Service User Led Research ‘Is there a pathway to recovery through care coordination?’ was presented at a recent CPAA event – click here to read more about this event. This emancipatory research was designed and conducted by people with lived experience of mental health difficulties and carers.
This research supports recovery in a number of ways – for example, personal recovery and wellbeing; hope, inspiration and aspiration for others; contributing to the evidence base for recovery. This is a positive story that should be shared…… Caroline Kemp (no relation 🙂 ) agreed to write about her experience as a carer & researcher; and shares a poem about coding…….
Pathways to Recovery..how and why I got involved..
The last few years have been very rewarding for me…the path has been very stimulating and has been a big learning curve.
My background has been in mental health as I have cared for my daughter for over 16 years. She has enduring and severe mental health problems..her path has been very tough and witnessing this battle is also equally as tough..too much anxiety and panic. .and also the fact that no meds seemed to be of any help..just lots of dreadful side effects…as a mum and a Carer you expect or try to fix things..I always thought things would be better if only we could find the right meds…I tried to read as much as I could so I could help..I thought in the early days I would fix it..and my daughter would not suffer needlessly for years…
When I first heard of the research into pathways to recovery through care coordination I felt strongly I wanted to be a part in it..( I had had plenty of experience of Care Coordination..not all positive ) The reasons were mixed..on one hand they were purely selfish..if there was any hope of finding recovery I had to know it.. I wanted to have some hope…the other reason was to make things better for everyone in anguish and torment..I think this is also why people do research in the first place..to make things better.. I had seen too many people abandoned on the acute wards without a single visitor. Also our research group were chosen because of their expertise and life experience..there was no formal academic requirement..another strength was we were a mix of service users, Carers and professionals. We had multiple perspectives and this made out research even better science. Also I knew from the way this research was done we would play a full part in doing it..at all levels ..it would not be a tick box exercise.
At Northumbria we were given excellent training on research up to PhD level ..so this gave our group the confidence to do all the interviews..Carers interviewing Carers and S U interviewing S U…in all the interviews this has made a difference to our data as people related to us and disclosed more of their true feelings..perhaps this was because we had shared journeys and paths. We developed questionnaires, piloted them, and refined them.
After hearing all these stories I cannot help being amazed at human resilience in the face of terrible tough times and challenges..
Not only did we interview but we also did data analysis ..I never thought I would be able to do this but after all our training I had the confidence to sign up for it..it certainly sharpened our interviewing skills and kept us on task on answering the research project question..not just collecting hours of data. I also learned a whole new vocabulary …Nvivo and nodes…parent ones too..
I have been part of this research for over three years now and I have had many highlights..
What I loved was meeting every Wednesday and analysing the data; keeping a reflective diary and writing poems around recovery..I have been published in an American journal; doing many Carer interviews and sharing people’s life stories; being asked to present at conferences, INVOLVE and to the Trust; talking to students at Northumbria on our research; I also did a short video diary for NIHR ( National Institute of Health Research ) this has been used to train students too; and have been interviewed twice on the radio! At the INVOLVE conference our group was selected to be in a film also. It has been very exciting. We have been brave enough to step outside of our comfort zone.. And it has been well worth it. It has been part of our recovery too..that is being engaged in something meaningful and the added bonus of being for the benefit of others.
At the moment we are preparing our next three conferences on the findings to the trust and developing a toolkit. Also we have been asked to write about our journey and how we did it..not only academic papers but also a book..so we have a lot to do.
But this is how I like it and I think I speak for others in the group too..we will be sad when it ends..however I think when you do become involved it always leads to many other things..jobs for some, enhanced skills..now we are a trained group of researchers and can offer our own training and experience to others…
I am glad I have been valued as a Carer and service users in the group are also glad that their mental health experiences have been recognised and valued and able to be of benefit to others on the pathway to recovery.
It gave me hope things could be different and I would encourage everyone to become involved in research ..you do not have to have a degree..just valuable life experience. And empathy ..and a willingness to work and share together and learn from each other. It was great being part of a team.