Mental Health System Historians: Adults with Schizophrenia Describe Changes in Community Mental Health Care Over Time

Abstract

This qualitative study examined changes in community mental health care as described by adults diagnosed with schizophrenia with long-term involvement in the mental health system to situate their experiences within the context of mental health reform movements in the United States. A sample of 14 adults with schizophrenia who had been consumers of mental health services from 12 to 40 years completed interviews about their hospital and outpatient experiences over time and factors that contributed most to their mental health. Overall, adults noted gradual changes in mental health care over time that included higher quality of care, more humane treatment, increased partnership with providers, shorter hospital stays, and better conditions in inpatient settings. Regardless of the mental health reform era in which they were hospitalized, participants described negative hospitalization experiences resulting in considerable personal distress, powerlessness, and trauma. Adults with less than 27 years involvement in the system reported relationships with friends and family as most important to their mental health, while adults with more than 27 years involvement reported mental health services and relationships with professionals as the most important factors in their mental health. The sample did not differ in self-reported use of services during their initial and most recent hospitalization experiences, but differences were found in participants’ reported use of outpatient services over time. Findings underscore the importance of the lived experience of adults with schizophrenia in grounding current discourse on mental health care reform.