The Design Rationale and Preliminary Evaluation of a Prototype Designed by People With Lived Experience of Psychosis and Professionals: Design Research Study #MMPMID41343826
Veldmeijer L; Terlouw G; Van 't Veer J; Van Os J; Boonstra N
J Particip Med 2025[Dec]; 17 (?): e80184 PMID41343826show ga
BACKGROUND: Experiences of mental distress are considered difficult to communicate, particularly experiences of psychosis. Research indicates that the frequently used medical focus falls short in capturing the nuanced interpersonal dynamics that these altered states may involve. Psychosis may seem very different from a lived experience perspective than it does from a traditional psychiatric perspective. This calls for innovative lived experience-based methodologies. This paper presents the development and preliminary evaluation of a design prototype co-designed to strengthen the role of people experiencing psychosis in the care process and describes its design rationale. OBJECTIVE: The aim of this research is 2-fold. First, this study aims to co-design, in partnership with people with lived experience, an approach supported by generative design methodology that enables clients to express their experiences in their own way and evaluate the developed approach with dyads of clients who experienced a first episode of psychosis and professionals. Second, it aims to provide a clear and transparent design rationale for the approach, enabling future designers and researchers to understand its intention. METHODS: The study involved co-design workshops, prototype sessions, a small-scale test phase with 7 client-professional dyads, the generation of qualitative data through semistructured interviews, and deductive and inductive thematic analyses. RESULTS: The In Picture Approach was co-designed and tested, and its design rationale was described. The preliminary evaluation indicates that the developed prototype stimulated motivation, dialogue, and reflection of clients, with professionals reporting improved insight into their clients and some reconsiderations in care plans. While the exercises themselves were not always the source of new insights, the conversations they provoked proved meaningful. Clients felt seen and empowered and felt more able to take the initiative. Guided by design frameworks, the design process and design rationale were described, including design principles, supporting theories, working theory, design choices, and coproduced goals, allowing future researchers and designers to build on the concept. CONCLUSIONS: This study presents a lived experience-based, co-designed prototype that can be positioned as a potential boundary object, along with its design rationale. Preliminary test results suggest that In Picture Approach can foster meaningful dialogue between client-professional dyads, support clients' self-exploration, and provide professionals with new perspectives on their clients. Although tested on a small scale, the results suggest its potential as a supportive tool within recovery-oriented care; however, broader and longer-term evaluation will be required to establish its contribution to personalized care planning. The co-design approach stimulated lived experience leadership by giving real decision-making power to people with lived experience of psychosis. Most importantly, this paper shows why it matters to make design rationales explicit in a field where they are often missing.
J+Particip+Med 2025 ; 17 (?): e80184
