A holistic wellbeing support system for young people experiencing early psychosis: Results of an experience-based co-design study

When a young person first experiences psychosis, the world can feel like it is unraveling. Hallucinations, delusions, and a sudden loss of motivation disrupt the very foundations of daily life: sleeping, eating, and moving. This period, known as early psychosis, often strikes during the critical years when a person is trying to figure out who they are and where they fit in. While medical treatment focuses heavily on calming these intense symptoms with medication, the side effects of those drugs can be just as disruptive, often causing rapid weight gain and lethargy. For decades, the standard approach has been to treat the mind and the body as separate problems, addressing the psychiatric symptoms while hoping the physical health issues sort themselves out. Yet, people living with these conditions face a much shorter life expectancy than the general population, largely due to preventable physical illnesses like heart disease and diabetes. The question facing modern mental health care is whether we can build a system that treats the whole person, addressing their physical health, social connections, and sense of self all at once, rather than just managing a diagnosis.

In Aotearoa New Zealand, a team of researchers set out to answer this question by asking the people who know the experience best: the young people themselves. They did not simply ask what services were missing; they invited young people who had recently experienced psychosis, along with their families and the doctors and nurses who treat them, to design a new kind of support system from scratch. This process, known as experience-based co-design, treats those with lived experience not as subjects to be studied, but as essential experts who shape the solution. The goal was to create a culturally responsive framework that honors the unique needs of young people, or rangatahi, while navigating the complex realities of the New Zealand healthcare system. The result was not a theoretical model, but a concrete, practical blueprint for a support system that prioritizes connection, identity, and everyday wellbeing over symptom management alone.

The journey began with a small group of young people who helped the research team understand how to engage their peers effectively. They advised that the process needed to be flexible, offering creative ways to share stories through art and drawing, not just written words. They also insisted on fair payment for their time, recognizing that their expertise was valuable. With this foundation, the team moved into a series of workshops where young people and their families shared their deepest struggles and hopes. They spoke of feeling unsafe in clinical wards, of losing their identity to a diagnosis, and of the crushing weight of stigma that made them feel like a threat to society rather than vulnerable people in need of help. A recurring theme was the need to "get the basics right"—the simple, often overlooked tasks of eating well, sleeping, and staying active. The participants described a desire for a sense of belonging, a feeling of being part of a tribe where they were understood and valued.

These insights were then brought to a second group: the service providers, including psychiatrists, nurses, and social workers. The researchers presented the young people's stories and themes to this group, asking them to imagine how a support system could address these needs. The providers agreed that the current system was too fragmented. They saw the value in a holistic approach but pointed out the harsh realities of their daily work: a lack of time, funding, and staff. Despite these barriers, they collaborated with the young people to sketch out a new system. They mapped out a structure that would weave together six key components. First, a twelve-week health and wellbeing programme designed to be more than just a medical treatment; it would include creative activities, sports, and opportunities to build relationships. Second, a residential trip, perhaps a few days at a local marae or a nature reserve, to allow for deep connection and a break from the pressures of daily life. Third, a web-based app that would provide clear, relatable information about psychosis and medication, written in language that young people could actually understand.

The fourth component was a voucher system, a tangible way to support young people in re-engaging with their communities. These vouchers could be used for local activities like sports, art classes, or even a coffee with a friend, helping to rebuild social networks and autonomy. The fifth element was a streamlined referral system to connect young people with other specialists, such as nutritionists or traditional healers, ensuring they could access a wide range of support without falling through the cracks. Finally, the system included a strong focus on professional development for the staff, ensuring that the people delivering the care were equipped with the latest knowledge on physical health, cultural safety, and how to support young people through the ups and downs of recovery.

When the team tested this prototype with the young people and their families, the response was overwhelmingly positive. The twelve-week programme was seen as highly valuable, with participants rating it as something they would likely attend. The voucher system was particularly popular, with young people rating it as very useful for helping them get out of the house and connect with others. The web-based app and the residential trip were also viewed as feasible and beneficial, provided they were designed with flexibility in mind to accommodate the fluctuating energy levels that often come with medication side effects. The staff who reviewed the plan agreed that these components were valuable, though they remained realistic about the challenges of implementation. They noted that while the ideas were sound, the system would struggle without dedicated funding, enough staff time, and a commitment to cross-sector collaboration.

The study concludes that a system of support for young people experiencing early psychosis must go far beyond the prescription pad. It must be relational, holistic, and empowering, addressing the physical, social, and spiritual dimensions of health. The researchers found that when young people are given a genuine voice in designing their care, the resulting system is one that feels relevant and safe to them. However, the paper also makes a clear distinction between designing a solution and delivering one. The co-designed framework is a practical foundation, but its success depends entirely on whether the healthcare system can provide the necessary resources, time, and workforce capacity to bring it to life. Without these structural changes, even the most well-intentioned designs risk remaining on paper. The study offers a clear path forward, showing that with the right partnership between young people, families, and providers, it is possible to build a support system that helps young people not just survive their illness, but thrive in their recovery.