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The beginning of a long journey: Integrating lived experience into the design of an app for young people with ADHD

Dr Aislinn Bowler and Dr Ana-Maria Butura

Postdoctoral Research Associate and Clinical Research Lead

02 June 2026

When a room is filled with laughter, openness, and mutual respect, you know you’ve created the right environment for a lived experience workshop. The workshop held on 15 May at the department of Social Genetic and Developmental Psychiatry, aimed to understand the challenges faced by young people with ADHD as they transition into adulthood and adult clinical services.

The workshop is the first activity of a major piece of work as part of the ADHD Remote Technology and ADHD transition: predicting and preventing negative outcomes—ART-transition—project, led by Professor Jonna Kuntsi, Professor of Developmental Disorders and Neuropsychiatry at the Institute of Psychiatry, Psychology and Neuroscience.

The project uses ADHD Remote Technology (ART) that is based on the RADAR-base system, developed by co-investigators Professor Richard Dobson, Professor of Health and Medical Informatics, and Dr Amos Folarin, Senior Software Development Group Leader, to study the transition from adolescence to adulthood among people with ADHD. It will involve developing a prototype for a new ADHD-transition smartphone app.

People with different lived experiences of ADHD attended the workshop including young people with ADHD (some of whom are current participants of the research project), parents of young people with ADHD, and clinicians who work with young people with ADHD. This allowed us to understand the transition of young people from various perspectives.

Young people sitting at desks talkng in a group with researchers — Young people discussing their ideas and experiences with researchers

Understanding experiences of ADHD

We structured the workshop around a series of participatory activities designed to explore young people’s experiences of ADHD transition and identify priorities for support.

The workshop began by framing transition as two overlapping processes occurring simultaneously: the clinical transition from child to adult ADHD services, and the broader transition into young adulthood, involving increasing independence and major life changes such as leaving school, starting university or employment, and independent living.

Participants first took part in open-ended small-group discussions about what they had found difficult, helpful, unexpected, or worrying within these transitions.

Participants then mapped their experiences onto a set of themes identified through the ART-transition research programme and wider literature, including areas such as medication management, self-advocacy and emotional wellbeing, while also identifying missing themes or areas of disagreement.

Finally, participants prioritised the areas that had the greatest impact on them using dot voting and a structured support-needs exercise to identify which aspects of transition were perceived as requiring the greatest level of support. Throughout the workshop, groups shared headline themes, key concerns, and differing perspectives with the wider group.

The workshop adopted a co-design approach, integrating lived experience with existing evidence from the ART-transition project and related literature. Stakeholder input was used not only to refine priorities and identify unmet needs, but also to ensure the proposed app reflects the realities of transition and what is practically useful for young people navigating ADHD services. – Dr Ana-Maria Butara, Clinical Research Lead

The workshop was led by co-investigator Professor Johnny Downs, Professor of Child Psychiatry and Health Informatics, IoPPN and members of the CAMHS Digital Lab, who have experience co-developing digital mental health tools, including myJournE, a mood monitoring app.

Integrating the lived experiences of people with ADHD has already played an important role in our work in the ART-transition study. We have held multiple workshops in the lead-up to the study and run a pilot study before we started - ART-pilot.

Our lived experience panel provides advice and input throughout the study and are also part of the co-design process. The patient and public involvement work is led by co-investigator Professor Maddie Groom, University of Nottingham and colleagues, from MindTech, based at Nottingham University, and by Andrea Bilbow from the ADHD Charity ADDISS.

Co-design is important, but meaningful involvement does not happen easily. It requires sustained commitment, careful planning, and collaboration. When done well, it creates the conditions for participants to contribute openly, comfortably, and with impact. We are very excited about the next steps in this process as we continue to develop and refine the app through an iterative co-design approach. – Dr Aislinn Bowler, Postdoctoral Research Associate

Young people in a classroom adding post-it notes with comments to a whiteboard — Young people with ADHD shared their experiences, comments and ideas to inform the development of the app

The co-design work doesn’t end with one workshop; it is a long, multi-year, iterative process that will culminate in a prototype app we can then test in clinical settings. We will hold multiple smaller interviews and workshops in the future and gain feedback on plans throughout the process.

We will also soon bring on board the company developing the app, The Hyve, who together with the engineers of the app we use in ART-transition, RADAR-base, will help us understand how to implement interventions and support in the app and how to design these features most effectively.

We are currently synthesising the workshop outcomes, which will inform the planning of future workshops that delve deeper into the app's priorities and mechanisms.

A lot of planning and organisation goes into organising a workshop, so we breathed a big sigh of relief when it all went to plan.