@article{ref1,
title="How service users and carers understand, perceive, rephrase, and communicate about "depressive episode" and "schizophrenia" diagnoses: an international participatory research",
journal="Social psychiatry and psychiatric epidemiology",
year="2020",
author="Roelandt, Jean-Luc and Baleige, Antoine and Koenig, Marie and Demassiet, Vincent and Agoub, Mohamed and Barikova, Victoria and Benmessaoud, Dalila and Brunet, Floriane and Carta, Mauro-Giovanni and Castelpietra, Giulio and Crepaz-Keay, David and Daumerie, Nicolas and Fontaine, Audrey and Grigutyte, Neringa and Kishore, Jugal and Kiss, Marta and Laporta, Marc and Layoussif, Elkhansaa and Limane, Youssouf and López, Marcelino and Mura, Gioia and Pelletier, Jean-François and Raharinivo, Mbolatiana and Richa, Sami and Robles-Garcia, Rebecca and Stona, Anne-Claire and Skourteli, Marina and Thévenon, Catherine and Triantafyllou, Michel and Vasilopoulos, Fotis and Wooley, Stéphanie and Reed, Geoffrey and Guernut, Mathilde and Saxena, Shekhar and Askevis-Leherpeux, Françoise",
volume="ePub",
number="ePub",
pages="ePub-ePub",
abstract="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. <br><br>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. <br><br>RESULTS: Most participants reported understanding the diagnoses, but associated them with negative feelings. While the negativity of &quot;depressive episode&quot; mostly came from the concept itself, that of &quot;schizophrenia&quot; was largely based on its social impact and stigmatization associated with &quot;mental illness&quot;. When rephrasing &quot;depressive episode&quot;, a majority kept the root &quot;depress*&quot;, and suppressed the temporal dimension or renamed it. Almost no one suggested a reformulation based on &quot;schizophrenia&quot;. Finally, when communicating, no one used the phrase &quot;depressive episode&quot;. Some participants used words based on &quot;depress&quot;, but no one mentioned &quot;episode&quot;. Very few used &quot;schizophrenia&quot;. <br><br>CONCLUSION: Data 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.<p /> <p>Language: en</p>",
language="en",
issn="0933-7954",
doi="10.1007/s00127-020-01836-6",
url="http://dx.doi.org/10.1007/s00127-020-01836-6"
}