User Involvement in the Field of Mental Health
UserInvolve: Development of sustainable practices for user involvement in the field of mental health
Research program for the development and implementation of user involvement.
UserInvolve (umu.se)
Funded by Forte from 2021 – 2027 Host institution: Umeå University Participating researcher: Katarina Grim
Epistemic (in)justice and barriers to knowledge integration: Development of a checklist and discussion framework for legitimizing user knowledge in the field of mental health
A project aiming to make research results accessible and contribute to the development of user involvement by addressing challenges identified in the field. A prior workshop-based study with representatives from the user movement explored obstacles and facilitating factors for integrating experiential knowledge into healthcare and support systems. The study, using a co-production design, identified three forms of epistemic injustice linked to insufficient integration: participant injustice, testimonial injustice, and interpretive injustice. Results were shared with workshop participants, who requested practical material based on these findings. This application aims to enhance accessibility and usability of these results for practical purposes.
Funded by Forte from 2022-2023 Host institution: Karlstad University Principal researcher: Katarina Grim
Do users' opinions make a difference? A study of new forms of user involvement in the field of mental health through the example of user auditing
A study aiming to develop knowledge about factors, structures, and strategies promoting systematic incorporation of user participation in social psychiatry. User involvement in mental health is highlighted in government inquiries as crucial for intervention development. This project examines user auditing, a practice review conducted by individuals with personal experience of mental health issues, as a strategy for user involvement in support and care development. The study focuses on identifying patterns in conducted user audits, analyzing implementation challenges, and investigating outcomes for quality development and user influence.
Supported by Forte from 2021 – 2023 Host institution: Umeå University Participating researcher: Katarina Grim
Shared Decision Making (SDM) in Coordinated Individual Planning (CIP) for individuals with mental disabilities and comorbidity
A study aiming to enhance continuity, user participation, and quality in care and support planning for individuals with long-term and complex needs in psychiatry, social psychiatry, and substance abuse. The project introduces Shared Decision Making (SDM) into Coordinated Individual Planning (CIP), a research-generated CIP process incorporating key components of SDM. The implementation is planned in the Southeast healthcare region, in collaboration with units in psychiatry, social psychiatry, and/or substance abuse.
A three-step project with the following objectives:
Step I: Investigate conditions for sustainable implementation of SDM in conjunction with coordinated individual care planning (CIP) through stakeholder analysis.
Step II: Design a shared vision, a tailored implementation plan, and clear outcome expectations in workshops with managers and staff.
Step III: Develop a methodological framework supporting future SDM implementation in psychiatric contexts based on their unique characteristics and conditions by following and evaluating the implementation process.
Funded by Forte and the Kamprad Foundation from 2021 – 2023 Host institutions: Umeå University and Stockholm University Principal researcher: Katarina Grim
User involvement during COVID-19: Experiences of user organizations in the field of mental health
A study aiming to increase knowledge about user involvement and the work of user organizations during crises, as well as to gather information guiding the development of user involvement in society post-pandemic.
Given the crucial role of user participation in sustainable healthcare and support systems, maintaining opportunities for people to engage in influential work during crises is vital. Social distancing during a pandemic results in social isolation and increased suffering among individuals with mental health issues. Simultaneously, new digital forms of meetings and participation are established. While some groups benefit from increased participation opportunities, such as those with travel difficulties, others are excluded due to limited computer access or literacy, exacerbating existing digital divides in society. Strengthening both the emerging connected communication culture and traditional forms of participation is therefore essential.
The goal of this study is to enhance knowledge about user involvement and the work of user organizations during crises, providing insights for the development of user involvement in society post-pandemic. The study examines how local user associations have been affected by the pandemic, aiming to identify adaptations made, challenges, and opportunities for knowledge contributing to the strengthening of user involvement post-pandemic.
Host institution: Umeå University Participating researcher: Katarina Grim
Challenges and opportunities in establishing user involvement - Legitimizing experiential knowledge as a resource in social psychiatry
User involvement is recognized as a central component in the development of recovery-oriented and evidence-based interventions in social psychiatry, emphasized in Swedish legislation and national guidelines. However, user participation in care planning and program development has not yet become an integrated or structural aspect of social services. The National Collaboration for Mental Health (NSPH), a collaborative organization for user organizations in the psychiatric field, has developed several initiatives focusing on systematically integrating user experiential knowledge at individual, organizational, and systemic levels. While these user-generated methods (e.g., recovery guides, Peer Support, user-led user audits) have been successfully implemented internationally and shown positive effects for users and services in Sweden, they have mostly operated as short-term projects and have not been sustainably implemented in the Swedish context. The lack of research on these projects, designed and led by the user movement, using methods supporting participation and shared decision-making in care and support planning and program development, has led to a lack of knowledge about the outcomes of these projects.
The purpose of this study was to develop knowledge about these initiatives and to examine factors, structures, and strategies that can promote systematic incorporation of user participation and influence in social psychiatry. The focus was on developing a research collaboration and a pilot study, examining ongoing projects. This study aimed to investigate success factors and barriers to the implementation of user knowledge-based methods, developing knowledge that could be used to explore conditions for creating a successful implementation program for user involvement and shared decision-making in the larger project.
Host institution: Umeå University Participating researcher: Katarina Grim
The implementation of a user movement-driven model for Peer Support in a Swedish context: the views and experiences of managers. A national implementation study examining how managers in psychiatry and social psychiatry services perceived the implementation of having a person employed in the service with experiential competence as a former user/patient. The study was funded by Umeå University and Lund University from 2016 - 2021.
Principal researcher: Katarina Grim.