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.
Highlights
In the past few years we have seen increased attention paid to service users’ competence and role in contributing to decisions regarding their own care and support [1]
Research on Shared decision making (SDM) within a mental health context shows how the value placed on personal knowledge of service users often remains low [3] and that service users perceive that the extent to which their knowledge is considered in decision making is comparatively limited [2,3,4]
Some of the same issues noted by both groups were understood differently. When examining their comments from the framework of epistemic injustice, epistemic phenomena could be discerned to explain this discrepancy of perceptions regarding the premises for user knowledge to be expressed and validated in decision-making processes
Summary
In the past few years we have seen increased attention paid to service users’ competence and role in contributing to decisions regarding their own care and support [1]. Shared decision making (SDM) has been promoted as a practice to ensure that people receive care and support corresponding to individual circumstances and choices [1]. Research on SDM within a mental health context shows how the value placed on personal knowledge of service users often remains low [3] and that service users perceive that the extent to which their knowledge is considered in decision making is comparatively limited [2,3,4]. Individuals with mental health problems frequently express having negative experiences from meetings with service providers, which may conceived to be of an epistemic nature. They report instances of not being listened to, of not being taken seriously or of not being regarded as credible due to their psychiatric condition
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