What is peer research?
Peer research involves patients and carers helping academics to carry out research, through providing input into how research is designed, conducting interviews and focus groups, and helping to disseminate the findings. Patients and carers bring their lived experience to the project, and coupled with research skills, helps us to conduct research in a way that adds a rich level of insight and sensitivity. In our project, we are conducting focus groups with NHS staff, carers, and patients who have , and we’re asking people with dementia and carers of people with dementia to help us to facilitate these groups.
Why is it important?
In our project, we are looking into the way that care is provided to people with dementia who experience a mental health crisis.To explore this we are conducting interviews and focus groups with members of NHS staff, carers of people with dementia who have used crisis services, and people with dementia themselves. The stories that we ask our participants to tell can involve times of distress and sensitive topics, and involving peer researchers to help us to ask the questions helps our participants to feel comfortable, safe, and valued; enabling them to open up and engage in way that is less formal.
There are benefits for anyone who is a peer researcher too, as our peer researchers are able to learn new skills, and put existing skills to new uses. Being a peer researcher can be a rewarding experience by being able to help other people in a similar situation tell their story in a sensitive way.
We also hope that for participants who have dementia, seeing a peer researcher with dementia taking such an active role in a research project will prove inspiring, and will help to reduce stigma by showing that a diagnosis of dementia does not exclude people from such activities.
Progress so far
We held two training events for people with dementia and carers of people with dementia to learn about what peer research is, what our project is about, and exactly how to do the research activities that we will be doing. I led the training in collaboration with a lady called Sheena*, who has experience of being a peer researcher on projects investigating secure forensic settings. So far we have had 15 people attend the training, most from the local area but with a few travelling from further afield.
On the first training event we had a smaller group, and discovered that several of the group had been somewhat miss-sold the day through an error in communication, thinking that they were attending to learn more about dementia! However, after some explanation, we were back on track and the group were thoroughly interested in what we were doing, and were very keen to take part. There was a mixture of lived experiences amongst the group, which made for some interesting conversations. Towards the end of the training we had a practice run at doing a focus group, and one of our peer researchers helped me to co-facilitate it. Another member of the group commented that he felt a lot more comfortable having a peer researcher there to direct his answers to.
Our second training event was a much busier affair with a larger group, and again we had a variety of lived experiences amongst the group, as some members of the group had dementia, and some were carers. We had a lot of insightful questions: for example some peer researchers were concerned that hearing someone else’s story might set them back by highlighting what situations might happen to them in the course of their dementia journey, and we reassured our peer researchers that part of our job as academic researchers is to support them. We also highlighted the exercise books given as part of the training, which we hope our peer researchers will use to reflect upon their experiences of working with us to co-facilitate the focus groups by recording their thoughts and feelings before and after the discussions. Another peer researcher worried that she might lose her words during the discussion because of her dementia, and we reassured her that she would be helping us to co-facilitate a focus group with other people who also had dementia, who would understand if she lost her words, and would hopefully feel reassured at her presence if they were struggling with their own words.
I can definitely say that there was a real buzz and enthusiasm during the training events, and our peer researchers were very keen to get started. We explained exactly what will happen on the day of each focus group clearly and simply and checked with everyone that they understood the process, and once everyone had got the hang of it our peer researchers felt confident that they could do it.
I was absolutely delighted with how enthusiastic our peer researchers were, firstly about learning a new skill, and then being keen to put it into practice. Our peer researchers understood the challenges associated with conducting research but were happy to give it a go, with one peer researcher saying ‘throw me in at the deep end!’
The insights that Sheena brought to the training from her own experience of being a peer researcher were hugely valuable and inspirational to our peer researchers. I couldn’t have communicated what it is like to be a peer researcher, or inspired such interesting discussions amongst our peer researchers without Sheena, and she really helped to put our new peer researchers at ease.
We have already completed several focus groups, which have each been co-facilitated by a member of our research team and a peer researcher, and I’m delighted to say that they have been a resounding success. Our peer researchers have asked some very insightful questions and really helped to sum up what was being said and reiterate key points, and I’m confident that this has thoroughly enriched our data.
We have more focus groups booked in and are matching our peer researchers to focus groups in terms of the types of participants to ensure that we draw on the relevant lived experiences of peer researchers.
We are asking our peer researchers to reflect on their experiences and share these reflections with us so that we can improve how we do things and continue to ensure that the experience of being a peer researcher is a positive one. We will also be putting together further blogs, tweets, and research papers detailing our work in this area to share what we are learning, and inspire others to involve people with dementia and people who care for someone with dementia in similar ways.
*Sheena gave her permission for Aqueduct to blog about our activities
Dr Jen Yates is a Research Fellow in the Division of Psychiatry and Applied Psychology, University of Nottingham. Jen’s research interests focus on the health and well-being of older people who experience difficulties with their cognitive functioning, and how health services operate in the care of older people. Jen also enjoys gardening, baking cakes and going out for the afternoon on her bicycle.
Get in touch by email (firstname.lastname@example.org) or Twitter (@jenniferayates).
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