ABSTRACT
Background: The purpose of this paper is to outline the protocol for the research program "UserInvolve," with the aim of developing sustainable, service user involvement practices in mental health services in Sweden. Methods: This protocol outlines the knowledge gap and aim of the UserInvolve-program. It further provides an overview of the research infrastructure, with specific focus on the organization and management of the program as well as the design of the six underlying research projects. These six research projects form the core of the UserInvolve-program and will be carried out during a six-year period (2022-2027). The projects are focused on examining articulations of experiential knowledge in user collectives, on four specific user involvement interventions (shared decision-making, peer support, user-focused monitoring, and systemic involvement methods) and on developing theory and method on co-production in mental health research and practice. Results or conclusion: The knowledge gained through the co-production approach will be disseminated throughout the program years, targeting service users, welfare actors and the research community. Based on these research activities, our impact goals relate to strengthening the legitimacy of and methods for co-production in the mental health research and practice field.
ABSTRACT
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.
ABSTRACT
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.
