ArticleSocial psychiatry and psychiatric epidemiology2020
How service users and carers understand, perceive, rephrase, and communicate about "depressive episode" and "schizophrenia" diagnoses: an international participatory research.
Article in Social psychiatry and psychiatric epidemiology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed, 28 citations in OpenAlex.
- Label matters: how labeling and diagnosis affect lay perception of people with depressive symptoms.Frontiers in psychiatry · 2025Article
- Participatory Action Research Among People With Serious Mental Illness: A Scoping Review.Qualitative health research · 2024Article
- Co-producing research on psychosis: a scoping review on barriers, facilitators and outcomes.International journal of mental health systems · 2023Article
- Thematic analysis of the raters' experiences administering scales to assess depression and suicide in Arab schizophrenia patients.BMC psychiatry · 2022Article
- Trans Expertise and the Revision and Translation of ICD-11: An Analysis of Available French Data from a Trans Perspective.International journal of environmental research and public health · 2022Article
- Online and Recovery-Oriented Support Groups Facilitated by Peer Support Workers in Times of COVID-19: Protocol for a Feasibility Pre-Post Study.JMIR research protocols · 2020Article
Corrections and comments
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Authors and funding
35 authors at 14 institutions in 12 countries.
Funding
Abstract
backgroundFor ICD-11, the WHO emphasized the clinical utility of communication and the need to involve service users and carers in the revision process.
aimsThe 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.
methodAn 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.
resultsMost participants reported understanding the diagnoses, but associated them with negative feelings. While the negativity of "depressive episode" mostly came from the concept itself, that of "schizophrenia" was largely based on its social impact and stigmatization associated with "mental illness". When rephrasing "depressive episode", a majority kept the root "depress*", and suppressed the temporal dimension or renamed it. Almost no one suggested a reformulation based on "schizophrenia". Finally, when communicating, no one used the phrase "depressive episode". Some participants used words based on "depress", but no one mentioned "episode". Very few used "schizophrenia".
conclusionData revealed a gap between concepts and emotional and cognitive experiences. Both professional and experiential language and knowledge have to be considered as complementary. Consequently, the ICD should be co-constructed by professionals, service users, and carers. It should take the emotional component of language, and the diversity of linguistic and cultural contexts, into account.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.