There are different ways to make physical activity programs or do research where everyone can get involved. One of these methods is called Experience-Based Co-Design (EBCD). But sometimes, EBCD needs to be changed so it can include young people with disabilities, parents, and community members. In this project, we wanted people who have lived experience of disability to join our team as ‘co-researchers’ and help us do EBCD research. This paper explains how we worked together and where co-researchers helped most.

Methods

We followed six steps to work together. Our team included people with disabilities (co-researchers), university researchers, co-design facilitators, and people who gather feedback (evaluators). Three co-researchers and two university researchers led the process of working together, making big decisions and keeping the project on track. We communicated using video calls, phone calls, and email. We also used notes, meeting minutes, and diaries to remember what we did and considered.

Results

We changed the EBCD method so it would work better for people with disabilities, using creative online activities. We made a two-part project called the ‘CycLink Co-design Study.’ The first part of the project was about making a community cycling program (CycLink) in partnership with young people with disabilities, parents, and community members. The second part was about gathering feedback from EBCD participants to check if our online co-design felt engaging and worthwhile. The co-researchers helped decide who could join the project. They helped make accessible consent forms and ensured research materials were easy to understand. While we were doing EBCD, co-researchers shared their impressions about findings, which helped make the results more relevant and thoughtful. If we had more resources, we would have trained co-researchers to lead EBCD activities like doing interviews and workshops with participants.

Conclusion

Working together let us change EBCD so we could include people with different needs and abilities. We made lots of little changes based on our experiences, what people with disabilities told us, and by using helpful guidelines. In the future, EBCD projects should think about including co-researchers from start to finish.

Patient or Public Contribution

Two adults with disabilities and a parent of a young child with a disability joined our team as co-researchers. They liked that they could choose how much they wanted to be involved – sometimes just giving advice or other times leading tasks. Their real-life experience made the project better and more helpful. We wrote down how much they helped using a special checklist called GRIPP2-SF (see Supplemental File S1-Section A, Table S1).