The Ideas Fund: In Conversation: Three researchers share their experiences of collaborating with community-led projects

Following the recent ‘In Conversation’ between James and Anna on their experiences collaborating with researchers, we invited three researchers to share their experiences of collaborating with community-led projects funded by The Ideas Fund.

Dr Claire McCauley, School of Nursing and Paramedic Science at Ulster University, sat down with Dr Abigail Daniels, Clinical Psychologist at the University of Hull, and Dr Franklin Onukwugha, Senior Lecturer in Epidemiology and Public Health at University of Hertfordshire.

Claire has been collaborating in the past year with Hive Cancer Support based in Derry, to capture the mental health impact on individuals who have experienced cancer surgery. The group commissioned an artist to take the themes identified by the interviews and create a city centre mural in Derry that reflects their stories.

Abigail and Franklin are currently collaborating with Youth Aspire Connect a youth led organisation in Hull on theirNORM wellbeing project. The project is developing innovative tools to support young people, parents and community/religious leaders in Hull to destigmatise and normalise conversations about mental health and wellbeing among young people from minoritised backgrounds.

First, could you tell us a bit about the projects you are involved with?

Claire: Yes, I was looking at mental health impact post-cancer surgery. The organisation I worked with is called Hive Cancer Support (formerly The Pink Ladies Breast Cancer Support Group) and they formed in Derry 18 years ago. They approached me to look into the mental health and wellbeing of people who had been through cancer surgery. Because of the legacy of the conflict in Northern Ireland, people can find it very difficult to say they are finding something difficult here. Things aren’t as bad as they were, so there is a lack of space to admit you’re having a difficult time. This has a huge impact on how people deal with their mental health. On the other hand, because of the conflict, the voluntary and community sector in Northern Ireland plays a really significant role in our society. It’s the scaffolding that holds the whole place together. 30 years of conflict meant that everything became homegrown – if something needed doing, people would do it themselves.

Franklin: Myself and Abigail’s are working together with Youth Aspire Connect on the NORM wellbeing project, working to improve young people’s mental health. We work with young people, parents, community leaders and religious leaders, to help them have conversations about mental health. Young people need mental health support. They need to be able to talk about it, but often the people around them aren’t equipped with the skills to address feelings and emotions properly.

How did you find collaborating with communities to produce research?

Abigail: I was apprehensive at first. I think there can be a wariness about psychologists and what that title means in minority communities. I don’t often call myself ‘doctor’ for that reason. But I found that everyone was very open to having the conversation. When I was doing my doctorate, I was one of only two Black people on the entire course, across all three years. So I’m conscious that if it wasn’t me, the young people in this project wouldn’t have someone that looked anything like them to have this conversation with. Being someone with Nigerian heritage, I had an understanding of the cultural values of the community I was working in. They didn’t have to explain it and I think that was important.

Claire: Similar to Abigail, I think having a deep understanding of the community is really important. I’m from Derry and I’ve grown up here. There were things that people said to me about their mental health and the experiences they’d had, and I could tell they were concealing the true impact, using dark humour and not getting to the core of it. I don’t know if this would have been as obvious if there wasn’t a shared background there.

Franklin: Collaborating with the community has been a really interesting experience for me. I quickly realised that the quality of information you get depends on the level of trust you build with the community . You have to go in and build a genuine relationship with the community, and then things just open up naturally. You don’t go in thinking ‘I’m data gathering’. It’s also different to previous research projects I’ve done, because here, the community group takes the lead. As an academic researcher, that touches your ego a little bit and makes you feel not in control. Often as a researcher, you want to reach out to the community without really engaging them, and sometimes, you’re just in your own corner designing your approach to the question you want to ask, without really getting them on board. But this is totally different in The Ideas Fund. It’s made me able to explore things from a different perspective.

"Often as a researcher, you want to reach out to the community without really engaging them, and sometimes, you’re just in your own corner designing your approach to the question you want to ask, without really getting them on board. But this is totally different in The Ideas Fund. It’s made me able to explore things from a different perspective."

What were the benefits of collaborating with communities for your research?

Claire: The community has such a deep knowledge of these issues. The women at Hive Cancer Support have walked through it for 18 years. They know the challenges that people are having. Sometimes it felt like I was just there to put scientific language to things they already instinctively know. But this joint project has provided a mechanism for us all to gain a deeper understanding of it together.

Abigail: I totally agree. It was also great working with the community, because we got feedback when things didn’t work. For example, we shared some survey questions we were planning on asking them and they just told us they didn’t make sense. And you think, oh my goodness, they’ve just told me the questions I’ve written sound stupid and won’t land right. You really have to humble yourself. The language around academic research needs to be deconstructed to actually get accurate, valuable information. I was shocked by how many amendments we had to make, but I was so appreciative of it. It made me wonder how often we’re missing the mark, and how many other times we’ve got it wrong because we never thought to ask.

"The language around academic research needs to be deconstructed to actually get accurate, valuable information. I was shocked by how many amendments we had to make, but I was so appreciative of it. It made me wonder how often we’re missing the mark, and how many other times we’ve got it wrong because we never thought to ask."

Did you find that it produced different research outputs?

Franklin: Definitely. Through the project, we got connected to a social action campaign that was addressing racism in schools. A group of young people got together and produced an animated film that’s gone viral and featured on the BBC. People are sending emails all the way from Australia about the film. If I was going to do research to address a particular problem, I would go and collect the data, write a research paper, get published, and then be waiting years for the impact to happen. And nothing might ever happen. I wouldn’t think to make an animated film. But that’s what happens when people who have a lived experience of an issue are involved, and they design it in the way they want.

Claire: I agree. Murals are a big thing in Northern Ireland. They’re a place where people share their story, their history, their voice, their resistance. We worked with a street artist to create a huge mural in the centre of the city. It’s been a game changer. It’s starting so many conversations in the community.

"We worked with a street artist to create a huge mural in the centre of the city. It’s been a game changer. It’s starting so many conversations in the community."

How has the experience made you think differently about doing research?

Franklin: I’ve been blown away by the communities we’re working with. We’ve got to the point where they are giving their own resources to sustain what we’re doing, because they see the value of it. In one of the meetings we had, one of the parents put £20 in an envelope, to help us put on the next meeting. So many funders are putting money into trying to change society, but they’re not designing a model that helps communities to solve their own problems. But in this model, communities have ownership and champion things for themselves.

Abigail: This model completely contradicts the idea of ‘hard to reach’ communities, which is so prevalent in research. Whether it’s people who have lived through cancer in Derry, or ethnic minority communities in Hull, it’s not that people don’t want to talk. It’s because we have made academic research hard to access. We don’t communicate in a way that means other people can be part of the conversation.

Claire: I completely agree. ‘Hard to reach’ groups is just a myth that we’ve all bought into over the years. As Abigail says, we just haven’t found the right methods of communicating, because when the opportunities are there, communities will take them. If I had one overall take-home reflection on the process, it would be that there needs to be flexibility about how we work together. Research shouldn’t be something that just happens and stays on a shelf in your office. It’s a mechanism for social change. It’s a tool. Whether you’re a community group or a researcher or a street artist, we’re all just trying to get to the truth.

Abigail: Totally. If you pass your qualification and someone reads your paper, what will they do with it? What will change? Are we using our research for career progression or are we trying to make a difference? As researchers, we need to be asking ourselves these questions. We’re seeing this process facilitate change in our communities. We’re not finished, but I already feel like something’s been done.

"If I had one overall take-home reflection on the process, it would be that there needs to be flexibility about how we work together. Research shouldn’t be something that just happens and stays on a shelf in your office. It’s a mechanism for social change. It’s a tool."

What future opportunities has this experience opened up?

Franklin: Working closely with communities has opened up a lot of opportunities for me as a researcher. I now have opportunities with Hull City Council and the NHS, and other organisations who have reached out that want to collaborate. I’ve lived in Hull for eight years, but this experience has introduced me to some amazing local initiatives that I didn’t know anything about.

Abigail: Same for me. I live a ten minute walking distance from 10-15 different community groups doing really powerful work that I just wasn’t aware of before. Now I know there are local groups and charities I can talk to if I’m doing research around something. I don’t think that would have been my mindset at all before The Ideas Fund. It’s made me think a lot about how we can foster these kinds of connections more at the University. I’m really keen for more young psychologists who are in training to have placements where they can work on the ground in the local city and be exposed to a more diverse range of voices.

Claire: I have always believed passionately in working with local people to hear local experiences and this process has confirmed that further. I think a deep trust and a collaboration has been formed that will lead to real positive change in how we approach mental health within the cancer journey. The success of our collaboration provides a mechanism for how this change can happen with true collaboration, learning and respect we can work together for a shared goal of improving the health and wellbeing of our city.

"As researchers, we need to be asking ourselves these questions. We’re seeing this process facilitate change in our communities"

Thank you to Julia Fausing Price from The Social Change Agency for the support in writing up these conversations.

Interested in learning more about The Ideas Fund? You can also get in touch with the team at hello@theideasfund.org for more information.