Associate professor Katarina Grim from Karlstad University, together with postdoctoral fellow Anneli Gustafsson from Umeå University presented their ongoing six-year research project on sustainable service user involvement practices in mental health services in Sweden. After the keynote speech, PhD senior specialist Johanna Cresswell-Smith (THL) gave a comment speech.
Katarina Grim and Anneli Gustafsson: The “UserInvolve” research program
The six-year research program “UserInvolve” is a program that aims to develop sustainable service user involvement practices in mental health services in Sweden. The program and its underlying research projects focus on 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.
So, why research about user involvement? User involvement in research is emphasized at policy level and new strategies are being developed. However, knowledge about the practice of user involvement remains scarce. There is a growing trend in research to apply co-production strategies, but understanding how these work in practice is still a challenge.
Now, halfway through the research project, Katarina and Anneli summarize the work as follows. Co-production provides new insights, both practical and theoretical, and increases awareness of power relations. It enhances the legitimacy of the research, particularly among actors outside academia. However, co-production is time-consuming and person-sensitive, relying heavily on relationships. It can also challenge the integrity of researchers, requiring them to accept compromises and invite other expertise. The best move by UserInvolve has been to recruit experts by experience as colleagues in the research group. Furthermore, an interesting aspect is that some of the researchers themselves have experience with mental health issues and are open about this in the research contexts and in the communication with the service users.
In a comment speech, Johanna Cresswell-Smith from the Finnish Institute for Health and Welfare (THL) discussed experiences from Finland, highlighting the challenge of involving service users with more severe challenges in this type of research. There is a tendency for those who are relatively functional and active to participate, which raises the question: whose voices are we really hearing? She also embraces the messiness of co-creation, stating that "if it's not messy, you're not doing it right!"
In broad terms, the UserInvolve program aims to enhance the quality of mental health services by exploring ways to incorporate the opinions, values, and knowledge of service users into practice. The program is driven by motives such as promoting democratic participation, redistributing power, and adapting service systems accordingly. (Markström et al. 2023.)
More info:
Web page:
https://www.umu.se/forskning/grupper/userinvolve/
Facebook: https://www.facebook.com/UserInvolveResearch/
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Katarina Grim is associate professor in social work at Karlstad University, Sweden. Her research focuses on studying the conditions for user involvement in mental health services at individual and organizational levels. She is particularly interested in issues related to the legitimacy of service users as knowledgeable agents. In her research, she draws from her lived experiences of being a mental health service user.
Anneli Gustafsson is a program coordinator from the user organisation National Collaboration for Mental Health (NSPH) and a postdoctoral fellow in social work at Umeå University, Sweden.
Johanna Cresswell-Smith holds a PhD in Population Health and is a senior specialist at Finnish Institute for Health and Welfare (THL).