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 postdeinstitutional 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.

No abstract

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.

User-focused monitoring (UFM) is a method of evaluating mental health services, conducted by people with lived experience of mental ill health. Research on UFM and on user involvement focused on service monitoring and evaluation is lacking. This study addresses this knowledge gap by examining UFM as a strategy for user involvement. More specifically, this study aims to synthesize patterns in UFM reports to characterize the phenomenon, as well as to further discuss negotiation processes and political opportunities in UFM. The empirical material consists of 136 Swedish UFM reports that have been analyzed in two steps: All reports were mapped according to general characteristics and a sample of 20 reports were selected to provide additional information on the method. This study has been conducted in collaboration with actors representing the user movement and municipality-based mental health services. Our analysis shows that long-term contracts between user organizations and service providers are important to create a sustainable implementation of UFM. However, strategies to protect user autonomy must be carefully considered and employed in relation to such collaborations. We further highlight the risks of a restricted focus on consumer satisfaction, and discuss the current development towards including follow-ups in the UFM process as a strategy for counteracting tokenism.

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.

Including the voices and knowledge of service users is essential for developing recovery-oriented and evidence-based mental health services. Recent studies have however, suggested that challenges remain to the legitimization of user knowledge in practice. To further explore such challenges, a co-production study was conducted by a team of researchers and representatives from user organizations in Sweden. The aim of the study was to explore the barriers and facilitators to the legitimacy of user knowledge, as a central factor in sustainably implementing user influence in mental health practice. A series of workshops, with representatives of mental health services and user organizations were conducted by the research team to explore these issues. The analysis built on the theoretical framework of epistemic injustice, and the underlying aspects, testimonial, hermeneutic and participation-based injustice, were utilized as a framework for a deductive analysis. Results suggest that this is a useful model for exploring the complex dynamics related to the legitimacy of user knowledge in mental health systems. The analysis suggests that the legitimacy of user knowledge is related to the representativeness of the knowledge base, the systematic formulation of this knowledge in applicable methods, access to resources and positions within the mental health system and participation in the process of integrating this knowledge-base in mental health contexts. Legitimizing user knowledge in practice additionally challenges mental health systems to support readiness for change in working environments and to address the power and role issues that these changes involve.

User-focused monitoring (UFM) is a method of user-led mental health service evaluation that focuses on strengthening user involvement and developing the quality of services. Despite an increased emphasis on user involvement and the recovery orientation of services, scientific knowledge remains limited regarding how such goals can be realised. In this study, our aim is to explore UFM with a specific focus on how recovery processes are examined through the method in order to discuss how UFM can be developed in order to support a recovery orientation in mental health service evaluation. We sampled 20 Swedish UFM reports for qualitative analysis, and we found that UFM is a promising method for integrating a personal recovery perspective in service evaluations. By being performed peer-to-peer, the method has the unique ability to gather experiential knowledge regarding the situation of service users. UFM especially contributes to exploring service users’ experiences related to social connectedness and user involvement in services. We also discuss how the method can be developed to further support a recovery orientation in UFM. This might be achieved by integrating a process-oriented approach in the evaluations and by including the user informants’ own goals and views on what constitutes meaningful support in UFM. Suggestions for future developments concern incorporating personal recovery perspectives in the training of user monitors and creating structures for aggregating the knowledge produced through UFM.