Speaking Truth to Power: Mental Health Service Users’ Experiences of Participation in their Diagnosis and Treatment

Abstract

In a qualitative study, long-term mental health service users shared their views on the concept of ‘participation’ as shaped by their personal histories of contact with mental health services in Ireland. Adopting a narrative methodology, the study participants were asked to draw on their experiences with mental health services to illustrate their general views on participation by service users in mental health care contexts.In this study, the research participants recounted positive experiences of participation in which their expressed views regarding their symptoms and treatment needs were incorporated into the service responses they received. The data revealed that service users perceived open and inclusive communication by service providers as an important factor in optimising their ability to participate in help-seeking, diagnosis and treatment plans. However, the study also illuminated the chilling effect on participation when service users’ views were not heeded or acknowledged by service providers. The findings highlight how the failure to include service users’ insights can negatively encroach on service user participation. The service user narratives collected in this study exposed the often uneasy juxtaposition of the service user’s personally held ‘truth’ regarding their lived experience of mental distress versus the powerful system of expert diagnosis and treatment. This article focuses on reporting selective findings from the study regarding participation in the contexts of help-seeking, diagnosis and treatment decisions.