throughout the research.

James Turner (biography)

Our experience has been applying co-innovation as a research approach to address complex problems in an agricultural context, however, the principles apply well beyond agriculture. Co-innovation is most suited to hard-to-solve technical, social, cultural and economic challenges. Such challenges have no obvious cause and effect relationships, as well as many different players with a stake in the research problem and solution. These include policy makers, industry, community members, first nations representatives and others who are involved in the research as partners and stakeholders. Continue reading

Trust and empowerment inventory for community groups

Community member post by Craig Dalton

Author - Craig Dalton
Craig Dalton (biography)

Community groups are often consulted by researchers, government agencies and industry. The issues may be contentious and the relationship vexed by distrust and poor communication. Could an inventory capture the fundamental sources of community frustration and highlight scope for improvement in respect, transparency, fairness, co-learning, and meeting effectiveness from a community perspective?

The trust and empowerment inventory presented below is based on the main sources of community frustration that I have witnessed over two decades as a public health physician and researcher liaising with communities about environmental health risks and it is likely to have broader relevance. Key issues include not being listened to; not being fully informed; Continue reading

Three “must have” steps to improve education for collaborative problem solving

Community member post by Stephen M. Fiore

stephen-fiore_aug-2017
Stephen M. Fiore (biography)

Many environmental, social, and public health problems require collaborative problem solving because they are too complex for an individual to work through alone. This requires a research and technical workforce that is better prepared for collaborative problem solving. How can this be supported by educational programs from kindergarten through college? How can we ensure that the next generation of researchers and engineers are able to effectively engage in team science?

Drawing from disciplines that study cognition, collaboration, and learning, colleagues and I (Graesser et al., 2018) make three key recommendations to improve research and education with a focus on instruction, opportunities to practice, and assessment. Across these is the need to attend to the core features of teamwork as identified in the broad research literature on groups and teams. Continue reading

Skilful conversations for integration

Community member post by Rebecca Freeth and Liz Clarke

Rebecca Freeth (biography)

Interdisciplinary collaboration to tackle complex problems is challenging! In particular, interdisciplinary communication can be very difficult – how do we bridge the gulf of mutual incomprehension when we are working with people who think and talk so very differently from us? What skills are required when mutual incomprehension escalates into conflict, or thwarts decision making on important issues?

It is often at this point that collaborations lose momentum. In the absence of constructive or productive exchange, working relationships stagnate and people retreat to the places where they feel safest: Continue reading

A flexible framework for stakeholder engagement

Community member post by Michelle Banfield

michelle-banfield
Michelle Banfield (biography)

How can stakeholder engagement in research be effectively planned? What parameters need to be taken into account? How can flexibility be built in to accommodate different levels of researcher and stakeholder experience?

The framework presented here was developed for health services research, but is more broadly applicable. The framework has three separate dimensions.

  1. The stakeholders to involve
  2. The stages of the research at which they will be involved
  3. The level of involvement for each stakeholder group at each stage.

Continue reading