The actions of the World Health Organization Collaborating Center for Research and Training in Mental Health (WHOCC) encouraging user and carer participation in the development of the ICD-11
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In line with the recommendations of the WHO and its own values, the WHOCC involved users and carers in the revision of the ICD. This article describes the implementation of this participatory approach and illustrates how it contributed to a change in the conception of various diagnoses. À first action involved the depsychiatrization of trans identity through a change of terminology and by moving it to the new “sexual health” category, maintaining access to care while reducing stigmatization. À second action focused on the vocabulary used in the ICD. An international project centered on the diagnoses “depressive episode” and “schizophrenia” confirmed the stigmatizing character of the label “schizophrenia” and showed that the vocabulary used in the ICD is often misunderstood by users and carers. À reflection on the diagnosis of “schizophrenia” itself then followed. The WHOCC’s position was to go beyond a simple name change in order to deconstruct this highly stigmatizing concept whose scientific validity is hotly contested.
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