Recovery college courses are co-produced by those with lived and learnt experience of mental health challenges. They are offered online or in-person to service users, staff, family and the wider community.
Bryher Bowness, a mental health nurse and PhD student at King’s College London, and Lana Samuels, a co-researcher and carer, were part of a research project which recently won a King’s Engaged Researcher Network award for national participatory research.
Their project created and evaluated a recovery college course for family carers, involving carers as co-researchers throughout. Here, they discuss their work and the importance of involving carers in research.
A collage of artwork created by carer co-researchers taking part in the course
Lana Samuels: “Many people do not consider themselves carers, especially in the family dynamics of parents or couples. So, it is important for those providing care to be recognised and assisted, if necessary, to fulfil their role and not be left alone."
We can all learn from one another, so carers sharing their experiences creates empathy, as well as the opportunity to problem-solve and learn new skills.
Bryher Bowness: “This project began with a focus group study to explore the experiences of family carers who had attended recovery colleges across England. Myself and carer co-researchers collaboratively designed and analysed this, and presented our findings together through a webinar, practice posters, conference and journal paper. We wanted as many recovery colleges as possible to hear about the importance of reaching out to carers.
This led to me collaborating with Oxfordshire Recovery College, aiming to encourage more carer involvement in their recovery college. Together with a research advisory group of four carers, we conducted a participatory action research project where we designed, facilitated and evaluated a creative course for family carers.”
Lana Samuels: “Before working on this project, I was fortunate to co-present with the founder of the first recovery college in the UK. We visited numerous locations across London, sharing information and the vision of the recovery college with mental health professionals. We explained how they can promote and embrace change by encouraging service users/patients through the main principles of hope, control and opportunity."
The recovery colleges over the years have been successfully achieving positive outcomes for service users/patients, and it is now time for carers too to have a space to benefit, so specific courses can be designed that suit and support carers personally and enhance their caring role. This project enabled that by specifically focusing on the carers who support service users/patients engaged with the colleges.
Bryher Bowness: "There are varying definitions of participatory action research, but essentially it boils down to conducting research that is led by and enables a change for those who it affects.”
Research has traditionally silenced marginalised and racialised groups in society, so I felt it was important to use the opportunity of my PhD to try to give those who might not have previously had a voice. We ensured members of our research advisory group came from all different backgrounds. After all, carers (in this project, that meant those who informally support someone who has mental ill-health), come from all walks of life.
Lana Samuels: “As carers we worked in collaboration to design a course that we agreed was of interest to us, that we wanted to empower carers through creativity. The research project and process involved all our personal reflections to ensure it would be fit for purpose.”
Lana Samuels: “A few of us had worked together in the past, so it was quite an easy transition to read the virtual room and share our ideas with ease. Mutual respect was evident in all our meetings - we all wanted to contribute, so we worked to stay on the same page, so to speak.
Focus and enthusiasm helped shape our project to become a reality, which we all hoped would be appreciated and beneficial for those who attended the course. We also prepared for feedback so we could know if the project lived up to expectations or not to ensure learning was captured for moving forward.”
Bryher: “In our first few meetings it was difficult to make decisions, and we were pretty much starting with a blank slate. I learnt a lot about navigating relationships and power dynamics during this process. We all had different roles and experiences (carers, recovery college staff, charity representatives and researchers), and we facilitated the group in a way that everyone could contribute and ask questions, so it took a long time.
But with much ongoing summarising, listening and communication in between meetings, we came to shared understandings of what we wanted to achieve. In the end, our diverse strengths and resources brought great creativity, coming up with a new and unique idea.”
Throughout our collaboration, Oxfordshire Recovery College were enormously flexible and open to trying something new. They dedicated a lot of time, expertise and resources to the project, and we learnt a lot from them. We hope to continue running the course in the summer term!
Bryher Bowness: “A creative course was suggested by the carer researchers as helpful for family carers and an inclusive way that people from different backgrounds could contribute and make meaning. Participants thoroughly enjoyed the creative aspects of the course, and they took the activities away into their daily lives, and even did them with the person they were supporting.”
I learned about all the time I have been creative and forgotten what I used to do before I got absorbed in caring.
Other carers think the same as me and face the same daily problems.
I feel not so on my own with caring.
Bryher Bowness: “We chose to run the course in three 1.5 hour parts online, to make it more accessible for carers who may have caring responsibilities at home. The challenge remains reaching carers who are very busy or may not identify as carers, so continuing to raise awareness of everything recovery colleges have to offer carers is key.”
Lana Samuels: “There is a space for each of us to have our views. All experiences will be different and shared in their own way, but in a majority of cases there are common themes that are described and this is a positive outcome for all groups to start from and build on.”
Bryher Bowness: “Our carer researchers felt it was important to have a course specifically for family carers. Family carers are a minority amongst recovery college students (courses are usually shared learning environments with service users, staff, carers and community members alike), and the participants found this peer environment hugely beneficial.”
Lana: “I promote research and would recommend everyone become involved in research, if that is their interest. More people with different perspectives taking part allows for greater knowledge, change, and potential solutions for health and care.”
If I knew about the course when I was a full-time carer, this would have helped save me. I am now a part- time carer and the benefits of this course are amazing. We really need to find a way of reaching the wider caregivers.