Accessibility, acceptability, and adequacy of schizophrenia definition according to experts by experience: an ICD-11 field study of patients and relative caregivers in Mexico

BackgroundSchizophrenia diagnosis is associated with special communication difficulties between clinicians, service users and caregivers, which may hinder the therapeutic alliance, treatment compliance, and rehabilitation. A clinically useful psychiatric nosology should improve communication between all final users.MethodsTo evaluate the accessibility (vs. difficulty), acceptability (vs. related negative feelings) and adequacy (i.e. correspondence with the patient’s experience) of the terms proposed for ICD-11 schizophrenia diagnostic guidelines, interviews were conducted with 15 persons with a schizophrenia diagnosis and 15 caregivers of individuals with schizophrenia.ResultsThe ICD-11 terms that were most accessible for service users and caregivers were those most commonly experienced by patients (such as delusions and hallucinations). However, many less frequent features were not understood by a high percentage of participants, and most terms had negative connotations for both service users and caregivers, including the label for the “schizophrenia” disorder. Specific suggestions of more neutral, colloquial terms were proposed by participants.DiscussionThe jargon in the current psychiatric classifications for schizophrenia has little heuristic value for service users and their caregivers in terms of accessibility or acceptability, highlighting the need for nosological systems’ co-development with experts by experience to change language that is confusing or unacceptable to them.