— Co-design / Co-production with Children and Young People
Abstract
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 (Māori) 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.
Summary
This case study reviews Emerging Minds’ use of family participation (that is, the involvement of more than one member from a family, for example a mother and daughter) to advance the practices of co-design and co-delivery. It illustrates the value of family participation, explores the process, and highlights key learnings to ensure it is safe and beneficial for family partners, the organisation, and attendees.
Abstract
Aim: Residential group care is an important service for vulnerable young people experiencing mental health, substance abuse and/or behavioural challenges. Yet little is written about specific models and their outcomes, especially from the perspectives of the young people who use these services. This project aimed to explore what matters to young people living in a 12-month voluntary residential program for young people aged 16-25.
Methods: This participatory action research study was co-produced with Youth Residential Rehabilitation Service residents and staff as co-researchers. A steering group comprising residents, staff and researchers oversaw all research stages. 18 young people and 17 staff members participated in either individual or group interviews to discuss what was important in Youth Residential Rehabilitation Services. Data analysis drew on grounded theory techniques; subsequent codes and themes were refined in the steering group.
Results: We identified the 'change work' that young people were expected to do, and the milieu factors that created a supportive environment. As young people were figuring out their directions and learning new skills, they needed to be understood as the developing expert of their own lives. Real relationships with staff and other young people created a culture of belonging, safety and feeling known. These findings are metaphorically captured in the image of an egg.
Conclusions: Our study highlights that real relationships between all Youth Residential Rehabilitation Service community members are central to creating the atmosphere of safety and belonging that enables healing and self-development to occur.
About
This presentation focuses on:
- Challenging the status quo
- Hearing the journey of a young person that has transitioned from consumer to a valued CYMHS staff member
- A focus on co-design Understanding the why, what, and how
Abstract
Experience-based co-design (EBCD) is an innovative, evidence-based approach to health and social system change based on principles of participatory action research, narrative and learning theory, and design thinking. Unique elicitation strategies such as experience mapping, trigger videos, and prototype development are used in EBCD to engage service users and service providers in a collaborative process of identifying touchpoints and solutions to system-level problems.
In this article, we present findings from interviewing a purposeful sample of 18 participants (4 youth, 6 service providers, 6 family members, and 2 employers) across three co-design projects designed to address either mental health or employment services for youth (aged 16–24) with mental health issues in one urban center. Through interviewing participants, perceptions were explored relating to three elicitation techniques: creating experience maps, creating and viewing trigger videos, and co-designing visual “prototype” solutions. Analysis of participants’ comments indicated that these techniques can be powerful tools to foster mutual understanding and collaborative ideas, but they require a social, spatial, and temporal context that optimizes their value. A “safe space” is needed within which the essential elements of elicitation—building trust, finding voice, sharing perspectives, and creating a common vision—can occur. Three core, overlapping processes of co-design elicitation were identified: “building common perspectives,” “building mutual understanding,” and “building innovation.” We present a conceptual framework depicting the interplay of processes and elicitation techniques, essential to building mutual understanding and innovation during the EBCD process.