Community research reflections

Amanda: First of all, tell us a bit about yourself.

Lily: I'm a 58-year-old British Bangladeshi woman. I've been married 30 years, and I’ve got three boys. I'm also a Bristolian.

My family were the first Bengalis that we knew of in Bristol and slowly other families came after us. So we had no advice or support growing up and faced a lot of racism in the 70s. My father worked hard and put a lot of energy into educating us. He treated us girls the same as the boys, which was very unusual for his background at the time. 

Career-wise, I've mainly worked in the public sector with local council and police. I’ve worked for Bristol City Council in a range of EDI roles including managing the Bristol City Council team that achieved Beacon Status for Promoting Racial Equality. I’ve also worked part-time in the volunteer sector which allowed me to give my kids more of my time, which included developing the Bristol Multi Faith Forum. I've been supporting Black2Nature with their external EDI work, since it was founded in 2015. 

Amanda: Why incontinence?  What drew you to this particular research topic? 

Lily: Even though I hadn't clicked that I had incontinence myself, I always found it something that I thought wasn't really being talked about. It threw me in a nice way that I could choose something I was interested in as the subject of my research. I knew women who did suffer from it so I knew it was an issue in the community. It wasn't being discussed so I thought, ‘why not?’

Amanda: Can you tell us how you personally found the experience of carrying out a Research Collective project?  

Lily: I enjoyed it and I learned a lot. It was a different style of working than my experience of public sector. We got so used to not paying for their time because we had no budget. When We The Curious said, we are going to pay you for your time and we recommend you pay your participants, you think, “ooh!” and that's factored into the budget. 

And the support We The Curious provided with thinking through an ethics plan... things like privacy, data protection, I would have come up with, but wouldn’t have thought of everything. It got me thinking in a way that I'm not used to or considering things I don't usually have to. And I think together we did develop.  I really enjoyed working together because it made me push me outside my comfort zone, whilst giving me the support needed.

Amanda: Were there any particular highlights? 

Lily: At the end of my project, I decided to run an additional workshop, specifically for African Caribbean women.  This was because I felt like their voices hadn’t really been represented in the previous workshops and the data was lopsided. In the end there were twelve African Caribbean participants who came along. This meant my project felt more proportionate and representative of Bristol. 

I also think having a creative element, whatever you do, is nice, especially if we're working with communities who don’t have English as first language.

I'm not an artistic person by nature but the collages actually have turned out 1000 times better and more beneficial than I ever imagined they would be. The women found that they could be expressive, put their worries, doubts all the things down in a visual way

Amanda: What has been the biggest learning for you in this project, whether that’s as a leader, a researcher or just as yourself? 

Lily: In terms of myself, it’s given me more self-confidence again. It's weird to say as a 58-year-old woman that I’m gaining confidence myself and skills now, but it’s never too late in life. I don’t consider myself a researcher by nature but it's nice to get professional people to say to me, “Lily, it is a good piece of research.”
In terms of professional learnings, I think it's just by doing the research and I've now got the confidence to take on the other piece of research for UWE, and I've got the confidence that I can do a PhD.  

Amanda: What was it like working with We The Curious?  

Lily: I enjoyed it, in terms of the people, you guys are lovely! I expect a couple of £100 on the table for saying that! No, seriously, you guys as people, you're all lovely, you're all professional and also you gave me a lot of support, guidance and advice. 

It’s just interesting how you guys, you know, got it.

Amanda: One of the huge successes of your project was you managed to encourage so many people to come along and take part in your project. Do you think having you, Lily, leading the project as someone close to the communities was a factor in this? 

Lily: So yes. I think I partly it was because of my ethnicity, my religion, because of my previous roles and already having the links. And where I didn’t have the links, I worked with organisations like the Sudanese Association, the Bangladesh Association and the Eritrean Association and individual women who had those contacts. I got their support with recruiting women to take part.

If someone coming from a more academic starting point wanted to do a similar project, they would have to do much more work to be trusted and get to the end result. People, don't always understand the basics of getting communities involved. I’ve found it most effective recruiting through word of mouth. And from there I then have a bit more understanding of actually what they want and have built more trust.

And then, you have to think about cultural taboos around the subject you're doing research on as well as compensating people fairly, scheduling sessions at a time that works for them, and practicalities like translating and interpreting. 

There’s a lot that doesn’t get thought about when it comes to working with BME communities and it puts people off. But the organisers don’t realise what message they're giving out. When they don’t consider these things, it’s like they’re saying, “We haven't thought about you. We're not bothered about you coming.”

Amanda: Have you seen or heard about any impacts this project may already be having on local communities? What else do you think will be the future impacts? 

Lily: I recently took a group of women on a day trip recently. They were from a group who had taken part in my project and all they talked about was incontinence. And they were saying that they wanted to do more with the recommendations that came out of the project. A lot of the women say they want a networking session where they can talk and get advice. 

I think there’s another issue that has come up, which is men. One or two men said to me, “What about us? What about research into how we're being affected, what we support we need?” This was raised by some of the women about their husbands.
If I can get funding, I’ll try to tackle some of the recommendations that people want to see, for example, put together a directory. 

Amanda: Throughout your project, we've had a lot of discussion about the question, ‘what is research’? Can you share what the idea of research means to you now and any ways that has changed over the last year?

Lily: To me, research has always been asking fixed questions and analysing the answers. I don't think I've changed, I'm very old school. You do your work, you do your questions, you investigate, interview, you get your quantitative or qualitative data. You write it all up and there you are at the research. For me, that was it. 

What research is has not changed, but how to deliver it is what has changed for me. 

Amanda: What's next for you and this work around incontinence? 

Lily: I’m doing a PhD! It's going to be at UWE and it's going to be incontinence and how it can be reduced with physical fitness. Faatihah Niyi-Odumosu is going to be my main supervisor. Faatihah was a guest speaker at my conference as well and she’s got her organisation ALIBSA [Ageing Lifestyle in Blacks and Asians]. Nikki Cotteril is going to be my second supervisor and she's very internationally renowned for incontinence. It’s a new area for me, but I guess I’ve suddenly become an incontinence person out of nowhere! 

Also, I will be presenting to working groups such as the Diverse Research Engagement Network. Because this is the time to do it while the iron’s hot. We can then link it to other pieces of work and then to see what money is available to actually deliver the outcomes and the recommendations.

Amanda: Is there a piece of advice or something you would like We The Curious to take forward as we look to supporting more communities to investigate research questions in the future? 

Lily: You have to work with people who have got connections to the community. You cannot assume somebody who has no contacts in that community will suddenly be able to do it. It takes time to build relationships and trust, to then be able to deliver the outcome.  Whatever the community is, they have to have some connection or knowledge of it or have a relationship. 

Amanda: Is there any advice you would have for other people who want to be community researchers, running projects like yours?

Lily: I think it all goes back to you guys who are funding the projects. For a lot of people, a big part of the reason why they might or might not take on a project like this depends on whether it’s cost effective for them.

That's another thing; knowing your audience's food preferences. Hot food for BME communities is important. It meant a lot because they felt appreciated, it’s not even the food itself; they felt that their presence was valued and we were giving something back to them.