Legitimizing the knowledge of mental health service users in shared decision making : Promoting participation through a web-based decision support tool

Abstract: Aim: The overall aim of this thesis was to explore the manner in which user knowledge and user perspectives can be included and supported in shared decision making (SDM) in mental health services.The thesis consists of four studies. Study I explored what needs service users identify to participate in deliberative processes and decision making in their care. Study II examined how a decision support tool (DST) for SDM can be designed to enhance service users’ ability to have active and meaningful roles in SDM. Study III investigated barriers and facilitators associated with the implementation of a web-based DST designed to provide a concrete structure to support SDM. In study IV, a theoretical analysis was performed to elucidate the barriers associated with user knowledge being expressed and legitimized in decision-making processes.Methods: A key feature of the project involved a process of exploring decisional and informational needs and of developing, testing and implementing a DST for SDM. Qualitative data have been collected through focus group and individual interviews with service users and service providers, usability testing with service users and checklists.Findings: The findings show a number of characteristics specific to the mental health service context that need to be considered when developing support for SDM. Decisions were often complex and found to encompass a number of life domains. Issues related to social context and individual recovery highlighted the necessity to include the knowledge perspectives of service users throughout decision processes. In response, phases for preparation and follow-up was emphasized in the DST. The results indicate that supportive structures are required for service users to express their knowledge perspectives and for providers to include them in their decision-making. Moreover, existing barriers related to organizational structures and to power differentials need to be addressed.        Conclusions and implications: A DST specifically designed for the mental health context, that methodically invites service users to participate in each phase of the decision-making process might function as a guiding structure to validate service users as knowledgeable agents.