Anti-racism and mental health: “All the researchers I've worked with have been White”

It’s been a while since the end of our webinar series – How to become an anti-racist mental health researcher – delivered jointly with LivPsych Society and the Mental Elf. The last session was June 2021. All the episodes are available to watch. We are creating a summary resource that we hope to launch by the end of the year.

Here we are pleased be in conversation with Sandra Jayacodi, who uses her lived experience in mental health research and who spoke at our last event. She sat down with our Director of Research, Vanessa.

Vanessa: It’s great to talk to you. What was your response when you were invited to talk at the webinar?

Sandra: At first, I didn’t really think there was an issue. I had not thought about racism within mental health research until then. But we are who we are because of our background, the languages that we speak, the understanding of our cultures, our faith. All those things play an important role with regards to our character and behaviour and how we see things and do things.

I think I realised from thinking about and talking about this, that if I want somebody to understand me, it would be easier for somebody who’s from my culture to understand me. That’s the same for research. If you are doing research in a field that’s going to affect me, how would you understand my experience of mental health, if you don’t understand as much of who I am as possible? Unfortunately, I have to say that all the researchers that I’ve worked with are predominantly White.

The other thing I realised is that too much research is focused on the wrong things. We have done enough research about the barriers people from BAME communities face when accessing mental health services. Or another common one is schizophrenia. There is so much research investigating why diagnosis rates are so high within BAME communities. And much of this research is being done by White professors. I wonder, is this research actually something that will help those BAME communities?

Let’s take my community: the Tamil community. Why is it not possible to meet with a huge group of Tamil community members, and ask ‘where do you think research needs to be done?’, ‘What questions should we be asking in terms of research?’. I’ve never heard that. And I think, maybe that’s something we should do.

You’ve worked on lots of different research projects. What has your experience been of doing service user involvement work as a person of colour?

It has varied. With the RADAR study about coming off anti-psychotic medication, for instance, I didn’t feel like my presence was there to tick a box. But some studies, it can feel like you’re there to be a BAME representative. But I think, because I’ve been working within the patient and public involvement community for so long, I’ve seen progress in being accepted as one of the team, rather than just a service user who is here to be a tick box. There is progression but it varies from researcher to researcher.

What is quite telling is that even though we might recruit a diverse research advisory group, race is not often openly spoken about. But it seems like you’re feeling more confident to speak out?

Yes, I’m bringing race into the conversation more. For example, if you’re helping somebody to come off anti-psychotic drugs, it’s important to understand their background, their culture, who can support them, what family they have. It’s very important to understand that.

For me, I live on my own and, in the beginning, I didn’t want my family members or my community to know that I was coming off the anti-psychotic drugs. I did not want them to know about my mental health. But later I realised having my parents coming over to stay with me definitely helped. The community support I had was important as it made a difference during the withdrawal period.

I also believe when conducting research, it’s important to understand the participants and their different ethnicities. Consider questions relating to their culture, their beliefs, and how that has influenced the way they think about the research question. I don’t think we do this enough.

Has your approach to your work shifted as a result of thinking more deeply about these issues?

I tell the researchers I work with that I’m not the representative of all Asian people. Having just one BAME person in your research team doesn’t mean that you have engaged with ethnic minority group. I suggest they engage with a wider group. I say, you need to come to the community and talk to us about research questions at the start of the study’s design.

Thinking back, I realised I’ve never worked with any lead mental health researcher from the BAME community. That is a huge issue especially when there is a higher prevalence of mental illness within some BAME communities.  This made me question, why? Why is that so? It is a real issue. Why isn’t the government focusing on training, on increasing accessibility so that people from the BAME community can enter into research careers? We need to create more opportunities for people from BAME communities to have career progression.

The webinar series was called ‘How to become an anti-racist researcher’. What’s your message to researchers?

We should be thinking about ‘Nothing about us without us’. To really focus on what the study is about and thinking about who it benefits. If there is the intention to include people from communities who are not usually included, what are the provisions you need to do this meaningfully?

The point is, you need to consider the race of the participants and I think the outcome of the research will be much richer if you do. If you have that conversation in the design stage itself, it will create a much richer outcome.

And to funders? What do you think needs to change for their work to be considered anti-racist?

I would ask them whether they have gone out and spoken to BAME communities and found out what they think should be funded. In research, discrimination can start with the funding and what areas get prioritised – even before the researchers make the application for that money.

Then the emphasis needs to be on grant applications that engage communities to help shape their research question, and those that plan to involve the community throughout the research and dissemination process. Funders should promote and prioritise mental health research applications from a BAME lead or co-applicants.

If funders truly want more people from different ethnicities involved pr participating in research, they need to look at what provisions are included in the research grants for the day-to-day running of the study.

Is there money allocated to travel, to fund work with grass-roots charities and organisations, to use interpreters and print materials in different languages? Without the foresight and finance to support all these things, the inequalities are perpetuated.

Thank you for your time.