Should schizophrenia be renamed? Patients' preferences and what anti-stigma campaigns may learn from the history of the term "Black" in the United States.
Abstract
Background
The diagnostic term schizophrenia is among the most stigmatizing labels in psychology and medicine. Public anti-stigma campaigns and efforts to replace the term with less pejorative terms have yielded mixed results. Importantly, patients' own preferences regarding diagnostic labels have been insufficiently explored.
Methods
In a cross-sectional online survey, 182 adults with a diagnosis of schizophrenia or schizoaffective disorder anonymously completed questionnaires assessing sociodemographic variables, psychopathology (CAPE), self-stigma, and were also asked if they would prefer a different term to "schizophrenia." Associations between label preference and clinical as well as psychosocial variables were examined using group comparisons and logistic regression.
Findings
A relative majority of participants preferred retaining the label "schizophrenia" (48.9%), followed by "psychosis" (23.6%; various terms containing psychosis: 37.9%). Overall, nearly three quarters endorsed either "schizophrenia" or a variant using "psychosis". Preference for retaining "schizophrenia" was associated with lower perceived stigma from others, less prior inpatient treatment on closed wards, lower self-esteem, and higher positive symptoms.
Limitations
The study relied on self-report data, was cross-sectional, and included only German-speaking participants, limiting generalizability. INTERPRETATIONS Most patients favored the established diagnostic terms "schizophrenia" and "psychosis" over novel alternatives. This raises the question of whether current efforts to destigmatize the disorder might instead focus on balanced scientific and media communication that highlights the possibility of positive outcomes. Interventions should address both public stigma and self-stigma, potentially drawing on lessons from the U.S. civil rights movement, which reclaimed the term "Black" and stripped it of its earlier negative connotations.