Impact in Qualitative Research: Bryher Bowness on co-producing guidance for researchers and the public on involving carers in research

Bryher Bowness is a PhD student in the Health Services and Population Research Department, IoPPN. She trained as a mental health nurse, and the main body of her thesis will be developing a Participatory Action Research project with family/ friends who are informal carers of people with mental health problems. Bryher is dedicated to conducting research collaboratively with the people who are affected by the issue, with the purpose of creating the changes they would like.

PhD proposal originally focused on conducting an evaluation of Recovery Colleges in the UK from the perspective of family/friends of those using mental health services (i.e. ‘carers’). Recovery Colleges are coproduced, which means that they are designed and delivered through an equal partnership between ‘experts-by-experience’ and ‘experts-by-training’, and they aim to promote outcomes such as connection and empowerment. I wanted to conduct my research according to these values, and coproduce my research with carers, but I was unable to find any carer-specific guidance. As a result, I decided to conduct a systematic review, to get an evidence-based understanding of the best ways to conduct research collaboratively with carers.

I was not alone in noticing this gap, and around the same time the NIHR’s Public Partnership Team also decided to do a project that focused on carers in research. Again, they wanted carers’ voices embedded and driving this, so set up a small steering group, led by Sophie Jarvis, with three informal carers, to collaboratively decide the direction of the project. When I contacted the NIHR Journals Library during my literature search, I was put in touch with Sophie.

Sophie invited me to present some early findings from my systematic review in a seminar event during Carers’ Week (which in 2023, is the 5th – 11th June). I presented jointly with Yasma, the carer I was designing my study with, alongside other four carers who had been involved in research who spoke about their experiences. Over 100 people signed up to the webinar, including the Director for Public Voice at NIHR, making it a successful first step to bringing carers into the public involvement picture. The event report can be found here.

Following this, the steering group decided to keep up this momentum and create a resource for researchers and carers about involving carers. To ground this directly in carer experiences, we planned a series of focus groups with carers who had been involved in research projects funded by the NIHR. In our three-weekly meetings, we thought a lot about how to make these focus groups inclusive and empowering for the carers participating. In particular, the steering group felt it was important that the resource represented the voices of a wide range of carers, as every carer is different. We therefore invited a group of young carers, carers on a study into LGBTQ+ and BAME caring experiences, and carers for those treated under the Mental Health Act.

Each meeting was chaired by a carer from our steering group, to enable the carers to feel comfortable and confident to share their experiences.

The researchers from their respective projects were interviewed separately. With the recordings from these groups, and the preliminary findings of my systematic review, Sophie used thematic analysis to create some initial themes which she then fed back to the steering group, showing us example quotes to demonstrate how she formed these. She also member-checked these themes with the participants of the focus groups, which actually led to a lot of changes after their feedback! To produce the final resources for the NIHR website, Sophie and the graphics designer consulted the steering group with every new draft. Each time, the carers feedback helped to make the resource accessible, representative and sensitive to carers.

One graphic focuses on the top tips for researchers involving carers in their work, the other focuses on top tips for carers who are considering becoming involved. We would be grateful if you could share our new resources with any networks, and retweet our post. The NIHR Centre for Engagement and Dissemination will be putting a further spotlight on this issue during Carers Week in June - so look out for that!

At the end of this work, we reflected as a steering group on our experiences of the co-production process. The carers reflected how positive the experience had been for them – how they had been made to feel like ‘colleagues’, rather than simply token members of the public. Factors that facilitated this included some of the following examples:

• Deciding together, right from the start, how they wanted to work as a group.
• Sophie’s ongoing and transparent communication about the progress and external influences of the project.
• The space to talk and share experiences, rather than always being dictated by the researchers’ agenda.

One of the carers reflected:

I've been banging on about “what about carers?” for years, and finally, someone has listened!’

For me, it was really encouraging that the whole process seemed to demonstrate this successful collaboration with carers. Unintentionally, we had been following many of the Top Tips highlighted in the resource we were creating, such as regular communication, involvement from start to finish, and getting to know each other on a personal level. As an early career researcher, it taught me a lot about how I would like to run projects moving forward. So far with my own research, a lack of understanding and established policies within departments during the ethical approval process meant I was unable to involve a carer to cofacilitate the focus groups we had planned. Not to mention the difficulties of limited time and funding. But this project with NIHR showed me that good practice public involvement is possible.

I also felt extremely grateful for the opportunity for my research to feed into a project that will make a difference to how future research is conducted. The links to these resources will hopefully be automatically distributed to researchers when their projects receive funding from the NIHR, along with the general UK Patient and Public Involvement Guidance. I’m yet to submit my systematic review for publication, but it certainly won’t be read by half as many researchers as the NIHR resource, and definitely not by as many carers.

Now we just need to keep the sharing the resource and spreading the word about the benefits of considerately collaborating with carers in research!

If you have any queries on these tips, please contact publicpartnerships [at] nihr [dot] ac [dot] uk