Lived Experience Researchers: Involving Patients and Carers in Research Pt II
Whilst working as a Research Assistant at QMUL, Aysegul became interested in the topic of family involvement in the mental health treatment of people in hospital. Noticing that in existing research patients themselves hadn’t really been asked about their opinions, she wanted to explore this in more detail, starting with a review of existing research literature about the topic.
Keen to ensure that in the process of her research she too didn't perpetuate the exclusion of patients’ views Aysegul recruited patients and carers as 'lived experience researchers' in the literature review team to ensure their views and opinions were represented.
In the second part of her patient involvement blog post Aysegul moves on from the process she went through to set up and recruit for 'lived experienced researchers' (which you can read in the first part here) and now talks about the meetings themselves and her future steps.
I held separate preparation meetings with Gerry, Katherine and Sue separately to clarify their role in the review, identify any support needs they might have and to support them with understanding the background and methods of the review. I provided information about systematic reviews and conceptual reviews: what they are and how they are normally done. We then discussed thematic analysis as a qualitative research technique. Each person was given a practice task at the end of the meeting to keep practicing the thematic analysis exercises at home.
Later, we began our meetings with the wider review team. All the meetings are structured as follows:
One week before the meeting:
I choose one academic paper to examine in detail. I also create a plain English summary of the paper and email both the paper and the summary to the review team. I include research questions they should keep in mind whilst reading the summary (reading the full paper is optional), and ask them to make notes whilst reading. The whole exercise is designed to take around one hour, which the lived experience researchers are paid for.
The day of the meeting:
1. Pre-meeting (30mins)
I meet with Gerry, Katherine and Sue to discuss how they got on with the reading and research questions. We all share our opinions on the paper.
2. Main meeting (1 hour)
The wider review team (my colleagues from the department) join, so that the whole group is present. Each team member discusses the themes they found in the text summaries. I facilitate the discussions but try not to take over, so that the conversation can flow naturally and everyone has a say.
3. Post-meeting (30mins)
The wider review team leave. Gerry, Katherine, Sue and I stay behind to discuss how the meeting went. This is an opportunity address any concerns that emerged during the main meeting. We also complete any admin tasks, such as making payments.
As I write this, we have had two meetings. What I have learned so far is the importance of making use of the expertise around me to bring the best out of the project. Visiting members of SUGAR more than once has meant that they have a good understanding of what I am doing and are able to give me informed advice. I hope to keep them involved throughout the project. I also check in regularly with the wider review team as well as Sue, Katherine and Gerry to see how they feel about their involvement, and to discuss if anything needs to change to improve things.
For work like this to be successful, a lot of preparation is required: arranging the meetings, making sure that the materials shared are accessible, lengthy processes to collect the cash each time from QMUL (I’m based in Newham), and it is necessary to regularly keep in touch with everyone in the team. However, the rewards are worth the extra time. The collaboration of people from so many different professional and personal backgrounds is eye-opening as well as very enjoyable. Members of the group express opinions about the research that hadn’t occurred to me before and everyone genuinely seems to be enjoying the process from learning from each other to get a deeper understanding of the issues we are researching.
You can read the first part to Aysegul's post on our engagement blog.
Written by Aysegul Dirik (@ayse_d)
Unit for Social and Community Psychiatry
WHO Collaborating Centre for Mental Health Services Development