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. 2020 Sep;55(9):1201-1213.
doi: 10.1007/s00127-020-01836-6. Epub 2020 Feb 22.

How service users and carers understand, perceive, rephrase, and communicate about "depressive episode" and "schizophrenia" diagnoses: an international participatory research

Jean-Luc Roelandt  1   2   3 , Antoine Baleige  4   5 , Marie Koenig  4   5 , Vincent Demassiet  4   5   6 , Mohamed Agoub  7 , Victoria Barikova  8 , Dalila Benmessaoud  9 , Floriane Brunet  4   5 , Mauro-Giovanni Carta  10 , Giulio Castelpietra  11 , David Crepaz-Keay  12 , Nicolas Daumerie  4   5 , Audrey Fontaine  4   5 , Neringa Grigutyte  13 , Jugal Kishore  14 , Marta Kiss  15 , Marc Laporta  16 , Elkhansaa Layoussif  7 , Youssouf Limane  17 , Marcelino Lopez  18 , Gioia Mura  10 , Jean-François Pelletier  19 , Mbolatiana Raharinivo  20 , Sami Richa  21 , Rebecca Robles-Garcia  22 , Anne-Claire Stona  4   5 , Marina Skourteli  23 , Catherine Thévenon  4 , Michel Triantafyllou  8 , Fotis Vasilopoulos  23 , Stéphanie Wooley  24 , Geoffrey Reed  25 , Mathilde Guernut  4   5 , Shekhar Saxena  25 , Françoise Askevis-Leherpeux  4   5   26
Affiliations

How service users and carers understand, perceive, rephrase, and communicate about "depressive episode" and "schizophrenia" diagnoses: an international participatory research

Jean-Luc Roelandt et al. Soc Psychiatry Psychiatr Epidemiol. 2020 Sep.

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.

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.

Results: 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".

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.

Keywords: Carers; Clinical utility; Communication; International Classification of Diseases; Participatory research; Service users.

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Conflict of interest statement

The authors declare that there are no conflicts of interest.

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