By Diana Rose
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.