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

Volume: 55

Issue: 9

Year of Publication: 2020

Affiliated Institutions:  EPSM Lille-Métropole, French WHO CC, Armentières, France. jroelandt@epsm-lille-metropole.fr. EPSM Lille-Métropole, French WHO CC, Armentières, France. Centre Psychiatrique Universitaire Ibn Rochd, Casablanca, Morocco. Centre DAccueil Et de Soins Hospitaliers, Nanterre, France. Etablissement Hospitalo-Universitaire Spécialisé de Psychiatrie Mahfoud BOUCEBCI, Chéraga, Algérie. Centro di Psichiatria e Psicosomatica Azienda Ospedaliero, Universitaria di Cagliari, Cagliari, Italia. Primary Care Services Area, Central Health Directorate, Regione Friuli Venezia Giulia, Trieste, Italy. Mental Health Foundation, London, UK. Vilnius University, Vilnius, Lithuania. Safdarjung Hospital, New Delhi, India. Community Psychiatry Centre of Semmelweis, Awakenings Foundation, Budapest, Hungary. Department of Psychiatry, McGill University, WHO CC, Montreal, Canada. Ministère de la Santé, Nouakchott, Mauritanie. Fundación Pública Andaluza para la Integración Social de Personas con Enfermedad Mental (FAISEM), Seville, Spain. Centre de Recherche de l'Institut Universitaire en Santé Mentale de Montréal, Montréal, Canada. Ministère de la Santé Publique, Tananarive, Madagascar. Hôpital Hôtel de Dieu de France, Beyrouth, Lebanon. Instituto National de Psiquatria "Ramón de la Fuente Muñiz", Mexico, Mexico. Association for Regional Development and Mental Health (EPAPSY), Athens, Greece. Mental Health Europe, Bruxelles, Belgium. Department of Mental Health and Substance Abuse, World Mental Health Organization, Geneva, Switzerland.

Abstract summary 

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.

Authors & Co-authors:  Roelandt Jean-Luc JL Baleige Antoine A Koenig Marie M Demassiet Vincent V Agoub Mohamed M Barikova Victoria V Benmessaoud Dalila D Brunet Floriane F Carta Mauro-Giovanni MG Castelpietra Giulio G Crepaz-Keay David D Daumerie Nicolas N Fontaine Audrey A Grigutyte Neringa N Kishore Jugal J Kiss Marta M Laporta Marc M Layoussif Elkhansaa E Limane Youssouf Y Lopez Marcelino M Mura Gioia G Pelletier Jean-François JF Raharinivo Mbolatiana M Richa Sami S Robles-Garcia Rebecca R Stona Anne-Claire AC Skourteli Marina M Thévenon Catherine C Triantafyllou Michel M Vasilopoulos Fotis F Wooley Stéphanie S Reed Geoffrey G Guernut Mathilde M Saxena Shekhar S Askevis-Leherpeux Françoise F

Study Outcome 

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Statistics
Citations :  Reed GM, First MB, Kogan CS, Hyman SE, Gureje O, Gaebel W, et al. Innovations and changes in the ICD-11 classification of mental, behavioural and neurodevelopmental disorders. World Psychiatry. 2019;18(1):3–19. doi: 10.1002/wps.20611.
Authors :  35
Identifiers
Doi : 10.1007/s00127-020-01836-6
SSN : 1433-9285
Study Population
Male,Female
Mesh Terms
Caregivers
Other Terms
Carers;Clinical utility;Communication;International Classification of Diseases;Participatory research;Service users
Study Design
Study Approach
Country of Study
Publication Country
Germany