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By applying the concept of participatory spaces, this article maps and analyzes current research on mental health service user organizations (MHSUOs). We have analyzed research literature from 2006 to 2016 to examine how the role of and challenges facing MHSUOs are formulated in the post-deinstitutional era. The current situation is marked by MHSUOs parallel presence in invited, claimed and popular spaces for participation. The post-deinstitutional era is characterized by a shift in focus from gaining access to such participatory spaces, to critically examining the political opportunities available in these. We further argue that the dominance of psychiatry-specific spaces could prevent MHSUOs from fully exploring their potential for participation in broader social issues. 

The aim of this article is to map the field of Swedish mental health service user organisations (MHSUOs) with a focus on organisational characteristics, positions and relationships. This mapping enables us to discuss these organisations’ repertoires of contention and their connections to governmental actors. Annual reports, organisational by-laws, and financial reports were collected for each of the 12 MHSUOs and the two network organisations that were included in the study. The empirical material was analysed according to the organisations’ size, activities, target groups, relationships and main knowledge base. Developments towards professionalization and hybridisation are evident within the field, and repertoires of contention are focused on advocacy and educational activities, with organisations providing experiential knowledge as a service to external actors. We further discuss how close ties to governmental actors and a consensus-oriented approach is related to risks of failure in recognising the conflicts that social mobilisation presupposes. It is crucial to strengthen MHSUOs independence, financial and otherwise, in order for these organisations to remain responsive to demands from the collective of service users.

Mental health service user movements have historically to a large extent employed collective forms of mobilisation, where people with service user experience have joined in formal organisations or informal groups. Currently, expressions of service user engagement are changing, and we can now observe the growth of more individualised expressions, often enacted online. This article introduces the concept ‘service user entrepreneur’ (SUE), that relates to this development. SUEs are individuals with service user experience who have made a career of their engagement in mental health issues. Based on their individual narratives of mental ill-health, SUEs often express themselves in participatory media, hold lectures and write books on the subject. The aim of this article is to examine how SUEs in their communication establish authority. Applying case study methodology, we follow four Swedish SUEs involved in mental health issues and analyse their communication primarily in digital arenas. Intimate personal narratives, mobilisation of collectives and institutional perspectives constitute authority sources for SUEs. Balancing individual and collective narratives as well as maintaining a desirable level of vulnerability is a continuous effort. How SUEs manage these issues is further discussed.

Previous research has shown that experiential knowledge plays an important role for service user movements and has also discussed ambiguities in the definition of this type of knowledge. This study contributes to clarifying how experiential knowledge is understood within the service user movement. Through semi-structured interviews, it explores how Swedish mental health service user organisations (MHSUOs) and service user entrepreneurs (SUEs) regard the role of experiential knowledge for their endeavours. The study shows that SUEs and MHSUOs view experiential knowledge as complementary to established medical and expert knowledge. Both groups further reflect on the functions of individual and collective dimensions of experiential knowledge. Emotions are important in conveying experiential knowledge, although emotional commitment can be short-lived. The study discusses challenges for SUEs and MHSUOs in developing strategies to manage risks tied to strategic essentialism, and also in maintaining a critical standpoint towards established service providers.