The Legitimacy of User Knowledge in Decision-Making Processes in Mental Health Care: An Analysis of Epistemic Injustice

Abstract

The experience-based knowledge of users is considered to provide vital input in shared decision making (SDM). However, mental health service users frequently express having negative experiences from meetings with providers, which are of an epistemic nature (e.g., being ignored or not regarded as credible). This study aimed to explore the barriers involved in legitimizing user knowledge in decision-making processes. Interview data from service users and providers were viewed from a theoretic framework of epistemic injustice. Abductive content analysis was conducted on data collected during a project to develop and implement SDM in mental health services. In describing obstacles to legitimize user knowledge, service users highlighted relational issues: being dependent, often dismissed and choosing to edit their testimonies. Service providers typically described workflow issues, users' insufficient decision-making competence and users' vulnerability to stress factors. The findings suggest that greater epistemic justice might be achieved by a SDM process in which the service user is engaged as a full partner in collaboration in various activities related to their care.

Co-creating a process of user involvement and shared decision-making in coordinated care planning with users and caregivers in social services

“…User participation has been described to include principles of respect for the knowledge of both the user and the caregivers, thus creating collaborative processes and personalized services (McLaughlin, 2009). User participation in social services challenges traditional paternalistic models of decisionmaking, where caregivers make decisions they believe lie in the best interests of the client (Grim et al, 2019).…”

Being Heard, Exerting Influence, or Knowing How to Play the Game? Expectations of Client Involvement among Social and Health Care Professionals and Clients

“…With this statement, the client seems to be referring to the traditional view according to which a “good patient” is passive and compliant, e.g., [ 68 ]. Thus, if a client wants to be a “good patient”—that is, to cooperate and play the game with its long-established rules [ 50 , 69 ]—they have no other option but to accept the professional’s decision. In this way, the client expresses doubt about their ability to genuinely have a say in the decisions made in social and health care encounters.…”

“… What are the views that are preceded and followed by explanations and accounts, which demonstrate a need to justify one’s views in front of the other participants (see e.g., [ 48 ])? Are some views received with explicit expressions of resistance and moral contempt or implicit expressions of opposition through, for example, silence [ 47 ] (p. 110); [ 49 ] (p. 172); [ 50 ]? What are these views substantially about?…”

“…Are some views received with explicit expressions of resistance and moral contempt or implicit expressions of opposition through, for example, silence [ 47 ] (p. 110); [ 49 ] (p. 172); [ 50 ]? What are these views substantially about?…”

What is “shared” in shared decision‐making? Philosophical perspectives, epistemic justice, and implications for health professions education

“…If EBM's epistemic ideal (favouring knowledge from population based studies and large scale clinical trials) represents a form of epistemic injustice, then an important question arises: what impact does this have on “shared” of SDM? The different ways of knowing (eg, patient narratives, knowledge derived from population based studies, practical experience) enter into and influence the SDM process, and ultimately impact the patient‐provider relationship. We contend that this phenomenon has been under‐recognized and under‐theorized, such that the meaning and value of the word “shared” within SDM remains opaque and in need of critical philosophical analysis.…”