Background For ICD-11, the WHO emphasized the clinical utility of communication and the need to involve service users and carers in the revision process. Aims The objective was to assess whether medical vocabulary was accessible, which kinds of feelings it activated, whether and how users and carers would like to rephrase terms, and whether they used diagnosis to talk about mental health experiences. Method An innovative protocol focused on two diagnoses (depressive episode and schizophrenia) was implemented in 15 different countries. The same issues were discussed with users and carers: understanding, feelings, rephrasing, and communication.
The present study was conducted in the framework of the wider international research of WHO for the revision of the ICD with regards to the understandability and relevance of the diagnostic terms of “schizophrenia”. Fifteen service users with a formal diagnosis of “schizophrenia” were recruited from an outpatient service in Athens, Greece. The results showed that most of the commonly encountered symptoms of the diagnosis were understood, but did not necessarily reflect with accuracy the lived experience of the participants. Preliminary correlations of the understandability and need for renaming with regards to socioeconomic factors emerged. Overall, the findings aim to initiate a dialogue on the understandability of diagnostic terms, the way they impact the lives of people with a diagnosis of schizophrenia, and possible ways of re-conceptualizing medical terminology with the active involvement of service users.
Purpose
The present study was conducted in the framework of the wider international research of WHO for the revision of the ICD with regards to the understandability and relevance of the diagnostic terms of “depressive episode”.
Methods
Fifteen service users with a formal diagnosis of “depressive episode” were recruited from an outpatient service in Athens, Greece, and completed a questionnaire on the understandability of the diagnostic terms of “depressive episode” during a semi-structured interview.
Results
The results showed that most of the commonly encountered symptoms of “depressive episode” were understood, but did not necessarily reflect with accuracy the lived experience of the participants. Preliminary correlations with regards to socioeconomic and other factors emerged.
Conclusion
Overall, the findings aim to initiate a dialogue on the understandability of diagnostic terms, the way they impact the lives of people with a diagnosis, and possible ways of re-conceptualizing medical terminology.
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