Background: There is a current lack of understanding surrounding severe mental illness. The stigma associated with the term schizophrenia, for example, often has a negative connotation in the general public. There is widespread disagreement regarding what should be an appropriate name for the illness. In order to increase understanding with the hopes of improving future research, treatment and diagnosis, a more accurate name change and scientific reclassification of the name schizophrenia is being proposed.
Methods: The Naming Project represents a partnership between researchers, clinicians and those with lived mental health experience, called the Consumer Advisory Board (CAB). Through collaborative efforts, the group developed a survey to assess opinions about the name schizophrenia as well as potential alternate names. These alternative names were derived from a combination of names being used across the world, a literature review of names proposed by researchers, and a name suggested by a CAB member. Both paper and online versions of the survey were developed to target groups of community stakeholders, including those with lived experience and the general public. The survey asks whether schizophrenia should be renamed, how stigmatizing the name is, ratings of 9 proposed alternate names, and a request for additional feedback including any other potential alternate names.
Results: We have collected 1,190 responses from a diverse group of stakeholders. Our findings show that a majority of respondents (74.1%) are in favor of a name change. Most (71.4%) find the name schizophrenia stigmatizing. Of the proposed alternate names, those with the most support included “Altered Perception Syndrome”, “Psychosis Spectrum Syndrome”, and “Neuro- Emotional Integration Disorder”.
Conclusions: Survey findings preliminarily suggest strong support for renaming schizophrenia. Respondents largely preferred alternative terms to schizophrenia. Most express hope that a name change will reduce stigma and discrimination, and better represent the characteristics of the condition.
Live Zoom Session – April 21st
Nicole Varca, BA, Courtney Spitzer, BA, Emma Parrish, BA, Victoria Hendel, BA, Linda Larson, Michael McDade, Christian Rosa-Baez, Nathan Schwirian, Charles Stromeyer IV, Michael Williams, Larry Seidman, MD, Matcheri Keshavan, MD, Raquelle Mesholam-Gately, PhD
Raquelle Mesholam-Gately, PhD