Here are some of the things that I’ve learnt along the way:

Co-design the co-design approach with people with lived experience

The best way to ensure that you are approaching a research session or workshop in the most caring, inclusive and thoughtful way is to co-design the approach with people with lived experience. Ideally before you even fully start the project you bring in people with lived experience to help shape the project. What I often tend to do is create a basis for how I think a research workshop could be run and then work with a few people with lived experience to run through the plan and make improvements. This has been really helpful to ensure the right language is being used, the right amount of information is provided to people before the workshop or research chat and that people will feel supported before, during and after the co-design workshops or chats. 

Ensure everyone knows that they don’t have to share their story 

Co-designing future improvements to services or new services with people with lived experience is key to making sure that what you are creating will best meet peoples needs. It’s vital to ensure that a participant is supported throughout the process and being involved is a positive experience for them. There is the large potential especially around difficult subject areas for the research to be triggering for people and bring up a lot of emotions. 

We always ensure that people know they don’t need to share their story or anything that they don’t feel comfortable with, we always ask people to provide trigger warnings for others in the group if it’s a workshop and we ensure that people can make a really informed decision about getting involved by sharing a workshop guide with them beforehand so that can see the activities and questions that will be asked. 

Always have a mental health first aider and safeguarding in place for both participants and researchers 

We always make sure there is a mental health first aider present, we have safeguarding processes in place, someone is there to talk to if someone steps out of a workshop and that there is signposting to further places or support after the workshop or research chat. 

We sometimes will also provide guidance for people about getting involved – saying something like “Please keep in mind that this workshop has the potential to be triggering, you can step out at anytime and there will be someone available to have a chat with you”. On the end of life care project we provided guidance saying that we recommend that people take part in the workshop if their loved one died more than 6 months ago. We did this to try and ensure that people were in a space emotionally that being involved wouldn’t be too triggering or painful – we always leave this up to the participant though as everyone is different. 

Enable people to get involved how they feel most comfortable

We always strive to enable people to get involved in the way they feel most comfortable, that might be joining a workshop, having a call online or writing their thoughts. We always ask people if they want to bring anyone along for support and will also pay for their travel and involvement too. 

Where possible we try to have someone who might be familiar in sessions, when working with Rape Crisis we made sure that someone from the local Rape Crisis Member Center was in each session so that there was someone that people were comfortable with in each workshop as well as a facilitator running the session and someone available to step out and provide support if anyone needed it. 

We have heard from people that they have really enjoyed being involved in co-design projects and that have often said they find it therapeutic. We always strive to ensure that people can see the impact of their time and insights, following up with updates from the project and what impact it has created is really important. 

I hope this has been helpful, there are many more learnings but these are some of the key things that stick in my mind!

I’m thinking about doing some talks about approaching co-design in difficult spaces and will also be wiring a blog about co-designing with children and young people. Let me know if your organisation might be interested in this talk/light touch training.

Thank you to all of the amazing people who I have had the pleasure to work with across these projects, it’s been a privilege and pleasure to work with you to create improvements in some really important spaces.