RT Journal Article
T1 How service users and carers understand, perceive, rephrase, and communicate about "depressive episode" and "schizophrenia" diagnoses: an international participatory research.
A1 Roelandt, Jean-Luc
A1 Baleige, Antoine
A1 Koenig, Marie
A1 Demassiet, Vincent
A1 Agoub, Mohamed
A1 Barikova, Victoria
A1 Benmessaoud, Dalila
A1 Brunet, Floriane
A1 Carta, Mauro-Giovanni
A1 Castelpietra, Giulio
A1 Crepaz-Keay, David
A1 Daumerie, Nicolas
A1 Fontaine, Audrey
A1 Grigutyte, Neringa
A1 Kishore, Jugal
A1 Kiss, Marta
A1 Laporta, Marc
A1 Layoussif, Elkhansaa
A1 Limane, Youssouf
A1 Lopez, Marcelino
A1 Mura, Gioia
A1 Pelletier, Jean-François
A1 Raharinivo, Mbolatiana
A1 Richa, Sami
A1 Robles-Garcia, Rebecca
A1 Stona, Anne-Claire
A1 Skourteli, Marina
A1 Thévenon, Catherine
A1 Triantafyllou, Michel
A1 Vasilopoulos, Fotis
A1 Wooley, Stéphanie
A1 Reed, Geoffrey
A1 Guernut, Mathilde
A1 Saxena, Shekhar
A1 Askevis-Leherpeux, Françoise
K1 Carers
K1 Clinical utility
K1 Communication
K1 International Classification of Diseases
K1 Participatory research
K1 Service users
AB For ICD-11, the WHO emphasized the clinical utility of communication and the need to involve service users and carers in the revision process. 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. 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. Most 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". 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.
YR 2020
FD 2020-02-22
LK http://hdl.handle.net/10668/15147
UL http://hdl.handle.net/10668/15147
LA en
DS RISalud
RD Apr 11, 2025