Lived Experience of Health and Wellbeing Among Young People with Early Psychosis in Aotearoa New Zealand.

First episode psychosis (FEP) can disrupt a young person's life and future health. Those with lived experience of FEP can inform effective support. This study investigated how young people with FEP experience good health and wellbeing living in Aotearoa New Zealand. Recent clients of early intervention services (n = 12) shared their stories across varying traditional and creative platforms. Thematic analysis revealed seven themes important for living well with FEP: whanaungatanga (relationships), addressing stigma, finding out who I am with psychosis, getting the basics right, collaborative healthcare, understanding psychosis, and access to resources. The themes informed five supporting processes: whakawhanuangatanga (relationship-building), using holistic approaches, creating space for young people, reframing, and improving access to appropriate resources. These findings deepen our understanding of how we can support young people to live well with FEP. This study highlights the value of creative methods and partnering with lived experience experts to conduct meaningful health research.This trial was registered at Australian New Zealand Clinical Trials Registry (ANZCTR) CTRN12622001323718 on 12/10/2022 "retrospectively registered"; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=384775&isReview=true .

Developing a System of Health Support for Young People Experiencing First-Episode Psychosis: Protocol for a Co-design Process.

BACKGROUND: People living with psychosis face a substantially increased risk of poor psychological well-being and physical health and premature mortality. Encouraging positive health behaviors from an early stage is crucial to the health and well-being of this population but is often overshadowed by symptom management within early intervention services. OBJECTIVE: Experience-based co-design is a participant-centered approach that aims to combine service user narratives with service design methods to design systems of support for health and well-being. This study aims to use experience-based co-design principles to co-design a system that supports the health and well-being of young people experiencing first-episode psychosis (FEP), which considers the lived experience of these people within the context of early intervention services. We also aim to develop a set of principles to guide future systems to support the health and well-being of young people experiencing FEP. METHODS: Up to 15 young people living with FEP aged 16 to 24 years who are service users of early intervention services in psychosis, their immediate support networks (family or friends), and health professionals involved with early intervention services in psychosis will be invited to participate in a series of co-design workshops. Data will be collected in various forms, including expressive forms (eg, art and spoken word) and traditional methods (interview transcription and surveys), with phenomenographic and thematic analyses being used to understand these data. Furthermore, the co-design process will draw upon indigenous (Maori) knowledge and the lived experience of mental health services from the perspectives of the members of the research team. The co-design process will be evaluated in terms of acceptability from the perspective of service users via rating scales and interviews. The study will be conducted within the Lower North Island in Aotearoa New Zealand. RESULTS: Data collection will be performed between August 2022 and February 2023. Drawing from extended consultations with service users and service providers, we have developed a robust co-design process with which we intend to collect rich qualitative and quantitative data. The results of this process will be used to create a system of support that can be immediately applied and as preliminary evidence for funding and resource applications to deliver and evaluate a "full" version of the co-designed system of support. CONCLUSIONS: The co-designed system of support and accompanying set of principles will offer a potentially impactful health and well-being intervention for young people experiencing FEP in Aotearoa New Zealand. Furthermore, making the co-design process transparent will further the field in terms of providing a blueprint for this form of participant-focused research. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12622001323718; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=384775&isReview=true. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/44980.