Lived Experience and Co-Production: A Q&A with Dr Lindsay Dewa
This past month, the COVID-Minds Network has been discussing how researchers can involve people with lived experience of mental health difficulties in their studies. Dr Lindsay Dewa, a Research Fellow in Public Health at Imperial College London, is running a mixed methods study examining mental health status and coping strategies among young people in the UK in response to the COVID-19 pandemic. She and her colleagues made sure their study, “Covid-19 Coping in Young People” (CCopeY), was co-produced with young people from start to finish.
Below, she describes the process, what she learned, and how working with young people strengthened her research.
How did you involve people with mental health expertise in your study?
Our goal was to build upon two recent surveys, YoungMinds and another by the Academy of Medical Science and the mental health research charity, MQ. We wanted young people to fully influence and guide our research.
Creating a Young Person's Advisory Group (YPAG) proved central to this process. Ours comprised 16- to 24-year-olds of different genders and ethnicities. During a two-hour virtual meeting, we produced 11 research questions. To narrow this down, we also asked 78 young people from across the UK to help us prioritise one question. The YPAG came up with ideas to promote our survey using social media. We received nearly 800 responses with a higher percentage representation of black and minority ethnic groups than the UK’s population. Most were female.
We made all key decisions on all aspects of the study with the YPAG through almost daily discussions on a WhatsApp group from April to June.
Members of our YPAG were trained online in Youth Mental Health First Aid and to carry out interviews and analyse data. A researcher and a clinician were on-call during the interviews, should support be needed. The YPAG transcribed and coded each interview transcript.
In June, we had three separate two-hour virtual meetings to produce a coding framework, initial themes and a thematic map. We co-wrote our academic paper which is now under review at a peer-reviewed journal.
In what way did the YPAG improve your study?
Our YPAG was crucial for helping us understand what was most important to young people across the UK. Their input was invaluable in the design of our surveys. While we used validated measures, we adjusted questions to make them more applicable to young people. For example, for relationship status we added “it’s complicated”, rather than including only “single,” “married,” etc.
The reach of our survey was also much wider thanks to the YPAG. The group promoted it to their networks and came up with ideas like creating an engaging poster, using TikTok, and involving Instagram influencers.
With the help of our YPAG we also created a topic guide that was relevant and appropriate for the audience and easily understood.
Our young co-researchers also used appropriate probing in the interviews and interpreted findings in new ways, which might have otherwise been missed. For example, some identified differences in experiences between participants with pre-existing mental health difficulties and those who had developed mental health difficulties since the COVID-19 lockdown, which meant we were able to analyse these results separately.
I wouldn’t do research any other way. While working with people with lived experience is ethically fundamental to research, it also makes us better researchers. I have learnt so much from young people. I know what matters to them, how they will respond to our findings, and what language is most clear to them.
Our conclusions have been more holistic and have made me a better researcher.
3. Were there any challenges? If so, how did you overcome them?
The project moved rapidly because the team wanted the study to inform urgent policy. This meant that we could not recruit YPAG members publicly. Instead, we worked with members of the Imperial Young Person’s Advisory Group and from a previous mental health project.
The tight deadlines meant we sometimes asked our YPAG to attend meetings at short notice, review documents quickly, and work in the evenings and weekends. Fortunately, our group was very responsive and felt the work had a positive impact on them. For example, one said, “It’s great to be involved in this study as it can help you feel less isolated. You realise others are experiencing the same as you and we are trying to make a difference.”
Another limitation of the study was that all co-production and research was done online, which means we have not represented people without access to internet and technology. More work needs to be done to ensure research during the pandemic is as inclusive as possible.
What advice can you offer to other researchers hoping to meaningfully involve people with lived experience in their studies?
These are some top tips I’d give to other researchers:
Set up a communication strategy early on in the project to ensure voices are heard and decisions are made together throughout the project. Through our WhatsApp group we shared documents and ensured everyone had a say in decision-making. This was much better than emails and face-to-face meetings, which can cause delays. It also meant that young people could mute the group and engage with it when the time was right for them.
Use software that is accessible by all to ensure everyone can edit, comment and write in the same documents or platforms. For CCopeY, we used Jamboard (meetings and brainstorming), Trello (thematic analysis) and Miro (thematic map). The team used Jamboard so all the members were able to write on post-it notes, which made it feel more like an interactive face-to-face workshop.
Safeguard your co-researchers. This was of the utmost importance. For example, we created a safe space in meetings with ice-breakers about one positive thing from lockdown. We chatted socially at the start of meetings and on WhatsApp. The research team had existing strong relationships with the young people and were mental health first aiders who could spot any signs of deterioration of mental health.
Ensure your co-researchers are equipped to support the participants they interviewed. The YPAG completed a MHFA course and had two experienced child and adolescent psychiatrists on the team on call during the interviews. This was a precautionary measure that gave the YPAG confidence that help was available if needed. We also delivered two half-day training workshops on delivering interviews online with young people with experience of mental health difficulties and on how to code the transcripts.
Do you have suggestions for online resources?
There are many resources out there. I’d encourage researchers to look at:
A map of resources of co-producing research in health and social care
Imperial College’s Patient Experience Research Centre PPI Hub
If you have questions or comments, Dr Dewa can be reached at firstname.lastname@example.org or on Twitter at https://twitter.com/LindsayDewa.