Subjective Evaluations of Research Participation by Persons With Mental Illness

Abstract

The present study focuses on the subjective experience of psychiatric patients who participate in psychobiological research, based on patients' self-reported evaluations of the experience. We studied 313 persons with mental illness admitted to an inpatient research unit. Each participant was administered the Patient Satisfaction Questionnaire, a structured self-report questionnaire designed to assess satisfaction with research participation and clinical care. Individuals who completed the research protocol were significantly more satisfied globally and more likely to express that treatment had been effective. Factors contributing to willingness to participate in future research included favorable perceptions of: (a) psychoeducation, (b) safety, and (c) comfort level with research procedures. Research participants were willing to participate in future research regardless of their perception of medication efficacy. This study emphasizes the importance of understanding the opinions of persons with mental illness who participate in research. Overall, the data suggest that persons with mental illness find psychiatric research to be beneficial. Although therapeutic misconception cannot be ruled out given the methodology used, at the very least the data indicate no sign that subjects found research participation to be harmful. Further studies should explore the source of this perception and attempt to separate the effect of "therapeutic misconception" from possible real benefit of protocol-driven assessment and treatment in a reputable clinical environment.