Developing sustainable service user involvement practices in mental health services in Sweden: the "Userinvolve" research program protocol.

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.

Legitimizing user knowledge in mental health services: Epistemic (in)justice and barriers to knowledge integration.

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 as a Strategy for Involvement and Mental Health Service Development: An Analysis of Swedish Monitoring Reports.

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.

Psychiatric service staff perceptions of implementing a shared decision-making tool: a process evaluation study.

PURPOSE: Shared decision making, SDM, in psychiatric services, supports users to experience a greater sense of involvement in treatment, self-efficacy, autonomy and reduced coercion. Decision tools adapted to the needs of users have the potential to support SDM and restructure how users and staff work together to arrive at shared decisions. The aim of this study was to describe and analyse the implementation process of an SDM intervention for users of psychiatric services in Sweden. METHOD: The implementation was studied through a process evaluation utilizing both quantitative and qualitative methods. In designing the process evaluation for the intervention, three evaluation components were emphasized: contextual factors, implementation issues and mechanisms of impact. RESULTS: The study addresses critical implementation issues related to decision-making authority, the perceived decision-making ability of users and the readiness of the service to increase influence and participation. It also emphasizes the importance of facilitation, as well as suggesting contextual adaptations that may be relevant for the local organizations. CONCLUSION: The results indicate that staff perceived the decision support tool as user-friendly and useful in supporting participation in decision-making, and suggest that such concrete supports to participation can be a factor in implementation if adequate attention is paid to organizational contexts and structures.

Development and usability testing of a web-based decision support for users and health professionals in psychiatric services.

OBJECTIVE: Shared decision making (SMD) related to treatment and rehabilitation is considered a central component in recovery-oriented practice. Although decision aids are regarded as an essential component for successfully implementing SDM, these aids are often lacking within psychiatric services. The aim of this study was to use a participatory design to facilitate the development of a user-generated, web-based decision aid for individuals receiving psychiatric services. The results of this effort as well as the lessons learned during the development and usability processes are reported. METHOD: The participatory design included 4 iterative cycles of development. Various qualitative methods for data collection were used with potential end users participating as informants in focus group and individual interviews and as usability and pilot testers. RESULTS: Interviewing and testing identified usability problems that then led to refinements and making the subsequent prototypes increasingly user-friendly and relevant. In each phase of the process, feedback from potential end-users provided guidance in developing the formation of the web-based decision aid that strengthens the position of users by integrating access to information regarding alternative supports, interactivity between staff and users, and user preferences as a continual focus in the tool. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: This web-based decision aid has the potential to strengthen service users' experience of self-efficacy and control as well as provide staff access to user knowledge and preferences. Studies employing participatory models focusing on usability have potential to significantly contribute to the development and implementation of tools that reflect user perspectives. (PsycINFO Database Record

Shared decision making in Swedish community mental health services - an evaluation of three self-reporting instruments.

BACKGROUND: Despite the potential impact of shared decision making on users satisfaction with care and quality in health care decisions, there is a lack of knowledge and skills regarding how to work with shared decision making among health care providers. AIM: The aim of this study was to evaluate the psychometric properties of three instruments that measure varied dimensions of shared decision making, based on self-reports by clients, in a Swedish community mental health context. METHOD: The study sample consisted of 121 clients with experience of community mental health care, and involved in a wide range of decisions regarding both social support and treatment. The questionnaires were examined for face and content validity, internal consistency, test-retest reliability and construct validity. RESULTS: The instruments displayed good face and content validity, satisfactory internal consistency and a moderate to good level of stability in test-retest reliability with fair to moderate construct correlations, in a sample of clients with serious mental illness and experience of community mental health services in Sweden. CONCLUSIONS: The questionnaires are considered to be relevant to the decision making process, user-friendly and appropriate in a Swedish community mental health care context. They functioned well in settings where non-medical decisions, regarding social and support services, are the primary focus. The use of instruments that measure various dimensions of the self-reported experience of clients, can be a key factor in developing knowledge of how best to implement shared decision making in mental health services.

Shared decision-making in mental health care-A user perspective on decisional needs in community-based services.

BACKGROUND: Shared decision-making (SDM) is an emergent research topic in the field of mental health care and is considered to be a central component of a recovery-oriented system. Despite the evidence suggesting the benefits of this change in the power relationship between users and practitioners, the method has not been widely implemented in clinical practice. OBJECTIVE: The objective of this study was to investigate decisional and information needs among users with mental illness as a prerequisite for the development of a decision support tool aimed at supporting SDM in community-based mental health services in Sweden. METHODS: Three semi-structured focus group interviews were conducted with 22 adult users with mental illness. The transcribed interviews were analyzed using a directed content analysis. This method was used to develop an in-depth understanding of the decisional process as well as to validate and conceptually extend Elwyn et al.'s model of SDM. RESULTS: The model Elwyn et al. have created for SDM in somatic care fits well for mental health services, both in terms of process and content. However, the results also suggest an extension of the model because decisions related to mental illness are often complex and involve a number of life domains. Issues related to social context and individual recovery point to the need for a preparation phase focused on establishing cooperation and mutual understanding as well as a clear follow-up phase that allows for feedback and adjustments to the decision-making process. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The current study contributes to a deeper understanding of decisional and information needs among users of community-based mental health services that may reduce barriers to participation in decision-making. The results also shed light on attitudinal, relationship-based, and cognitive factors that are important to consider in adapting SDM in the mental health system.