Using community research to better understand the needs of families affected by Acquired Brain Injury (ABI): A Q&A with P.A.U.L for Brain Recovery

One of the projects supported by The Ideas Fund in Hull is 'Supporting Family Members Affected by ABI (Acquired Brain Injury)', led by P.A.U.L for Brain Recovery. We sat down with project lead Leigh and researcher Alex to talk about the project, the benefits of community-led research and how they’re using their findings to improve services for families affected by brain injury.

Can you tell me a bit about the project and what motivated it?

Leigh (P.A.U.L For Brain Recovery): We set up the charity in 2016 to support people affected by acquired brain injury in Hull. Through our work we came across lots of families that we knew were struggling but for whatever reason they were unwilling to access support. We tried putting on different sessions and drop-ins but not many people attended. At the same time, we would speak to family members and when we talked to them, they would just break down in tears. So, we knew the need was there, but we weren’t sure how to engage people, or what would motivate family members to access support. This project enabled us to bring family members together in a room to hear their thoughts and ideas, so that we could better support them.

And Alex, Marie and Tony, how did you get involved?

Alex (researcher): I’m a nurse by background, and funnily enough when I first qualified, I worked in neurosurgery and actually looked after Paul who set up P.A.U.L For Brain Recovery, when he had his brain injury. So when the opportunity arose to join the project as a researcher, I was really excited to be involved.

Marie (family member): Our son Kiernan was hit by a drunk driver when he was 16 and from that has a life-changing brain injury. So we’ve been able to access the charity’s services and they have been really helpful. But for some reason, other people we knew who were going through a similar thing weren’t accessing it. When we heard about this project we knew we wanted to help. We’re further down the line now and we’ve been really lucky in our support, but we know that’s not always the case for everyone. We thought we could help by reaching out to other families who are at the beginning of their journey. It’s been amazing to meet and talk to other families. There are lots of different causes of brain injury. Everyone has a different experience and struggles with different things. The meetings we’ve had have had a very non-judgemental atmosphere and I think that’s been really important. It’s been a very cathartic process.

How have you found the process of doing community-led research?

Marie (family member): I’ve had a bit of experience with market research before, so I had some awareness of how you can conduct research. But this was a very different approach. It had a big emphasis on qualitative rather than quantitative data, which for a topic like this is ideal. It was a very collaborative process. I think with this approach sometimes things take a little bit longer, but that was fine because we knew it was being fully directed by us. It didn’t feel like it was prescriptive or like it was being done to you.

Tony (family member): It’s been really moving to meet other families and see people share things that they’ve kept to themselves or have been dealing with on their own. With Kiernan, we have a lot of different support workers, so we see ourselves as part of his support team now as well as being his parents. But some people are really isolated and are doing this on their own, so to be able to meet other people going through the same thing and get peer support through this project has been really valuable.

Leigh (P.A.U.L For Brain Recovery): It was amazing that we were able to get Alex to be involved in this project, with her background in neurosurgery. We made the decision for Alex to join the charity on a fixed term contract, which I think worked really well because she very much became part of the charity. She is really part of the team.

Your research included a lot of creative methods. How do you think that benefitted your research?

Tony (family member): We tried a lot of different creative approaches throughout the research. For example, we’ve created an animation film and we also had a collage artist come in and lead a collaging activity. It takes people different amounts of time to warm up and having that kind of activity really prompted conversations. Doing these things offered different ways of engaging people.

Alex (researcher): When we planned the project, we knew we wanted to use creative methods and make it very participatory and it does feel like that. We’re a group of researchers doing this together – it’s not just me doing research on families. I think it’s been really good for me. I’ve done qualitative research before, but mostly in the form of interviews, so to do this type of research where we’re using lots of different methods is great. There’s a lot of value in creative methods to start conversations and get really in-depth data. We did a workshop where we asked families to take several photos of what their life was like living with brain injury and we printed them all off and put them round the table. Then we used them as a prompt, and took it in turns for people to talk about their experience. There were a lot of common themes, like lots of medications and tablets. Having conversations in this way really allowed people to open up.

What are your hopes for the future of this project?

Alex (researcher): The charity is an amazing community for people with brain injury, and through this research project it feels like we’re now developing a community of families too. I think that’s where we want to take it further and support more families and we’ve started having discussions about what this might look like. I work at the hospital as well as at the charity, and we’re looking at how we can make sure that more families are receiving information about the charity and are being signposted. We’re also looking at how the charity can have a presence on the neurosurgical wards. It’s a really difficult time for families whilst they are in hospital and to have somebody from the charity who has an insight into what they’re going through at that time is really important.

Leigh (P.A.U.L For Brain Recovery): This research has been invaluable for us, because we’ve had feedback from families that can inform our future services. We want to understand how we can improve the services we offer for family members and now we’re really on track to be able to do that.

–

Thank you to Leigh, Alex, Marie and Tony for talking to us. If you want to find out more about P.A.U.L For Brain Recovery, check out their website: paulforbrainrecovery.co.uk.