It was important to engage young people and their families early on, and throughout the entire design process, to ensure a truly user-centred local resource is created. Following the UK Design Council’s (2005) Double Diamond design process model, we used a co-design approach to conduct a series of discovery, prototyping and evaluation workshops with young people, their families/carers and clinicians in hospital and community mental health settings. With sufficient time and resources available, we were able to carefully craft methods to enable engagement with all participants, regardless of their confidence or physical/mental capacity to verbalize or materialize their thoughts, feelings or perspectives. The co-design sessions were largely inspired by young people’s extensive use of social media metaphors and were adaptable to their interests, preferences and mood. We used storytelling through emojis and a relatable persona with emotion mapping to gain insight into the experiences, needs, motivations, emotions and interests, a card sorting activity to prioritise content, and an icebreaker that involved the group co-designing a pizza for our lunch. In the prototyping and evaluation workshops, emotion abstract sketching was used to guide the look-and-feel of the future resource, and simple A/B tests were used to evaluate the amount/length of content. Developing the content for the final prototype to achieve a user-friendly language and tone-of-voice for the resource would have not been possible without the generous input from consumer representatives and cultural advisors on our transdisciplinary team.

Early in the process, we found that existing resources on psychosis were mainly grim, scary, visually cluttered and overwhelming. There were no Aotearoa NZ specific resources available, let alone those that considered ways Māori and Pasifika traditionally contextualised experiences associated with psychosis. Through the co-design process, we found that there was a disconnect between what patients needed and what clinicians thought they needed. First off, young people in our workshops wanted a website, not an app, that would be a one-stop shop for young people and their families to learn more about psychosis and how best to manage it. Young people in our workshops clearly expressed the need to know more about psychosis than just the importance of medication – starting with what it is, what questions to ask early on, and what the diagnosis meant in terms of their daily life and management. Families wanted information on how to help their loved one to manage their experiences of psychosis, and they all wanted to hear other people’s stories and experiences. The language and the look-and-feel of the resource needed to be hopeful, empowering, simple and clear, take a patient’s perspective and experience, and allow for self-directed learning for those who want it.

Despite the general stigma, misrepresentation and bias existing around what people with significant mental health difficulties are capable of in terms of engagement, this project demonstrates that, given the chance, young people experiencing psychosis can be meaningfully engaged in co-design using simple, flexible, solution-focused, creative participatory methods. Early in the workshops it was clear that our participants’ youth and associated unique needs and interests presented a far greater challenge for us as researchers than the fact that they had experienced mental health challenges. It was important to consider young people as equal partners in the design process, by valuing them as experts in their condition and experiences and to adapt the workshop activities to their interests and age, so that they did not feel intimidated, bored or patronised. Incorporating their ideas in concept designs helped to validate their input, and kept them motivated, resulting in enhanced ongoing engagement.

The findings of this research were disseminated via journal articles, national and international conference presentations and published proceedings, symposia (including a mental health service user-led symposium), news articles, radio interviews, design awards, public healthcare officials, social media, digital artefacts, and posters/pamphlets about the resource disseminated to clients visiting mental health services. The resource is also currently being used by clinicians in the mental health services settings as part of the consultation visits with users.

Talking Minds has been well accepted and used by end users and mental health professionals. It has resulted in further collaboration with both public mental health services and NGOs on various other projects and opened up opportunities to involve design students in projects in this space. Describing in detail our entire research process and methods led to this research being used as a great demonstration of the potential of co-design, with such detail often lacking from research published to date. Dissemination of findings via multiple channels lead to our group being contacted by international researchers seeking advice on conducting design research in the context of mental health.