There is an emergent and promising field of research on schizophrenia prevention, yet little is known about the potential harm and risks inherent in identifying and labeling young people at risk. A study led by researchers at Columbia University Mailman School of Public Health and New York State Psychiatric Institute found that young people identified as at clinical risk for psychosis described feeling stigmatized by the symptoms that led them to seek help to a relatively stronger degree than the risk label, or the stigma of coming to a specialized clinic. The study is the first to address the separate effects of symptoms and labeling on stigma in young people identified as at clinical high risk for schizophrenia and related psychotic disorders. Findings are online in the journal Schizophrenia Research.
[Photo: Dr. Lawrence Yang]
“The clinical high-risk state is an incredibly important advance in psychiatry that enables identification of at-risk youth prior to development of full psychosis,” said Dr. Lawrence H. Yang, associate professor of epidemiology at Columbia and first author. “We were able to distinguish feelings of stigma due to attending a specialized high-risk clinic from the stigma of having symptoms and experiences. While the stigma of symptoms and experiences appear greater, the results indicate that both forms of stigma provide targets for intervention.”
Fewer than one in three young people identified as at-risk develop psychosis. The vast majority, therefore, either has residual symptoms or improves entirely. “Because there is the risk of having ‘false positives,’ it is especially important to demonstrate that stigma induced by the ‘at risk’ label appears less than that of symptoms,” said Dr. Yang. “But even for the true positives—those one in three that do develop psychosis—it is important to learn that the stigma of symptoms is a relatively stronger contributor to stigma, as such it is precisely the stigma that would be reduced by early intervention.”
The new paper reports the findings from a prospective cohort study at the New York State Psychiatric Institute at Columbia at the Center of Prevention and Evaluation, or COPE, a comprehensive program that offers treatment and resources to participants about early symptoms and risk of schizophrenia. Upon joining COPE through community identification in clinics and schools, young people were told that while they were at increased risk for psychosis as compared with the general population, it was likely that they would not develop psychosis. They were also told that if they did develop psychosis, they would receive immediate treatment, which tends to be effective. In this study, young people were asked about their stigma experiences on average about eleven months after they entered the COPE program.
Dr. Yang is also the principal investigator of a multi-site five-year project currently funded by the National Institutes of Health that is building upon the current study to understand stigma better in the clinical high risk state for psychosis. This project, which is being conducted at New York State Psychiatric Institute, Beth Israel Deaconess-Harvard Medical Center, and Maine Medical Center, will enable Dr. Yang to corroborate these initial findings, as well as to examine whether vulnerability to stigma is affected by social cognition, like recognizing others’ intents and emotions in their facial expressions and in what they say.
“Regarding labeling-related stigma, our findings indicate that similar to other psychiatric conditions—awareness of stereotypes was relatively high, and feelings of shame were significant,” noted Dr. Yang. “However, the fact that there were also positive emotions associated with identification — such as increased relief and understanding– and with coming to a specialized high-risk clinic indicates the beneficial effects of being identified as clinical high-risk.”
“This study confirms that the young people we identified as at risk for psychosis were more troubled by the symptoms they were having than by any label given to them,” said Dr. Cheryl Corcoran, senior author and Columbia assistant professor of clinical psychiatry and a research scientist at the New York State Psychiatric Institute. “We are also encouraged to learn how much these young people resist or disagree with pervasive negative stereotypes of psychosis or schizophrenia and that this relative lack of stigma associated with a risk label might mean that more young people will seek out the treatment and services they need. Our task then is to develop the best treatments we can to reduce the risk of psychosis, and make them widely available to the very teens and young adults who need them.”