Co-production of research with those with lived experience: an example from an ADHD study

We have been posting about co-production in research over the last few weeks in a series of posts aimed at a researcher audience (‘Insights from Researchers on Co-Production’). We will also shortly have a parallel series of posts from the perspective of a parent of a child with a disability. In our post today, which is aimed at all readers, we will summarise the key findings of a study we recently published that involved working with children and their teachers to gain their insights into our intervention development. We hope to highlight not just how important their role was but actually how their insights were central to making sure our research would work and benefit them in their everyday life.

We interviewed children with ADHD and their teachers about their knowledge of ADHD, the strengths and challenges they faced at school, alongside what strategies they used to support these challenges. We had developed an intervention model around a range of principles and evidence from the research literature. This included for example our research that has shown these children show difficulties in multiple aspects of thinking including really broad aspects of memory and an extensive range of strategic thinking skills such as cognitive flexibility and planning. A second principle of what is called ‘taking a transdiagnostic approach’ (considering presence of multiple conditions e.g. ADHD + ASD) was influenced by the growing array of research studies highlighting the impact of co-occurrences including our own work. It was very important to us though that as well as being influenced by research evidence that the experiences of those with lived experience were also represented in refining the intervention. Not only is this just the right thing to do morally, but taking this approach also ensures we can translate these principles from research into practice effectively. In this case, insights gained from the experiences of teachers and children within the school context were really important. Knowing their perspectives can help ensure research work is feasible in complex environments such as classrooms.

A key finding was the children had little understanding of what the core characteristics of ADHD are. This highlighted that our planned use of Psychoeducation (i.e. their understanding of their strengths and difficulties) in the intervention was critically important for children themselves and not just for those that support them such as their parents and teachers.

Another key finding was teachers’ insights into the strengths of children with ADHD. Surprisingly there are very few studies that look at the strengths of these children as most are focused on the difficulties they have. Teachers in our study commented that many of these children had great imaginations and that this was a positive attribute in areas such as literacy. It is very easy to become focused on supporting difficulties of neurodivergent children and neglect thinking about strengths but actually these attributes may be very important in overcoming the difficulties these children show.

The interviews also probed children and teacher’s use of strategies to support children with ADHD in the classroom. Here teachers commented both on using strategies with the particular child with ADHD but also using the strategies classroom wide. This insight has been invaluable for us and has enabled us to promote both the use of strategies when working with the child individually and also in taking a whole class approach. Children also mentioned using strategies they found useful that the teachers were not necessarily aware of. These often related to personal interests and use of toys such as fidget toys. These interviews and broader Patient and Public Involvement (PPI) work we have undertaken has helped us to incorporate important features that really matter to children such as drawing on their special interests e.g. lego and incorporating the use of the toys they like to play with in intervention activities.

We hope this blog post highlights the importance and value of involving children and those who support them directly in research decisions and practices. There is a common saying ‘nothing about us, without us’ that is increasingly used in the area of research design and procedures. Ultimately if we want to ensure our research better understands children and is optimally effective at supporting them we need to ensure their experiences are central to the development of the research.

Visual production credits: SDI Productions via Getty Images