Talking Minds is a website co-designed with young New Zealanders who have experienced psychosis and their families/whānau. Its aim is to help inform young people in New Zealand and around the world about psychosis so that they can recognise the signs early on and be empowered to live their lives to the fullest. The website also provides information for families and friends who want to learn more about psychosis and how best to support young people who experience it.
The DHW Lab was approached by a group of mental health pharmacists who were developing a resource to help educate young people (16–25) experiencing psychosis about medication and the importance of adherence in recovery. The opportunity they presented to the Lab was to create a more user friendly version of the resource through a digital platform. But in order to create a truly user-centred resource for people experiencing psychosis, we needed to engage young people and their families to co-design the resource together.
Existing digital information on psychosis is overwhelming, unrelatable and not always trustworthy. Furthermore, images associated with psychosis portray the condition as a dark, chaotic and depressing disease, which does nothing to help people experiencing psychosis but only strengthens the stigma already deeply associated with mental illness.
Coming up with ways to meaningfully engage young people in co-design to share their thoughts, ideas and experiences can be challenging, let alone those affected by mental health issues. Rather than using traditional ‘old people’s’ methods such as interviewing, questionnaires, and focus groups, we needed to develop fun, creative and interactive methods to get them engaged in co-design.
We ran a series of ‘discovery’ workshops to explore how a digital resource could support their needs. As an icebreaker to these workshops, we began by ‘co-designing a pizza’. Participants wrote down three favourite toppings on sticky notes, which we then arranged into flavour combinations that we thought would be tasty. This gave everyone the chance to share their own preferences and demonstrated how we would work collaboratively throughout the session. It also gave us a delicious lunch to look forward to!
Later in the session, we wanted to understand people’s experiences of psychosis at a deeper level, so we used a persona called Jack, and asked them what he might be thinking and feeling if he’d just been told he has psychosis. Rather than asking them directly and putting them on the spot, this method allowed people to feel more comfortable about sharing their own thoughts, feelings and experiences, without feeling singled out, by projecting onto a fictional character.
During ‘prototyping’ workshops, we asked participants to “draw what a bad day looks like and what a good one looks like”, and then share what their drawings represented. Two themes emerged: sharp, zig-zag shapes were typically associated with bad or difficult days, while wavy, circular shapes were associated with good days. These shapes were then used to create different patterns that acted as inspiration for the look and feel of the website. Alongside a system of illustrations and a vibrant and playful colour palette, these visual elements allowed us to present information about psychosis in a much more positive and empowering way.
Young people and their families were involved in the co-creation of Talking Minds from the very beginning. It serves as a comprehensive resource to learn about psychosis, how best to manage it, and provides insight into other people’s experiences. The extensive focus on the New Zealand context makes Talking Minds a relatable resource for young service users, their families, mental health professionals and support services.
Talking Minds is in the final stages of design and will be launching late 2017. Young people, their families, and health professionals will continue working together as the resource evolves.