What challenges do you envisage you might face when co-designing with people with cognitive disabilities?
Good question. There are several issues that I envisage, and have in fact encountered.
First and foremost, the issue of ensuring co-design actually happens. By this I mean that so often we see/hear about researchers “co-designing” with their participants (with any type of disability) and yet I am not always convinced that co-design is happening in a way that seeks to apply the knowledge gained, to the design of the end product/content. One of the challenges in this is including the co-designers in a range of processes and not just at the beginning. For example, in some work I have been involved, we have continued to work with our co-designers throughout the design and implementation phases. This is not without its challenges, but can result in a more meaningful co-designed outcome.
Have you identified any approaches that have proved successful when co-designing with people with cognitive disabilities?
I have. Approaches that I have identified that have proved to be especially useful include:
Including stakeholders (as many as possible) from the very outset. By this I mean in the co-creation of research questions and methodologies. At the very start. It can reveal so much.
Provide a range of ways that enable people to communicate and share their knowledge/ideas. Here we need to acknowledge that people sometimes need a range of tools and ways to share their ideas during co-design sessions; I’ve used mind maps, drawings, think-aloud, cut out shapes, post-it notes, etc….
Be sure that you feedback your interpretations of the co-design process with the people involved. Showcase a range of ideas that allow for continued feedback and changes. I’ve found that the more flexible you can be, the better the final outcome is (for your users).
Be adaptable. Try and enter co design sessions in such a way that you can manoeuvre through the session in a range of ways. This will facilitate greater input and ideas from your co-designers. In relation to this, try and involve all co designers in the session. Some might be quiet, but have great ideas to offer. So be sure to include all.
Can you foresee any ethical difficulties/concerns during the co-design process with people with cognitive disabilities?
I see several concerns and/or difficulties. The main concern that I’ve been tackling with includes ways we value the time and input of people with disabilities in our work. Here I am really referring to ways we recognise the time and input of our co-designers. Is it fair that as researchers that we ask for their time and input and then use these data to help us design outputs without any real and/or meaningful recognition? I review many ethical application forms that seek to build in the views of neurodiverse groups (which is great) but without any meaningful recognition or ways to feedback the findings to the co-designers (or stakeholders). So, I feel much more could be done here. In addition, I feel there are challenges around who we work with. I’m not convinced that research works with the full spectrum of neurodiverse groups; mainly focusing on groups who are more able to engage in co-design workshops. I have worked hard to develop ways to engage with a wide range of participants and co-designers in my research. In doing so, I have unlocked insights that have greatly informed my work and ideas therein.