Let’s make it (un)comfortable!: Co-designing genuine collaboration for mental health care transformation

Abstract

The way we look at mental suffering shapes what we see and what we design. For a long time, the perspectives of clinicians and scientists were dominant, leading to systems such as the DSM. Under the influence of the recovery movement, however, there has been growing recognition of experiential knowledge: the insights of people with lived experience of mental suffering. This dissertation examines what happens when such experiential knowledge is taken as the starting point for designing innovative approaches to psychiatric care. What emerges when people are enabled to shape and express their own stories in their own way? In addition to theoretical explorations – addressing the limitations of DSM classifications, the role of experiential knowledge in design, the risk of ‘participatory assimilation’ (participation that appears to offer a voice but does not truly do so), and the possibility of reimagining the DSM itself as a conversation piece rather than a classificatory system – one key outcome stands at the center: the In Picture approach. In Picture is a creative toolkit, developed in collaboration with people with psychosis and mental health professionals. It supports individuals in making their experiences, challenges, and strengths visible, using their own language and tools. This enables professionals to gain a richer and more personal understanding of the individual. At the same time, it supports the development of a shared language informed by lived experience rather than diagnosis alone. This dissertation shows that if psychiatry aims to design different forms of care, it must embrace different perspectives. And that requires a willingness to balance between comfort and discomfort.