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

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.

“Work WITH us”: a Delphi study about improving eating disorder treatment for autistic women with anorexia nervosa

“…Experts in the current study agreed that autistic women should be involved with the development and delivery of training for staff. This aligns with wider discussion of the importance of including stakeholders in the design of mental health services and systems [51], along with recognition that meaningful co-production can be challenging [52]. Training in co-production (a 'co-production curriculum') may support success [53].…”

Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise

“…“Epistemic injustice” is a form of systemic discrimination relating to the creation of knowledge ( 1 ). It occurs when people from marginalized groups are denied capacity as “epistemic agents” (i.e., as creators of knowledge), and are diminished or excluded from the process of creating meaning ( 2 ). Such exclusion creates conditions in which the lived experiences of marginalized people are primarily interpreted by people who do not share their social position ( 3 ).…”

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

“…As with the issue of SU involvement in mental health services, attempts to co-produce research can be challenged by practical circumstances, including unequally distributed resources, limitations in arenas for participation for involved actors, and risks for both tokenism and co-optation ( 18 ). Incorporating user knowledge is acknowledged as a vital element in enhancing the provision and quality advancement of mental health care and social support, both within Sweden and on a global scale ( 6 , 19 , 20 ). Recent research, however, suggests that although there is a positive discourse about involving SUs, there are still challenges when it comes to legitimizing user knowledge in practical application ( 8 ).…”

“…Including the voices and knowledge of the service user (hereafter abbreviated to SU) is core to the delivery and quality development of mental health services and is recognized as an essential component both in Sweden and internationally (1)(2)(3). In Sweden, Government commissions of inquiry have highlighted SU involvement as a prioritized concern (4, 5) and there is a growing emphasis on specific methods and interventions to increase SU involvement (6,7). However, involvement strategies are often implemented sporadically, and a lack of sustainable implementation has been highlighted (8).…”