auto-stigmatisation dans les troubles psychiques sévères et

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Auto-stigmatisation dans les troubles psychiques sévèreset persistantsJulien Dubreucq

To cite this version:Julien Dubreucq. Auto-stigmatisation dans les troubles psychiques sévères et persistants. Neuro-sciences. Université de Lyon, 2020. Français. �NNT : 2020LYSE1074�. �tel-03336583�

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N°d’ordre NNT : 2020LYSE1074

THESE de DOCTORAT DE L’UNIVERSITE DE LYON opérée au sein de

l’Université Claude Bernard Lyon 1

Ecole Doctorale N° 476

Neurosciences et Cognition

Spécialité de doctorat :

Discipline: Physiologie et biologie des organismes - populations - interactions

Soutenue publiquement le 07/05/2020, par :

Julien DUBREUCQ

Auto-stigmatisation dans les troubles psychiques sévères et persistants

Devant le jury composé de :

MASSOUBRE Catherine, PU-PH, Université St Etienne Présidente

LLORCA Pierre-Michel, PU-PH, Université Clermont Auvergne Rapporteur PACHOUD Bernard, PU-PH, Université Paris Sorbonne Rapporteur MASSOUBRE Catherine, PU-PH, Université St Etienne Examinatrice DEMILY Caroline, PU-PH, Université Lyon 1 Examinatrice D’AMATO Thierry, PU-PH, Université Lyon 1 Examinateur CELLARD Caroline, Professeure agrégée, Université Laval Québec Examinatrice FRANCK, Nicolas, PU-PH, Université Claude Bernard Lyon 1 Directeur de thèse

Résumé

L’auto-stigmatisation est fréquente chez les personnes avec Troubles Psychiques Sévères et

Persistants (TPSP), dont elle altère le devenir clinique et fonctionnel. L’objectif ce travail était de

définir plus précisément l’auto-stigmatisation dans les TPSP et de mieux identifier les moyens d’y

faire face. Il comporte plusieurs étapes : i) une 1ère revue systématique de littérature pour mieux

appréhender les mécanismes cognitifs et neurobiologiques potentiels sous-tendant les effets de la

stigmatisation; ii) une 2nde revue systématique de littérature sur la prévalence, les prédicteurs et les

conséquences de l’auto-stigmatisation dans les TPSP ; iii) l’étude de la fréquence de l’auto-

stigmatisation et de la résistance à la stigmatisation et des corrélats d’une auto-stigmatisation ou

d’une résistance élevée à la stigmatisation dans la cohorte nationale des centres référents de

réhabilitation psychosociale (REHABase), décrite dans un 1er article ; iv) l’adaptation française du

programme de thérapie cognitive et de renforcement narratif (NECT) et un essai randomisé contrôlé

évaluant son efficacité sur le fonctionnement social dans les TPSP, débutant au 1er trimestre 2020.

L’auto-stigmatisation est un problème majeur de santé publique, et ce quelque soit l’aire

géographique et culturelle, la pathologie ou le stade évolutif considérés. Environ 1/3 des

participants de la cohorte REHABase ont une auto-stigmatisation élevée, celle-ci étant associée aux

stades précoces du rétablissement et à un bien être et une satisfaction dans les relations sociales

altérés. La résistance à la stigmatisation concerne plus de 50% des participants et est favorisée par

la satisfaction dans les relations familiales. Ce travail a plusieurs implications cliniques et pour la

recherche, discutées de façon approfondie.

Mots-clés : auto-stigmatisation ; troubles psychiques sévères ; réhabilitation psychosociale ;

résistance à la stigmatisation ; rétablissement

Abstract

Self-stigma is highly prevalent in persons with Serious Mental Illness (SMI) and is associated with

poor patient’s outcomes. Our objectives were a better understanding of self-stigma and how to

reduce it trough improved clinical practice. This PhD dissertation has four steps : i) first, we

reviewed the potential cognitive and neurobiological mechanisms underlying stigma and self-

stigma ; ii) then we reviewed the prevalence, prédictors and correlates of self-stigma in SMI ; iii)

we assessed the frequency of self-stigma and stigma resistance in the French national network of

centres for psychiatric rehabilitation (REHABase), described in a previous article ; iv) we adapted

in French Narrative Enhancement and Cognitive Therapy (NECT) self-stigma reduction program

and initiated a stepped-wedge randomised control trial assessing its effectiveness in improving

social function in SMI. Self-stigma is a major public health issue, affecting people in all

geographical areas, all SMI conditions and all stages of the illness including at-risk states and early

disorders. Elevated self-stigma concerned roughly one third of the participants included in the

REHABase cohort. It was negatively associated with personal recovery, wellbeing and satisfaction

in interpersonal relationships. Elevated stigma resistance concerned more than 50% of the

participants and was positively associated with satisfaction in family relationships. The present

dissertation has several implications for research and clinical practice, discussed thoroughly.

Keywords : Self-stigma, Serious Mental Illness, Psychiatric rehabilitation ; Stigma resistance ;

Recovery

Remerciements

A M. le Professeur Nicolas Franck,

Merci infiniment de m’avoir fait l’honneur de diriger mon travail de thèse. Merci également pour ta

confiance, ta disponibilité, tes encouragements et ton soutien lors de ce travail. J’ai beaucoup

apprécié de travailler à ton contact, depuis maintenant plusieurs années. Trouve ici l’expression de

ma reconnaissance et de mon profond respect.

A M. le Professeur Pierre-Michel Lllorca,

Merci beaucoup d’avoir accepté d’être rapporteur de ce travail de thèse. Merci pour vos conseils,

votre soutien et de m’avoir fait bénéficier de votre expérience. J’ai beaucoup apprécié de travailler à

votre contact, depuis maintenant plusieurs années. Veuillez trouver ici le témoignage de ma

gratitude et de mon profond respect.

A M. le Professeur Bernard Pachoud,

Merci beaucoup d’avoir accepté d’être rapporteur de ce travail de thèse. J’ai beaucoup apprécié nos

échanges autour de l’emploi accompagné, de la réhabilitation psychosociale et du rétablissement.

Trouve ici le témoignage de ma gratitude et de mon profond respect.

A Mme le Professeur Catherine Massoubre

Merci beaucoup d’avoir accepté de juger cette thèse. J’ai beaucoup apprécié de travailler à ton

contact et à celui de l’équipe de RehaCoor 42, depuis maintenant plusieurs années. Merci également

pour ta disponibilité, ton soutien et tes encouragements. Trouve ici l’expression de ma

reconnaissance et de mon profond respect.

A Mme le Professeur Caroline Demily

Merci beaucoup d’avoir accepté de juger cette thèse. Merci également pour tes conseils, ton soutien

et tes encouragements lors des comités de suivi de thèse. J’ai beaucoup apprécié nos échanges et

collaborations autour de la réhabilitation psychosociale, du rétablissement et de l’autisme. Trouve

ici l’expression de ma reconnaissance et de mon profond respect.

A M le Professeur Thierry D’Amato

Merci beaucoup d’avoir accepté de juger cette thèse. J’ai beaucoup apprécié de travailler à ton

contact, depuis maintenant plusieurs années, au sein des centres experts et autour des programmes

RemedRugby et ProFamille. Trouve ici l’expression de ma gratitude et de mon profond respect.

A Mme le Professeur Caroline Cellard

Merci beaucoup d’avoir accepté de juger cette thèse. Ce fut un plaisir de te rencontrer, d’échanger

autour de la réhabilitation psychosociale, de la pair-aidance et du rétablissement, et de pouvoir

collaborer à l’ouvrage « pair aidance en santé mentale » que tu coordonnes avec Nicolas. Trouve

ici l’expression de ma gratitude et de mon profond respect.

Merci aussi mille fois au Dr Isabelle Amado et au Pr Mircea Polosan pour leurs conseils, leur

soutien et leurs encouragements lors des comités de suivi de thèse.

Merci infiniment au Dr Elisabeth Giraud Baro pour sa confiance, ses conseils, son soutien et ses

encouragements depuis le début de mon parcours en réhabilitation psychosociale. Merci aussi au Dr

Patrice Baro pour ses conseils et ses encouragements.

Merci infiniment à toute l’équipe du C3R, des Centres Experts Schizophrénie et Asperger et du

Réseau Handicap Psychique, avec qui j’ai le plaisir de travailler depuis maintenant plusieurs

années. Merci plus particulièrement à Franck, Julien, Mégane, Marie, Patricia, Anne, Thomas,

Thierry, Fanny pour tout le travail autour de RemedRugby, NECT et tous les projets que nous

avons conduits ensemble et sur lesquels nous travaillons au quotidien.

Merci beaucoup à l’équipe du CRR, et plus particulièrement à Julien Plasse pour les analyses

statistiques et à Floriane Todoroff pour l’organisation de la journée de formation NECT avec Philip

Yanos

Merci aux médecins responsables et aux équipes des centres participant au réseau national des

Centres Référents de Réhabilitation psychosociale et de Remédiation cognitive ou au réseau

national des Centres Experts Schizophrénie et Asperger. Merci plus particulièrement aux docteurs

Céline Roussel, Isabelle Chéreau, Motassem Bakri, Emilie Legros Lafarge, Lucia Fiegl, Romain

Rey, Romain Pommier, Nathalie Guillard-Bouhet, Clélia Quiles, Hélène Richard-Lepouriel pour

nos collaborations autour de RemedRugby, NECT et de plusieurs autres projets. Merci aussi aux

professeurs Fabrice Berna, Franck Schurhoff et Marion Leboyer pour leur confiance et les projets

mis en œuvre au sein du réseau des Centres Experts.

Liste des publications

Articles en rapport avec le travail de thèse

- Articles originaux :

-Dubreucq J, Plasse J, Gabayet F, Faraldo M, Blanc O, Chereau I, Cervello S, Couhet G, Demily C, Guillard-Bouhet N, Gouache B, Jaafari N, Legrand G, Legros-Lafarge E, Pommier R, Quilès C, Straub D, Verdoux H, Vignaga F, Massoubre C, REHABAse network* and Franck N. Self-stigma in Serious Mental Illness and Autism Spectrum Disorder: results from the REHABase national psychiatric rehabilitation cohort. Eur Psychiatry. https://doi.org/10.1192/j.eurpsy.2019.12

-Dubreucq J, Plasse J, Gabayet F, Faraldo M, Blanc O, Chereau I, Cervello S, Couhet G, Demily C, Guillard-Bouhet N, Gouache B, Jaafari N, Legrand G, Legros-Lafarge E, Pommier R, Quilès C, Straub D, Verdoux H, Vignaga F, Massoubre C, REHABAse network* and Franck N. Stigma Resistance in Serious Mental Illness and Autism Spectrum Disorder: results from the RehaBASE national psychiatric rehabilitation cohort. Soc Psychiatry Psychiatr Epidemiol. In

review -Dubreucq J, Faraldo M, Abbes M, Ycart B, Richard-Lepouriel H, Favre S, Jermann F,

Attal J, Bakri M, Cohen T, Cervello C, Chereau I, Cognard C, De Clercq M, Douasbin A, Giordana, JY, Giraud-Baro E, Guillard-Bouhet N, Legros-Lafarge E, Martin B, Polosan M, PouchonA, Rolland M, Rainteauk N, Roussel C, Wangermez C, Yanos PT, Lysaker PH, Franck N. Narrative Enhancement and Cognitive Therapy (NECT) and social function in Serious Mental Illness: study protocol for a stepped-wedge randomized controlled trial. Trials. Revised

-Franck N, Bon L, Dekerle M, Plasse J, Massoubre C, Pommier R, Legros-Lafarge E, Jaafari N, Guillard-Bouhet N, Quilès C, Couhet G, Verdoux H, Gouache B, Martin B, Cervello S, Demily C, Dubreucq J. Satisfaction and Needs in Serious Mental Illness and Autism Spectrum Disorder: The REHABase Psychosocial Rehabilitation Project. Psychiatr Serv. 2019 Apr 1;70(4):316-323. - Revues de littérature :

-Dubreucq J, Franck N. Neural and cognitive correlates of stigma and social rejection in individuals with Serious Mental Illness (SMI): A systematic review of the literature. Psychiatry Res. 2019 Apr; 274:146-158. doi: 10.1016/j.psychres.2019.02.023.

-Dubreucq J, Franck N. Internalized Stigma in Serious Mental Illness (SMI): a systematic review of prevalence, predictors and correlates. J affect disord. Revised Autres articles

-Dubreucq J, Ycart B, Gabayet F, et al., FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Towards an improved access to psychiatric rehabilitation: availability and effectiveness at 1-year follow-up of psychoeducation, cognitive remediation therapy, cognitive behaviour therapy and social skills training in the FondaMental Advanced Centers of Expertise-Schizophrenia (FACE-SZ) national cohort. Eur Arch Psychiatry Clin Neurosci. 2019 - Dubreucq J, Gabayet F, Ycart B, Faraldo M, Melis F, Lucas T, Arnaud B, Bacconnier M, Bakri M, Cambier G, Carmona F, Chereau I, Challe T, Pires S, Roussel C, Lamy P, Legrand G, Pages E, Pommier R, Rey R, Souchet Y, the RemedRugby group*, Llorca PM and Massoubre C. Improving social function with ecological social-cognitive remediation in SZ: results from the RemedRugby controlled trial. Eur Psychiatry. In review

Dubreucq J., Delorme C., Roure R. Metacognitive therapy focused on psychosocial function in psychosis. J Contemp Psychother 2016; 46: 197. doi: 10.1007/s10879-016-9334-7

-Dubreucq M, Jourdan S, Poizat A, Dubreucq J. Midwives' feelings about the post-partum care of women with severe mental illness: A qualitative analysis. Encephale. 2019 Sep 12.pii: S0013-7006(19)30243-X.

-Brunet-Gouet E, Urbach M, Ramos V, Ehrminger M, Aouizerate B, Brunel L, Capdevielle D, Chereau I, Dubertret C, Dubreucq J, Fond G, Lançon C, Leignier S, Mallet J, Misdrahi D, Pires S, Schneider P, Schürhoff F, Yazbek H, Zinetti-Bertschy A, Bazin N, Passerieux C, Roux P. Assessing metacognitive and help-seeking strategies in schizophrenia: design and psychometric validation of the Versailles Metacognitive Strategies Evaluation Questionnaire . Clin Rehabil. 2019 Dec 4:269215519888784

-Brunet-Gouet E, Myszkowski N, Ehrminger M, Urbach M, Aouizerate B, Brunel L, Capdevielle D, Chereau I, Dubertret C, Dubreucq J, Fond G, Lançon C, Leignier S, Mallet J, Misdrahi D, Pires S, Schneider P, Schurhoff F, Yazbek H, Zinetti-Bertschy A, Bazin N, Passerieux C, Zenasni F, Roux P. Confirmation of a Two-Factor Solution to the Questionnaire of Cognitive and Affective Empathy in a French Population of Patients With Schizophrenia Spectrum Disorders.Front Psychiatry. 2019 Oct 25;10:751.

-Verdoux H, Quiles C, Cervello S, Dubreucq J, et al. Functioning and cognitive characteristics of clozapine users referred to psychosocial rehabilitation centers: A REHABase cohort study. Psychiatry Res. 2019 Nov; 281:112543.

-Favrod J, Nguyen A, Tronche AM, Blanc O, Dubreucq J, Chereau-Boudet I, Capdevielle D, Llorca PM. Impact of Positive Emotion Regulation Training on Negative Symptoms and Social Functioning in Schizophrenia: A Field Test. Front Psychiatry. 2019 Jul 26; 10:532.

- Fond G, Godin O, Dumontaud M, Faget C, Schürhoff F, Berna F, Aouizerate B, Capdevielle D, Chereau I, D'Amato T, Dubertret C, Dubreucq J, Leignier S, Mallet J, Misdrahi D, Passerieux C, Rey R, Schandrin A, Szoke A, Urbach M, Vidailhet P, Leboyer M, Lançon C, Boyer L, Llorca PM; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Sexual dysfunctions are associated with major depression, chronic inflammation and anticholinergic consumption in the real-world schizophrenia FACE-SZ national cohort. Prog Neuropsychopharmacol Biol Psychiatry. 2019 Aug 30; 94:109654.

- Pignon B, Lajnef M, Godin O, Geoffray MM, Rey R, Mallet J, Dubertret C, Roux P, Passerieux C, Marulaz L, Brunel L, Dubreucq J, Leignier S, Capdevielle D, André M, Aouizerate B, Misdrahi D, Berna F, Vidailhet P, Chereau I, Llorca PM, Fond G, Lançon C, Leboyer M, Schürhoff F; FondaMental Academic Centers of Expertise for Schizophrenia (FACE-SZ) collaborators. Relationship between childhood trauma and level of insight in schizophrenia: A path-analysis in the national FACE-SZ dataset. Schizophr Res. 2019; pii: S0920-9964(19)30129-X

-Misdrahi D, Tessier A, Daubigney A, Meissner WG, Schurhoff F, Boyer L, Godin O, Bulzacka E, Aouizerate B, Andrianarisoa M, Berna F, Capdevielle D, Chereau-Boudet I, D'Amato T, Dubertret C, Dubreucq J, Faget-Agius C, Lançon C, Mallet J, Passerieux C, Rey R, Schandrin A, Urbach M, Vidailhet P, Llorca PM, Fond G; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) Group. Prevalence of and Risk Factors for Extrapyramidal Side Effects of Antipsychotics: Results From the National FACE-SZ Cohort. J Clin Psychiatry. 2019; 80(1).

-Godin O, Fond G, Bulzacka E, Schürhoff F, Boyer L, Myrtille A, Andrianarisoa M, Aouizerate B, Berna F, Capdevielle D, Chereau I, Dorey JM, Dubertret C, Dubreucq J, Faget C, Lancon C, Leignier S, Mallet J, Misdrahi D, Passerieux C, Rey R, Roux P, Vidailhet P, Costagliola D; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group, Leboyer M, Llorca PM. Validation and refinement of the clinical staging model in a French cohort of outpatient with schizophrenia (FACE-SZ). Prog Neuropsychopharmacol Biol Psychiatry. 2019; 92:226-234.

Fond G, Bulzacka E, Boucekine M, Schürhoff F, Berna F, Godin O, Aouizerate B, Capdevielle D, Chereau I, D'Amato T, Dubertret C, Dubreucq J, Faget C, Leignier S, Lançon C, Mallet J, Misdrahi D, Passerieux C, Rey R, Schandrin A, Urbach M, Vidailhet P, Leboyer M; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group, Boyer L, Llorca PM. Machine learning for predicting psychotic relapse at 2 years in schizophrenia in the national FACE-SZ cohort. Prog Neuropsychopharmacol Biol Psychiatry. 2019 Jun 8;92:8-18.

-Roux P, Urbach M, Fonteneau S, Berna F, Brunel L, Capdevielle D, Chereau I, Dubreucq

J, Faget-Agius C, Fond G, Leignier S, Perier CC, Richieri R, Schneider P, Schürhoff F, Tronche AM, Yazbek H, Zinetti-Bertschy A; FondaMental Advanced Centers of Expertise in Schizophrenia (FACE-SCZ) Collaborators, Passerieux C, Brunet-Gouet E. Screening for cognitive deficits with the Evaluation of Cognitive Processes involved in Disability in Schizophrenia scale. Clin Rehabil. 2019 Jan;33(1):113-119.

-Fond G, Godin O, Schürhoff F, Berna F, Aouizerate B, Capdevielle D, Chereau I, D'Amato T, Dubertret C, Dubreucq J, Faget C, Leignier S, Lançon C, Mallet J, Marulaz L, Misdrahi D, Passerieux C, Rey R, Schandrin A, Urbach M, Vidailhet P, Leboyer M; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group, Boyer L, Llorca PM. Inflammatory DEpression Advances in Schizophrenia (IDEAS): A precision medicine approach of the national FACE-SZ cohort. J Affect Disord. 2019 Feb 15;245:468-474.

-Schürhoff F, Fond G, Berna F, Bulzacka E, Godin O, Boyer L, Misdrahi D, Andrianarisoa M, Brunel L, Coulon N, Aouizerate B, Capdevielle D, Chereau I, D'Amato T, Dubertret C, Dubreucq J, Faget C, Gabayet F, Mallet J, Rey R, Lancon C, Passerieux C, Schandrin A, Urbach M, Vidailhet P, Leboyer M, Llorca PM; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. The 10-year findings from the FondaMental Academic Center of Expertise for Schizophrenia (FACE-SZ): Review and recommendations for clinical practice. Encephale. 2019 Feb;45(1):9-14. doi

-Schandrin A, Norton J, Raffard S, Aouizerate B, Berna F, Brunel L, Chereau-Boudet I, D'Amato T, Denizot H, Dubertret C, Dubreucq J, Faget C, Fond G, Gabayet F, Llorca PM, Mallet J, Misdrahi D, Passerieux C, Rey R, Schurhoff F, Urbach M, Bonnet S, Capdevielle D; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. A multi-dimensional approach to the relationship between insight and aggressiveness in schizophrenia: Findings from the FACE-SZ cohort. Schizophr Res. 2019 Feb;204:38-45

-Schandrin A, Norton J, Raffard S, Aouizerate B, Berna F, Brunel L, Chereau-Boudet I, D'Amato T, Denizot H, Dubertret C, Dubreucq J, Faget C, Fond G, Gabayet F, Llorca PM, Mallet J, Misdrahi D, Passerieux C, Rey R, Schurhoff F, Urbach M, Bonnet S, Capdevielle D; FACE-SZ group. A multi-dimensional approach to the relationship between insight and aggressiveness in schizophrenia: Findings from the FACE-SZ cohort. Schizophr Res. 2019 Feb;204:38-45.

-Fond G, Godin O, Boyer L, Berna F, Andrianarisoa M, Coulon N, Brunel L, Bulzacka E, Aouizerate B, Capdevielle D, Chereau I, D'Amato T, Dubertret C, Dubreucq J, Faget C, Leignier S, Lançon C, Mallet J, Misdrahi D, Passerieux C, Rey R, Schandrin A, Urbach M, Vidailhet P, Llorca PM, Schürhoff F, Leboyer M; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) Group. Chronic low-grade peripheral inflammation is associated with ultra resistant schizophrenia. Results from the FACE-SZ cohort. Eur Arch Psychiatry Clin Neurosci. 2019 Dec;269(8):985-992.

-Godin O, Leboyer M, Schürhoff F, Llorca PM, Boyer L, Andre M, Andrianarisoa M, Aouizerate B, Berna F, Capdevielle D, Chereau I, Dorey JM, Dubertret C, Dubreucq J, Faget C, Lancon C, Leignier S, Mallet J, Misdrahi D, Passerieux C, Rey R, Roux P, Vidailhet P, Costagliola D, Fond G; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) Group. Metabolic Syndrome and Illness Severity Predict Relapse at 1-Year Follow-Up in Schizophrenia: The FACE-SZ Cohort. J Clin Psychiatry. 2018 Sep 18;79(6). pii: 17m12007.

Roux P, Urbach M, Fonteneau S, Berna F, Brunel L, Capdevielle D, Chereau I, Dubreucq

J, Faget-Agius C, Fond G, Leignier S, Perier CC, Richieri R, Schneider P, Schürhoff F, Tronche AM, Yazbek H, Zinetti-Bertschy A; FondaMental Advanced Centers of Expertise in Schizophrenia (FACE-SCZ) Collaborators, Passerieux C, Brunet-Gouet E. Psychiatric disability as mediator of the neurocognition-functioning link in schizophrenia spectrum disorders: SEM analysis using the Evaluation of Cognitive Processes involved in Disability in Schizophrenia (ECPDS) scale. Schizophr Res. 2018 Nov;201:196-203.

-Fond G, Boyer L, Berna F, Godin O, Bulzacka E, Andrianarisoa M, Brunel L, Aouizerate B, Capdevielle D, Chereau I, Coulon N, D'Amato T, Dubertret C, Dubreucq J, Faget C, Leignier S, Lançon C, Mallet J, Misdrahi D, Passerieux C, Rey R, Schandrin A, Urbach M, Vidailhet P, Leboyer M, Schürhoff F, Llorca PM; FACE-SZ group. Remission of depression in patients with schizophrenia and comorbid major depressive disorder: results from the FACE-SZ cohort . Br J Psychiatry. 2018 Aug;213(2):464-470.

-Fond G, Boyer L, Schürhoff F, Berna F, Godin O, Bulzacka E, Andrianarisoa M, Brunel L, Aouizerate B, Capdevielle D, Chereau I, Coulon N, D'Amato T, Dubertret C, Dubreucq J, Faget C, Lançon C, Leignier S, Mallet J, Misdrahi D, Passerieux C, Rey R, Schandrin A, Urbach M, Vidailhet P, Llorca PM, Leboyer M; FACE-SZ group, Andrianarisoa M, Aouizerate B, Bazin N, Berna F, Blanc O, Brunel L, Bulzacka E, Capdevielle D, Chereau-Boudet I, Chesnoy-Servanin G, Coulon N, Danion JM, D'Amato T, Deloge A, Denizot H, Dorey JM, Dubertret C, Dubreucq J, Faget C, Fluttaz C, Fond G, Fonteneau S, Gabayet F, Giraud-Baro E, Jarroir M, Leignier S, Lacelle D, Lançon C, Laouamri H, Leboyer M, Le Gloahec T, Le Strat Y, Llorca PM, Mallet J, Metairie E, Misdrahi D, Offerlin-Meyer I, Passerieux C, Peri P, Pires S, Portalier C, Ramet L, Rey R, Roman C, Schandrin A, Schürhoff F, Tessier A, Tronche AM, Urbach M, Vaillant F, Vehier A, Vidailhet P, Vilà E, Yazbek H, Zinetti-Bertschy A. Latent toxoplasma infection in real-world schizophrenia: Results from the national FACE-SZ cohort. Schizophr Res. 2018 Nov; 201:373-380.

-Roux P, Misdrahi D, Capdevielle D, Aouizerate B, Berna F, Brunel L, Chereau I, Dorey JM, Dubertret C, Dubreucq J, Faget-Agius C, Fonteneau S, Gabayet F, Llorca PM, Mallet J, Rey R, Richieri R, Schandrin A, Schürhoff F, Tessier A, Vidailhet P, Passerieux C, Urbach M; FACE-SZ Group. Mediation Analyses of Insight, Quality of Life, Depression, and Suicidality: Results From the FACE-SZ Cohort. J Clin Psychiatry. 2018 May/Jun;79(3). pii: 17m11638.

-Fond G, Boyer L, Andrianarisoa M, Godin O, Bulzacka E, Berna F, Brunel L, Coulon N, Aouizerate B, Capdevielle D, Chereau I, D'amato T, Denizot H, Dubertret C, Dubreucq J, Faget C, Leignier S, Mallet J, Misdrahi D, Rey R, Lancon C, Passerieux C, Schandrin A, Urbach M, Vidailhet P, Leboyer M, Schurhoff F, Llorca PM; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Self-reported pain in patients with schizophrenia. Results from the national first-step FACE-SZ cohort. Prog Neuropsychopharmacol Biol Psychiatry 2018 Jul 13;85:62-68.

-Mallet J, Le Strat Y, Schürhoff F, Mazer N, Portalier C, Andrianarisoa M, Aouizerate B, Berna F, Brunel L, Capdevielle D, Chereau I, D'Amato T, Dubreucq J, Faget C, Gabayet F, Honciuc RM, Lançon C, Llorca PM, Misdrahi D, Rey R, Roux P, Schandrin A, Urbach M, Vidailhet P, Fond G, Dubertret C; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Tobacco smoking is associated with antipsychotic medication, physical aggressiveness, and alcohol use disorder in schizophrenia: results from the FACE-SZ national cohort. Eur Arch Psychiatry Clin Neurosci. 2019 Jun; 269(4):449-457.

-Laidi C, Prigent A, Plas A, Leboyer M, Fond G, Chevreul K; FACE-SCZ Group. Factors associated with direct health care costs in schizophrenia: Results from the FACE-SZ French dataset. Eur Neuropsychopharmacol. 2018; 28(1): 24-36

-Fond G, Resseguier N, Schürhoff F, Godin O, Andrianarisoa M, Brunel L, Bulzacka E, Aouizerate B, Berna F, Capdevielle D, Chereau I, D'Amato T, Dubertret C, Dubreucq J, Faget C, Gabayet F, Lançon C, Llorca PM, Mallet J, Misdrahi D, Passerieux C, Rey R, Schandrin A, Urbach

M, Vidailhet P, Boyer L, Leboyer M; FACE-SZ group. Relationships between low-grade peripheral inflammation and psychotropic drugs in schizophrenia: results from the national FACE-SZ cohort. Eur Arch Psychiatry Clin Neurosci. 2018 Sep; 268(6):541-553.

-Fond G, Boyer L, Leboyer M, Godin O, Llorca PM, Andrianarisoa M, Berna F, Brunel L, Aouizerate B, Capdevielle D, Chereau I, D'Amato T, Dubertret C, Dubreucq J, Faget C, Gabayet F, Mallet J, Misdrahi D, Rey R, Lancon C, Passerieux C, Roux P, Vidailhet P, Yazbek H, Schürhoff F, Bulzacka E; FACE-SZ group. Influence of Venus and Mars in the cognitive sky of schizophrenia. Results from the first-step national FACE-SZ cohort. Schizophr Res. 2018 May; 195:357-365.

-Fond G, Boyer L, Andrianarisoa M, Godin O, Brunel L, Bulzacka E, Coulon N, Llorca PM, Berna F, Aouizerate B, Capdevielle D, D'Amato T, Dubertret C, Dubreucq J, Faget C, Gabayet F, Mallet J, Misdrahi D, Rey R, Richieri R, Roux P, Passerieux C, Schandrin A, Tronche AM, Vidailhet P, Leboyer M, Schürhoff F; FACE-SZ group. Risk factors for increased duration of untreated psychosis. Results from the FACE-SZ dataset. Schizophr Res 2018 May; 195:529-533.

-Fond G, Berna F, Boyer L, Godin O, Brunel L, Andrianarisoa M, Aouizerate B, Capdevielle D, Chereau I, Danion JM, Dubertret C, Dubreucq J, Faget C, Gabayet F, Le Gloahec T, Llorca PM, Mallet J, Misdrahi D, Rey R, Richieri R, Passerieux C, Portalier C, Roux P, Vehier A, Yazbek H, Schürhoff F, Bulzacka E; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Benzodiazepine long-term administration is associated with impaired attention/working memory in schizophrenia: results from the national multicentre FACE-SZ data set. Eur Arch Psychiatry Clin Neurosci. 2018; 268(1):17-26

-Fond G, Godin O, Schürhoff F, Berna F, Bulzacka E, Andrianarisoa M, Brunel L, Aouizerate B, Capdevielle D, Chereau I, Coulon N, D'Amato T, Dubertret C, Dubreucq J, Faget C, Lançon C, Leignier S, Mallet J, Misdrahi D, Passerieux C, Rey R, Schandrin A, Urbach M, Vidailhet P, Leboyer M, Boyer L, Llorca PM; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Hypovitaminosis D is associated with depression and anxiety in schizophrenia: Results from the national FACE-SZ cohort. Psychiatry Res. 2018 Dec;270:104-110.

-Andrianarisoa M, Boyer L, Godin O, Brunel L, Bulzacka E, Aouizerate B, Berna F, Capdevielle D, Dorey JM, Dubertret C, Dubreucq J, Faget C, Gabayet F, Llorca PM, Mallet J, Misdrahi D, Rey R, Richieri R, Passerieux C, Schandrin A, Tronche AM, Urbach M, Vidailhet P, Schürhoff F, Fond G; FACE-SCZ Group. Childhood trauma, depression and negative symptoms are independently associated with impaired quality of life in schizophrenia. Results from the national FACE-SZ cohort. Schizophr Res. 2017; 185:173-181.

-Fond G, Boyer L, Boucekine M, Aden LA, Schürhoff F, Tessier A, Andrianarisoa M, Berna F, Brunel L, Capdevielle D, Chereau I, Mallet J, Denizot H, Dorey JM, Dubertret C, Dubreucq J, Faget C, Gabayet F, Rey R, Richieri R, Passerieux C, Schandrin A, Urbach M, Vidailhet P, Llorca PM, Misdrahi D; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Validation study of the Medication Adherence Rating Scale. Results from the FACE-SZ national dataset. Schizophr Res. 2017; 182:84-89

-Fond G, Berna F, Andrianarisoa M, Godin O, Leboyer M, Brunel L, Aouizerate B, Capdevielle D, Chereau I, D'Amato T, Denizot H, Dubertret C, Dubreucq J, Faget C, Gabayet F, Llorca PM, Mallet J, Misdrahi D, Passerieux C, Richieri R, Rey R, Schandrin A, Urbach M, Vidailhet P, Boyer L, Schürhoff F; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Chronic low-grade peripheral inflammation is associated with severe nicotine dependence in schizophrenia: results from the national multicentric FACE-SZ cohort. Eur Arch Psychiatry Clin Neurosci. 2017; 267(5): 465-472

-Godin O, Leboyer M, Schürhoff F, Boyer L, Andrianarisoa M, Brunel L, Bulzacka E, Aouizerate B, Berna F, Capdevielle D, D'Amato T, Denizot H, Dubertret C, Dubreucq J, Faget C, Gabayet F, Llorca PM, Mallet J, Misdrahi D, Passerieux C, Rey R, Richieri R, Schandrin A, Urbach

M, Vidailhet P, Costagliola D, Fond G; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Predictors of rapid high weight gain in schizophrenia: Longitudinal analysis of the French FACE-SZ cohort. J Psychiatr Res. 2017 Nov; 94:62-69.

-Mallet J, Le Strat Y, Schürhoff F, Mazer N, Portalier C, Andrianarisoa M, Aouizerate B, Berna F, Brunel L, Capdevielle D, Chereau I, D'Amato T, Denizot H, Dubreucq J, Faget C, Gabayet F, Lançon C, Llorca PM, Misdrahi D, Rey R, Roux P, Schandrin A, Urbach M, Vidailhet P, Fond G, Dubertret C; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Cigarette smoking and schizophrenia: a specific clinical and therapeutic profile? Results from the FACE-Schizophrenia cohort. Prog Neuropsychopharmacol Biol Psychiatry. 2017 Oct 3; 79(Pt B):332-339.

-Fond G, Godin O, Boyer L, Llorca PM, Andrianarisoa M, Brunel L, Aouizerate B, Berna F, Capdevielle D, D'Amato T, Denizot H, Dubertret C, Dubreucq J, Faget C, Gabayet F, Mallet J, Misdrahi D, Passerieux C, Rey R, Richieri R, Schandrin A, Urbach M, Vidailhet P, Leboyer M, Bulzacka E, Schürhoff F; FACE-SZ group. Advanced paternal age is associated withearlier schizophrenia onset in offspring. Results from the national multicentric FACE-SZ cohort. Psychiatry Res. 2017; 254:218-223.

-Rey R, D'Amato T, Boyer L, Brunel L, Aouizerate B, Berna F, Capdevielle D, Chereau I, Chesnoy-Servanin G, Denizot H, Dorey JM, Dubertret C, Dubreucq J, Faget C, Gabayet F, Lancon C, Mallet J, Misdrahi D, Passerieux C, Schandrin A, Schürhoff F, Urbach M, Vidailhet P, Llorca PM, Fond G; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Nicotine dependence is associated with depression and childhood trauma in smokers with schizophrenia: results from the FACE-SZ dataset. Eur Arch Psychiatry Clin Neurosci. 2017; 267(6):567-577.

-Fond G, Bulzacka E, Boyer L, Llorca PM, Godin O, Brunel L, Andrianarisoa MG, Aouizerate B, Berna F, Capdevielle D, Chereau I, Denizot H, Dorey JM, Dubertret J, Dubreucq J, Faget C, Gabayet F, Le Strat Y Micoulaud-Franchi JA, Misdrahi D, Rey R, Richieri R, Roger M, Passerieux C, Schandrin A, Urbach M, Vidalhet P, Schürhoff F, Leboyer M. Birth by cesarean section and schizophrenia: results from the multicenter FACE-SZ data-set. Eur Arch Psychiatry Clin Neurosci. 2017 Sep;267(6):587-594.

-Baudin G, Godin O, Lajnef M, Aouizerate B, Berna F, Brunel L, Capdevielle D, Chereau I, Dorey JM, Dubertret C, Dubreucq J, Faget C, Fond G, Gabayet F, Laouamri H, Lancon C, Le Strat Y, Tronche AM, Misdrahi D, Rey R, Passerieux C, Schandrin A, Urbach M, Vidalhet P, Llorca PM, Schürhoff F; FondaMental Academic Centers of Expertise for Schizophrenia (FACE-SZ) Collaborators. Differential effects of childhood trauma and cannabis use disorders in patients suffering from schizophrenia. Schizophr Res. 2016; 175(1-3):161-167

-Misdrahi D, Tessier A, Swendsen J., Berna F, Brunel L, Capdevielle D, Chereau I, Danion JM, De Pradier M, Dorey JM, Dubertret C, Dubreucq J, Faget C, Gabayet F, Rey R, Richieri R, Passerieux C, Schandrin A, Schurhoff F, Tronche AM, Urbach M, Llorca PM, Fond G. and the FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Determination of adherence profiles in schizophrenia using self-reported adherence: Results from the FACE-SZ data-set. Journal of Clinical Psychiatry 2016; 77(9):e1130-e1136

-Fond G., Godin O., Brunel L., Aouizerate B., Berna F., Bulzacka E., Capdevielle D., Chereau I., Dorey J.M., Dubertret C., Dubreucq J., Faget C., Gabayet F., Le Strat Y., Micoulaud-Franchi J.M., Misdrahi D., Reya R., Richieri R., Passerieux C., Schandrin A., Schürhoff F., Tronche

A.M., Urbach M., Vidalhet P., Llorca P.M., Leboyer M., the FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Peripheral sub-inflammation is associated with antidepressant consumption in schizophrenia. Results from the multi-center FACE-SZ data set. J Affect Disord. 2016 Feb;191:209-15.

Bulzacka E, Boyer L, Schürhoff F, Godin O, Berna F, Brunel L, Andrianarisoa M, Aouizerate B, Capdevielle D, Chéreau-Boudet I, Chesnoy-Servanin G, Danion JM, Dubertret C, Dubreucq J, Faget C, Gabayet F, Le Gloahec T, Llorca PM, Mallet J, Misdrahi D, Rey R, Richieri R, Passerieux C, Roux P, Yazbek H, Leboyer M, Fond G; FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) Group. Chronic peripheral inflammation is associated with cognitive impairment in schizophrenia. Results from the multicentric FACE-SZ dataset. Schizophrenia Bulletin. 2016; 42(5):1290-302

-Roux P, Urbach M., Fonteneau S., Aouizerate B., Berna F., Brunel L., Capdevielle D., Chereau I., Danion J.M., Dorey J, Dubertret C., Dubreucq J., Faget C., Gabayet F., Llorca P.M., Mallet J., Misdrahi D., Rey R., Richieri R., Schurhoff F., Yazbek H., Passerieux C., Brunet Gouet E. The EVACO Project: A new battery for assessing social cognition disorders and related psychiatric disability in schizophrenia. European Psychiatry. 2016;33:S78

-Fond G, Boyer L, Favez M, Brunel L, Aouizerate B, Berna F, Capdevielle D, Chereau I, Dorey JM, Dubertret C, Dubreucq J, Faget C, Gabayet F, Lancon C, Le Strat Y, Misdrahi D, Rey R, Passerieux C, Schandrin A, Schurhoff F, Tronche AM, Urbach M, Vidalhet P, Llorca PM, Pelissolo A. And the FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group. Medication and aggressiveness in real-world schizophrenia. Results from the FACE-SZ dataset. Psychopharmacology 2016; 233 (4) : 571-578

-Lysaker PH, Kukla M, Dubreucq J, Gumley A, McLeod H, Buck KD, Vohs J, Minor KM, Luther L, Leonhardt BL, Belanger EA, Popolo R, Dimaggio G. Metacognitive deficits predict future levels of negative symptoms in schizophrenia controlling for neurocognition, affect recognition, and self-expectation of goal attainment. Schizophrenia Research 2015; 168 (1-2) : 267-72

-Godin O, Leboyer M, Gaman A, Aouizerate B, Berna F, Brunel L, Capdevielle D, Chereau I, Dorey JM, Dubertret C, Dubreucq J, Faget C, Gabayet F, Le Strat Y, Llorca PM, Misdrahi D, Rey R, Richieri R, Passerieux C, Schandrin A, Schurhoff F, Urbach M, Vidalhet P, Girerd N, Fond G, And the FACE-SZ group*. Metabolic Syndrome, abdominal obesity and hyperuricemia in Schizophrenia: Results From the FACE-SZ cohort. Schizophrenia Research 2015; 168(1-2): 388-394.

-Fond G, Godin O, Brunel L, Aouizerate B, Berna F, Bulzacka E, Capdevielle D, Chereau I, Dorey JM, Dubertret Ca, Dubreucq J, Faget C, Gabayet F, Le Strat Y, Micoulaud-Franchi JM, , Misdrahi D, Rey R, Richieri R, Passerieux C, Schandrin A, Schurhoff F, Tronche AM, Urbach M, Vidalhet P, Llorca PM, Leboyer M. And the FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group Abnormal C-reactive protein (CRP) levels in schizophrenia and schizoaffective disorders. Results from the FACE-SZ dataset. European Psychiatry 2015; 30(S8) : S112

-Berna F, Misdrahi D, Boyer L Aouizerate B, Brunel L, Capdevielle D, Chereau I, Danion JM, Dorey JM, Dubertret C, Dubreucq J, Faget C, Gabayet F, Lancon C, Mallet J, Rey R, Passerieux C, Schandrin A, Schurhoff F, Tronche AM, Urbach M, Vidailhet P, Llorca PM, Fond G, and the FACE-SZ (FondaMental Academic Centers of Expertise for Schizophrenia) group*. Akathisia: prevalence and risk factors in a community-dwelling sample of patients with schizophrenia. Results from the FACE-SZ dataset. Schizophrenia Research 2015; 169(1-3): 255-261

-Schürhoff F, Fond G, Berna F, Bulzacka E, Vilain J, Capdevielle D, Misdrahi D, Leboyer M, Llorca PM; FondaMental Academic Centers of Expertise for Schizophrenia (FACE-SZ) collaborators. A National network of schizophrenia expert centres: An innovative tool to bridge the research-practice gap. Eur Psychiatry. 2015 ; 30(6):728-35

Articles en préparation

-Dubreucq M, Plasse J, Gabayet F, Blanc O, Chereau I, Cervello S, Couhet G, Demily C, Guillard-Bouhet N, Gouache B, Jaafari N, Legrand G, Legros-Lafarge E, Pommier R, Quilès Cm, Straub D, Verdoux H, Vignaga F, Massoubre C, REHABAse network*, Franck N and Dubreucq J. Parents with Serious Mental Illness or Autism Spectrum Disorder: results from the RehaBASE national psychiatric rehabilitation cohort

-Dubreucq M, Besnard M, Revil-Signorat K, Abbes M, Cohen T, Favre-Reguillon L, Guy C, Tonnot B, Dubreucq J. Recovery-oriented supported intimate relationships and parenthood in Severe Mental Illness: development of a new intervention

- Dubreucq J, Martin A, Gabayet F, Plasse J, Quiles C, Bralet MC, Lysaker PH, Franck N. Comparing metacognition in schizophrenia and autism spectrum disorders

Ouvrages collectifs

Publications pédagogiques :

-Dubreucq J. Entrainement des compétences sociales chez les adultes avec troubles du spectre de l’autisme, EMC Psychiatrie (prévu pour 2020)

-Roman C, Guy C, Gobbo J, Dubreucq J. Décloisonner l’offre de soins et services, Santé mentale n°217 (mars 2017)

-Roussel C, Dubreucq J, Lucas T, Fernandez E. Retour à l’emploi et Psychoéducation, Santé

Mentale n°164 (janvier 2014), p 68-72. -Cambier G, Viezzoli D, Dubreucq J, Giraud Baro E. Autisme de haut niveau : une pratique de

réhabilitation, Santé mentale n°192 (janvier 2014), p 14-19

Chapitres de livres :

-Dubreucq J, Revil K, Lucas T, Fernandez E, Gabayet F, Roussel C. Les représentations du travail et leur utilisation dans la réinsertion professionnelle In : Franck N. (Ed) Outils de la réhabilitation en psychiatrie Elsevier, Paris, 2016.

-Dubreucq J, Gabayet F, Lucas T. (2016). Lutter contre la stigmatisation par la remédiation cognitive. In : Franck N. (Ed) Outils de la réhabilitation en psychiatrie Elsevier, Paris, 2016.

-Dubreucq J, Gobbo J, Roman C, Giraud Baro E. Le modèle des Équipes Spécialisées d’Évaluation du Handicap Psychique (ESEHP) et du Réseau Handicap Psychique (RéHPsy). In : Franck N. (Ed) Traité de réhabilitation psychosociale ; Elsevier, 2018

-Guy C, Lagasse S, Dubreucq J. Comment le case management contribue-t-il au rétablissement ? In : Franck N. (Ed) Traité de réhabilitation psychosociale ; Elsevier, 2018

-Dubreucq J, Leignier S, Viezzoli D, Fulachier D, Berthe L, Lagasse S. Réhabilitation psychosociale chez les personnes avec syndrome d’Asperger. In : Franck N. (Ed) Traité de réhabilitation psychosociale ; Elsevier, 2018

-Dubreucq J, Pennel L, Dematteis M. Réhabilitation psychosociale chez les personnes avec une addiction. In : Franck N. (Ed) Traité de réhabilitation psychosociale ; Elsevier, 2018

-Dubreucq J, Jobert E, Lucas T, Gabayet F, Revil K, Bogey A, Roussel C. Représentations du travail et réinsertion professionnelle In : Franck N. (Ed) Traité de réhabilitation en psychiatrie Elsevier, Paris, 2018.

-Dubreucq J, Gabayet F, Lucas T, Melis F, Faraldo M (2018). Réduire l’auto-stigmatisation et les symptômes négatifs par la remédiation cognitive. In : Franck N. (Ed) Outils de la réhabilitation en psychiatrie Elsevier, Paris, 2018.

Dematteis M, Pennel L, Dubreucq J, Giraud Baro E, Brousse G. Addiction : entre stratégies d'adaptation et pathologie - Place d'une réadaptation cognitivo-émotionnelle et sociale. In : Franck N. (Ed) Traité de réhabilitation psychosociale ; Elsevier, 2018

-Dubreucq J. Coordination de parcours et pair-aidance. In : N. Franck. Pair-Aidance en santé mentale. A paraître (juin 2020)

Abréviations

TPSP: Troubles Psychiques Sévères et Persistants

TSA-SDI: Troubles du Spectre de l'Autisme sans Déficience Intellectuelle

Liste des figures

-Figure 1. Les différentes formes de stigmatisation…………………………………………….…p22

-Figure 2. Les stéréotypes les plus courants concernant les troubles psychiques………………....p23

-Figure 3. Perception des personnes présentant des troubles psychiques en Europe………….…..p25

-Figure 4. Évolution des attributions causales pour la schizophrénie et la dépression ..….............p26

-Figure 5. Évolution de l’acceptation sociale des personnes avec schizophrénie ou dépression…………………………………………………………………………………………p27

-Figure 6. Évolution de 1996 à 2018 de la perception de la dangerosité potentielle des personnes avec schizophrénie et du soutien aux soins sous contrainte aux USA…………………………....p28

-Figure 7. Effets de la stigmatisation perçue sur les personnes avec TPSP…….……….………..p31

-Figure 8. Prévalence de la discrimination expérimentée chez les usagers des services de santé mentale en Angleterre en 2012…………………………………………………………..………..p32

-Figure 9. Discrimination expérimentée et anticipée du fait d’un diagnostic de schizophrénie- étude INDIGO, site France………………………………………...........................................................p33

-Figure 10. Les réponses possibles face à la stigmatisation…………...........................................p37

-Figure 11. Modèle de l’identité-maladie………….......................................................................p38

-Figure 12. Le « why try effect » …………………………………………………………..…….p39

-Figure 13. Le processus de réhabilitation psychosociale, centré sur la personne………………..p52

-Figure 14. Stratégies pour réduire la stigmatisation publique………….......................................p54

-Figure 15. Le processus de rétablissement personnel…………....................................................p57

-Figure 16. Programmes de réduction de l’auto-stigmatisation…………......................................p60

-Figure 17. Modèle théorique des mécanismes conduisant à la stigmatisation dans les services de santé mentale, selon la théorie de l’étiquetage modifiée (MLT)…………....................................p191

-Figure 18. Réactions émotionnelles négatives suite à une hospitalisation sous contrainte, stress lié à la stigmatisation et auto-stigmatisation…………..........................................................................p192

Table des matières

Partie I. Auto-stigmatisation, réhabilitation psychosociale et rétablissement………..……...p21

Chapitre 1. La stigmatisation en santé mentale…………………………………………..…....p22

1.1 La stigmatisation publique……………………………………………………………….…p23

1.2 La stigmatisation structurelle…………………………………………………………….…p29

1.3 La stigmatisation perçue, expérimentée et anticipée……………………………………....p30

1.4 Le stress lié à la stigmatisation et les réactions possibles………………………….………p35

1.5 L’auto-stigmatisation et la résistance à la stigmatisation……………………………........p38

1.6 La stigmatisation de courtoisie………………………………………………………...........p40

Chapitre 2. Stigmatisation et neurosciences………………………………………………..…..p41

Chapitre 3. Mesurer les effets de la stigmatisation………………………………………….....p44

Chapitre 4. Réduire la stigmatisation et l’auto-stigmatisation………………...……………...p49

4.1. Réduire la stigmatisation structurelle…………………………………………………..…p49 4.1.1. Des maladies mentales au handicap psychique : un préalable indispensable à la

réduction de la stigmatisation…………………………………………………………...p49 4.1.2. Du handicap psychique au rétablissement : place de la lutte contre la

stigmatisation……………………………………………………………………………..p51 4.2. Réduire la stigmatisation publique…………………………………………………………p53 4.3. Réduire l’auto-stigmatisation……………………………………………………………….p55 4.3.1 Auto-stigmatisation et rétablissement……………………………………………..p55 4.3.2 Auto-stigmatisation et réhabilitation psychoociale……………………………….p58

Problématique principale et objectifs du travail de thèse……………………………………..p61

Partie II. L’auto-stigmatisation : mécanismes cognitifs et neurobiologiques identifiés dans la

littérature…………………………………………………………………………………………p64

Partie III. L’auto-stigmatisation dans la littéraure : prévalence, prédicteurs et

conséquences……………………………………………………………………………………...p78

Partie IV. L’auto-stigmatisation et la résistance à la stigmatisation en France…….………p120

Partie V. Discussion générale et perspectives…………………………………………………p182

Chapitre 1. Synthèse des résultats principaux………………………………………………..p183

1.1. L’auto-stigmatisation, une caractéristique fréquente et associée à de multiples effets

négatifs…………………………………………………………………………………………..p184 1.2. L’auto-stigmatisation, un paramètre sous l’influence de facteurs environementaux…p185 1.3. L’auto-stigmatisation, un prédicteur longitudinal du devenir des personnes avec

TPSP…………………………………………………………………………………………….p186 1.4.La réhabilitation psychosociale, un levier pour réduire l’auto-stigmatisation?............p187 1.5. Auto-stigmatisation et résistance à la stigmatisation…………………………………...p188

Chapitre 2. Implcations cliniques et pour la recherche……………………………….……p188

2.1. Réduire la stigmatisation publique………………………………………………….…..p189 2.2. Diffuser les pratiques orientées vers le rétablissement dans les services de santé

mentale………………………………………………………………………………………...p190 2.3. Intervenir précocément auprès des personnes concernées et de leurs proches………p193

Chapitre 3. Limites……………………………………………………………………………p195

Chapitre 4. Perspectives………………………………………………………………………p196

Bibliographie………………………………………………..……..…………………………..p199 Bilbiographie des figures………………………………………………………………………p217

Annexes…………………………………………………………………………………………p219

Partie I. Auto-stigmatisation, réhabilitation psychosociale et rétablissement

“I perceived myself, quite accurately, unfortunately, as having a serious mental illness and therefore as

having been relegated to what I called “the social garbage heap.” I tortured myself with the persistent and

repetitive thought that people I would encounter, even total strangers, did not like me and wished that

mentally ill people like me did not exist. Thus, I would do things such as standing away from others at bus

stops and hiding and cringing in the far corners of subway cars. Thinking of myself as garbage, I would even

leave the sidewalk in what I thought as exhibiting the proper deference to those above me in social class. The

latter group, of course, included all other human beings” (Kathleen Gallo, Self-stigmatized; Schizophrenia

Bulletin, 1994). [1]

Chapitre 1. La stigmatisation en santé mentale

Décrite pour la 1ère fois par Irving Goffman en 1963, la stigmatisation (du grec « stigma », utilisé

pour décrire les marques d’infamie infligées dans l’Antiquité aux personnes d’un statut social

inférieur) peut être définie comme un « attribut ou une caractéristique évoquant une identité sociale

dévaluée dans un contexte particulier » [2]. Si elle a pu renvoyer à une identité positive à certaines

époques (par exemple, les « stigmates » du Christ), elle est principalement associée dans le domaine

de la santé mentale à des représentations sociales négatives et à une discrimination dans l’ensemble

des sphères de la vie quotidienne. Cinq étapes ont été décrites dans le processus de stigmatisation

d’un groupe social : i) la distinction et l’étiquetage de différences entre deux groupes sociaux; ii)

l’association de ces différences à des stéréotypes négatifs; iii) la séparation en deux groupes

distincts (« nous » et « eux ») ; iv) la perte du statut social et v) la discrimination [3]. La

stigmatisation survient lorsque les préjugés relatifs aux troubles psychiques sont associés à des

réactions émotionnelles négatives et à des comportements discriminants envers les personnes

présentant des troubles psychiques sévères et persistants (TPSP) [4]. Elle peut revêtir plusieurs

formes : i) la stigmatisation publique, ou les croyances négatives et attitudes discriminantes du

grand public envers les personnes présentant des troubles psychiques ; ii) la stigmatisation

structurelle, ou la restriction des droits et opportunités des personnes avec des troubles psychiques

par le corps social et les pouvoirs publics ; iii) la stigmatisation perçue par les personnes avec

troubles psychiques ; iv) la stigmatisation expérimentée ou anticipée par les personnes avec troubles

psychiques ; v) l’auto-stigmatisation ; vi) la stigmatisation vécue par les proches de la personne

avec troubles psychiques.

Figure 1. Les différentes formes de stigmatisationI

1.1 La stigmatisation publique

Très étudiée dans la littérature depuis les années 1970 (22 articles en 1980 pour 1008 articles parus

entre 2010 et 2016 ; [5]), la stigmatisation publique concerne les préjugés négatifs et attitudes

discriminantes relatifs aux troubles psychiques et aux personnes qui les présentent. Les préjugés

concernant les personnes avec TPSP peuvent être regroupés en trois catégories principales : i) la

dangerosité pour soi ou les autres ; ii) l’incapacité à s’occuper d’elles mêmes et à apporter une

contribution significative à la société ; iii) le caractère permanent des troubles, sans possibilité de

guérison ou de rétablissement [6].

Figure 2. Les stéréotypes les plus courants concernant les troubles psychiquesII

Ces préjugés semblent présents dans toutes les aires géographiques et culturelles, comme le montre

l’étude « The Stigma in a Global Context- Mental Health Study » réalisée sur plus de 6000

participants issus de 16 pays dans le monde [6]. Ils concernent tous les TPSP, même si la

schizophrénie semble être la pathologie la plus stigmatisée [6]. Les personnes interrogées dans cette

étude décrivaient les personnes avec schizophrénie ou dépression comme imprévisibles

(respectivement 70% et 55%), potentiellement dangereuses pour elles mêmes (76% et 68%) ou les

autres (53% et 35%), moins productives que les autres (51% et 46%) et incapables de s’occuper

d’enfants (85% et 77%). Ces préjugés sont associés à des réactions émotionnelles négatives, comme

la pitié, la peur ou la colère conduisant souvent à des attitudes discriminantes, comme le rejet ou la

volonté de mise à distance les personnes présentant des TPSP [5]. Les domaines de vie les plus

stigmatisés sont le fait de s’occuper d’enfants (85% pour la garde de leurs enfants ; 58% pour

exercer en tant qu’enseignant), l’intégration dans une belle-famille (68%) ou encore d’exercer une

position d’autorité (58% pour occuper des fonctions managériales) [6]. Il existe des variations selon

les aires géographiques et culturelles étudiées, la stigmatisation publique étant plus marquée en

Europe de l’Est et du Sud et en Asie du Sud-Est [6], [7]. La stigmatisation publique en France est

dans la moyenne des pays Européens [7], [8].

Figure 3. Perception des personnes présentant des troubles psychiques en EuropeIII

Les représentations sociales attachées aux maladies mentales restent très négatives (« fou » pour

42% des personnes interrogées en 2014 ; [9]). Les personnes avec TPSP sont considérées comme

potentiellement dangereuses pour elles mêmes (>70% pour la schizophrénie et les troubles

bipolaires ; [9-11]) comme pour les autres (65% pour la schizophrénie et 29% pour les troubles

bipolaires; [10]). Environ 1/3 des personnes interrogées en 2014 rapportent ne pas souhaiter

travailler ou partager un repas avec une personne présentant un TPSP [9], [11]. La schizophrénie est

également la pathologie la plus stigmatisée, environ 25% des Français considérant les personnes

avec schizophrénie comme incapables de vivre en société ou de travailler [10].

Les préjugés relatifs aux TPSP semblent stables dans le temps, des proportions similaires étant

retrouvées pour l’imprévisibilité et la dangerosité potentielle dans les années 2000 en Angleterre

(respectivement 77.3% et 71.3% sur 1737 interrogées sur la schizophrénie ; [12]). Les opinions du

grand public concernant les causes des troubles psychiques ont évolué au cours des vingt dernières

années, celui-ci ayant davantage tendance à les attribuer à des causes neurobiologiques (61 à 71%

pour les causes génétiqueset 76 à 87% pour les anomalies de la neurotransmission aux USA entre

1996 et 2006 ; [13]) et moins à d’autres causes (de 40 à 33% pour l’éducation reçue pendant

l’enfance ; [13]).

Figure 4. Évolution des attributions causales pour la schizophrénie et la dépressionIV

Cela ne s’est toutefois pas traduit par une diminution des attitudes discriminantes envers les

personnes avec TPSP, particulièrement concernant celles avec schizophrénie [13], [14]. Les

personnes interrogées rapportent plus souvent souhaiter ne pas travailler avec une personne avec

schizophrénie (56 à 62% entre 1996 et 2006), l’avoir comme voisin (34 à 45%), interagir ou devenir

ami avec elle (46 à 52% et 30 à 35%) ou encore avoir un proche qui se marie avec elle (65-69% ;

[13]). L’attribution de la schizophrénie à des causes génétiques est une des explications potentielles

de cette évolution [14].

Figure 5. Évolution de l’acceptation sociale des personnes avec schizophrénie ou dépressionV

L’image de la psychiatrie a aussi évolué entre 1990 et 2011, avec une vision plus favorable des

hôpitaux psychiatriques (55 à 62% des personnes considérant qu’il s’agit d’un hôpital comme un

autre ; [15]) mais une réticence plus marquée à l’ouverture de services de psychiatrie dans les

hôpitaux généraux (diminution de la proportion d’opinions favorables de 41 à 26% ; [15]) ou d’un

service de psychiatrie communautaire dans le voisinage (diminution de 34 à 25% ; [15]). L’hôpital

est aussi davantage perçu comme un lieu nécessaire pour protéger la société des personnes avec

TPSP (de 39 à 49% entre 1990 et 2011; [15]). La population est par ailleurs plus favorable aux

soins sous contrainte pour les personnes avec schizophrénie (augmentation de 10% pour

l’hospitalisation sous contrainte aux USA entre 1996 et 2018 ; [16])

Figure 6. Évolution de 1996 à 2018 de la perception de la dangerosité potentielle des personnes

avec schizophrénie et du soutien aux soins sous contrainte aux USAVI

Les professionnels de santé présentent aussi des préjugés et des attitudes discriminantes envers les

personnes avec TPSP, comparables à celles du grand public [17]. En France, la majorité des

médecins généralistes et des pharmaciens considèrent les personnes avec schizophrénie comme

potentiellement dangereuses (77 et 90% ; [18]), constat qui n’est partagé que par une minorité de

psychiatres et d’aidants (10%). Les psychiatres présentent toutefois un désir accru de distance

sociale avec les personnes avec schizophrénie [19], [20]. Les internes en médecine indiquent être

peu à l’aise avec une personne étiquetée comme présentant des troubles psychiatriques et ne pas

souhaiter être à son contact dans leur vie quotidienne, sociale et professionnelle [21]. Cela a un

impact sur la qualité des soins délivrés aux personnes avec TPSP, les professionnels de santé

envisageant plus difficilement des causes physiques aux problèmes de santé présentés, prescrivant

moins d’examens complémentaires et adressant moins fréquemment les patients vers des

spécialistes [22]. Cela contribue notamment à une utilisation plus restreinte des soins somatiques,

tardive et souvent en urgence (+113%, [23]) et in fine à une perte d’espérance de vie pouvant aller

jusqu’à 12 ans dans les troubles bipolaires, jusqu’à 25 ans dans la schizophrénie et jusqu’à 40 ans

dans les troubles borderline [24-26]. Les professionnels de santé mentale ont quant à eux des

attitudes paternalistes envers les personnes avec TPSP, les associent peu aux décisions les

concernant et les orientent encore rarement vers des dispositifs de réinsertion professionnelle dans

l’objectif de les protéger contre un risque éventuel de rechute [22]. Les patients présentant un

trouble de personnalité borderline figurent parmi les plus stigmatisés par les professionnels de santé

et rapportent souvent avoir été discriminés lors d’un passage aux urgences ou au cours d’une

hospitalisation en psychiatrie [22], [26], [27]. Les professionnels de santé rapportent se sentir peu à

l’aise avec les personnes avec troubles de personnalité borderline, souvent perçues comme

manipulatrices et incapables de se rétablir [22], [26], [27]. Ils expriment aussi plus fréquemment

souhaiter éviter de les prendre en charge que des personnes présentant d’autres problèmes de santé

mentale [28].

1.2 La stigmatisation structurelle

La stigmatisation publique envers les personnes avec TPSP s’accompagne souvent d’une forme

structurelle de discrimination [29]. Celle-ci peut se traduire par des lois restreignant la liberté des

personnes avec TPSP (droit de vote, de siéger dans un jury, d’exercer des responsabilités ou encore

d’avoir la garde de ses enfants ; [29], [30], [31]) ou par un budget moindre accordé au domaine de

la santé mentale en comparaison des autres problématiques de santé [3], [29]. C’est notamment le

cas au Royaume-Uni et en France, même si le budget accordé à la recherche en santé mentale est en

augmentation [32], [33]. L’opinion publique est par ailleurs souvent peu encline à préserver les

ressources allouées à la santé mentale des restrictions budgétaires en cas de crise financière (10%

des personnes interrogées en Allemagne entre 2001 pour la schizophrénie et la dépression contre

80% pour le cancer ; [34]). Le traitement médiatique des TPSP est souvent négatif (40% sur 11 000

articles parus dans la presse Canadienne entre 2005 et 2010 les associaient à une dangerosité

potentielle ; [35]; 58% des articles parus entre 2011 et 2015 dans la presse quotidienne et régionale

en France associaient schizophrénie et dangerosité ; [36]) et contribue à la stigmatisation

structurelle. Il semble toutefois sensible aux programmes de réduction de la stigmatisation

(diminution entre 2005 et 2015 d’un tiers du nombre d’articles au contenu stigmatisant parus dans

la presse Canadienne et augmentation de 50% de ceux présentant un contenu positif sur les TPSP ;

[37]).

1.3 La stigmatisation perçue, expérimentée et anticipée

« Tout ce que je connaissais, c’était les stéréotypes que j'avais vus à la télévision ou dans les films. Pour

moi, les maladies mentales, c’était le Dr Jekyll et M. Hyde, les tueurs en série psychopathes, l’asile de fous,

les imbéciles, les schizos, les dingues, les cinglés, la camisole et les fous délirants. C’était tout ce que je

savais sur les maladies mentales, et ce qui m'a effrayée, c'est que les professionnels disaient que j’étais l'une

d'entre eux. » (Deegan, 1993) [38] Les stéréotypes sur les TPSP constituent une construction sociale précoce, acquise avant le début

des troubles et largement partagée par les personnes présentant des troubles psychiques sévères

débutants ou plus installés [5], [39]. Les personnes avec TPSP sont majoritairement conscientes des

stéréotypes négatifs concernant leur pathologie, anticipant d’être discriminés pour cette raison

(69.4% sur 1229 participants avec schizophrénie et 71.6 % des 1182 participants avec troubles de

l’humeur inclus dans l’étude GAMIAN-Europe ; [40], [41]). La stigmatisation perçue peut survenir

avant la pose d’un diagnostic psychiatrique, par exemple chez les personnes dites à ultra-haut risque

de transition psychotique, et contribue alors à augmenter le stress lié à la stigmatisation [42]. Elle

est influencée par la stigmatisation publique [43] et par le fait de se sentir contraint ou non lors d’un

programme de soins ambulatoires sous contrainte [44]. Elle est associée à de multiples effets

négatifs, et ce dès le 1er épisode psychotique : allongement de la durée de psychose non traitée,

symptômes psychiatriques plus sévères, fonctionnement psychosocial et bien être altérés et

perception d’être moins rétabli [45], [46]. Elle contribue à la stigmatisation anticipée et à un recours

plus fréquent aux stratégies d’évitement en situation sociale [47]. Elle est associée négativement à

l’estime de soi, au pouvoir d’agir et à la qualité de vie [47]. La stigmatisation perçue n’est toutefois

pas nécessairement associée à l’auto-stigmatisation, surtout en cas d’identification positive au

groupe stigmatisé (par ex, participation à un groupe d’auto-support ; [48]).

Figure 7. Effets de la stigmatisation perçue sur les personnes avec TPSPVII

La probabilité d’être confronté à des expériences de discrimination dans les activités de la vie

quotidienne est élevée pour les personnes avec schizophrénie, troubles bipolaires et troubles

dépressifs [49], [50], [51].

Figure 8. Prévalence de la discrimination expérimentée chez les usagers des services de santé

mentale en Angleterre en 2012VIII

L’étude INDIGO réalisée dans 27 pays Européens retrouvait une proportion élevée (49%) de

personnes avec schizophrénie rapportant avoir été discriminées en raison de leur pathologie,

particulièrement dans les relations amicales (47%), les relations familiales (43%), leur recherche

d’emploi (27%) ou dans les relations sentimentales (23% ; [52]). La prévalence de la stigmatisation

vécue en France était dans la moyenne des pays Européens [53].

Figure 9. Discrimination expérimentée et anticipée du fait d’un diagnostic de schizophrénie- étude

INDIGO, site FranceIX

Les personnes présentant d’autres TPSP rapportent aussi fréquemment avoir été discriminées dans

au moins un domaine de leur vie en raison de leur pathologie (79% pour la dépression ; [51]; 87%

dans la schizophrénie, les troubles bipolaires ou la dépression ; [50]). Les expériences de

discrimination envers les TPSP semblent par ailleurs présentes dans toutes les aires géographiques

et culturelles, la proportion de personnes rapportant avoir été traitées injustement à cause de leur

pathologie étant plus élevée dans les pays en voie de développement que dans les pays développés

(31.2% vs 20% ; [54]). Il existe peu de mesures de la discrimination expérimentée ou anticipée

prenant en compte les spécificités culturelles liées à certaines aires géographiques, la majorité des

échelles utilisées dans la littérature étant des adaptations d’outils développés en Europe ou en

Amérique du Nord [55].

La stigmatisation expérimentée est associée à un risque suicidaire plus élevé [50]. Elle se manifeste

aussi dans l’accès aux soins (17% d’expériences de discrimination chez un professionnel de santé

dans l’étude INDIGO ; [56]), la décision de fonder une famille (22.5% ; [57]) ou dans le rôle de

parent (28.3% ; [57]). Elle peut souvent prendre des formes plus subtiles (ou « micro-agressions »)

comme par exemple des attitudes paternalistes de l’entourage, un changement dans l’attitude de

l’interlocuteur en cas de divulgation des troubles ou encore l’exposition à des opinions

stigmatisantes sur les réseaux sociaux [58], [59]. Ces « micro-agressions », comme les expériences

plus franches de discrimination, peuvent contribuer à anticiper d’être discriminé en situation sociale

[51], [58], [60]. Environ un tiers des personnes avec TPSP rapportent que certains proches se sont

éloignés d’elles après la divulgation de leur pathologie [58].

La majorité des personnes avec schizophrénie de l’étude INDIGO indique toutefois anticiper d’être

discriminée en cas de divulgation des troubles et souhaiter pour cette raison les cacher à leur

entourage familial, amical ou professionnel (72% ; [49]). La stigmatisation anticipée concerne la

plupart des domaines de vie, mais est particulièrement marquée dans la recherche d’emploi ou les

relations sentimentales (64 et 55% ; [49]) et peut aussi survenir en l’absence d’expérience préalable

de discrimination (33% ; [49]). La stigmatisation anticipée contribue à l’utilisation de stratégies

d’évitement des situations sociales, à un moindre recours aux soins psychiatriques et à l’auto-

stigmatisation [60], [61].

La stigmatisation concerne aussi les personnes présentant des troubles psychiatriques débutants:

21% des adolescents hospitalisés en psychiatrie anticipaient d’être discriminés par leurs pairs après

leur sortie [62], 70% rapportant des expériences de discrimination après un suivi de six mois [63].

Environ la moitié des personnes ayant présenté un 1er épisode psychotique se sentaient stigmatisées

ou rejetées socialement [64] et un quart rapportait des expériences de discrimination [65]. Celles-ci

étaient associées à une altération de l’estime de soi et de la qualité de vie [65]. Les expériences de

discrimination vécues ou anticipées par les personnes présentant des troubles psychiatriques

débutants sont déterminantes, car elles peuvent limiter la possibilité de recourir à des stratégies

adaptatives efficaces et l’adhésion aux soins [42], [66], [67]

1.4 Le stress lié à la stigmatisation et les réactions possibles

Rusch et al. ont décrit un modèle stress-vulnérabilité-compétences appliqué aux effets de la

stigmatisation [68], [69]. Dans ce modèle, le stress lié à la stigmatisation (« stigma stress ») survient

lorsque le préjudice lié à celle-ci excède les ressources d’une personne avec TPSP pour y faire face

[68], [69]. La stigmatisation perçue, la sensibilité au rejet social, le fait de considérer la

discrimination concernant les TPSP comme légitime ou non et l’identification positive ou négative

au groupe stigmatisé sont des prédicteurs du niveau de stress lié à la stigmatisation [68]. Celui-ci

influence en retour les réactions émotionnelles et comportementales d’un individu face à la

stigmatisation [69]. Un stress lié à la stigmatisation élevé conduit dans ce modèle à : i) un sentiment

de honte ; ii) une anxiété sociale plus marquée ; iii) un recours plus fréquent à des stratégies

d’évitement en situation sociale ; iv) une perte d’estime de soi et un sentiment de désespoir ; v) une

altération du fonctionnement social [69]. Le stress lié à la stigmatisation peut contribuer à l’auto-

stigmatisation [70], [71]. Chaque personne réagit de façon très personnelle face à la stigmatisation,

plusieurs réponses étant possibles : l’auto-stigmatisation, l’indifférence ou la juste colère [4]. La

façon dont un individu va réagir à la stigmatisation dépend principalement de deux facteurs,

l’identification au groupe stigmatisé et l’acceptation des stéréotypes négatifs concernant les TPSP

comme légitimes pour le décrire [4], [72]. Certaines personnes vont réagir avec indifférence face à

la stigmatisation, soit par manque d’insight concernant les troubles ou en parvenant à s’en distancier

(« Cela ne me décrit pas », [73]). Les personnes réagissant par la juste colère s’identifient au groupe

social stigmatisé, mais perçoivent les stéréotypes négatifs concernant les TPSP comme injustes et

non pertinents pour les décrire [4]. Les personnes susceptibles de développer une auto-

stigmatisation sont celles s’identifiant fortement au groupe social stigmatisé, mais considérant les

stéréotypes négatifs concernant les TPSP comme vrais et s’appliquant donc à elles mêmes [4]. Il

s’agit souvent de personnes avec un insight préservé, une auto-stigmatisation élevée, des

symptômes dépressifs, un recours fréquent à des stratégies d’évitement, une estime de soi et une

qualité de vie altérée (le paradoxe de l’insight ; [74]). Certains facteurs renforcent la légitimité

perçue de la stigmatisation, comme les réactions implicites de honte [75], le fait d’avoir été en

contact avec d’autres personnes présentant un TPSP au cours d’une hospitalisation en psychiatrie

(« le fait d’être dans le service toute la journée avec 50 autres « malades mentaux » - c’est eux qui

vous apprennent ce que c’est que d’être malade » ; [76]), la manière d’annoncer le diagnostic

(« mon avenir avait été réduit à un pronostic funeste » ; [38]) ou encore le fait de bénéficier au long

cours de prestations de compensation du handicap [77].

Figure 10. Les réponses possibles face à la stigmatisation (P.T Yanos., 2018)X

1.5 L’auto-stigmatisation et la résistance à la stigmatisation

L’auto-stigmatisation survient lorsqu’une personne diagnostiquée avec un TPSP est consciente des

stéréotypes négatifs présents dans la société, les considère comme vrais pour le groupe social

auquel elle appartient et les applique à elle-même [78]. Il s’agit d’un processus de remaniement

identitaire profond au cours duquel l’identité sociale préexistante de la personne (définie par ses

rôles sociaux, par exemple, fils / fille, frère / sœur, employée ou partenaire potentielle) est

progressivement remplacée par une vision dévalorisée de soi, appelée « identité maladie » [79]. Ce

modèle, décrit par P.T Yanos et al. en 2008 posait l’hypothèse d’un effet négatif de l’auto-

stigmatisation sur le devenir des personnes avec TPSP, avec un impact sur l’estime de soi, l’espoir,

l’intensité des symptômes, l’engagement dans les soins de réhabilitation et le fonctionnement

psychosocial [79].

Figure 11. Modèle de l’identité-maladieXI

Ce modèle a été largement vérifié dans la littérature, l’auto-stigmatisation ayant été associée à des

effets négatifs sur l’estime de soi, l’espoir, la motivation à atteindre des objectifs de vie et à

s’engager dans les soins, l’utilisation de stratégies adaptatives efficaces, l’adhésion au traitement, le

bien-être mental et le fonctionnement social et professionnel [79-81]. P. Corrigan et al. ont décrit les

effets de l’auto-stigmatisation sur la motivation à atteindre des objectifs de vie, via une diminution

de l’estime de soi, du sentiment d’efficacité personnelle et du pouvoir d’agir (« why try

effect » ; [78])

Figure 12. Le « why try effect » (d’après Corrigan et al., 2009, reproduit à partir du chapitre n°84

du traité de réhabilitation psychosociale, Elsevier-Masson, 2018)XII

L’auto-stigmatisation concerne entre un quart et un tiers des personnes avec TPSP (41.7% des 1229

participants avec schizophrénie et 21.7% des 1182 participants avec troubles de l’humeur inclus

dans l’étude GAMIAN-Europe ; [40], [41]; 36.1% sur 144 personnes avec TPSP aux USA ; [82]).

Elle est particulièrement corrélée à l’insight dont elle serait un des médiateurs des effets sur la

dépression [74]. Elle a principalement été étudiée dans la schizophrénie et en Amérique du Nord et

en Europe [80].

La résistance à la stigmatisation est définie comme la capacité d’un individu à s’opposer aux

stéréotypes négatifs liés aux TPSP présents dans la société, soit en s’en différenciant (« self-

restoring strategies » ; [73]), soit en les confrontant directement ou indirectement (« challenging

strategies, [73]). Elle concerne environ la moitié des personnes avec TPSP (49.2% sur 1229

participants avec schizophrénie et 49.7% des 1182 participants avec troubles de l’humeur inclus

dans l’étude GAMIAN-Europe ; [40], [41]). Elle est associée négativement à l’auto-stigmatisation

et positivement à l’espoir, l’estime de soi, la qualité de vie et le rétablissement personnel [83], [84],

[85].

La prévalence de l’auto-stigmatisation et de la résistance à la stigmatisation dans d’autres aires

géographiques et culturelles et dans d’autres pathologies à l’origine d’un handicap psychique reste

toutefois largement inconnue.

1.6 La stigmatisation de courtoisie

La stigmatisation publique a aussi des effets sur l’environnement de la personne concernée,

familial, social ou professionnel (« courtesy stigma » ; [86]). Les stéréotypes varient selon le lien

avec la personne stigmatisée: responsabilité de l’apparition de la maladie pour les parents [87], [88]

ou de la récurrence des troubles pour les conjoints et / ou les proches vivant sous le même toit [87];

hérédité des troubles pour les enfants (« contamination » ; [87], [89]) ; dévalorisation de leur

profession et attribution de problèmes personnels de santé mentale pour les professionnels

travaillant en psychiatrie [90], [91], [92]. L’entourage des personnes concernées est souvent

pleinement conscient de cette stigmatisation de courtoisie, qu’il s’agisse des proches (20-50% selon

le lien de parenté ; [93]) ou des professionnels de santé (>50% ; [94]). Cette stigmatisation de

l’entourage peut revêtir plusieurs formes: i) l’exposition à des remarques stigmatisantes sur les

personnes avec TPSP (65% pour les familles ; [95]) ou le fait de travailler dans le domaine de la

santé mentale (58% en Belgique ; [96]) ; ii) un changement dans l’attitude de leur interlocuteur

pouvant aller jusqu’au rejet social (25-50% pour les familles [93], [97]; 30% pour les professionnels

[96]). Elle est associée à de multiples effets négatifs pour les familles : sentiment de honte pour 20 à

50% des proches [62], [97-99]; augmentation du fardeau lié aux TPSP, particulièrement en cas de

recours à des stratégies adaptatives inefficaces (auto-dévalorisation, déni, désengagement ; [100]) ;

niveau plus élevé d’émotions exprimées [101]; évitement des contacts sociaux [97]. La

stigmatisation de courtoisie peut aussi contribuer à la survenue d’un burnout chez les professionnels

de santé mentale [96], [102], qui pourrait influencer les réactions des usagers face à la

stigmatisation [96]. L’impact de la stigmatisation de courtoisie sur l’auto-stigmatisation des

familles et des personnes concernées reste toutefois encore peu connu.

Chapitre 2. Stigmatisation et neurosciences

La stigmatisation est de plus en plus étudiée dans la littérature scientifique, mais peu de liens ont été

faits avec les neurosciences. Dans cette perspective, une définition possible de la stigmatisation

publique pourrait être la réaction automatique cognitive, émotionnelle, physique et

comportementale déclenchée chez une personne « lambda » au cours d’une interaction sociale, par

un indice renvoyant à une caractéristique associée à un groupe stigmatisé [103]. Elle se traduit alors

de façon implicite, c’est-à-dire de façon automatique et non influencée par les biais de désirabilité

sociale [104]. Le test des associations implicites (IAT ; [104]) est un outil populaire en psychologie

sociale, évaluant la force des associations entre différents concepts par la mesure de la latence de

réponse pendant une tâche de catégorisation sur ordinateur entre certains attributs et concepts-

cibles. Une réponse plus rapide indique alors une association forte entre deux concepts (par

exemple, « mental illness » et « blameworthy» ; [105]) et représente les attitudes implicites du

participant. Plusieurs études en imagerie fonctionnelle ont rapporté l’activation de plusieurs aires

cérébrales (amygdale, insula, cortex cingulaire antérieur et cortex préfrontal latéral) lors de tâches

d’évaluation implicites d’un groupe social stigmatisé, comme par exemple, les personnes sans abri

[106], [107]. Il n’existe toutefois pas d’étude de ce type dans le champ de la santé mentale. La

stigmatisation publique implicite a été étudiée dans le grand public et chez les professionnels de

santé mentale. Les étudiants en psychologie interrogés sur leur représentation des personnes avec

TPSP présentaient des niveaux élevés de stigmatisation explicite mais aussi implicite (association

entre « mental illness » et « bad », « blameworthy » ou « helpless » ; [105]). Chez les professionnels

de santé mentale, la stigmatisation implicite a été associée à un sur-diagnostic des troubles

psychiatriques [108]. Les attitudes implicites des professionnels de santé mentale (« automatic

stigma ») envers les personnes présentant des TPSP ont aussi été évaluées dans deux équipes aux

pratiques orientées rétablissement [109], [110]. Si les professionnels de ces équipes exprimaient

majoritairement des attitudes explicites positives envers les personnes avec TPSP, certains

présentaient aussi des attitudes stigmatisantes implicites (association entre les mots « bad » et «

mental illness » ; [109]; entre les mots « awful » et « schizophrenia » ou « bipolar disorder »;

[110]). Celles-ci étaient associées à des réactions émotionnelles négatives, un désir moindre de

venir en aide aux personnes avec TPSP et à une pratique moins orientée vers le rétablissement

[109], [110]. Le test des associations implicites a aussi pu être utilisé pour mesurer l’auto-

stigmatisation implicite et ses corrélations avec d’autres variables [105], [111], [112].

D’autres modèles populaires en psychologie sociale ont été utilisés pour décrire les processus

conduisant à la stigmatisation publique et ceux sous-tendant ses effets sur les personnes concernées.

L’étiquetage comme présentant un TPSP ou la présence de symptômes résiduels lors d’une

interaction sociale peuvent en effet modifier la perception que l’on a de son interlocuteur: si l’on est

informé de son diagnostic de schizophrénie, l’interlocuteur est alors perçu comme plus agressif et

moins fiable, l’interaction étant vécue comme plus anxiogène par le participant [113]. La présence

de symptômes résiduels au cours d’une interaction sociale peut également altérer la perception de

son interlocuteur, et ce même lorsqu’elle n’est pas associée à la présence d’un diagnostic

psychiatrique [114], [115]. Ainsi la présence de symptômes négatifs ou de difficultés dans les

interactions sociales peut provoquer chez l’interlocuteur un sentiment d’étrangeté se traduisant par

un désir augmenté de distance sociale [114]. Le modèle du « stereotype threat », ou « menace du

stéreotype », est un paradigme expérimental couramment utilisé en psychologie sociale pour décrire

les effets de la stigmatisation sur les personnes concernées : un individu appartenant à un groupe

stigmatisé est placé dans une situation où ses actions peuvent confirmer ou non les stéréotypes

négatifs relatifs à celui-ci [116]. Ce modèle a été notamment utilisé pour décrire les effets des

stéréotypes de genre ou raciaux sur les personnes concernées [116], [117]. Il a pu être utilisé dans

les TPSP pour mesurer les effets de la stigmatisation sur le fonctionnement cognitif et social [118],

[119].

Les effets du rejet social sur les personnes concernées peuvent aussi être modélisés

expérimentalement, le paradigme du « cyberball » étant un des modèles les plus couramment

utilisés pour mesurer les réactions émotionnelles suivant l’exclusion ou la ré-inclusion sociale

[120]. Il s’agit d’un jeu de lancer de balle sur ordinateur au cours duquel les participants croient

jouer avec d’autres humains, alors qu’ils sont confrontés à des joueurs contrôlés par l’ordinateur et

placés dans différentes conditions expérimentales (exclusion, inclusion, sur-inclusion sociale ;

[120]). Ce modèle a permis d’identifier les corrélats en imagerie fonctionnelle de la douleur sociale

(activation de l’insula et du cortex cingulaire antérieur ; [121-123]) et les mécanismes de régulation

émotionnelle permettant d’y répondre (activation du cortex préfrontal médial, du précuneus et du

cortex cingulaire postérieur ; [121-123]).

Le rejet social chronique (> 3 mois ; [124], [125]) a été étudié de façon expérimentale chez des

personnes qui y sont confrontées, mais ne présentant pas de TPSP. Il renforce la sensibilité à

l’exclusion sociale, provoque des sentiments de résignation, de désespoir, d’être sans valeur et

conduit au final à un sentiment d’aliénation sociale et à la survenue d’une dépression [124], [125]

(Williams et al., 2009 ; Riva et al., 2014). L’exposition à la stigmatisation - hors santé mentale - a

été associée en IRM fonctionnelle à une activité spontanée plus marquée de l’amygdale cérébrale et

à une connectivité accrue entre l’insula, l’amygdale et le cortex cingulaire antérieur [126]. Dans le

domaine de la santé mentale, il s’agit d’un paradigme principalement utilisé pour modéliser les

effets de l’exclusion sociale chez les personnes avec troubles de personnalité borderline.

Le lien entre neurosciences et auto-stigmatisation chez les personnes avec TPSP était peu clair et

aucune revue de littérature n’avait été conduite sur ce sujet.

Chapitre 3. Mesurer les effets de la stigmatisation

De multiples outils ont été développés pour mesurer les effets de la stigmatisation sur les personnes

avec TPSP. Ils présentent toutefois une grande hétérogénéité et ne mesurent pas tous les mêmes

aspects de la stigmatisation, bien qu’ils soient parfois indifféremment utilisés dans la littérature. La

stigmatisation perçue est principalement mesurée avec l’échelle de Dévalorisation et Discrimination

Perçue (82% des études inclues dans une revue de littérature en 2010 ; [127]). Il s’agit d’une échelle

évaluant la perception du participant des opinions de la majorité du grand public sur les personnes

avec TPSP [128]. Elle peut toutefois être évaluée par certaines dimensions d’autres instruments de

mesure, comme par exemple la sous-échelle « conscience des stéréotypes » de l’échelle de mesure

de l’auto-stigmatisation (SSMIS ; [129]) ou celle « sentiment d’être stigmatisé » du questionnaire

de mesure de l’estime de soi et de la stigmatisation [130] qui en sont des adaptations [127].

L’inventaire des expériences de stigmatisation (ISE ; [131]) et l’échelle d’auto-stigmatisation dans

la dépression (DSS ; [132]) contiennent plusieurs items mesurant la stigmatisation perçue [40].

L’échelle de stigmatisation mesure quant à elle la façon dont le participant pense avoir été

personnellement perçu ou traité par la société [133].

Dix échelles permettent de mesurer la stigmatisation expérimentée ou anticipée, une des plus

couramment utilisées étant l’échelle de discrimination et de stigmatisation développée pour l’étude

INDIGO (DISC ; [49]). L’échelle de stigmatisation de King, validée en version française en 2013,

mesure les aspects positifs et négatifs de la discrimination vécue par la personne et ses réticences

éventuelles concernant la divulgation de ses troubles [134], [135]. L’inventaire des expériences de

stigmatisation mesure la discrimination vécue par les usagers et l’impact que celle-ci a eu sur leur

vie [131]. L’échelle d’auto-stigmatisation dans la dépression [132] et le sous-score «expériences de

discrimination » de l’échelle de mesure du stigma internalisé (ISMI ; [136]) mesurent la

stigmatisation vécue. Il existe également cinq autres échelles de mesure de la discrimination

expérimentée [127].

Le stress lié à la stigmatisation est mesuré avec une échelle en 8 items, mesurant la perception de la

stigmatisation comme potentiellement dommageable pour soi et la perception des ressources

disponibles pour y faire face [69]. Les items allant de 1 à 7 sont additionnés pour obtenir deux sous-

scores, le score total étant calculé par une soustraction entre les deux.

Il existait cinq échelles évaluant l’auto-stigmatisation en 2010 [40], quatorze autres échelles ayant

été développées depuis. L’échelle de mesure de la stigmatisation internalisée (ISMI ; [136]) et

l’échelle d’auto-stigmatisation (SSMI-S ; [129]) sont les plus couramment utilisées. L’ISMI est un

auto-questionnaire de 29 items, traduit dans 14 langues et adapté dans un large panel de pathologies

(schizophrénie, dépression, troubles de l’usage de substances, troubles du comportement

alimentaire, épilepsie, lèpre ; [137]). Il existe également une version pour les proches de personnes

avec TPSP et une version abrégée en 10 items [137]. Cette échelle mesure l’expérience personnelle

de la stigmatisation, avec un score total et cinq sous-échelles en évaluant différents aspects : le

sentiment d’aliénation (ou d’être un membre dévalorisé de la société) ; l’accord avec les stéréotypes

négatifs concernant les TPSP ; les expériences de discrimination ; le retrait social comme stratégie

adaptative ; la résistance à la stigmatisation. Un score total supérieur ou égal à 2.5 indique un

niveau élevé d’auto-stigmatisation [40]. Cette échelle a montré une cohérence interne (alpha=0.80-

0.92 ; [137]) et des propriétés test-retest satisfaisantes (0.92 ; [137]). Le sous-score résistance à la

stigmatisation est généralement exclu des études sur l’auto-stigmatisation, car il est faiblement

corrélé aux autres dimensions évaluées (alpha=0.56 dans une méta-analyse de 2016 ; [83]). La

SSMI-S est un auto-questionnaire en 40 items, évaluant les quatre étapes du processus d’auto-

stigmatisation : conscience des stéréotypes négatifs concernant les TPSP ; accord avec ces

stéréotypes ; application à soi ; diminution de l’estime de soi liée à l’auto-stigmatisation [129]. Un

sous-score est calculé pour chaque étape, un score plus élevé indiquant un accord plus marqué avec

la dimension mesurée. Les deux dernières étapes de l’auto-stigmatisation (application et diminution

de l’estime de soi) sont celles qui entraînent une altération du rétablissement dans ses aspects

objectifs et subjectifs [138]. Les propriétés psychométriques de l’échelle sont satisfaisantes (0.72-

0.89 ; [129]) et il en existe une version abrégée, à 20 items [139]. L’utilisation de stratégies de non-

divulgation des troubles par crainte d’être stigmatisé (« secrecy ») est pour certains auteurs une

composante du processus d’auto-stigmatisation mais pour d’autres, il s’agit plutôt d’une mesure de

la discrimination anticipée [127]. Elle est évaluée dans trois instruments de mesure, l’échelle

d’auto-stigmatisation dans la dépression [132], l’inventaire des expériences de stigmatisation [131]

et l’échelle de stigmatisation de King [134], [135]. L’équipe de W.W.S Mak à Hong-Kong a

développé deux auto-questionnaires complémentaires, l’un mesurant les composantes cognitives,

émotionnelles et comportementales de l’auto-stigmatisation (échelle de mesure de l’auto-

stigmatisation en 48 items, une version abrégée en 9 items ayant été développée par la suite; [140],

[141]) et l’autre l’automaticité et la répétition des pensées auto-stigmatisantes (STARS ; [142]). Les

deux échelles ont montré des propriétés psychométriques satisfaisantes (alpha=0.91 et 0.89 ; [143]).

Le questionnaire d’auto-stigmatisation [144] est une auto-évaluation en 42 items couvrant trois

périodes de vie - avant le début des troubles, pendant et après la phase aigue – et 8 dimensions dont

3 directement en lien avec l’auto-stigmatisation. Certaines échelles ont été créées spécifiquement

pour les personnes présentant des troubles psychiatriques débutants : l’échelle de mesure de la honte

internalisée, un auto-questionnaire en 30 items [145] ; l’échelle révisée des croyances personnelles à

propos de la maladie, un auto-questionnaire en 29 items avec des composantes cognitives et

émotionnelles (la honte ; le sentiment d’être piégé ; le contrôle sur la maladie ; la marginalisation

sociale / l’adaptation au groupe ; [146]) ; l’échelle des croyances personnelles à propos des

expériences inhabituelles, un auto-questionnaire en 13 items et 3 facteurs principaux (attentes

pessimistes, honte externalisée et internalisée, internalisation d’un statut dévalorisé ; [147]) ; une

version adaptée aux adolescents en 5 items de l’échelle d’auto-stigmatisation d’Austin mesurant le

sentiment de honte, de gêne et la crainte du regard des autres sur leurs difficultés [148] ; l’échelle de

la stigmatisation attachée à l’étiquette « troubles psychiatriques » pour les personnes à ultra-haut

risque de transition psychotique [149], en 42 items mesurant la conscience des stéréotypes, l’accord

avec ceux-ci, les réactions émotionnelles associées au fait de suivre un traitement (honte, embarras,

espoir), l’utilisation de stratégies de non-divulgation des troubles par crainte d’être stigmatisé et la

discrimination expérimentée. Plusieurs autres échelles de mesure de l’auto-stigmatisation ont été

développées pour les besoins d’une étude donnée : échelle d’auto-stigmatisation de Link en 8 items

mesurant les croyances et émotions consécutives au fait de développer un TPSP ou d’être

hospitalisé (honte, tristesse, sentiment d’être différent ou d’être « un raté » ; [150]) ; échelle d’auto-

stigmatisation en 4 items mesurant l’accord avec les stéréotypes, la culpabilité et le sentiment d’être

« un raté » [60] ; échelle de mesure des stratégies d’évitement de l’étiquette « troubles

psychiatriques » dans la dépression [151] ; échelle de mesure de l’auto-stigmatisation de la

dépression en 16 items [152] ; échelle de mesure de la stigmatisation de la sexualité en 27 items

évaluant les expériences de discrimination, la stigmatisation structurelle, le sentiment d’être dévalué

dans leur sexualité, le sentiment d’être moins attirant pour les autres du fait de sa pathologie et

l’impression de devoir renoncer au contrôle de sa sexualité pour avoir des relations avec les autres

[153]. La résistance à la stigmatisation est principalement mesurée avec la sous-échelle spécifique

de l’ISMI en 7 items, un score supérieur ou égal à 2.5 indiquant un niveau élevé de résistance à la

stigmatisation [40], [41]. Il existe toutefois d’autres échelles, dont l’une mesure l’utilisation de

stratégies de distanciation ou de lutte contre la stigmatisation [154]. L’échelle de résistance à la

stigmatisation, un auto-questionnaire en 20 items développé en 2017, est un nouvel instrument

mesurant cinq dimensions: la capacité à se différencier des attitudes d’autrui ; l’identité personnelle

en dehors de la maladie mentale ; les stratégies utilisées pour se distancier des pensées négatives en

lien avec la stigmatisation ; le désir d’utiliser sa propre expérience pour aider d’autres usagers à

lutter contre la stigmatisation ; les stratégies utilisées par les personnes concernées pour faire face à

la stigmatisation [155].

Ces différentes formes de stigmatisation sont souvent peu différenciées dans la littérature et les

outils de mesure, alors qu’elles renvoient à des concepts distincts (43.9% des 127 études inclues

dans la méta-analyse de Livingston et Boyd en 2010 sur l’auto-stigmatisation utilisaient en fait des

échelles de mesure de la stigmatisation perçue ou expérimentée ; [80]). Il est donc particulièrement

difficile de distinguer les effets spécifiques de l’auto-stigmatisation sur les aspects objectifs et

subjectifs du rétablissement et de bien appréhender les relations entre ces différentes composantes

de la stigmatisation. Il est aussi difficile de mesurer l’impact des pratiques orientées rétablissement

sur les différents aspects de la stigmatisation des personnes concernées. Il n’existait encore aucune

revue de littérature s’intéressant spécifiquement à l’auto-stigmatisation.

Chapitre 4. Réduire la stigmatisation et l’auto-stigmatisation

4.1 Réduire la stigmatisation structurelle

« For 650 million persons around the world living with disabilities, today promises to be the dawn of a new

era- an era in which disabled people will no longer have to endure the discriminatory practices and attitudes

that have been permitted to prevail for all too long (Kofi Annan’s statement, UN, 2006) [156]

4.1.1. Des maladies mentales au handicap psychique : un préalable indispensable à la

réduction de la stigmatisation

Le passage d’un modèle médical (« les maladies mentales ») à un modèle social du handicap est

souvent une étape clé dans la réduction de la stigmatisation structurelle, permettant de se focaliser

davantage sur les conséquences fonctionnelles des troubles et les moyens d’y remédier que sur les

symptômes résiduels. Cette conception a conduit aux USA, au Royaume-Uni, comme en France à

remplacer le terme « maladies mentales chroniques », associé à une vision pessimiste de l’évolution

des troubles, par ceux « Troubles Psychiques Sévères et Persistants » (Serious Mental Illness) et

« Handicap Psychique » (« psychiatric disability »).

Les Troubles Psychiques Sévères et Persistants (TPSP) sont définis par « la présence actuelle ou au

cours de l’année écoulée de troubles mentaux, comportementaux ou émotionnels (hors troubles du

spectre de l’autisme et troubles de l’usage des substances) pendant une durée suffisante pour

correspondre aux critères diagnostiques spécifiés par le DSM IV ou la CIM 11 pour certaines

pathologies (schizophrénie, troubles bipolaires, troubles de la personnalité borderline, troubles

anxieux ou troubles dépressifs sévères et invalidants) et à l’origine d’un retentissement fonctionnel

avec altération significative d’un ou plusieurs domaines de vie majeurs (relations interpersonnelles,

autonomie et accès au logement, accès à l’emploi, loisirs) » ; [157].

Le terme Handicap Psychique (« psychiatric disability ») est apparu aux USA en 1990 dans

l’American with Disabilities Act (ADA) [158] prohibant la discrimination envers les personnes

handicapées dans tous les domaines de la vie. La même définition du handicap (« une altération

d’une fonction physique ou mentale limitant de façon substantielle la participation d’une personne

dans un ou plusieurs domaines majeurs de la vie ») a été reprise au Royaume-Uni en 1995 dans le

Disabilities Discrimination Act (DDA) [159]. En France, la Loi 2005-102 [160] pour l'égalité des

droits et des chances, la participation et la citoyenneté des personnes handicapées a introduit la

notion de handicap psychique : « Constitue un handicap, au sens de la présente loi, toute limitation

d'activité ou restriction de participation à la vie en société subie dans son environnement par une

personne en raison d'une altération substantielle, durable ou définitive d'une ou plusieurs fonctions

physiques, sensorielles, mentales, cognitives ou psychiques, d'un polyhandicap ou d'un trouble de

santé invalidant ».

Ces dispositions ont été renforcées par la Convention des Nations Unies pour le droit des personnes

en situation de handicap, signée en 2006 [161] par 151 pays à travers le monde, qui vise à

« promouvoir, protéger et assurer la pleine et égale jouissance de tous les droits de l’homme et de

toutes les libertés fondamentales par les personnes handicapées et de promouvoir le respect de leur

dignité intrinsèque » (article n°1, résolution 61/106). Elle mentionne dans son article n°8 la

nécessité de lutter contre la stigmatisation par : i) des campagnes mettant en lumière les forces et

capacités préservées des personnes en situation de handicap, par exemple à exercer un emploi ou

contribuer utilement à la société ; ii) des campagnes auprès du grand public, des enfants ou

adolescents et des médias incitant à adopter une attitude respectant leurs droits ; iii) des actions

auprès des personnes en situation de handicap pour les informer de leurs droits. La réduction de la

stigmatisation structurelle des personnes en situation de handicap est un objectif figurant dans

plusieurs articles, qui rappellent le droit des personnes à exercer leur capacité juridique dans tous les

domaines de leur vie (article n°12), celui d’être inclus dans la communauté (article n°19), de se

marier et de fonder une famille (article n°23), d’accéder à des soins de qualité similaires à ceux

reçus par les personnes non handicapées (article n°25), d’exercer un emploi et une citoyenneté

pleine et entière (articles n°27 et 29).

4.1.2. Du handicap psychique au rétablissement : place de la lutte contre la stigmatisation

Un point clé de l’article n°8 de la Convention des Nations Unies pour le droit des personnes

handicapées [161] est l’accent mis sur les forces et capacités préservées des personnes concernées

plus que sur les limitations liées à leur pathologie dans les campagnes de lutte contre la

stigmatisation. Elle rejoint en cela le modèle du rétablissement dans la conception de R.P

Lieberman, où il existe un équilibre entre les ressources personnelles et environnementales d’une

personne avec TPSP et les difficultés liées à la pathologie ou à la stigmatisation, les soins de

réhabilitation psychosociale pouvant faciliter le dépassement de la situation de handicap et son

rétablissement [162], [163]. La réhabilitation psychosociale regroupe un large panel de soins et

services visant à favoriser le rétablissement des personnes avec TPSP, incluant l’amélioration de la

santé physique, du fonctionnement cognitif et social, du bien-être mental, de la qualité de vie, la

réduction des symptômes et de la stigmatisation et l’accompagnement vers le réinvestissement de

rôles sociaux significatifs pour elles [164].

Figure 13. Le processus de réhabilitation psychosociale, centré sur la personneXIII

Le rétablissement peut être défini dans sa conception clinique, c’est à dire la rémission clinique et

fonctionnelle, et depuis la perspective des personnes concernées où il renvoie à un processus de

redéfinition de soi pour développer une identité positive au delà de la maladie et vivre une vie riche

et pleine de sens [165].

Décrites dans plusieurs guides d’appui (« Faire du rétablissement une réalité » ; [166] ; « Guide de

référence pour les pratiques axées sur le rétablissement » ; [167]) les pratiques orientées vers le

rétablissement posent plusieurs principes clés qui réinterrogent les pratiques professionnelles :

promouvoir un langage empreint d’espoir et d’optimisme (« personne avec troubles psychiques » au

lieu de « patient souffrant de troubles psychiques » par exemple) ; mettre l’accent sur les forces et

développer une relation de collaboration « horizontale » (c’est-à-dire entre deux personnes égales,

l’une disposant d’un savoir scientifique et l’autre expérientiel) basée sur l’auto-détermination de la

personne accompagnée ; impliquer des pairs aidants dans l’accompagnement ; favoriser l’inclusion

sociale et lutter contre la stigmatisation.

Le décret 2017-1200 [168], relatif au projet territorial de santé mentale, contribue à réduire la

stigmatisation structurelle des personnes avec TPSP, dans ses articles R. 3224-6.-I sur l’accès le

plus précoce possible aux soins de réhabilitation psychosociale et à des services facilitant l’accès au

logement, aux études, à l’emploi et à la vie sociale pour favoriser le rétablissement et l’inclusion

sociale des personnes concernées et R. 3224-9.-I. sur le respect et de la promotion des droits des

personnes présentant des troubles psychiques, du renforcement de leur pouvoir de décider et d’agir

et de la lutte contre la stigmatisation. L’instruction N°DGOS/R4/2019/10 [169] relative au

développement des soins de réhabilitation psychosociale sur les territoires et les décrets n°2016-

1940 [170] relatif au dispositifs d’appartements de coordination thérapeutique « Un chez-soi

d’abord » et n°2016-1889 [171] relative à la mise en œuvre du dispositif d’emploi accompagné

contribuent également à la réduction de la stigmatisation structurelle des personnes avec TPSP.

4.2. Réduire la stigmatisation publique

De façon générale, il existe principalement trois types de stratégies pour réduire la stigmatisation

publique : la protestation des personnes concernées, des aidants familiaux ou des professionnels de

santé, suite à un discours ou une émission à caractère stigmatisant ; l’éducation du grand public

pour corriger les stéréotypes négatifs et réduire les attitudes discriminantes envers les personnes

avec TPSP ; le contact direct avec des personnes concernées à l’occasion de campagnes de dé-

stigmatisation [172]. La protestation produit généralement des effets immédiats (par exemple, le

retrait du contenu stigmatisant ; [172]). Les stratégies d’éducation et de contact ont un effet positif

sur les réactions émotionnelles et les attitudes du grand public bien que de taille limitée [172],

[173]. L’éducation serait plus efficace chez les publics jeunes, alors que le contact avec des

personnes concernées aurait une effet plus important chez un public adulte [172]. Les campagnes

sur des médias locaux, régionaux ou nationaux auraient un effet positif modéré sur les attitudes du

grand public envers les personnes avec TPSP, mais ne se traduirait toutefois pas par une moindre

probabilité d’être confronté à des expériences de discrimination [174]. Ces stratégies ont pu être

utilisées pour construire des programmes de réduction de la stigmatisation de grande ampleur.

Figure 14. Stratégies pour réduire la stigmatisation publiqueXIV

En 1996, N. Sartorius et l’Association Mondiale de Psychiatrie lançaient le 1ère programme de

réduction de la stigmatisation liée à la schizophrénie (Opening Doors), implanté depuis dans 20

pays à travers le monde [175]. Plusieurs campagnes nationales de grande ampleur se sont succédées

depuis, au Canada (Opening Minds ; [176]), en Angleterre (Time To Change ; [177]), en Écosse

(See Me ; [178]), en Irlande (See Change ; [179]), au Danemark (One of Us ; [180]), en Allemagne

[181] en Australie (Beyond Blue et Sane Australia ; [182]) et en Nouvelle Zélande (Like Minds,

Like Mine ; [183]). En France comme en Allemagne, les Semaines d’Information sur la Santé

Mentale (SISM) sont organisées chaque année pour réduire la stigmatisation envers les personnes

avec TPSP. Il existe également d’autres événements plus spécifiques, comme les Journées de la

Schizophrénie ou la Journée Mondiale des Troubles Bipolaires.

Ces programmes nationaux ou internationaux partagent certaines caractéristiques : utilisation de

stratégies d’éducation ou de contact, parfois combinée avec des campagnes de grande ampleur dans

les médias et public cible diversifié (jeunes, médias, professionnels de santé et monde du travail). Il

existe toutefois des spécificités, comme par exemple, l’adaptation du programme néo-zélandais au

contexte culturel Maori [183]. Ces programmes auraient un effet sur la stigmatisation publique,

mais de durée limitée [184]. Ils permettraient par ailleurs d’améliorer le traitement médiatique des

personnes avec TPSP, en augmentant le nombre de contenus positifs et en diminuant celui de

contenus stigmatisants [37], [52]. La réalisation en Allemagne de campagnes de dé-stigmatisation

entre 1990 et 2011 aurait permis de réduire la stigmatisation perçue par les personnes avec TPSP, ce

qui contraste avec les changements limités de la stigmatisation publique sur cette même période

[34]. Le programme le plus évalué, Times To Change, permettrait par ailleurs de réduire la

discrimination vécue de 11% sur une période de 3 ans [185]. Les effets des campagnes de dé-

stigmatisation sur l’auto-stigmatisation sont toutefois encore inconnus.

4.3. Réduire l’auto-stigmatisation

4.3.1. Auto-stigmatisation et rétablissement

Le rétablissement personnel, défini par l’usager, implique: 1) de trouver et garder espoir ; 2) la

redéfinition d’une identité positive au-delà de la pathologie ; 3) l’auto-détermination et la reprise du

pouvoir d’agir ; 4) le réengagement dans une vie riche et dotée de sens [165], [166].

Il s’agit d’un processus non linéaire, pouvant être modélisé selon R. Andresen en cinq stades, le

stade moratoire (déni, désespoir), celui de prise de conscience de la possibilité du rétablissement,

celui de préparation où la personne fait l’inventaire de ses ressources et vulnérabilités et bénéficie le

plus des stratégies de réhabilitation psychosociale, celui de reconstruction au cours duquel la

personne réinvestit activement des rôles sociaux significatifs et celui de croissance caractérisé par

une autogestion des troubles et un sentiment de bien-être [186]. Patricia Deegan illustre cette phase

de la façon suivante, « Le rétablissement, c’est une attitude, une façon d’aborder la journée et les

difficultés qu’on y rencontre. Cela signifie que je sais que j’ai certaines limitations et qu’il y a des

choses que je ne peux pas faire. Mais plutôt que de laisser ces limitations être une occasion de

désespoir, une raison de laisser tomber, j’ai appris qu’en sachant ce que je ne peux pas faire, je

m’ouvre aussi aux possibilités liées à toutes les choses que je peux faire.» [187].

Le rétablissement implique un remaniement identitaire profond au cours duquel la personne évolue

dans son rapport avec sa pathologie, s’en distancie pour retrouver une identité positive à laquelle

celle-ci est intégrée, mais ne la définit pas [188]. Il a été illustré de la façon suivante : « Le

rétablissement implique de remplacer une vision de soi-même centrée sur le handicap psychique par

une perception de soi comme une personne complète confrontée à des défis, renforçant ainsi son

récit de vie par la transformation d’une expérience douloureuse en un événement marquant de vie »

[189]).

Figure 15. Le processus de rétablissement personnelXV

Le rétablissement implique de dépasser les effets de l’auto-stigmatisation pour pouvoir réinvestir

des rôles sociaux significatifs (avoir des amis, vivre de façon autonome, être employé ou avoir des

activités de loisir, vivre en couple et devenir parent; [190]). Selon William Anthony, « Se rétablir

d’un trouble psychique implique bien davantage que de se rétablir du trouble lui-même. Les

personnes avec trouble psychique peuvent avoir à se rétablir de la stigmatisation qu’elles ont intégré

dans leur identité même » [191].

4.3.2. Auto-stigmatisation et réhabilitation psychosociale

Le rétablissement – dans ses aspects objectifs (« rétablissement fonctionnel et social ») comme dans

ses aspects plus subjectifs (« rétablissement personnel ») – est l’objectif final de tout

accompagnement en réhabilitation psychosociale [164], [165]. Il peut être soutenu dans ses

différentes dimensions par la mise en place de soins de réhabilitation psychosociale et par la

diffusion large des pratiques orientées vers le rétablissement dans les secteurs sanitaires, sociaux et

médico-sociaux. Celles-ci n’impliquent pas nécessairement la mise en place de techniques

spécialisées mais nécessite la création d’un environnement favorable au rétablissement, c’est-à-dire

porteur d’espoir, focalisé sur les ressources préservées plus que sur les difficultés liées à la

pathologie et soutenant l’auto-détermination et le contrôle de sa vie par l’usager [166], [192]. La

mise en place de pratiques orientées vers le rétablissement au sein des services de santé mentale

pourrait réduire la stigmatisation et l’auto-stigmatisation, bien que cela n’aie pas encore été évalué.

Plusieurs interventions spécifiques ont été développées pour réduire l’auto-stigmatisation à partir de

la fin des années 2000, principalement aux USA, mais aussi à Hong Kong et au Royaume-Uni

[184], [193]. Il s’agit pour la plupart de programmes couplant de la psychoéducation destinée à

remettre en cause les préjugés relatifs aux personnes avec TPSP et de la restructuration cognitive

visant à prendre du recul par rapport aux biais cognitifs relatifs à l’auto-stigmatisation (par exemple,

« je ne suis pas quelqu’un de fiable »). C’est notamment le cas des programmes Ending Self-Stigma

(9 séances ; [194], [195]), Self-stigma Reduction (16 séances ; [196]) et Narrative Enhancement and

Cognitive Therapy (NECT) (20 séances ; [197]). Le programme NECT a comme spécificité une

partie consacrée à la narration de soi pour aider les participants à donner un sens à leurs expériences

en lien avec la maladie et renforcer leurs capacités à se dégager de « l’identité-maladie » pour

parvenir à une conception plus intégrée d’eux mêmes [197]. Ces programmes ont tous montré une

efficacité sur la réduction de l’auto-stigmatisation, bien que parfois non durable dans le temps

[102], [195], [196], [198], [199]. Le programme NECT a déjà été adapté en Israël et en Suède, une

adaptation étant en cours à Singapour. Il a fait l’objet de trois essais randomisés contrôlés,

retrouvant des effets positifs sur l’auto-stigmatisation, l’espoir et l’estime de soi, persistants après

six mois de suivi [102], [198], [199]. Le programme NECT aurait également des effets sur le retrait

social en lien avec l’auto-stigmatisation et l’utilisation de stratégies d’évitement des situations

sociales, mais son efficacité sur le fonctionnement social des participants est encore inconnu [102].

L’accompagnement à la divulgation contrôlée des troubles, stratégie associée à la reprise du pouvoir

d’agir et l’amélioration de l’estime de soi, fait l’objet d’un programme en 3 séances (Honest, Open

and Proud ; [200], [201]) en cours d’adaptation en Suisse francophone. Il a montré une efficacité sur

la réduction du stress lié à la stigmatisation et de l’auto-stigmatisation chez des adolescents et

adultes avec TPSP [200], [201]. Il existe également d’autres types d’intervention : un programme

combinant psychoéducation et photo-expression animé par des pairs aidants (PhotoVoice ; [202]) ;

un programme basé sur les thérapies d’acceptation et d’engagement développé pour les personnes

avec troubles de l’usage de substances [203] ; des thérapies cognitives et comportementales

individuelles ciblant les biais cognitifs relatifs à l’auto-stigmatisation et renforçant l’utilisation de

stratégies adaptatives efficaces pour faire face à la stigmatisation [204], [205] ; des programmes

d’auto-support entièrement gérés par les usagers, sans assistance de la part de professionnels [206].

Figure 16. Programmes de réduction de l’auto-stigmatisationXVI

Aucun de ces programmes de réduction de l’auto-stigmatisation n’était disponible en langue

française.

Problématique et objectifs du travail de thèse

L’auto-stigmatisation est fréquente chez les personnes avec Troubles Psychiques Sévères et

Persistants, dont elle altère le devenir clinique et fonctionnel. Elle est toutefois encore peu étudiée

du point de vue des neurosciences et sur un plan expérimental. L’auto-stigmatisation a

principalement été étudiée de façon transversale, dans la schizophrénie et en Europe ou en

Amérique du Nord. Sa prévalence dans d’autres aires géographiques et culturelles et dans d’autres

pathologies à l’origine d’un handicap psychique reste encore peu connue. Elle a fréquemment été

évaluée avec des échelles mesurant d’autres aspects de la stigmatisation (stigmatisation perçue,

expérimentée ou anticipée) et il est donc difficile d’en discerner les prédicteurs et effets spécifiques.

L’auto-stigmatisation, comme la résistance à la stigmatisation, n’ont pas encore été étudiées en

France, où leur fréquence et les caractéristiques qui y sont associées restent donc largement

inconnues. Elles ont par ailleurs été peu étudiées dans des cohortes de réhabilitation psychosociale,

où la réduction de l’auto-stigmatisation et le renforcement des capacités à y faire face pourraient

être des objectifs thérapeutiques majeurs. Aucun programme de réduction de l’auto-stigmatisation

n’est disponible en langue française.

Le présent travail est composé de deux revues systématiques de la littérature, l’une sur les corrélats

neurobiologiques de l’auto-stigmatisation et l’autre sur sa prévalence, ses prédicteurs et ses

corrélats cliniques et fonctionnels dans les TPSP. Il comprend également trois articles originaux

issus de la base nationale des centres référents de réhabilitation psychosociale et de remédiation

cognitive (REHABase) et le protocole d’un essai randomisé contrôlé en stepped-wedge portant sur

l’évaluation de l’efficacité de la version française du programme de thérapie cognitive et de

renforcement narratif (NECT) sur le fonctionnement social chez des personnes avec TPSP.

La première revue systématique de littérature avait pour objectifs de : i) recenser les études ayant

évalué l’auto-stigmatisation ou des concepts proches, comme le rejet social, d’un point de vue

expérimental ; ii) mieux appréhender les mécanismes cognitifs et neurobiologiques sous-tendant les

effets de la stigmatisation sur les personnes avec TPSP ; iii) dégager des pistes de recherches pour

une modélisation expérimentale de l’auto-stigmatisation pouvant être utilisée comme variable

d’intérêt dans des essais cliniques.

La seconde revue systématique de littérature avait pour objectifs de : i) recenser les études sur la

prévalence, les prédicteurs et les conséquences de l’auto-stigmatisation chez les personnes avec

TPSP ; ii) dégager les implications pour la pratique clinique ; iii) identifier les forces et limites des

connaissances existantes et de nouvelles pistes de recherche sur le sujet.

Le 1er article issu de REHABase avait pour objectifs : i) la description de la cohorte nationale des

centres référents de réhabilitation psychosociale et de remédiation cognitive ; ii) la présentation des

premiers résultats décrivant les caractéristiques des personnes avec TPSP ou troubles du spectre

autistique sans déficience intellectuelle (TSA-SDI), leur bien-être, leur satisfaction dans différents

domaines de la vie, leurs demandes d’aide et leur rétablissement personnel ; iii) dégager des pistes

d’analyses transversales et longitudinales ultérieures.

Le 2nd article issu de REHABase avait pour objectifs : i) d’identifier la fréquence de l’auto-

stigmatisation dans les TPSP et les TSA-SDI au sein de la cohorte nationale des centres référents de

réhabilitation psychosociale et de remédiation cognitive ; ii) d’identifier les facteurs associés à une

auto-stigmatisation élevée avec leurs implications thérapeutiques.

Le 3ème article issu de REHABase avait pour objectifs : i) d’identifier la fréquence de la résistance à

la stigmatisation dans les TPSP et les TSA-SDI au sein de la cohorte nationale des centres référents

de réhabilitation psychosociale et de remédiation cognitive ; ii) d’identifier les facteurs associés à

une résistance élevée à la stigmatisation avec leurs implications thérapeutiques.

La dernière étude présente le protocole d’un essai randomisé contrôlé en stepped-wedge sur

l’efficacité de la version française du programme NECT, dont le début est prévu en janvier 2020.

Les objectifs de cet essai sont d’évaluer : i) l’efficacité de NECT sur le fonctionnement social chez

des participants avec TPSP ; ii) l’efficacité de NECT sur l’auto-stigmatisation, les symptômes

psychiatriques, la dépression, le bien-être, la qualité de vie et le rétablissement personnel ; iii) si

l’amélioration éventuelle observée pendant les visites de suivi est prédite par l’insight et le

fonctionnement cognitif à l’évaluation initiale ; iv) si les effets sur les objectifs principaux et

secondaires persistent lors des visites de suivi, à 6 et 12 mois.

Partie II. L’auto-stigmatisation : mécanismes cognitifs et neurobiologiques identifiés dans la

littérature

Contents lists available at ScienceDirect

Psychiatry Research

journal homepage: www.elsevier.com/locate/psychres

Review article

Neural and cognitive correlates of stigma and social rejection in individualswith Serious Mental Illness (SMI): A systematic review of the literature

Dubreucq J.a,b,c,⁎, Franck N.a,d,e,f

a Centre de Neurosciences Cognitive, UMR 5229, CNRS & Université Lyon 1, Franceb Centre Référent de Réhabilitation Psychosociale et de Remédiation Cognitive (C3R), Centre Hospitalier Alpes Isère, 1 place du Conseil National de la Résistance, Grenoble,38400 Saint Martin d'Hères, Francec Fondation FondaMental, Créteil, Franced Réseau Handicap Psychique, Grenoble, Francee Centre Référent Lyonnais de Réhabilitation Psychosociale et de Remédiation Cognitive (CL3R), Centre Hospitalier Le Vinatier, Francef Centre Ressource de Réhabilitation Psychosociale et de Remédiation Cognitive, Centre Hospitalier Le Vinatier, France

A R T I C L E I N F O

Keywords:Cognitive neuroscienceSelf-stigmaStigmaSocial rejectionSevere mental illness

A B S T R A C T

Stigma and self-stigma are major issues for people with Serious Mental Illness (SMI). This review's aims were todetermine the cognitive and neural processes underlying the effects of stigma and social rejection in people with SMI.A stepwise systematic literature review (PRISMA) was conducted by searching PubMed, Medline and Web of

Science using the following keywords: “cyberball” OR “stereotype threat” OR “implicit association test” AND“mental illness”. The articles included met the following criteria: (a) reporting on social rejection, stigma or self-stigma (b) diagnosis of SMI (c) available data on the underlying mechanisms.Our search on July 31th 2018 found in 955 articles on PubMed and 3,362 on Web of Science. Hypersensitivity

to acute social rejection was found and associated with more self-related negative emotions and more dys-functional emotion regulation strategies. People with SMI under-performed in cognitive tasks when confrontedwith stigma. Stigma resistance was described with its neural correlates. Psychiatric symptoms, duration of illnessand baseline non-specific distress influenced the response to acute social rejection or stigma. The samples,methods, and reported outcomes were heterogeneous and difficult to compare. Future studies should investigatethe associations between self-stigma and responses to acute and chronic social rejection.

1. Introduction

Stereotypes can be defined as common social knowledge shared bypeople from the same cultural background. They make it possible torapidly identify and categorize the individuals with whom one interactsand contribute to understanding social situations and shaping beha-vioral responses (Krendl et al., 2006). Stigma occurs when stereotypesgenerate negative emotional responses and behaviors towards themembers of a group – or towards oneself in the case of self-stigma(Corrigan and Watson, 2002). Self-stigma - or Internalized Stigma (IS) -is an identity transformation process wherein a person's previously heldsocial identity (defined by social roles such as son, brother, sister,friend, employee or potential partner) is progressively replaced by adevalued and stigmatized view of oneself termed “illness identity”(Yanos et al., 2008). Stigma Resistance (SR) is defined as one's ability todeflect or challenge stigmatizing beliefs (Thoits, 2011).

According to the US Substance Abuse and Mental Health ServicesAdministration, individuals with “Serious Mental Illness” (SMI) are“persons aged 18 or older who currently or at any time in the past yearhave had a diagnosable mental, behavioral, or emotional disorder(excluding developmental and substance use disorders) of sufficientduration to meet diagnostic criteria specified within DSM-IV that hasresulted in serious functional impairment, which substantially inter-feres with or limits one or more major life activities such as maintaininginterpersonal relationships, activities of daily living, self-care, em-ployment, and recreation”. Serious Mental Illnesses (SMI;SAMSAH, 2014) include schizophrenia (SZ), bipolar disorder (BD), andborderline personality disorder (BPD), as well as Major DepressiveDisorder (MDD) and Anxiety Disorders that cause severe and persistentfunctional impairments. SMI are frequent (1% for SZ; 1.5% for BD;1.5% for BPD) and heavily stigmatized (Angermeyer et al., 2013;Ellison et al., 2013). People with SZ, BD or MDD are more likely to

https://doi.org/10.1016/j.psychres.2019.02.023Received 18 November 2018; Received in revised form 9 February 2019; Accepted 9 February 2019

⁎ Corresponding author at: Centre Référent de Réhabilitation Psychosociale et de Remédiation Cognitive (C3R), Centre Hospitalier Alpes Isère, 1 place du ConseilNational de la Résistance, Grenoble, 38400 Saint Martin d'Hères, France.E-mail address: [email protected] (D. J.).

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experience discrimination in a range of aspects of their daily life(Thornicroft et al., 2009; Farrelly et al., 2014; Lasalvia et al., 2013).They frequently expect to be discriminated in social contexts even whenthey have no previous experience of discrimination (Thornicroft et al.,2009; Farrelly et al., 2014; Lasalvia et al; 2013). Internalized Stigma(IS) is frequent (41.7% of the 1229 participants with SZ and 21.7% ofthe 1182 participants with BD in the 2010 GAMIAN-Europe study hadmoderate to high levels of self-stigma; Brohan et al., 2010, 2011) andassociated with multiple negative consequences: lower therapeuticadherence, self-efficacy, self-esteem, empowerment and hope and agreater intensity of depressive symptoms and suicidal ideation(Livingston and Boyd, 2010; Ellison et al., 2013). Stigma resistanceconcerns a wide range of people with SMI (49.2% of the 1229 partici-pants with SZ and 49.7% of the 1182 participants with BD in the 2010GAMIAN-Europe study had moderate to high levels of self-stigma;Brohan et al., 2010, 2011). It was associated with higher levels ofmetacognitive abilities, self-efficacy, self-esteem, empowerment, hope,personal recovery and subjective quality of life (Nabors, 2014;Firmin et al., 2016). Several psychosocial interventions (mainly com-binations of psychoeducation and Cognitive Behavior Therapy (CBT))have been designed to reduce IS and its impact on clinical and func-tional outcomes, with preliminary results on IS, insight, and self-effi-cacy. Their impact on functional brain connectivity remains unknownto date.

Public stigma, i.e. the relatively automatic cognitive and behavioralresponse in a social context cued by a characteristic related to a stig-matized group (Krendl et al., 2006), is the most documented area in theliterature (Krendl et al., 2013; Reihl et al., 2015). The processes leadingto negative or stigmatizing attitudes towards individuals with SMI wereinvestigated and showed the role of the SZ diagnosis, persistent nega-tive symptoms, and functional impairments (mostly on social skills)play in participants’ emotional reactions when interacting with peoplethey believed to have SZ (Penn et al., 2000; Heenan et al., 2014). Moresevere negative symptoms and poorer social skills were associated withhigher perceived strangeness and desire for social distance when in-teracting with individuals with SZ (Penn et al., 2000).

In contrast with public stigma (or endorsement of negative beliefsand discriminating attitudes by the general population), personalstigma refers to the beliefs experiences and attitudes towards mentalillness endorsed by the members of a stigmatized group, in this casepeople with SMI (Gerlinger et al., 2013). It includes perceived stigma(or one's beliefs and anticipations about the perception and attitudes ofthe general population towards persons with mental illness), experi-enced stigma (or the actual experiences of social discrimination lived bythe persons with mental illness) and self-stigma. In a recent study an-ticipated social discrimination mediated the relationships between ex-perienced stigma and self-stigma (Quinn et al., 2015), showing thatthese concepts may be interrelated. Three experimental paradigms wereused in the literature to investigate the cognitive and neural mechan-isms underlying personal stigma. Implicit association tests(Greenwald et al., 2009) and stereotype threat conditions directly ad-dressed stigma or self-stigma and the cyberball game was used to in-vestigate social exclusion, a stigma-related concept.

Implicit association tests (IAT) are commonly used to assess implicitself-associations, emotional reactions and attitudes towards a conceptor a population, as they are less influenced than explicit measures bysocial desirability biases and have good psychometric properties(Greenwald et al., 2009). IAT assess the strength of association betweenconcepts by measuring response latencies during computerized cate-gorization tasks: the quicker the stimuli are classified, the more likelythey are to match the respondent's associations with a target concept(Greenwald et al., 2009). IAT are particularly well-suited to in-vestigating automatically activated reactions towards stigmatized in-dividuals, as these reactions can influence outcomes, and because de-liberately endorsed stereotypes and negative attitudes towardsstigmatized individuals have become less acceptable (Greenwald et al.,

2009). IAT was used to assess automatic stereotyping and negativeemotional reactions towards individuals with SMI in the general po-pulation (Peris et al., 2008; Heenan et al., 2014), in mental healthprofessionals (Stull et al., 2013), and in participants diagnosed with SZor BD (Teachman et al., 2006; Rusch et al., 2010a, 2011a).

The stereotype threat (ST) model is a popular experimental para-digm in social psychiatry that has been used in numerous studies con-cerning discriminated populations and minorities (Derks et al., 2008).The ST paradigm refers to situations where one individual is at risk ofconfirming by his/her actions his/her negative stereotypes aboutthemselves or his/her social group (Derks et al., 2008). As an individualcan suffer simultaneously from various forms of discrimination, Shapiroand Neuberg created a multi-threat framework. In this model, self andgroup concept threats imply endorsement by an individual of negativebeliefs about oneself or about one's social group, respectively. Own andgroup reputation threats correspond to one's fear of being identified aspossessing stigmatizing attributes and therefore reinforce negative be-liefs about his/her own social group (Shapiro and Neuberg, 2007).Given the proximity of these concepts to stigma and self-stigma, thenumber of studies using ST in individuals with SMI is surprisinglylimited (Henry et al., 2010; Moritz et al., 2018; Shapiro, 2011).

Social rejection models recreate stigma-related environments underexperimental conditions. The most popular paradigm is the cyberballgame, a ball-tossing game in which participants believe they areplaying with fellow participants, but are in fact randomly assigned toinclusion, exclusion and sometimes over-inclusion conditions and playwith computer-controlled players. Cyberball is considered to be anecologically valid paradigm for evaluating emotional reactions fol-lowing social inclusion or exclusion, and was used in numerous studiesinvolving healthy individuals (Hartgerink et al., 2015). The neuralcorrelates of acute social exclusion/inclusion in healthy controls (HC)are well known (Bolling et al., 2011; Moor et al., 2012 Kawamoto et al.,2012). Enhanced activation of the insula and of the dorsal and ventralanterior cingulate cortex (ACC) during social exclusion was associatedwith self-reported experience of rejection (Bolling et al., 2011; Mooret al., 2012). Enhanced activation of the medio-prefrontal cortex(mPFC), the precuneus and the posterior cingulate cortex during socialexclusion were identified as a potential protective mechanism mod-ulating the affective response to acute social rejection (Bolling et al.,2011; Moor et al., 2012 Kawamoto et al., 2012). Cyberball was used inindividuals with SMI, mostly BPD (Lawrence et al., 2011; Staebler et al.,2011; Domsalla et al., 2014; De Panfilis, 2015; Brown et al., 2017; Euleret al., 2018; Ernst et al., 2018; Weinbrecht et al., 2018).

In summary, the clinical and functional correlates of stigma in in-dividuals with SMI are well known and several strategies have beenrecently developed to reduce stigma and self-stigma (Griffiths, 2015;Wood, 2016). In contrast, there appears to be surprisingly little cogni-tive neuroscience research into mental illness stigma. Only a few stu-dies directly addressed the cognitive and neural processes underlyingself-stigma or stigma resistance in individuals with SMI (Rusch 2010a,2010b, 2011; Raij et al., 2014; Moritz et al., 2018). These mechanismsremain therefore unclear as the data are heterogeneous and come fromvarious sources and different experimental paradigms (some of whichnot even directly related to stigma or self-stigma). To our knowledge,no literature review has yet been conducted on this particular topic.

The present review has two objectives: (i) to review the cognitiveand neural processes underlying the effects of stigma, discriminationand social rejection in individuals with SMI; (ii) to evaluate thestrengths and limits of the current evidence in order to guide futureresearch.

2. Methods

A stepwise systematic literature review (PRISMA guidelines) wasconducted by searching PubMed, Medline and Web of Science forpublished, peer-reviewed papers using the following keywords:

D. J. and F. N.


“cyberball” OR “stereotype threat” OR “implicit association test” AND“mental illness”. The articles included in this review had to meet all thefollowing criteria: (a) reporting on social rejection, stigma, or experi-ences of discrimination; (b) diagnosis of SMI (c) available data on theneural and cognitive mechanisms underlying social rejection, experi-ences of discrimination and stigma or self-stigma.

3. Results

Our search on July 31st 2018 found 955 articles on PubMed and3362 on Web of Science. After manually removing all duplicates, 1209articles were retained. Based on their titles and abstracts, 1153 paperswere excluded for lack of relevance. Most of these articles focused onstigma-related experimental paradigms in healthy individuals or inother discriminated populations. Our search strategy yielded 57 fullpapers. After conducting a full-text analysis of all these papers and afterexcluding those which did not meet the inclusion criteria we ended upwith 34 relevant papers (Fig. 1).

3.1. Neural and cognitive correlates of self-stigma

Nine (23.6%) of the 38 included papers reported directly on self-stigma. However, these studies were characterized by the heterogeneityof samples, methods, and reported outcomes. Two-hundred-fifty-fourpeople with SMI and 148 healthy controls were included. Sample sizesranged from 36 to 135 participants, mean age from 26 to 45 years, andthe proportion of male participants ranged from 12.5% to 75%. Five

studies reported data on the participants’ ethnic origins with a pro-portion of Caucasian participants ranging from 34 to 77% (Teachmanet al., 2006; Rusch, 2010a, 2010b, 2010c, 2011). Four studies in-vestigated a specific psychiatric diagnosis (OCD; Moritz et al., 2018; SZ;Henry et al., 2010; Raij et al., 2014) whereas the other five included abroader range of diagnoses (SZ-spectrum disorders, BD, unipolar MDDand OCD). Seven studies only included outpatients. One only includedinpatients and one did not report the patients’ statuses at inclusion. Themean duration of illness was reported in six studies and ranged from 49months (Raij et al., 2014) to 15 years (Rusch, 2010a, 2010b, 2010c,2011; Henry et al., 2010). The mean number of psychiatric hospitali-zations was recorded in four studies (Rusch, 2010a, 2010b, 2010c,2011) which all came from the same sample. Three studies reporteddata on patients’ current medication status (Henry et al., 2010; Raijet al., 2014; Moritz et al., 2018). Five studies used IAT (Teachman et al.,2006; Rusch 2010a, 2010b, 2010c; Raij et al., 2014), one used LexicalDecision Task (Wittenbrink et al., 2001; Rusch et al., 2011) and two ST(Henry et al., 2010; Moritz et al., 2018). Two studies included f-MRIdata, one acquired during passive emotion viewing with visual stimulifrom the Karolinska Directed Emotional Faces (KDEF) catalogue andone during a visuo-motor rating task with stigma-related and non-stigma related visual stimuli (statements about schizophrenia orcommon cold) (Raij et al., 2014). Results are shown on Table 1.

Two cognitive models of self-stigma and one of stigma resistancewere described. Implicit self-stigma (defined as the combination ofimplicit negative attitudes towards mental illness and low implicit self-esteem; Rusch 2010c) was strongly correlated with explicit self-stigma

Fig. 1. Review process (Prisma flow diagram).

D. J. and F. N.


Table 1

Articles reporting directly on self stigma.

Socio-demographic characteritics Psychiatric history Experimentaldesign

results

n Age(mean)

Sex (%) Ethnicity (%) Education(mean)

Diagnosis Current CM Statut Psychiatric history Treatments

Teachman et al. (2006) 35 SMI36 HC

43 32%women

77%causasian

– 59% psychoticdisorders, 31%mood disorders;31% PD, 13% AD

none Outpatient No – IAT Similar implicit negativebeliefs and attitudes towardsSMI between persons withSMI and controls

Rusch et al. (2011a) 85 SMI50 HC

45 32%women

34%caucasian,58% afro-american

13.5 years 27% SZ, 26%schizoaffectivedisorders, 30% BD,12% unipolar MDD

39% SUD Outpatient YesIllness duration: 15yearsMean number ofhospitalizations= 9

– Lexical DecisionTask

Reduced automaticstereotyping in persons withSMI compared to controls

Rusch et al. (2010a) 85 SMI50 HC

45 32%women

34%causasian

13.5 27% SZ, 26%schizoaffectivedisorders, 30% BD,12% unipolar MDD


– IAT Endorsement of biogeneticcauses (but notneurobiological) of mentalillness is associated toincreased implicit self-guiltand self reported feartowards people with SMI

Rusch et al. (2010b) 75 SMI 44 69% men 34%causasian

13.5 24% SZ, 28%schizoaffectivedisorder, 36% BD,9% unipolar MDD,


– IAT Implicit shame-relatedassociations at baselinepredict increased perceivedlegitimacy of discriminationat 6 months follow-up

Rusch et al. (2010c) 85 SMI 45 68% men 34%causasian

13.5 27% SZ, 26%schizoaffectivedisorders, 30% BD,12% unipolar MDD


– IAT Implicit self-stigma predictslower quality of lifeindependently of explicitself-stigma, depressivesymptoms and psychiatricdiagnosis

Henry et al. (2010) 30 SZ 38 43% men – 13.4 70% SZ, 30%schizoaffectivedisorder

none Outpatient Yes-Mean illnessduration=15.8 years-Mean age of onset=23.1 years

100% atypicalAP;343.2 CE

ST withconversationprobe role playtest

Lower social skills (higherimpairment in initiatingconversations and switchingtopics) under ST

Moritz et al. (2018) 50 OCD 38 (ST),43 (PC)

87.5%women(ST),69.2% (PC)

– 100% OCD notrecorded

Outpatient No 52%Antidepressants

ST Lower executive functioningunder ST

Lindner 38 SZ42 HC

30 61% men(SZ) 67.5%(HC)

– 13.1 100% SZ BDI 12.7STAI 46.4

Inpatient YesMean illness duration:6.8 years

– Passive emotionviewing duringfMRI

Reduced insula activation tosubtle expressions of disgustand positive correlationbetween insula activationand social loneliness inparticipants with SZ

(continued on next page)

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and identified as a predictor of subjective quality of life (Rusch, 2010c).Social alienation (or high perceived social loneliness associated withlow personality trait agreeableness) was associated with reduced insulaactivation in participants with SZ when processing covert expressions ofdisgust. According to the authors, this reflected a decreased sensitivityto subtle signals of social rejection that might protect individualsagainst social alienation. There was however also a negative associationbetween insula responsiveness to subtle facial expressions of disgustand low agreeableness in the control group.

Stigma resistance (defined as low negative implicit associationsbetween SZ and social inferiority) was associated with the enhancedactivation of rvmPFC and decreased activation of the amygdala(Raij et al., 2014). Acute social rejection, low stigma resistance, and STconditions led to underperformance in cognitive or social cognitivetasks (Raij et al., 2014; Moritz et al., 2018) and in social skills(Henry et al., 2010) in people with SMI. The associations between self-stigma, cognitive performance and social functioning are however un-clear as self-stigma did not influence cognitive performance under STconditions in people with OCD (Moritz et al., 2018) and was not re-corded in the study by Henry et al. (2010).

3.2. Neural and cognitive correlates of social rejection

The consequences of social rejection were investigated in 25 studies(65.7%), with varying samples, methods, and reported outcomes. Mostof the 629 participants in the experimental groups had BPD (19 studies;n=475; 75.5%), the other diagnoses represented were SZ (n=55;8.7%; Gradin et al., 2012; Engel et al., 2016), a high clinical risk ofpsychosis (CHR; n=25; 3.9%), SAD (n=23; 3.6%; Heeren et al.,2017), MDD (n=15; 2.3%; Kumar et al., 2017) and suicide attempters(SA; n=36; 5.7%; Olié et al., 2017). No studies were conducted spe-cifically on people with BD. However, four studies recruited partici-pants with type I or II BD in their experimental group (10 to 56% of thetotal sample; Domsalla et al., 2014; Renneberg et al., 2012; Bungertet al., 2015; Olié et al., 2017). All studies recruited healthy controls(HC). Seven studies had also patient controls (PC) with SAD (Gutz et al.,2015, 2016; Weinbrecht et al., 2018), AD, MDD (Ernst et al., 2018; Oliéet al., 2017) or non-suicidal self-injury (Brown et al., 2017). Samplesizes ranged from 32 to 122 participants, mean age from 19 to 45 yearsand the proportion of female participants from 15.4% to 100%. Edu-cation level was reported in 16 studies and ranged from 10.61 to 15.7years of education. Three studies reported data on the participants’ethnic origins with a proportion of Caucasian participants ranging from49 to 80% (Ruocco et al., 2010; Gratz et al., 2013). Eleven studies wereconducted on outpatients only, five on stabilized inpatients (admittedto receive specific psychotherapy), four had mixed samples and five didnot report the participants’ status at inclusion. Almost all studies re-corded current psychiatric comorbidities. Eleven studies recorded life-time comorbidities and one recorded the number of past depressive ormanic episodes and the age of onset. Fourteen studies reported data onpatients’ medication with the proportion of participants taking medi-cation at inclusion ranging from 0% to 92%. Most studies used cyber-ball. Two studies added an over-inclusion condition (i.e. a conditionwhere the participant received the ball more often than the otherplayers) to the conventional experimental paradigm (De Panfilis, 2015;Weinbrecht et al., 2018) and one a re-inclusion condition (Heeren et al.,2017). One study used implicit and explicit emotion processing tasks(Schienle et al., 2015) and one an emotion reappraisal task during f-MRI (Koenigsberg et al., 2009). Two studies included biological mea-sures (oxytocin and cortisol dosages; Jobst et al., 2014,2016), ten stu-dies f-MRI (Koenigsberg et al., 2009; Ruocco et al., 2010; Gradin et al.,2012; Domsalla et al., 2014; Bungert et al., 2015; Schienle et al., 2015;Kumar et al., 2017; Heeren et al., 2017; Olié et al., 2017; Brown et al.,2017), two EEG (Gutz et al., 2015; Weinbrecht et al., 2018) and twocognitive assessments (Go-No Go; Reading Mind in the Eyes Test). Theresults are presented in Table 2.T

able1(continued)

Socio-demographiccharacteritics

Psychiatrichistory

Experimental

design

results

nAge(mean)

Sex(%)

Ethnicity(%)

Education

(mean)

Diagnosis

CurrentCM

Statut

Psychiatrichistory

Treatments

Raijetal.(2014)

20SZ

16HC

Patients

26Controls

28

Patients

70%men

Controls

75%men

–13

100%SZ

25%MDD,

20%OCD,

10%SAD,

15%PD

Notrecorded

YesMeanillnessduration:

49months

100%AP

(575CE)

IAT

Visuom

otor

ratingtask

duringfMRI

-Lowerimplicitnegative

associationsinpatientsin

comparison

withcontrols

-Negativecorrelation

betweenimplicitassociations

androstroventralmedio-

prefrontalcortex

-Negativecorrelation

betweenrostroventralmPFC

activation

andright

amygdalaactivation

AD:AnxietyDisorders;AP:Antipsychotics;BD:BipolarDisorders;BDI:BeckDepressionInventory;CE:ChlormoprazineEquivalent;CM:Com

orbidities;fMRI:FunctionalMagneticResonanceImaging;HC:Healthy

Controls;IAT:ImplicitAssociationsTest;MDD:MajorDepressiveDisorder;mPFC:MedioPrefrontalCortex;OCD:ObsessiveCom

pulsiveDisorder;PC:PatientControls;PD:PersonalityDisorder;SAD:SocialAnxiety

Disorder;SM

I:SevereMentalIllness;ST:StereotypeThreat;STAI:SpielbergerTraitAnxietyInventory;SUD:SubstanceUseDisorder;SZ:Schizophrenia.

D. J. and F. N.


Table 2

Articles on social rejection in SMI.


Results

n Age (mean) Sex (%) Education(mean)

Diagnosis Current CM Statut Psychiatrichistory

Treatments

Staebler et al. (2011) 35 BPD33 HC

27.88 to 32.11 100%women

10.61 100% BPD 20% PTSD Inpatients YesPast 54% MDD,37% SUD

34.28% AD ;31.4% AP28.57% none

Cyberball Women with BPD reported morefeeling excluded when includedand had less positive andincreased negative emotionswhen excluded

Lawrence et al. (2011) 30 BPD22 HC

18.56 to 19.33 86 to 90%women

– 75% full BPD;25% sub-thresholdBPD

63% MDD, 46%PTSD; 73% AD

Outpatients No 66.6% AD,7.4% BZD,3.5% AP

Cyberball No difference in mood ratingafter social exclusion betweenyoung adults with BPD andhealthy controls

Renneberg et al. (2012) 30 BPD30 HC

28.8 BPD29.03 HC

86.7%women

10.6 100% BPD 30% MDD, 3.3%BD; 60% SUD,43.3% AD, 36.7%PTSD, 50% ED

Inpatients YesPast MDD 50%

60% AD, 23.3%AP, 10% MS,20% none

Cyberball -More reported exclusionfeelings during social inclusionand exclusion in BPD-More reported anger duringsocial exclusion in BPD

Gratz et al. (2013) 53 BPD34 HC

– 72%women(BPD),50% (HC)

– 100% BPD none Outpatients No not recorded Cyberball -Hypersensitivity to socialrejection and heightened threatto all social needs in BPD-Emotion dysregulationmediated the relationshipbetween BPD and response tothe task

Gutz et al. (2016) 25 BPD25 SAD25 HC

25 to 28 84 to 92%women

11.57 100% BPD 12% MDD, 8%SAD, 24% PTSD,24% ED, 8%dysthymia

Inpatients YesPast 48% MDD

not recorded Cyberball -Increased self-focused negativeemotions in both SAD and BPD-Increased hostile intentattributions in BPD

De Panfilis et al. (2015) 61 BPD61 HC

40.2 BPD37.6 HC

77%women(BPD) and70.5%(HC)

14.8%college /university

100% BPD 36% MDD, 18%ED, 4.9% AD, 3.3%adjustmentdisorder, 44.3%other PD

Outpatients No not recorded Cyberball Greater levels of negativereported emotions during socialexclusion, inclusion but notduring overinclusion in BPD

Euler et al. (2018) 23 BPD28 HC

27.9 BPD25.7 HC

87%women(BPD),85% (HC)

12.8 100% BPD 34.8% MDD, 8.7%AD, 26.1% SUD,13% ED, 8.7% SUD

Inpatients No 69.6% onmedication

Cyberball Higher threat to social needslevels after social exclusionpredicted lower therapeuticalliance in mentalization-basedgroup therapy

Ernst 22 MDD22 MDD+BPD20 HC

26.73 to 30.5 100%women

25% collegestudents

100% BPD Mean BDI 37.4MDD+ BPD; 33MDD

Not recorded No 40% AD Cyberball andGo-No Go task

-Lower response inhibition inBPD+MDD and correlationwith childhood trauma-No improvement of responseinhibition during socialexclusion in BPD +MDD

Savage 17 BPD16 HC

19.65 BPD19.41 HC

56.3% to64.7%women

– 100% BPD Mean BDI 21.0,STAI 95.47

Students No Not recorded Cyberball andRMIE test

Lower ability to identifycorrectly neutral faces aftersocial exclusion in young adultswith BPD features

Gutz et al. (2015) 25 BPD25 SAD25 HC

25 to 28 84 to 92%women

11.57 100% BPD 12% MDD, 8%SAD, 24% PTSD,24% ED

Inpatients YesPast 48% MDD

– Cyberball andEEG

More reported feelings ofexclusion and enhanced P3bduring social inclusion in BPD

Weinbrecht et al. (2018) 29 BPD28 SAD28 HC

27.86 to 28.86 79 to 86%women

– 100% BPD 7% MDD, 55% AD,4% SAD,7% otherPD

62%inpatients forBPD

YesPast CM: 48%MDD

35% AD Cyberball andEEG

-Enhanced P3 amplitude in SADand BPD compared to controls inall conditions-Stronger self-reported ostracism


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Table 2 (continued)


Results



Treatments

during social exclusion /inclusion but not overinclusionin SAD and BPD compared tocontrols-Higher self-reported threats tosocial needs in all conditions inBPD

Ruocco et al. (2010) 10 BPD10 HC

22.1 BPD19.0 HC

100%women

13.2 100% BPD 30% MDD, 20%AD, 10% PTSD

Not recorded No 80% none, 10%AP, 10%stimulants

fMRI duringcyberball

Left hyperactivation of themPFC in BPD during socialexclusion

Domsalla et al. (2014) 20 BPD20 HC

29.2 BPD28.7 HC

100%female

12.1 90% BPD, 10%BPD+ type II BD

25% PTSD, 75%AD, 40% ED

Outpatients YesPast 90% MDD,25% PTSD,60% AD, 5% ED

– Cyberball andfMRI

- Higher reported exclusionfeelings during social inclusiontask and control condition inBPD- No changes depending on theinteraction situation (exclusion/inclusion) in insula andprecuneus responsiveness inBPD

Brown et al. (2017) 15 BPD+NSSI14 NSSI31 HC

23.3 BPD+NSSI15.4 NSSI14.5 and 23.2adolescent/adult HC

76.9% to100%women

– 100% BPD 100% MDD, 50%PTSD,14.2% AD,7.1% ED

In andoutpatients

YesMean numberof NSSI: 308.5(BPD) and128.8 (NSSI)

85% AD, 7.1%MS

Cyberball f-MRI -Enhanced feelings of socialexclusion in patients groups-Enhanced activation in ventralanterior cingulate cortex inpatients groups-Enhanced activation indorsolateral and mPFC duringsocial inclusion in BPD

Bungert et al. (2015) 20 BPD20 HC

29.2 BPD28.7 HC

100%women

12.1 90% BPD, 10%BPD+ type II BD

25% PTSD, 35%AD, 25% SAD, 5%ED

Outpatients YesPast 90% MDD,25% PTSD;75% AD; 35%SUD

– Cyberballf-MRI

-Reduced amygdala activationduring pain after social inclusionin BPD-Association between higherrejection sensitivity and loweractivation differences duringphysical pain processing inamygdala and insula afterinclusion / exclusion in BPD

Jobst et al. (2014) 22 BPD21 HC

100% women 100%women

– 100% BPD – Not recorded No 68.1% AD ;63.6% AP ;36.3% MS

Cyberball andoxytocin andcortisol dosages

-No differences in cortisolplasma concentrations betweenBPD and controls-Negative association betweenphysical and emotional abuseand return of oxytocin levels atbaseline after social exclusion

Jobst et al. (2016) 20 BPD20 HC

30 BPD29.71 controls

100%women

11.20 100% BPD Mean BDI 32.7525% MDD15% ED

70%outpatients

No 75% AD, 70%AP, 40% MS

Cyberball andoxytocin andcortisol dosages

-No differences in cortisolplasma concentrations betweenBPD and controls-Lower oxytocin concentrationsin BPD patients withdisorganized attachmentrepresentations compared toother BPD

Olié et al. (2017) 37.6 to 39.48 14 SA, 15 PC Inpatients Cyberball f-MRI


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Table 2 (continued)


Results



Treatments

36 SA41 PC28 HC

100%women

56% BD in SAgroup; 36% in PC

SA group, 39.2% AD, 16.8SAD, 2.8% PTSD,16.8% ED,PC groupBD, 36% AD, 4.8%SAD, 12% ED;

Yes- Mean numberof depressiveepisodes: 3.5- Mean numberof manicepisodes: 1- Age of onsetfirst SA: 22- Past CM:25.2% SUD

33.6% onmedication(SA); 38.4%(PC)

-Higher reported social distressin patients groups-Decreased contrast in the leftinsula and supramarginal gyrusduring the exclusion vs inclusioncondition

Gradin et al. (2012) 15 SZ20 HC

41.23 SZ40.87 HC

84.6%men (SZ)77.7%(HC)

– 100% SZ Mean BDI 17.43 Outpatients No Not recorded Cyberball fMRI Increased activation of themPFC cortex during socialexclusion in HC but not in SZpatientsAssociation between positivesymptoms severity and bluntedresponse to exclusion in SZ

Engel et al. (2016) 40 SZ40 HC

36.32 SZ26.45 HC

50%women

11.1 77.5% SZ, 17.5%schizoaffectivedisorder

– Inpatients No 92.5% AP Cyberball More intense negativeanticipations before cyberball inpatientsLess intense positive emotionsduring social inclusion inpatients

Lincoln 25 CHR40 AD40 HC

34.72 CHR,40.3 HC, 42.2AD

62.5 to72%women

15.7 76% APS8% GR16% both

96% mooddisorders, 36% AD,16% PTSD, 8%SUD; 8% OCD

Outpatients No 52% onmedication,16% AP

Cyberball Stronger increase in paranoidbeliefs after social exclusion inCHR mediated by lower levels offunctional / higher levels ofdysfunctional emotionregulation and by higher self-reported negative emotions

Heeren et al. (2017) 23 SAD23 HC

24.96 SAD25.30 HC

100%women

13.3 100% SAD Mean BDI : 15.7 ;STAI : 51.04 ;LSAS : 74.2

Inpatients No Not recorded Cyberball fMRI -Higher reported feelings ofsocial exclusion in patients-Higher activation within theleft inferior frontal gyrus duringre-inclusion phase.-Correlation between andfeelings of exclusion andcerebral activation

Kumar et al. (2017) 15 MDD17 HC

45.27 MDD41.8 HC

60%women(MDD)58% (HC)

– Not recorded Mean BDI: 22.9;STAI: 54.6

Outpatients No – Cyberballf-MRI

Greater amygdala, insula andventrolateral prefrontal cortexactivation to increasing socialexclusion in patients

AD: Anxiety Disorders; AP: Antipsychotics; APS: Attenuated Positives Symptoms Syndrome; BD: Bipolar Disorders; BDI: Beck Depression Inventory; BPD: Borderline Personality Disorder; CHR: Clinical High Risk; CM:Comorbidities; ED: Eating Disorder; EEG: Electroencephalogram; GR: Genetic Risk And Deterioration Syndrome; HC : Healthy Controls; fMRI: Functional Magnetic Resonance Imaging; LSAS: Leibowitz Social AnxietyScale; MDD: Major Depressive Disorder; mPFC: Medio Prefrontal Cortex; MS: Mood Stabilizers; NSSI: Non Suicidal Self-Injury; PC: Patient Controls; PD: Personality Disorder; PTSD: Post-Traumatic Stress Disorder; RMIE:Reading Mind In the Eyes test; SA: Suicide Attempters; SAD: Social Anxiety Disorder; STAI: Spielberger Trait Anxiety Inventory; SUD: Substance Use Disorder; SZ: Schizophrenia.

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The relationships between acute social rejection and self-stigma arestill largely unknown. However, acute social exclusion results in greatersocial distress, more negative emotions (i.e. self-blame, more internalattributions, decreased feeling of control) and less use of functionalemotion regulation strategies in people with SMI (Staebler et al., 2011;Gratz et al., 2013; Olié et al., 2017). The response to social rejectionwas influenced by the psychiatric diagnosis and might be stigma-re-lated. In people with SZ, the results are controversial. Some studiessupported the hypothesis that reduced sensitivity to social rejectionmight be related to social cognition deficits (Gradin et al., 2012) andprotect against social alienation. However, another study found similarnegative emotions during social exclusion, less positive emotionsduring social inclusion and increased negative expectations before thetask (Engel et al., 2016). According to the authors, the decrease inpositive emotions during inclusion was related to social anhedonia andincreased negative expectations before exclusion, due to higher an-ticipatory social anxiety (Engel et al., 2016). Hypersensitivity to socialrejection and increased paranoid beliefs during social exclusion werefound in people with CHR and were mediated by difficulties withemotion regulation and self-blaming. The potential role of self-stigmaand of experienced or anticipated discrimination cannot be determined,as these variables were not recorded.

Almost all studies of BPD participants found a hypersensitivity tosocial rejection during both social exclusion and social inclusion. Thishypersensitivity was associated in some studies with enhanced P3amplitudes and with enhanced activation within the salience network(dorsal anterior cingulate cortex (dACC), dorsal medio prefrontal cortex(dmPFC) and precuneus), supporting the hypothesis of an alteredmodulation of the affective response to social rejection in people withBPD (Gutz et al., 2015; Weinbrecht et al., 2018; Ruocco et al., 2010;Domsalla et al., 2014; Brown et al., 2017). Participants with BPDshowed an enhanced activation of the amygdala when processing dis-gusted faces, this activation being associated with self-disgust. Emotionregulation difficulties were also found in people with BPD with loweramygdala deactivation and lower recruitment of the brain areas in-volved in cognitive reappraisal in HC (Koenigsberg et al., 2009). Self-stigma, anticipated social discrimination and stigma resistance mighttherefore play a role in the response to social rejection in people withBPD, but their potential role remains unknown to date. Hypersensitivityto social rejection was also found in people with MDD and SAD, withincreased difficulties recovering from social rejection in those withSAD. There were no direct correlations with stigma or self-stigma.

3.3. Predictors of the response to stigma and social rejection

Socio-demographic characteristics (age, sex, ethnicity, educationlevel), current and past psychiatric comorbidities, current psychotropicmedication, insight into illness and global functioning did not appear toinfluence the cognitive mechanisms underlying the effects of stigma orsocial rejection on people with SMI (Rusch, 2007; 2010a, 2010b, 2010c,2011a,2011b; Ruocco et al., 2010; Staebler et al., 2011; Lawrence et al.,2011; Gratz et al., 2013; Raij et al., 2014; Brown et al., 2017; Ernstet al., 2018; Euler et al., 2018). Group identification, implicit shame-related self-associations and implicit self-guilt did however contributeto self-stigma and to a lesser ability to resist stigma (Rusch, 2010a,2010b, 2010c). The endorsement of genetic causal attributions aboutmental illness increased implicit self-guilt in individuals with SMI(Rusch 2010a) which has implications when designing anti-stigmacampaigns or psychoeducation interventions for people with SMI(Rusch, 2010a). The psychiatric diagnosis did not influence implicitstigma-related self-negative associations in people with SMI (Rusch2010a, 2010b, 2010c, 2011a). It did however influence the response tosocial rejection (Rusch, 2007; Staebler et al., 2011; Renneberg et al.,2012; Gratz et al., 2013; Gutz et al., 2015, 2016; Domsalla et al., 2014;De Panfilis, 2015; Engel et al., 2016; Weinbrecht et al., 2018). Thisconcurs with the literature on explicit self-stigma, which is more

frequent in people with SZ (Brohan et al., 2010,2011) but affects clin-ical and psychosocial outcomes in all people with SMI (Livingston andBoyd, 2010). Psychiatric symptoms influenced self-perceptions assymptomatic BD participants had more implicit negative self-associa-tions (Jabben et al., 2014). The number of BPD features influencedsocial-cognitive performance after social rejection in people with BPDand the severity of positive symptoms affected the response to socialrejection in participants with SZ (Gradin et al., 2012). Illness durationaffected negatively stigma resistance (Raij et al., 2014). There were nosignificant differences between inpatients and outpatients with SZ intheir response to social rejection (Engel et al., 2016). The participants’social networks did not influence the response to social exclusion inpeople with BPD (Gratz et al., 2013). Baseline non-specific distress wasassociated with elevated distress during social exclusion (Gratz et al.,2013) suggesting that chronic social rejection might affect the responseto acute social rejection and contribute to social alienation (Gutz et al.,2016). A history of trauma influenced the biological and behaviouralresponse to social rejection (Jobst et al., 2015, 2016; Ernst et al., 2018)and was associated with more shame-related self-associations in peoplewith BPD (Rusch et al., 2011a). However, emotion processing whenconfronted with disgusted faces (Schienle et al., 2015) and when dis-tancing from negative social cues (Koenigsberg et al., 2009) were notaffected by a history of trauma. A history of suicidal acts influenced theresponse to social rejection in people with SMI (Olié et al., 2017).

4. Discussion

Overall, the results of the present review can be summarized asfollows: Acute social rejection and its consequences on individuals withSMI were the most documented area (25 studies). Hypersensitivity toacute social rejection was found in almost all the studies includingpeople with SMI and was associated with more self-related negativeemotions and with the use of less functional and more dysfunctionalemotion regulation strategies. Enhanced activation within the saliencenetwork was associated with hypersensitivity to acute social rejection.Hypersensitivity to social rejection resulted in an increase in paranoidbeliefs in people with CHR. Reduced sensitivity to acute social rejectionand reduced activation within the salience network were, however,found in people with SZ and could be related to social cognition deficitsor act as a protection mechanism against social alienation. Individualswith SMI under-performed in cognitive and social cognitive tasks whenplaced in stigma-related environments. Stigma resistance was asso-ciated with enhanced activation of the rostro-ventral medio prefrontalcortex (rvmPFC) and decreased activation of the amygdala in peoplewith SZ. Psychiatric symptoms, illness duration and baseline non-spe-cific distress influenced the response to acute social rejection or stigma.The potential role of chronic social discrimination and its effects onpeople with SMI should be further investigated.

The existing body of research on the cognitive neuroscience ofstigma in individuals with SMI has several limitations. Only a fewstudies directly addressed the consequences of self-stigma on peoplewith SMI. The samples, methods, experimental paradigms and reportedoutcomes used in the studies were heterogeneous and therefore difficultto compare. The results mostly came from individual studies that havenot yet been replicated. The cognitive and neural correlates of personalstigma remain largely unknown and should therefore be further in-vestigated. Neuroimaging studies may add to the knowledge about theneural mechanisms underlying personal stigma and stigma resistance.Personal stigma is however a complex construct difficult to modelprecisely in cognitive neuroscience. Studying the effects of experiencedand anticipated social discrimination on brain functional connectivityand biological inflammatory response in persons with SMI might im-prove the understanding of the mechanisms underlying personal stigmabut future research will be needed.

D. J. and F. N.


4.1. Relationships between acute social discrimination and self-stigma

The relationships between acute social rejection and self-stigma areunclear, as most studies did not record self-stigma. Implicit and explicitself-stigma predicted subjective quality of life (Rusch, 2010c;Livingston and Boyd, 2010). As expected, individuals with SMI under-performed in cognitive and social cognitive tasks under stigma-relatedconditions (stereotype threat or acute social rejection). This supportsprevious findings that explicit self-stigma is associated with lowercognitive, social and vocational functioning (Yanos et al., 2010;Hill and Startup, 2013). Individuals with SMI showed higher rejectionexpectancy and anticipatory anxiety before social exclusion. They hadalso more self-related negative emotions during social exclusion and anincreased tendency to use avoidant strategies after being excludedwhen compared with HC (Gratz et al., 2013; Gutz et al., 2015,2016;Engel et al., 2016). This may back up previous research where antici-pated social discrimination mediated the relationship between experi-enced discrimination and self-stigma in individuals with SMI(Quinn et al., 2015), and where self-stigma predicted social anxiety inpeople with SZ (Lysaker et al., 2010) and was associated with avoidantcoping strategies (Vauth et al., 2007). Anticipated social discriminationand self-stigma may influence the response to social rejection and theirpotential role should therefore be investigated further. In people withCHR, social exclusion was associated with hypersensitivity to acutesocial rejection and increased paranoid beliefs that were mediated byemotion regulation difficulties and self-blaming. This might be relatedto self-stigma, associated with hypersensitivity to social rejection andparanoid delusions in a cognitive model of self-stigma in psychosis(Wood et al., 2017). Two studies found reduced sensitivity to socialrejection and reduced activation within the salience network in peoplewith SZ (Gradin et al., 2012). This might relate to social cognitiondeficits (Gradin et al., 2012) and protect against social alienation. Itmight, however, also more generally reflect the salience network dys-function described in people with SZ (Palaniyappan et al., 2012). The“insight paradox” described by P. Lysaker (association between de-pression and good insight) and its relationships with social cognitionand emotion regulation abilities might also explain the differencesobserved in people with SZ (Lysaker et al., 2007,2013). The presence(or the absence) of metacognitive deficits impeding one's abilities todeflect negative beliefs about oneself can also be a potential explainingfactor (Nabors et al., 2014). The relationships between social cognition,metacognitive abilities, self-stigma and the response to acute socialrejection should therefore be further investigated.

Although very few studies reported on self-stigma in BPD, there issome evidence supporting its potential role in moderating the responseto acute social rejection. Participants with BPD showed an enhancedactivation of the amygdala when processing disgusted faces, this acti-vation being associated with self-disgust. As implicit self-disgust con-tributed to self-stigma by increasing the perceived legitimacy of dis-crimination and by decreasing the ability to resist stigma(Rusch, 2010b), this hypersensitivity to social rejection in people withBPD might be stigma-related. Emotion regulation difficulties in peoplewith BPD were associated with lower deactivation of the amygdala andlower recruitment of the brain areas involved in cognitive reappraisal inHC (Koenigsberg et al., 2009). Although affect dysregulation is a keyfeature of BPD, it has been suggested that this mechanism might also berelated to the internalization of psychiatric disorders or early-life mal-treatment (Gunderson et al., 2018). In contrast stigma resistance wasassociated with preserved cognitive performance in people with SZ. Thef-MRI showed SR to be associated with enhanced activation of therostro-ventral medio prefrontal cortex (rvmPFC) and decreased amyg-dala activation in people with SZ after controlling for global func-tioning, insight and depressive symptoms (Raij et al., 2014). As thervmPFC was identified as a regulator of the affective response to socialexclusion (Eisenberger, 2004) this could be one of the mechanismsbehind stigma resistance (Raij et al., 2014). Self-stigma, anticipated

social discrimination, stigma resistance, and social cognition andemotion regulation ability might influence the response to acute socialrejection and their potential role should be investigated in future stu-dies.

4.2. Implications for future research

Several predictors of the response to stigma or acute social rejectionwere identified. Self-stigma was influenced by group identification,implicit shame-related self-associations and implicit self-guilt, but notby psychiatric diagnosis, psychiatric comorbidities or socio-demo-graphic characteristics. The association between implicit shame-relatedself-associations and self-stigma is also found in a previous study whereexplicit shame-proneness was identified as a mediator between insightand self-stigma (Hasson-Ohayon et al., 2012). Stigma resistance wasnegatively affected by illness duration in accordance with previousresults (Sibitz et al., 2011a). The response to social rejection was notinfluenced by the participants’ status or social network in people withSZ and BPD (Gratz et al., 2013; Engel et al., 2016). Further investigationis however needed, as inpatient status and reduced social network wereassociated with decreased stigma resistance in people with SZ(Sibitz et al., 2011a,2011b). The role of the psychiatric diagnosis inmoderating the response to acute social rejection remains unclear, as allthe studies were diagnosis-specific. The severity of the psychiatricsymptoms influenced the response to acute social rejection. The numberof BPD features influenced social-cognitive performance after socialrejection in people with BPD and the severity of positive symptomsaffected the response to social rejection in participants with SZ(Gradin et al., 2012). This might be stigma-related as self-blaming,social threat processing dysfunctions and self-stigma can underpinparanoid beliefs in people with psychosis (Corlett et al., 2010;Wood et al., 2017) and explicit self-stigma is associated with increasedseverity of positive and depressive symptoms (Livingston and Boyd,2010; Cerit et al., 2012).

Baseline non-specific distress was associated with elevated distressduring social exclusion (Gratz et al., 2013) suggesting that chronic so-cial rejection might affect the response to acute social rejection andcontribute to the development of social alienation (Gutz, 2016). How-ever, research on chronic social rejection is extremely limited in HC andnon-existent in people with SMI. Chronic social rejection was in-vestigated in people without SMI, but confronted with prolonged os-tracism (social rejection > 3-months; Williams, 2009; Riva et al.,2014). In contrast to acute social rejection, chronic social rejection wasassociated with feelings of resignation, helplessness, unworthiness andlow self-worth and ultimately with social alienation and depression(Williams, 2009; Riva et al., 2014). An increased sensitivity to acutesocial exclusion was also found in people suffering from chronic socialrejection (Williams, 2009; Riva et al., 2014). In people at risk of beingostracized, enhanced spontaneous amygdala resting-state activity andincreased connectivity with the salience network were associated with agreater exposure to discrimination, independently of ethnicity, sex orcurrent psychiatric comorbidities. Elevated pro-inflammatory cytokines(Il-6 and TNF-alpha) were associated with enhanced dorsal ACC andanterior insula activation after acute social rejection in HC(Slavich et al., 2010). Exposure to everyday social stressors and to so-cial rejection was associated in HC with elevated inflammatory activityand with MDD (Slavich et al., 2010, 2014; Beatty et al., 2014; VanDyke, 2017). Elevated CRP levels were found in people with SZ, BD orMDD (Miller et al., 2014; Horsdal et al., 2017) and associated withmore severe depressive symptoms in people with SZ (Faugere et al.,2018). However, the correlations between inflammatory activity, ex-periences of discrimination and self-stigma in people with SMI have notbeen investigated to date. Future research should therefore investigatethe potential role of current, past and anticipated social discriminationin the modulation of biological and neural responses to stigma or acutesocial rejection in people with SMI.

D. J. and F. N.


In conclusion, the studies conducted in the last decade have im-proved our understanding of the cognitive and neural correlates ofstigma, self-stigma and acute social rejection in people with SMI.Several potential mechanisms and predictors have been identified andshould be further documented. Future research should investigate theassociations between self-stigma, performance under ST conditions andthe responses to acute and chronic social rejection in people with SMI.Chronic social rejection in people with mental illness and its cognitive,biological and neural correlates should also be further investigated.

Acknowledgement

The authors would like to thank Mrs. Kim Barrett for proofreadingthe manuscript.

Role of the funding source

This research did not receive any specific grant from fundingagencies in the public, commercial, or not-for-profit sectors.

Conflicts of interests

None.

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Partie III. L’auto-stigmatisation dans la littéraure : prévalence, prédicteurs et conséquences

Internalized Stigma in Serious Mental Illness (SMI): a systematic review of prevalence, predictors and

correlates

Running title: Prevalence and correlates of self-stigma in serious mental illness

AUTHORS

Dubreucq Ja,b,c,d

, Franck Na,e,f

a Centre de Neurosciences Cognitive, UMR 5229, CNRS & Université Lyon 1

b Centre référent de réhabilitation psychosociale et de Remédiation Cognitive (C3R), Centre Hospitalier Alpes Isère, Grenoble

c Fondation FondaMental, Créteil, France

d Réseau Handicap Psychique, Grenoble France

e Centre Ressource de Réhabilitation Psychosociale et de Remédiation cognitive, Centre Hospitalier Le Vinatier

f Centre Référent Lyonnais de Réhabilitation Psychosociale et de Remédiation Cognitive (CL3R), Centre

Hospitalier Le Vinatier

Abstract

Background: Self-stigma is associated with poor clinical and functional outcomes in Serious Mental Illness

(SMI). There has been no review of self-stigma prevalence and predictors in diverse cultural areas and SMI.

Aims: i) to review the prevalence, correlates, and consequences of self-stigma in individuals with SMI; ii) to

evaluate the strengths and limitations of the current body of evidence to guide future research.

Methods: A systematic electronic database search (PubMed, Web of Science) following PRISMA guidelines

was conducted on July 4th 2019 on the prevalence, predictors and correlates of self-stigma in SMI.

Results: Of 220 papers, 66 (30%) reported on prevalence rates (n=17 623), 139 (63%) on cross-sectional or

longitudinal predictors of self-stigma and 146 (66%) on the correlates and consequences of self-stigma. On

average 31.5% of SMI patients reported high self-stigma, with the highest prevalence in South East Asia

(39.7%) and the Middle East (39%). High self-stigma was more prevalent in schizophrenia (SZ) (39.3%).

Socio-demographic and illness-related predictors yielded mixed results. Perceived and experienced stigma -

including from mental health providers - predicted self-stigma, which supports the need to develop anti-

stigma campaigns and recovery-oriented practices. Increased transition to psychosis and poor clinical and

functional outcomes are both associated with self-stigma.

Limitations: Excluding studies where self-stigma was not the main focus could have limited the

comprehension of stigma effects on people with SMI

Conclusion: Psychiatric rehabilitation and recovery-oriented early interventions are effective in reducing

self-stigma and should be better integrated into public policy.

Keywords: self-stigma, serious mental illness, prevalence, correlates, psychiatric rehabilitation

Introduction

Schizophrenia, Bipolar Disorder (BD), Borderline Personality Disorder (BPD), major depression (MDD) and

severe anxiety disorders are all Serious Mental Illnesses (SMI), as defined by the US Substance Abuse and

Mental Health Services Administration: “persons aged 18 or older who currently or at any time in the past

year have had a diagnosable mental, behavioral, or emotional disorder (…) that has resulted in serious

functional impairment”1. SMI are frequent (1% schizophrenia; 1.5% BD; 1.5% BPD) and heavily

stigmatized2,3. People with BPD are prone to self-criticism and feelings of shame that can render them more

vulnerable to self-stigma 4. They face high levels of stigma, not only from the general public but also from

mental health professionals5. For a long time, research on stigma in psychiatric disorders focused on public

stigma, or the endorsement of negative beliefs and discriminating attitudes towards individuals by the

general population. Over the last two decades, attention has shifted towards the effects of stigma on

individuals. Perceived stigma is defined as one’s beliefs about the attitudes of the general public towards

people with Severe Mental Illness (SMI). Experienced stigma refers to the experiences of discrimination

individuals with SMI have had or expect to have. Self-stigma- or internalized stigma describes the

transformation process wherein a person’s previous social identity (defined by social roles such as son,

brother, sister, friend, employee or potential partner) is progressively replaced by a devalued and stigmatized

view of one self, known as “illness identity”6. The “illness identity model”6 proposed that self-stigma can

have pervasive effects on outcomes related to recovery from SMI, including self-esteem, hopefulness, social

interaction, employment, and symptom severity. The evidence consistently supports many of this model’s

predictions, including that self-stigma is negatively associated with self-esteem, hope, motivation to achieve

personal life goals, the use of adaptive coping strategies, adherence into treatment, well-being, quality of life,

personal recovery and social function.2,3,6 Self-stigma occurs when a person moves beyond mere awareness

of public stigma to actually agree with it and apply it to themselves7. The stress-coping model or self-stigma

proposed that perceived stigma, rejection sensitivity and negative in-group identification (i.e identification

with one’s stigmatized group) are associated with stigma stress, shame, social anxiety, secrecy and social

withdrawal8,9. Stigma Resistance is defined as a person’s ability to deflect or challenge stigmatizing beliefs

and is positively associated with patient’s outcomes10,11.

There is a growing body of evidence - including meta-analyses - on self-stigma in SMI2,3,12-15. Studies on

internalized stigma have mostly been conducted in Europe or North America (77.5% of the 127 articles2,

schizophrenia being the most common diagnosis (54.3%2). The prevalence of internalized stigma was high in

Europe (41.7% of the 1,229 participants with schizophrenia and 21.7% of the 1,182 participants with mood

disorders had moderate to high levels of internalized stigma in the GAMIAN-Europe study12,13) and North

America (36.1% out of 144 people with SMI 16). Less is known about internalized stigma prevalence in other

geographic areas. The level of self-stigma might vary according to socio-demographic or cultural factors

(e.g. causal attributions of mental illness). The effectiveness of anti-stigma campaigns and self-stigma

reduction interventions could be influenced by cultural factors17,18. The results concerning the socio-

demographic predictors of self-stigma are mixed2,3. Few studies compared internalized stigma at different

stages of illness3 and it is still unclear whether self-stigma is greater in cases of prolonged psychosis

compared to early psychosis, at-risk stages or other SMI diagnoses. To date, there have been no literature

reviews comparing self-stigma prevalence and predictors in different geographical and cultural areas

(Europe, North America, South America, Middle East, South Asia, South-East Asia and Oceania). Similarly,

to our knowledge no literature review has been conducted comparing internalized stigma in at-risk stages,

schizophrenia, BD, MDD, BPD and anxiety disorders. Self-stigma was negatively associated with self-

esteem, self-efficacy, quality of life (QoL) and clinical and functional outcomes2. However, it is difficult to

disentangle the specific effects of self-stigma, as measures of perceived or experienced stigma are often used

to assess the correlates of internalized stigma (43.9% of the 127 studies 2). Most studies were cross-sectional

(86.7% of 127 studies2). The longitudinal effects of self-stigma remain largely unknown. Several

interventions (combinations of psychoeducation and cognitive restructuring in most cases, strategic

disclosure in others) have been designed to reduce self-stigma and its impact on patient’s outcomes, with

preliminary results on self-stigma, insight, self-efficacy, hope, social withdrawal and personal

recovery18,19,20,21,22. Psychiatric rehabilitation brings together a wide range of recovery-oriented

interventions23. Psychiatric rehabilitation could indirectly reduce self-stigma (e.g. through improved

psychiatric symptoms, self-esteem, cognitive, social and vocational functioning) although this remains to be

investigated.

In summary, three reviews have been conducted on self-stigma since 2010, in schizophrenia3 and BD14,15.

One meta-analysis investigated correlates of stigma resistance in SMI11. Several predictors, correlates, and

consequences were identified. To our knowledge, there has been no review of self-stigma prevalence and

predictors in diverse cultural areas and SMI conditions; nor any specific review of self-stigma, excluding

explicitly perceived or experienced stigma. The effects of non-specific recovery-oriented practices on self-

stigma remain largely unknown. The present review has two objectives: i) to review the prevalence,

correlates, and consequences of self-stigma in individuals with SMI; ii) to evaluate the strengths and

limitations of the current body of evidence to guide future research.

Methods

A stepwise systematic literature review (PRISMA guidelines)24 was conducted by searching PubMed,

Medline and Web of Science for published and peer-reviewed papers using the following keywords:

“schizophrenia” / “bipolar disorder” / “borderline personality disorder” / “major depression” / “anxiety

disorder” / “serious mental illness” AND “stigma” / “self-stigma”. No time restriction was set. Only the

published papers in English or French were included in the review. The reference list of three meta-

analyses2,11,19 and three literature reviews3,14,15 on stigma and schizophrenia or BD were screened for

additional relevant articles. To be included in this review articles had to meet all the following criteria: a)

reporting explicitly on self-stigma (i.e papers on public stigma or using measures of perceived or

experienced stigma were excluded); b) a diagnosis of schizophrenia, bipolar disorder, borderline personality

disorder, major depression or anxiety disorders; c) quantitative data available on the prevalence, correlates or

consequences of internalized stigma or stigma resistance. The first author applied eligibility criteria and

screened the records to select the included studies. The last author checked all the decisions made. Disputed

items were solved discussing together and reading further the paper to reach a final decision. Means and

percentages were weighted for the number of cases per study to obtain prevalence data. Weighted scores

were calculated using proportions of rating scale scores. The prevalence of self-stigma is frequently

measured using Internalized Stigma of Mental Illness Scale25. A score above the midpoint indicates a

moderate to high level of self-stigma12,25. Stigma resistance is often measured using ISMI stigma resistance

subscale, which shows variable internal consistency (0.56 in Firmin et al 2016 meta-analysis11). Only the

studies reporting internal consistency above 0.50 were considered for extracting the correlates of stigma

resistance. The study protocol was registered on PROSPERO database on July 4th 2019 (ID 141282).

Results

Our search on July 5th 2019 resulted in 3215 articles from PubMed and 11,472 from Web of Science. After

manually removing all duplicates there were 3,824 remaining references. Based on their titles and abstracts,

3,495 papers were excluded for lack of relevance. Most of these articles focused on public stigma, perceived

or experienced stigma or to self-stigma in other discriminated populations. Our search strategy yielded 329

full-text articles. After conducting a full-text analysis of all these papers and excluding those which did not

meet the inclusion criteria we ended up with 220 relevant papers (figure 1).

Figure 1: Review process (Prisma flow diagram)

The 220 papers included were characterized by the heterogeneity of the samples, methods, scales and

reported outcomes. Most were published after 2010 (192 studies; 87.2%) and used cross-sectional designs

(185 studies; 84%) with 37 studies (16%) reporting longitudinal outcomes. Eighty-three studies (37.7%)

were conducted in Europe, 60 (27.3%) in North America, 36 in South-East Asia (16.4%), 21 (9.5%) in the

Middle East, 7 (3.2%) in Africa, 6 in South Asia (2.7%), 3 in South America (1.4%), 2 in Oceania (0.9%)

and 2 studies (0.9%) compared internalized stigma in different geographical areas26,27. Most studies included

outpatients (176 studies, 80%). Seventeen studies (7.7%) were conducted within the context of psychiatric

rehabilitation (recovery-oriented day care28-30), vocational rehabilitation16,31-34, inpatient35 or community-

based psychiatric rehabilitation services36-43, one study (0.45%) in an advocacy group44,and five studies

(2.3%) in prison settings45-49.

Ninety-five studies (43.2%) concerned schizophrenia, 11 (5%) BD, 12 (5.4%) MDD and 10 (4.5%) at-risk

stages or first episode psychosis, two (0.9%) anxiety disorders, one obsessive-compulsive disorder (0.5%)

and two (0.9%) personality disorders. Eighty-seven studies (39.6%) looked at SMI. There were large

variations in the definition of SMI. Twenty-eight studies (12.6%) defined SMI as schizophrenia, BD or

MDD. Thirty studies (13.6%) used a broad definition of SMI and included participants with anxiety

disorders (AD, n=19), obsessive-compulsive disorder (n=9), post-traumatic stress disorder (n=7), personality

disorders (7 studies), substance use disorders (n=3) attention deficit and hyperactive disorder (ADHD, n=2)

and eating disorders (n=1). Twelve studies (5.4%) investigated self-stigma in schizophrenia and BD (n=9),

schizophrenia and MDD (n=2) and in mood disorders (n=1), and 16 studies (7.2%) did not specify the

different forms of SMI. There were large variations in the proportion of participants with schizophrenia (1.8

to 98.1%), BD (1.9 to 63%), MDD (2.6% to 85%), AD (3.7% to 36.1%), obsessive-compulsive disorder

(1.7% to 21.8%) and personality disorders (6.3% to 34%) included in SMI studies. Most studies included

young (18-34 years old; 47 studies (21.4%)) or middle-aged participants (35-50 years old; 149 studies

(67.7%)). Four studies (1.8%) included participants under 18 years old, 13 (5.9%) participants above the age

of 50 years old and 7 (3.1%) used mixed samples. One hundred and forty-four studies (65%) used the

Internalized Stigma of Mental Illness25 scale to measure internalized stigma and 31 studies (14%) the Self-

Stigma of Mental Illness Scale50 (SSMI). Forty-five studies (21%) measured self-stigma with other scales.

The results are shown in Table 1.

Internalized stigma prevalence

Sixty-six papers (30%) reported data on internalized stigma extent in SMI, or on the proportion of

individuals with moderate to high internalized stigma, or on both outcomes. Twenty-one studies were

conducted in Europe, 13 studies in North America, 12 in South East Asia, 21 in, 6 in Africa, 7 in Middle

East, 4 in South Asia, one in South America, one in Australia and one in Austria and Japan. Nine studies

compared the prevalence of internalized stigma in different countries12,13,26,51,52, cities53, or settings16,45,46. The

samples were mostly constituted of individuals with schizophrenia (30 studies; 45%) or SMI (27 studies;

41%). The results are shown in Table 2.

Thirty-three papers reported on the proportion of moderate to high internalized stigma (ISMI >2.5 or above

the midpoint on other scales) in a total of 10,728 participants (5,457 SMI, 4,332 schizophrenia, 1,339 BD,

955 MDD). Sixty papers documented internalized stigma extent (ISMI mean total score) in 17,623

participants (8,442 with SMI, 7,799 with schizophrenia, 1,538 with BD, 1,545 with MDD, 358 with AD, 52

with BPD). Self-stigma prevalence was higher in schizophrenia (39.35%) than in SMI (31.5%). Higher

prevalence was found in South-East Asia and the Middle East for SMI, and in North America, Europe and

Africa for schizophrenia. There were significant country-related differences in the proportion of self-

stigmatized SMI patients in Europe (from 15.2% in Sweden12 to 57% in Croatia51), North America (from 9%

in Canada46 to 37% in USA29) and in South-East Asia (from 8.1% in South Korea54 to 50% in Taiwan55).

Setting-related differences were also found16,53. Similar variations were found for schizophrenia, BD (1.93 in

Europe to 2.26 in India; 18.5% Turkey56 in remitted BD; 26% USA57 in non-adherent BD), MDD (2.15 in

Europe to 2.44 in South East Asia), obsessive-compulsive disorder and anxiety disorders.

Predictors of internalized stigma

One hundred and thirty-two studies (60%) reported on cross-sectional internalized stigma predictors. The

most common diagnosis was schizophrenia (n=60; 45.4%), followed by BD (n=7; 5.3%) at-risk states (n=5;

3.7%) and early psychosis (n=4; 3%). Fifty-six studies (42.4%) concerned SMI. Predictors were illness-

related (n=95 studies; 71.9%), socio-demographic (n=60; 45.4%) or related to participant’s environment (n=

45; 34%). The results are shown in Table 3.

Few socio-demographic characteristics correlated significantly with internalized stigma. Being the income

earner58, immigrant status, history of incarceration or homelessness45,59, rural residence60-62, parenting status

(mothers > fathers63), shame proneness, and avoidant or self-defeating personality traits64-68 predicted higher

IS. The results were contrasted for all other socio-demographic variables (age, gender, education level,

employment, marital status, income, disability status). Other personal characteristics (attachment style, self-

compassion and mindfulness abilities) did not predict internalized stigma69-71. Insight into illness10,54,65,72-81,

parental insight76, self-perception of clinical severity82-84, hopelessness53,54 and attributions of personal

responsibility80 predicted internalized stigma. Impairments in cognitive metacognitive and psychosocial

function85-94, decreased well-being53, and avoidant coping strategies95-99, predicted higher internalized stigma.

Conversely preserved cognitive abilities49,100,101, empowerment, self-efficacy, self-agency and stigma

resistance protected against internalized stigma12,13,44,102. Comorbid post-traumatic stress disorder29 and an

increased number of drug side effects60 predicted self-stigma in single studies. Residual psychiatric

symptomatology, positive and negative symptoms for schizophrenia and depressive symptoms for BD

predicted internalized stigma in most studies (up to 90% significance). Mixed results were found for all other

illness-related predictors (age of onset, psychiatric diagnosis, illness duration, history of suicide attempts,

inpatient status, past psychiatric admission and the number of hospitalizations). Internalized stigma was

equally severe in participants with ultra-high risk and established psychosis103. Public stigma59 and other

dimensions of personal stigma predicted self-stigma (perceived stigma, n= 14 studies; perceived stigma from

mental health providers104, n=1; experienced stigma, n=9; anticipated stigma; n=3). Cultural factors such as

attributing mental illness to supernatural causes60,105, a history of traditional treatment60, and loss of face in

Eastern countries26,53,106 determined internalized stigma. Concerns about losing face (or the fear of losing

face because of being diagnosed with SMI) mediated the relationship between perceived stigma and

internalized stigma106. Stigma stress42,107,108 and negative emotional reactions to involuntary psychiatric

admission42,107 were significant predictors of internalized stigma, in contrast with compulsory community

treatment46, forensic status45 and the number of involuntary admissions42,107,109. Ingroup-value (i.e how people

with SMI see their own group110), social network and support, membership of an advocacy group, and family

support protected against self-stigma12,13,28,35,44,51,96,111-113.

Predictors of change in internalized stigma

The longitudinal predictors of change in internalized stigma over time were reported in 15 studies (6.8%)

mostly conducted in North America (n=8) with middle-aged participants (n=8). Ten were conducted in

psychiatric rehabilitation settings (recovery-oriented day-care28-30,38, or interventions to prevent compulsory

readmission42,114, vocational rehabilitation32-34, early intervention programs115). The results are shown in

Table 3. Residual psychiatric symptoms38,114-116, negative emotional reactions to involuntary

hospitalization42,114, and emotional distress33,38 were the most significant baseline predictors of internalized

stigma at follow-up. Duration of untreated psychosis115 and baseline coping strategies117 predicted

internalized stigma in single studies. Mixed results were found for internalized stigma stability over time

with no specific intervention32,117-119. Attending psychiatric rehabilitation predicted significant reductions in

internalized stigma extent (from a mean total ISMI score of 2.31 on admission to 1.96 at discharge29; 2.36 to

2.2033; 2.11 to 1.9630; 2.1 to 2.0428; 1.80 to 1.50 in participants having worked in the past year without being

discriminated against34) and in the proportion of participants with high internalized stigma (ISMI>2.5 from

37% to 13.7%29; reduction in ISMI levels at follow up > 25% in 38% of the participants with mean

internalized stigma>232). Receiving no disability benefits during psychiatric rehabilitation predicted a higher

reduction in internalized stigma29.

Correlates of internalized stigma

Cross-sectional correlates of internalized stigma were reported in 127 studies (57.7%). Most participants

were middle-aged (n=88; 69.2%) and diagnosed with schizophrenia (n=51; 40.1%) or SMI (n=52; 40.9%).

The results are shown in Table 4.

In general self-stigma was positively associated with depressive symptoms (n=26) and suicidal ideation

(n=9) and negatively correlated with hope (n=13), help seeking (n=3), attitudes towards psychiatric

medication (n=3) and treatment adherence (n=9). Single studies found negative associations with therapeutic

alliance120 and shared decision making121. Insight into illness75,78,100,122-125, avoidant personality traits64, and

coping strategies99, loneliness126 and resilience127 moderated the relationship with depression and self-esteem

mediated internalized stigma effects on hope128. Internalized stigma mediated the effects of perceived

cognitive dysfunction and experienced stigma on suicidality118,129 and QoL130. Self-stigma was negatively

associated with QoL (n=29), self-esteem (n=22), self-efficacy (n=6), well-being (n=4), life satisfaction

(n=3), empowerment (n=3), resilience (n=5), stigma resistance (n=2) and personal recovery (n=15).

Internalized stigma positively correlated with the “why try effect”131 and later stages of self-stigma with a

higher impact on hope, self-esteem, psychosocial function and personal recovery41,131. Participants in the late

stages of self-stigma reported more reasons to not disclose their psychiatric diagnosis, in contrast with those

in the early stages who reported greater benefits from being “out”39. Self-stigma was negatively associated

with global functioning (n=17) and social participation (n=6). Higher demoralization and decreased

resilience mediated the relationship between internalized stigma and psychosocial function75,132. Self-

stigmatized participants reported more dysfunctional attitudes133 and an increased use of avoidant coping

strategies (n=5). Single studies reported negative associations with activity134, self-rated physical health30,

perceived social support135, self-reported attractiveness136, capacity for intimacy137, relational satisfaction56

and self-reported parenting experiences63,138. Internalized stigma positively correlated with sense of

loneliness126,139, fear of intimate relationships56, and self-stigma on parenting abilities for mothers living

without their child63. Psychiatric symptoms (n=4), anxiety (n=3), social anxiety140, distress from sub-

threshold psychotic symptoms141 were positively correlated with self-stigma. Stigma stress- a predictor of

self-stigma in several studies42,107,108, was positively associated with transition to psychosis142.

Internalized stigma as a predictor of outcome

Twenty-seven studies (12.3%) reported longitudinal outcomes associated with internalized stigma. Studies

included mostly middle-aged (n=17; 63%) participants with SMI (n=12; 44.4%) or schizophrenia (n=9;

33.3%). Three studies were about at-risk states (11%). Eight studies included young participants (<18, n=1;

18-35, n=7; 29.6%) and two individuals over 50 years old (7.4%). The duration of follow-up ranged from 6

weeks143 to 2 years144. The results are shown in Table 4.

Self-stigma at baseline predicted increased positive symptoms145, emotional discomfort116, social anxiety146,

depression147,148, suicidal ideation144, and an increased risk of psychiatric hospitalization149 at follow-up.

Participants with high self-stigma reported reduced self-esteem148, decreased life satisfaction150, lower

personal recovery151, less use of adaptive coping strategies117, and lower treatment adherence152 at follow-up.

Baseline internalized stigma predicted poorer social and vocational functioning145,153 at follow-up, and less

benefits from vocational rehabilitation31. Change in internalized stigma during follow-up predicted

depression, increases in internalized stigma being associated with more depressive symptoms145 and higher

suicidality114,154 and decreases in internalized stigma with less depression30,119. Increased internalized stigma

predicted more negative attitudes towards psychiatric medication155, poorer social function156, reduced self-

esteem114, and lower personal recovery151. Reduced internalized stigma predicted decreased subjective

clinical severity30, higher self-esteem33, and improved global functioning30. Baseline internalized stigma did

not predict QoL at follow-up46, decreased internalized stigma during follow-up did however predict

improvements in QoL30 during psychiatric rehabilitation.

Internalized stigma and stigma resistance

Twenty-nine studies (13.2%) reported data on stigma resistance prevalence in SMI. The results are shown in

Table 5. Stigma resistance was higher in mood disorders (59.7%13) than in schizophrenia (53.1%; n=5).

Stigma resistance in schizophrenia varied within Europe (from 49.2%12 to 63% 157 and Africa (from 49.4% in

Ethiopia158 to 72.7% in Nigeria159). Stigma resistance was negatively correlated with internalized stigma in

Austria26,157, Croatia160, Nigeria159 and South Africa44. In some countries internalized stigma and stigma

resistance were both high (USA57, Turkey, Ethiopia158, India, Bolivia52, Peru52, Chile52, China58) and in

Canada these were both low45,46. Metacognitive abilities161-163, social network43,157, social power111, self-

compassion43, psychological flexibility43, fear of negative evaluation161, perceived stigma110,149, negative

symptoms163 and coping strategies95,162 predicted stigma resistance.

Discussion

Overall, the main results of the present review can be summarized as follows: research on self-stigma in SMI

has considerably progressed over the past decade (192 articles since 2010 / 28 studies published prior to

this2). Self-stigma was more frequent in SZ (39.3%) compared to other SMI. Self-stigma was present in all

geographical areas in South-East Asia and the Middle East for SMI (>39%) and in North America, Europe,

South America and Africa for schizophrenia (>38%). Schizophrenia led to high self-stigma in all

geographical areas (36.8% to 44.2%). Self-stigma differed according to the geographical area in other SMI

(internalized stigma extent ranging from 1.93 to 2.26 in BD, 1.9 to 2.31 in anxiety and 2.15 to 2.44 in MDD).

Variations in patterns of stigma according to the cultural area might explain these differences. Internalized

stigma extent appeared higher in BPD (2.42) but this is based on a small number of studies with small

sample sizes. Large country and setting-related variations were found. Socio-demographic and illness-related

predictors yielded mixed results in accordance with previous reviews2,3. Internalized stigma was equally

severe in the at-risk stages as in psychosis147. Further research will however be necessary to confirm this

result. Self-stigma was positively associated with insight into illness, psychiatric symptoms, impaired

cognitive and psychosocial functioning and avoidant personality traits and coping strategies. Recovery-

oriented psychoeducation, cognitive remediation, group cognitive behavior therapy and social skills training

might contribute to self-stigma reduction, trough improved symptoms and functioning23,100. Several potential

predictors were identified in single studies that have not yet been replicated. Anti-stigma campaigns

contribute to reducing public and perceived stigma and should be reinforced59, taking into consideration

cultural factors26,53,60,105,106. Self-stigma reduction interventions should take into consideration cultural factors

(e.g. cost / benefits of strategic disclosure in a specific cultural context18). Self-stigma was closely associated

with perceived and experienced stigma. These concepts are however distinct and should be better

differentiated between, as stereotype awareness and self-labelling do not necessarily imply stereotype

agreement, self-application and increased internalized stigma131,164. Self-support groups and recovery-

oriented services promoting positive group identification28-30,44,110,165 should therefore be further developed to

prevent or reduce self-stigma. Reducing self-stigma implies targeting explicitly negative views about the self

that are related to being diagnosed with SMI.

Strategic disclosure of one’s diagnosis of SMI appears particularly effective for adolescents or people in the

early stages of self-stigma22,39. Patients in the late stages of self-stigma often need to participate to group

interventions combining psychoeducation to counteract SMI stereotypes and cognitive restructuring to

challenge dysfunctional attitudes about the self20,42. Interventions should be proposed to each individual

according to his/her personal needs and level of self-stigma. The development of recovery-oriented practices

in mental health facilities should be encouraged as it might reduce perceived stigma, stigma stress42,107,109,

and the negative emotional reactions to involuntary admissions42,107,109. Peer-supported self-management

interventions, Joint Crisis Plans, “No Force First” policies and selective disclosure programs could improve

self-stigma through reduced stigma stress and perceived coercion22,166-168. Recovery-oriented training

programs for mental health professionals improve personal recovery in people with SMI169. Their

effectiveness in reducing self-stigma should be investigated.

Given the potential relationships with stigma stress142, duration of untreated psychosis115, distress from sub-

threshold psychotic symptoms141, and transition to psychosis142, the effects of recovery-oriented early

interventions on self-stigma and its consequences should be further investigated. Strategic disclosure

improves stigma stress and self-stigma in adolescents with SMI22 and should be integrated in recovery-

oriented early intervention services. As expected2,3, self-stigma was negatively associated with self-esteem,

self-efficacy, QoL, global functioning, treatment adherence and personal recovery, and positively associated

with depression, social anxiety, and positive symptoms. Self-stigma correlated negatively with therapeutic

alliance, help-seeking, intimate relationships, parenting, wellbeing, life satisfaction, empowerment, resilience

and stigma resistance. Dysfunctional attitudes, avoidant coping strategies and suicidality positively

correlated with internalized stigma. Further research will be needed as some results come from single

studies56,134,137,162. Insight into illness was the most significant moderator of internalized stigma. Other

potential moderators or mediators were identified and should be further investigated. Perceived cognitive

dysfunction, perceived and experienced stigma had indirect effects on clinical and functional outcomes via

self-stigma55,118,129,130,170. Baseline internalized stigma predicted depression, social anxiety, self-esteem,

treatment adherence and psychosocial function at follow-up3. Self-stigma at baseline also predicted positive

symptoms, suicidal ideation, coping strategies, benefits from vocational rehabilitation life satisfaction, and

personal recovery at follow-up117,144,145,150,151,153. Change in internalized stigma predicted changes in

depression, suicidality, attitudes towards medication, self-esteem, QoL and social function at follow-

up30,114,116,119,145,151,155,156. Reducing self-stigma through psychiatric rehabilitation or specific interventions

might improve clinical and functional outcomes and should therefore be a primary objective in public

policies. Stigma resistance and internalized stigma predicted each other11 but with different patterns. As

previously suggested, internalized stigma and stigma resistance are distinct constructs and should be

measured with more specific scales11.

Limitations

There are some limitations to this review, due to the heterogeneity in the definition of SMI and in the

samples, settings, methods, scales and reported outcomes. Few papers reported longitudinal outcomes with a

limited number of studies conducted in psychiatric rehabilitation. This review excluded studies where self-

stigma was not the main focus possibly meaning that stigma (i.e. perceived, experienced or anticipated

stigma and self-stigma) could have wider effects on people with SMI. The focus on self-stigma in this review

allows however a more accurate comprehension of its effects on people with SMI. The heterogeneity of the

samples, methods, scales and reported outcomes in the included papers limited the possibilities to extract

comparable data. The large number of studies included in this review and the range of countries represented

is however a considerable strength. The underreporting of negative or non-significant results due to

publication bias and the exclusion of unpublished studies from this review might have limited the accuracy

of the synthesis.

Conclusions

In summary, self-stigma is a severe problem in all SMI conditions - including the at-risk stages - and all

geographical areas and is associated with poor clinical and functional outcomes. The levels of public,

perceived and experienced stigma (including from mental health providers) are significant predictors of

internalized stigma, pleading for the reinforcement of anti-stigma campaigns and the development of

recovery-oriented practices in mental health settings. The respective associations between duration of

untreated psychosis, internalized stigma and transition to psychosis support the development of recovery-

oriented early intervention programs. Psychiatric rehabilitation is effective on internalized stigma reduction

and should therefore be further developed in public policies.

Acknowledgements

The authors would like to thank Mrs. Kim Barrett for proofreading the manuscript.

Role of the funding source: This research did not receive any specific grant from funding agencies in the

public, commercial, or not-for-profit sectors.

Author contribution statement: The two authors had full access to the data in the study and take the

responsibility for the integrity of the data and the accuracy of the data analysis. Dr Julien Dubreucq drafted

the article. Dr Julien Dubreucq and Pr Nicolas Franck made the literature review. Pr Nicolas Franck critically

revised the article. Both authors were involved in the collection and analysis of the data. Both authors

contributed to and have approved the final manuscript

Conflicts of interests : none

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Table1:Researchcharacteristicsofthe220studiesincludedinthereview

Characteristic Allstudies(n=220)%

Publicationdate

Pre2011 28(12.8%)

2011orlater 192(87.2%)

Studydesign

Cross-sectional 185(84%)

Longitudinal 37(16%)

Regionofstudy

NorthAmerica 60(27.3%)

Europa 83(37.7%)

SouthAsia

SouthEastAsia

6(2.7%)

36(16.4%)

MiddleEast 21(9.5%)

SouthAmerica 3(1.4%)

Africa 7(3.2%)

Australia

Others

2(0.9%)

2(0.9%)

Studysites

Singlesite 209(95%)

Multiplecountries/sites 11(5%%)

Diagnosis

SevereMentalillness 87(39.6%)

BipolarDisorder 11(5%)

PersonalityDisorder 2(0.9%)

MajorDepressiveDisorder 12(5.4%)

AnxietyDisorder 2(0.9%)

Schizophrenia 95(43.2%)

Atriskstages/FirstEpisodepsychosis 10(4.5%)

Meanage

<18yearsold 4(1.8%)

18-35yearsold 47(21.4%)

35-50yearsold 149(67.7%)

>50yearsold 13(5.9%)

Mixed 7(3.1%)

Internalizedstigmameasures

InternalizedStigmaofMentalIllness(ISMI) 144(65%)

Self-StigmaofMentalIllnessScale(SSMIS) 31(14%)

Others 45(21%)

Patientstatus

Inpatient 27(12.2%)

Outpatient 176(80%)

Mixed 19(8.8%)

Psychiatricrehabilitation

Yes

No

17(7.7%)

203(92.3%)

Area Study Country N MeanIStotalscore n HighIS(%)

Europe

SMI

Evans-Lacko,201159 Multi-site 1,835 2.2 - -

Grambal,201682 CzechRepublic 184 2.17 - -

Rusch,201434 Switzerland 186 1.9 - -

Xu,201842 Switzerland 141 1.91 - -

Kamaradova

2016171CzechRepublic 332 2.10 - -

Bradstreet201869 UK 272 2.2 - -

Krajewski,201351 Multi-site 786 2.29(1.96-2.71) 786 33%(15.2-57.4%)

Weightedtotal 3,736 2.18 786 33%

Schizophrenia Brohan,201012 Multi-site 1,129 2.40(2.0-2.97) 1129 41.7%

Vidovic2016160 Croatia 149 2.13 149 22.8%

Sibitz,2011172 Austria 157 2.09 - -

Galderisi201489 Italia 921 2.1 - -

Rossi2017173 Italia 910 2.2 - -

Margetic201464 Croatia 119 2.13 - -

Hofer,201626 Austria 52 2.01 - -

Bouvet,2013124 France 62 2.23 - -

Vrbova201683 CzechRepublic 197 2.18 - -

Surmann,201794 Germany 80 2.12 - -

Weightedtotal 3,876 2.16 1278 39.5%

BipolarDisorders

/MDD

Brohan,201113 Multi-site 577 1.94BD 1182 21.7%

603 2.11MDD

BipolarDisorders Post2018174 Austria 60 1.9BD - -

MDD Lanfredi2015112 Multi-site 516 2.2 - -

Weightedtotal BD

MDD

637 1.93 1182

21.7%

1,119 2.15

AnxietyDisorders Ociskova,201567 CzechRepublic 109 2.24 - -

Grambal,201682 CzechRepublic 37 1.98

OCD Moritz,2018175 Germany 50 1.99 - -

Weightedtotal - 196 2.12 - -

BPD Grambal,201682 CzechRepublic 35 2.45 - -

PersonalityDisorder Kamaradova

2016171CzechRepublic 17 2.37 - -


NorthAmerica

SMI

Livingston201145 Canada 91 2.13(2.07-2.18) 91 10%

Livingston201246 Canada 71 2.10 71 9%

Livingston2018176 Canada 94 2.22 94 23.4%

West,201116 USA 144 1.72(1.58-1.88) 144 36.1%(31-41%)

Boyd-2004148 USA - - 82 28%

Boyd2015177 USA 149 2.19 149 24.8%

Drapalski,2013178 USA 100 2.3 100 35%

Harris,201529 USA 235 2.31 235 37%

Chronister201396 USA 101 2.2 101 25%

Weightedtotal - 985 2.12 1067 27.8%

Schizophrenia Firmin201890 USA 111 1.3-1.6 111 36.5%(25-45%)

O’Connor,201895 USA - - 353 50%

Link2015179 USA - - 65 26.2%

Weightedtotal - 111 529 44.2%

BipolarDisorders Howland,201657 USA 115 2.22 115 26%

SouthAmerica Schizophrenia Caqueo-Uritzar,

201952Multi-site 253 2.3 253 38.6%(28.6-

48.7%)

Australia Schizophrenia Hill2013180 Australia 60 2.56 - -

SouthAsia SMI Grover201762 India 1,403 2.29 1403 29.4%

Schizophrenia Grover201762 India 707 2.37 707 37.9%

Singh,201893 India 100 2.3 100 29%

Pal201785 India 32 2.74 - -

Weightedtotal - 839 2.37 807 36.8%

BipolarDisorders Grover,201762 India 344 2.23 344 20.6%

Pal201785 India 59 2.25 - -

Grover,2016181 India 185 2.33 185 28%

Weightedtotal - 588 2.26 529 23.2%

MDD Grover201762 India 352 2.19 352 21%

AnxietyDisorders Pal201785 India 30 1.97 - -

South-EastAsia

SMI Picco,2016182 Singapore 280 2.37 280 43.6%

Ran201758 China 453 2.44 - -

Ho2018115 China 136 2.3 136 36.8%

Young,201653 China 474 2.42(2.34-2.50) 474 43.5%(38.3-

49.5%)

Kim201554 SouthKorea 160 2.06 160 8.1%

Kao2016162 Taiwan 251 2.26 251 50%

Weightedtotal - 1,754 2.35 1301 39.7%

Schizophrenia Lv2013183 China 95 2.17 95 20%

Hsiao,201835 Taiwan 111 2.33 111 27%

Lien201777 Taiwan 170 2.36 170 39.4%

Kao2016162 Taiwan 151 2.42 151 51%

Li2017184 China 384 2.30 - -

Hofer,201626 Japan 60 2.16 - -

Ran,201758 China 232 2.46 - -

Mak200680 China 162 2.34 - -

Shin2017130 SouthKorea 70 2.17 - -

Weightedtotal - 1,435 2.33 527 36.6%

MDD Picco,2016182 Singapore 74 2.44 - -

AnxietyDisorders

OCD

Picco,2016182 Singapore 71 2.23 - -

Picco2016182 Singapore 61 2.41 - -

Weightedtotal - 132 2.31

MiddleEast

SMI Ghanean,2011185 Iran 138 - 138 39%

Schizophrenia Sarisoy,201356 Turkey 109 2.17 109 29.4%

Çapar2018186 Turkey 250 2.76 - -

Olçun2017187 Turkey 76 2.51 - -

Karakas2016188 Turkey 60 2.60 - -

Yilmaz2015189 Turkey 63 2.63 - -

Weightedtotal - 558 2.58 109 29.4%

BipolarDisorders Sarisoy,201356 Turkey 118 2.10 118 18.5%

Cerit2012135 Turkey 80 2.12 - -

Weightedtotal - 198 2.11 118 18.5%

Africa

SMI Adewuya,201072 Nigeria - - 340 21.6%

Girma,201360 Ethiopia 422 2.32 422 25.1%

Sorsdahl201244 SouthAfrica 142 1.93 - -

Weightedtotal 564 2.22 762 23.5%

Schizophrenia Mosanya,2013159 Nigeria 256 1.94 256 18.8%

Assefa,201261 Ethiopia - - 212 46.7%

Bifftu2014158 Ethiopia 411 2.45 411 48.6%

Weightedtotal - 667 2.25 879 39.46%

Table2PrevalenceofInternalizedStigma

MDD:MajorDepressiveDisorder;OCD:ObsessiveCompulsiveDisorder;BPD:BorderlinePersonalityDisorder; SMI: SevereMental Illness.Mean

Internalized Stigma refers to ISMImean total score. High Internalized Stigma refers to the proportion of patientswith ISMI> 2.5 or above the

midpointonotherscales.

Existing

association

PredictorsofSelf-Stigma

Riskfactors

(positive

association)

Socio-demographicpredictors

Immigrantstatus176

Historyofincarceration/homelessness45

MotherswithSevereMentalIllness63

Harmavoidance64,66,67,190,self-defeatingpersonalitytraits66,68,lowself-

directeness67,190

Shameproneness65

Illness-relatedpredictors

Subjectiveclinicalseverity82,83

Higherinsightintoillness47,54,65,72-81

Parentalinsightintoillness76

Higherattributionofpersonalresponsibility80

Hopelessness53,54

Decreasedwell-being53

ComorbidPost-TraumaticStressDisorder29

Lowerlevelofpsychosocialfunction85,93

Highernumberofdrugsideeffects60

Impairedcognitivefunction86,88-90

Perceivedcognitivedysfunction191

Lowermetacognitiveabilities87,91,92,94

Useofnegativecopingstrategies95-99

Environment-relatedpredictors

Highperceivedstigma12,13,16,26,36,51,69,101,106,162,170,192-194

Highperceivedproviderstigma104

Increasedself-labeling164,195

Stigmastress107,108,114

Negativeemotionalreactionstoinvoluntaryhospitalization107,114

Lowgroupvalue/Highperceivedlegitimacyofdiscrimination149,165

Fewersocialcontacts51

Lowperceivedsocialsupport54,72,141,196-198

Poorsocialnetwork172,183

Socialconflict54

Experiencedstigma36,129,178,184,192,199-202

Anticipatedsocialrejection129,179,200

Experienceofvictimization203

Culturalfactors:lossoffaceinEasternCountries26,53,106/historyoftraditional

treatment60/attributingmentalillnesstosupernaturalcauses60,105

Protectivefactors

(negative

association)


Highlevelsofempowerment/self-efficacy12,13,44

Highstigmaresistance12,44

Useofpositivecopingstrategies98

Preservedsocialcognitionandmetacognitiveabilities49,100,101

Lowerinsightintoillness83,160


ToliveinacountrywithlowerpublicstigmatowardsSevereMentalIllness51,59

Lowperceivedstigma51

Highgroupvalue204/Lowperceivedlegitimacyofdiscrimination149,165/

IncreasedsenseofbelongingSevereMentalIllness40

Highsocialsupport28,51,96,112,113

Higherfamilysenseofcoherence35

Preservedsocialnetwork12,13,111-113

Beingmemberofanadvocacygroup44

Lackof

association

Numberofinvoluntarypsychiatrichospitalizations107,109,114;Compulsory

communitytreatment46

Forensicpatientstatus45

ComorbidSubstanceUseDisorder46

Attachmentstyle69

Highermindfulness71/LowSelf-compassion70

Stageofillness103

Mixedresults


Age:16,29,30,36,46,51,57,58,60,62,72,78,80,82,86,87,109,124,125,130,171,176,178,181,182,186,201,205-211

Maritalstatus:29,53,60,61,78,82-84,130,171,178,181,182,186,207

Gender:16,30,34,40,53,54,57,58-60,62,72,77,78,80,82,84,86,94,115,124,125,130,171,172,178,181,182,186,190,201,206-

208,211

Educationlevel:13,36,57,59,60,63,78,80,82-85,87,124,130,135,159,171,172,178,181-183,196,201,206,208,210

Employment:12,13,51,54,59,72,82,112,159,176,178,181-183,201,206,207,212

Income:58,62,72,85,159,181,186,210

Incomeassistance/Disabilitystatus29,46,83,207,208

Ruralresidence60-62/Farmers60

Veteranstatus16,29


Ageofonset6,16,57,62,77,78,109,171,172,206

Illnessduration36,46,57,62,72,77,78,80,90,130,172,183,201,207,211

Diagnosis4,13,29,30,34,36,51,53,54,56,58,59,62,67,72,82,85,109,162,170,171,178,182,196,201,207,212-214

Numberofpsychiatrichospitalizations6,16,54,60,78,82,83,87,109,112,135,171,172,183,190,201,208

Pastpsychiatricadmission:30,77,109,112,115,182,196

LongerdurationofdepressiveepisodesBipolarDisorders181/lowerremission

duration181

Inpatientstatus54,94,137,201,213,214

Severityofpsychiatricsymptoms45,54,57,67,80,159,178,215-217

Positive38,61,73,78,90,115,120,125,183,203,218andnegative

symptoms73,78,88,89,101,132,133,180,203,210

Residualdepressive/manicsymptoms57,62,135

Historyofsuicideattempt109,201,219

Self-esteem51,54,60,85,184

Existing

association

PredictorsofchangeinSelf-Stigma

Riskfactors

(positive

association)


Femalegender115


Priorpsychiatrichospitalization115

LongerDurationofUntreatedPsychosis115

Baselinepsychiatric114andpositivesymptoms38,115,116

Shame,self-contemptandstigmastress42,114

Emotionaldistress33,38

Lessadaptivecopingstrategiesatbaseline117

Protectivefactors

(negative

association)


Attendingtoarecovery-orienteddaycareprogram28-30/tovocational

rehabilitation33

Receivingnodisabilitybenefitsduringpsychiatricrehabilitation29

Workwithoutexperiencingdiscrimination34

Lackof

association

Comingoutandcomingoutassertiveness197

Mixedresults InternalizedStigmastabilityovertime32,117-119

Table3Cross-sectionalandlongitudinalpredictorsofInternalizedstigma

Correlatesof

highinternalized

stigma

Internalizedstigmaandpsychiatricsymptoms

Increasedriskoftransitiontopsychosis142

Increaseddistressfromsubthresholdpsychoticsymptoms141

andpsychiatric

symptoms96

Moreseverepsychiatric38,57,90,220

andnegativesymptoms133,180

Increasedanxiety30,101,103,147,164,178,205

andsocialanxiety140,147

Internalizedstigmaandpsychosocialfunction

Increaseddysfunctionalattitudes(lowexpectationsforsuccess/perceptionoflimited

resources133

Increaseduseofwithdrawal6,99,208

/secrecy97,208

/emotionfocusedcopingstrategies173

Increasedsenseofloneliness126,139

Lowerperceivedsocialsupport135

Higherstigmaimpact213

Decreasedpsychosocialfunction30,36,86,89,92,102,132,170,182,186,208,221

andfunctional

recovery186

Reducedvocationalfunctioningandparticipation222

Reducedsocialfunction71,85,90,139,180

andsocialparticipation62,85,93,181

Reducedactivity134

Lowerself-ratedphysicalhealth30

IncreasedbenefitsfrombeingoutinearlystagesofIS/reasonstostayininlatestages

ofinternalizedstigma222

Internalizedstigmaandintimaterelationships

Lowperceivedattractiveness136,223

Lowerrelationalsatisfaction,increasedfearofrelationshipsandrelationship

monitoring56(BD,schizophrenia)/Lowerrelationalesteemandrelationalassertiveness

/Higherexternalrelationalcontrol56(schizophrenia)

Decreasedcapacitytocreateintimaterelationships(intimacy137

)

Poorerself-reportedparentingexperience63,138

/increasedself-stigmaonparentingfor

mothersnotlivingwiththeirchild

Internalizedstigmaanddepression/suicidality

Decreasedoptimism197

Reducedhope6,26,73,92,95,103,108,122,128,147,187,192,198,224

Increaseddepression6,30,55,57,64,73,75,78,97,100,101,103,122-125,127,131,133,135,147,154,172,178,192,205,206

Increasedsuiciderisk61,74,109,114,118,129,144,206,225

Internalizedstigmaandhelp-seeking/therapeuticalliance

Lesshelp-seeking(MDD226

)/Loweropennesstodepressioncarefrommentalhealth

providers152/Lowerproblemappraisalandperceivedneedfortreatment(MDD

227)

Lessshareddecisionmaking(lessparticipativeandcriticalbehavior121)

Lowtherapeuticalliance120

Morenegativeattitudestowardsmedication189,215,228,229

/Increasedmedication

stigma177

Poortreatmentadherence48,57,61,77,171,189,207,229,230

InternalizedstigmaandQoL/well-being/recovery

ReducedQoL4,30,35,37,46,53,55,77,78,84,96,102,128,130,133,156,159,170,172,174,182,184,202,216,231-236

ReducedFamilysenseofcoherence35

Decreasedself-esteem4,6,26,48,53,55,78,85,97,122,127,128,131,137,140,170,173,178,182,188,202,209-211,224,231,236-

239

Lowself-efficacy4,57,178,180,197,211

Decreasedempowerment104,112,114

Decreasedresilience26,89,127,204,240

andstigmaresistance26,235

Decreasedwell-being193,211,236,241,242

Diminishedsatisfactionwithlife43,76,241

mediatedbyincreasedsenseofalienation/

decreasedself-acceptance241

/senseofmeaninginlife91,243

Decreasedexpectationsofrecovery36/recoveryorientationforlaterstagesof

internalizedstigma41

Increased“whytryeffect”131

/

Decreasedpersonalrecovery42,91,92,96,101,131,151,173,178,192,202,238,244

Internalized

stigmapredictor

ofchange

Baselinehighinternalizedstigma

Increasedpositivesymptoms145

andsocialanxiety146

Increaseddepressivesymptoms147,148

andsuicidalideation144

Higheremotionaldiscomfort33

Lowertreatmentadherence152

(MDD)andtreatmentefficacy143

(MDD)

Lessadaptivecoping117

Increasedriskofpsychiatrichospitalizations149

Lowerpsychosocialfunction145

Reducedsocialinclusionandvocationalfunctioning153/changeinvocationalfunctioning

duringvocationalrehabilitation31

Reducedself-esteem148

Lowerlifesatisfaction150andpersonalrecovery

151

Baselinelowinternalizedstigma

Decreasedclinicalseverityattheendofhospitalizationsanxietydisorders245

Increaseininternalizedstigma

Increasedpsychoticsymptoms38

Higherdepressivesymptoms145

andsuicidalideation114,154

Laterstagesofinternalizedstigmapredictmorenegativeclinicalandfunctional

outcomes131,222,224

Morenegativeattitudestowardspsychiatricmedication155

Lowersocialfunction156

Reducedself-esteem114

Lowerpersonalrecovery151

Decreaseininternalizedstigma

Lessdepressivesymptoms30,119

andsubjectiveclinicalseverity30

Increasedself-esteem33

Improvedpsychosocialfunction30

Mixedresults

ImpactofchangeininternalizedstigmaonQoL30,46

Table4Correlatesofself-stigma

AD:AnxietyDisorders;BD:BipolarDisorders;MDD:MajorDepressiveDisorder;OCD:ObsessiveCompulsiveDisorder;

BPD:BorderlinePersonalityDisorder;PD:PersonalityDisorder;PTSD:Post-TraumaticStressDisorder;QoL:Qualityof

Life;SMI:SevereMentalIllness

Area Study Country n MeanSR n HighSR(%)

Europe

SMI Grambal,201682 CzechRepublic 184 2.52 - -

Schizophrenia

Brohan,201012 Multi-site 1,129 2.47(2.29-2.7) 1129 49.2%

Vidovic2016160 Croatia 149 2.37 149 54%

Sibitz,2011172 Austria 157 2.73 157 63.3%

Hofer,201626 Austria 52 2.94 - -

Bouvet,2013124 France 62 2.46 - -

Vrbova201683 CzechRepublic 197 2.56 - -

Surmann,201794 Germany 80 2.35 - -

Weightedtotal - 1,826 2.50 1435 51.2%

BipolarDisorders/MDD Brohan,201113 Multi-site 1,182 2.81 1182 59.7%

Anxietydisorders Grambal,201682 CzechRepublic 37 2.30 - -

BorderlinePersonality

Disorder

Grambal,201682 CzechRepublic 35 2.27 - -

NorthAmerica

SMI

Livingston201246 Canada 71 2.07 - -

Livingston2018176 Canada 94 2.10 94 15.9%

Boyd-2004148 USA - - 82 29%

Weightedtotal - 165 2.08 176 22%

BipolarDisorders Howland,201657 USA 115 3.06 - -

SouthAmerica Schizophrenia Caqueo-Uritzar,

201952

Multi-site 253 2.4 - -

SouthAsia Schizophrenia Singh,201693 India 100 2.3 100 45%

Pal201785 India 32 2.84 -

Weightedtotal - 132 2.43 100 45%

BipolarDisorders Pal201785 India 59 2.43 - -

Grover,2016180 India 185 2.21 - -


South-EastAsia SMI Ran201758 China 453 2.49 - -

Lau,2017146 Singapore 280 2.87 280 82.9%

Schizophrenia

LI2017184 China 384 2.28 - -

Hofer,201626 Japan 60 2.35 - -

Ran,201858 China 232 2.50 - -


MiddleEast

SMI Ghanean,2011185 Iran 138 2.46 - -

Schizophrenia

Sarisoy,201356 Turkey 109 2.56 - -

Çapar2019186 Turkey 250 2.41 - -

Olçun2017187 Turkey 76 2.60 - -

Karakas2016188 Turkey 60 2.62 - -

Yilmaz2015189 Turkey 63 2.66 - -

Weightedtotalscore - 558 2.51 - -

BipolarDisorders Sarisoy,201356 Turkey 118 2.38 - -

Africa

SMI Girma,201360 Ethiopia 422 2.41 - -

Sorsdahl201244 SouthAfrica 142 2.90 - -


Schizophrenia Mosanya,2013159 Nigeria 256 2.79 256 72.7%

Bifftu2014158 Ethiopia 411 2.52 411 49.4%

Weightedtotal 667 2.62 667 58.34%

Table5PrevalenceofStigmaResistance

MDD:MajorDepressiveDisorder;SMI:SevereMental Illness.MeanstigmaresistancereferstoISMIstigmaresistancesubscalemeanscore.High

stigmaresistancereferstotheproportionofpatientswithISMIstigmaresistancesubscale>2.5

Partie IV. L’auto-stigmatisation et la résistance à la stigmatisation en France

Satisfaction and Needs in Serious Mental Illness and

Autism Spectrum Disorder: The REHABase

Psychosocial Rehabilitation Project

Nicolas Franck, M.D., Ph.D., Laura Bon, M.Sc., Marie Dekerle, Ph.D., Julien Plasse, M.Sc., Catherine Massoubre, M.D., Ph.D.,

Romain Pommier, M.D., Emilie Legros-Lafarge, M.D., Nemat Jaafari, M.D., Ph.D., Nathalie Guillard-Bouhet, M.D.,

Clélia Quilès, M.D., Ph.D., Geoffroy Couhet, M.D., Hélène Verdoux, M.D., Ph.D., Benjamin Gouache, M.D.,

Brice Martin, M.D., Ph.D., Sophie Cervello, M.D., Caroline Demily, M.D., Ph.D., Julien Dubreucq, M.D.

Objective: The REHABase project is a French observational,

prospective, and multicenter cohort study of serious men-

tal illness and autism spectrum disorder (ASD), launched

in 2016 for a planned minimum duration of 15 years. The

aim is to characterize the care and quality-of-life needs of

participants. This article presents initial results from data

collection.

Methods: Psychosocial, cognitive, and functional data

were collected at baseline, annually, and after rehabil-

itation care. Data from the baseline evaluation on diag-

noses, medications, well-being, insight, life satisfaction,

and care needs are presented. The clinical profiles of

REHABase participants with serious mental illness or

ASD were assessed in relation to their level of satisfaction

with life and well-being in nine life dimensions and their

needs, according to their stage of recovery in a five-stage

model.

Results: Baseline data were collected for 1,397 participants

between January 2016 and August 2018. Main diagnoses

were schizophrenia spectrum disorder (49%); ASD (13%); and

personality (12%), bipolar (9%), and major depressive (6%)

disorders. More than 50% of participants reported needs for

care or interventions in four of nine dimensions: employ-

ment, cognitive functioning, symptom management, and

interpersonal relationships. Nearly half of participants were

not in the active stages of recovery (stages 4 and 5), and even

those considered to have reached the final stage continued

to require help in several areas.

Conclusions: Most participants had already received psych-

iatric care for several years, and most remained dissatisfied

with their social and emotional life and their psycholog-

ical well-being.

Psychiatric Services in Advance (doi: 10.1176/appi.ps.201800420)

In 2018, the World Health Organization highlighted that the

burden of mental illness continues to grow. This not only has

a significant impact on health but also has major social,

human rights, and economic consequences for countries all

over the world. Serious mental illness is defined as “a di-

agnosable mental, behavioral, or emotional disorder . . . that

has resulted in severe functional impairment” (1). It includes

schizophrenia, bipolar disorder, and borderline personality

disorder, as well as major depression and anxiety disorders

that cause severe and persistent functional impairment.

Autism spectrum disorder (ASD) is also associated with per-

sistent and significant social and communication impair-

ments (2, 3).

Access to a comprehensive standardized evaluation,

leading to personalized recovery-oriented care and to psy-

chosocial rehabilitation interventions, remains extremely

limited for individuals with schizophrenia and is almost

nonexistent for those with borderline personality disorder

or ASD (4). In France, a national network of rehabilitation

centers was set up under the French decree on the territory

HIGHLIGHTS

• The REHABase project is a French cohort study that aims

to characterize the rehabilitation needs of people with

serious mental illness and autism spectrum disorder (ASD).

• Most participants with serious mental illness and ASD

asked for help with employment, cognitive functioning,

symptom management, and interpersonal relationships.

• The level of dissatisfaction with life and well-being of

people with serious mental illness differed according to

the stage of recovery.

• Participants with serious mental illness considered to

have reached the final stage of their recovery process

continued to require help.

PS in Advance ps.psychiatryonline.org 1

ARTICLES

national mental health plan for recovery-focused care. In-

dividuals who have serious mental illness or ASD (disorders

that present similar difficulties and rehabilitation needs) and

who are engaged in ongoing treatment delivered in public or

private mental health establishments are referred by their

psychiatrists to third-line rehabilitation centers for com-

plementary, customized evaluations and care. The REHA-

Base database project is a result of this national network.

Psychiatric rehabilitation helps people with serious

mental illness to “be successful and satisfied in the living,

working, learning, and social environments of their choice”

(5) by designing customized, recovery-oriented rehabil-

itation plans based on their perceived difficulties, re-

sources, needs for care, objectives, and preferred and valued

roles. Evaluations in psychiatric rehabilitation are used to

design individualized recovery-oriented intervention plans,

and to assess their effectiveness on clinical and functional

outcomes. However, rather than being regarded as as ther-

apeutic outcomes, these components are generally used to

describe a population; for example, investigators often ex-

amine the predictors of subjective quality of life (6) or job

satisfaction (7) or participants’ perception of the suitability

of services received in relation to their care needs (8).

Rehabilitation brings together a wide range of recovery-

oriented interventions. They include strengths-based case

management, improvements in physical and mental health

and well-being, low-dose psychotropic medication, cogni-

tive remediation, cognitive-behavioral therapy, psycho-

education, social skills training, stigma reduction, family

support, supported housing, and supported employment (5,

9, 10). Combining interventions is the key to effective ther-

apy. For instance, case management is more effective when

combined with other therapies (11, 12). Psychosocial re-

habilitation has demonstrated significant positive effects on

hospitalization rates (13), symptoms, and social aspects of

schizophrenia (14, 15). It has also shown effectiveness in the

treatment of bipolar disorder (16), borderline personality

disorder (17), and ASD (18). Today, although these inter-

ventions figure in international guidelines, they are not

widely used in routine clinical practice, and not all patients

have access to a comprehensive evaluation. Psychosocial

impairments are still underdetected and underestimated,

and thus they remain untreated, leading to poorer functional

outcomes and quality of life.

Quantitative research on recovery among individuals

with serious mental illness has been conducted from a

clinical perspective (i.e., focusing more on clinical and

functional outcomes than on empowerment, autonomy, and

agency, which are key to personal recovery) (19). Recovery

rates remain low to moderate, depending on the definition of

clinical recovery. For example, Salzer et al. (20), who defined

recovery as absence of substantial interference or limitation

in major life activities in the past 12 months, found a rate of

approximately one-third among 2,401 participants with a

lifetime serious mental illness. In a review and meta-

analysis, Jääskeläinen et al. (21), who defined recovery as

clinical remission and social recovery for at least 2 years,

found a rate of 13.5% in a sample of persons with

schizophrenia.

Subjective recovery does not perfectly fit the medical

definition of recovery. Therefore, it depends on a person’s

life goals (22). Supporting personal recovery (defined as “a

deeply personal, unique process of changing one’s attitudes,

values, feelings, goals, skills and/or roles . . . a way of living a

satisfying, hopeful and contributing life even with the limi-

tations caused by illness” [23]) is therefore one of the major

objectives of psychiatric rehabilitation (5). Andresen and

colleagues (24) defined five stages of recovery on which they

later based the STORI (STage Of Recovery Instrument),

which is part of the REHABase assessment. The first stage is

the moratorium, during which the person is overwhelmed

by his or her disability. The second stage is awareness, when

hope returns. The person starts developing skills during the

third stage, preparation. Then comes rebuilding, where re-

covery truly starts, with steps forward and steps back, and

finally growth, which is considered as the end goal of re-

covery. Individuals now have faith in their abilities and can

handle any setbacks. Of interest, all these stages were found

to correlate with other scales that evaluate hope or with

recovery-based scales that use other theoretical models.

However, the authors suggested that the five stages might

overlap, because only three consistent clusters were found

in a cluster analysis. This lack of specificity might also be

explained by the nonlinear aspect of the recovery process.

The rehabilitation centers in France offer personal-

ized cognitive remediation, psychoeducation, and cognitive-

behavioral therapy to help participants implement their

life plans according to their strengths and weaknesses (25)

for a limited duration (2–3 years of follow-up). The centers

aim to help participants develop strategies they can use on

their own. Service users also have representative commit-

tees and participate in writing presentation documents. In

this article, we present initial data on the clinical profiles,

requests, and recovery stages of persons with serious men-

tal illness or ASD participating in the REHABase project.

We hypothesized that participants’ requests for help would

differ according to their recovery stage.

METHODS

The REHABase project is an observational, prospective, and

multicenter cohort study launched in 2016 for a planned

minimum duration of 15 years. REHABase is supported by

the French Regional Health Agencies of Auvergne-Rhône-

Alpes and Nouvelle-Aquitaine. Since 2016, five support–

psychosocial rehabilitation centers have contributed to the

data collection: Lyon, Grenoble, and Saint-Etienne since

January 2016 and Bordeaux and Limoges/Poitiers since

December 2017. The centers selected to participate in the

REHABase network were previously involved in psychoso-

cial rehabilitation and recovery-oriented care. Regular group

meetings were held to select the instruments used for the

2 ps.psychiatryonline.org PS in Advance

SATISFACTION AND NEEDS IN SERIOUS MENTAL ILLNESS AND AUTISM SPECTRUM DISORDER

clinical and neuropsychological evaluations, monitor quality

control, and ensure good interrater reliability.

Before inclusion in systematic data collection, partici-

pants are first given a diagnosis with the specific clinical

interview from DSM-5 (26). Those with ASD have a docu-

mented diagnosis through the Adult Asperger Assessment

(27) or Autism Diagnostic Interview (28) and Autism Di-

agnosis and Observation Schedule (29). Second, their eligi-

bility for inclusion in REHABase is confirmed based on

their Global Assessment of Functioning (GAF) score (,61,

which was defined as the cutoff for social recovery in the

Jääskeläinen et al. [21] meta-analysis in 2013). Exclusion

criteria are minimal, and all participants who meet the di-

agnosis criteria for severe mental illness or have ASD

without intellectual disability and a GAF score of ,61 can

benefit from the standardized evaluation. The evaluation

may, however, be postponed until partial remission for those

referred during a psychotic ormanic relapse. An information

sheet is given to participants to inform them about data

confidentiality and their right to withdraw at any time.

The study obtained all of the authorizations required

under French legislation (French National Advisory Com-

mittee for the Treatment of Information in Health Research,

16.060bis), including information processing (French Na-

tional Computing and Freedom Committee, DR-2017-268).

Participant data are anonymized before being trans-

ferred to the database. Clinical data are collected by using

an electronic case report form specifically

developed on the Web-based OpenClinica open-

source software. The database is securely ac-

cessed via ordinary Web browsers.

Anyone with serious mental illness or ASD

can use the rehabilitation centers. The par-

ticipants are frequently referred by public

mental health services or private psychia-

trists. They first undergo a medical interview

for registration and diagnosis confirmation.

This interview is followed by an initial as-

sessment, including a cognitive and func-

tional evaluation to highlight the individual’s

strengths and weaknesses, autonomy, and

occupational level. Next, the clinician and

participant jointly select relevant therapeutic

tools and define personalized rehabilitation

care plans. Follow-up is planned to last 2 to

3 years. Evaluations are scheduled at baseline,

annually, and after the end of the action plan

(Figure 1).

These first results from the REHABase

study provided information on the general

characteristics of service users, their level of

well-being, their needs for care and psycho-

social interventions, the recovery path of the

participants with serious mental illness, and

their level of dissatisfaction according to their

recovery stage. The results focused on data

extracted from the satisfaction scale adapted from the Client

Assessment of Strengths, Interests and Goals (CASIG) and

on recovery stages extracted from the STORI. CASIG was

developed by the University of California, Los Angeles (30).

The satisfaction scale includes a structured interview and

visual analog scales that consider nine life dimensions.

STORI is a 50-item self-report measure developed by the

University of Wollongong in Australia (24) that is used to

assess progress in the recovery process. Mental well-being

was evaluated with the 14-item autoevaluation Warwick-

Edinburgh Mental Well-Being Scale (WEMWBS). For this

first presentation of project data, only descriptive analyses

were carried out. Descriptive statistics (mean, median, and

standard deviation for quantitative data and frequency dis-

tribution for qualitative data) were calculated to summarize

the baseline characteristics for each variable.

RESULTS

Between January 2016 and August 2018, a total of 1,397 par-

ticipants were enrolled in REHABase (Table 1 and Table 2).

Additional information about sociodemographic, general

medical, psychosocial, addictions, and neuropsychological

data collected is presented in Table 1 (see also online sup-

plement). Participants were treated with antipsychotics

(N=884, 63%), antidepressants (N=426, 30%), anxiolytics

(N=370, 26%), and mood stabilizers (N=154, 11%).

FIGURE 1. Steps in the development of a rehabilitation care plan for participants

in the REHABase projecta

Data collection processComprehensive evaluation: highlighting resources and difficulties

Neuropsycholog-ical evaluationAssessment of

cognitivefunctioning

SynthesisConstruction of the

rehabilitation care planbased on the results of thecomprehensive evaluation

Medicalinterview

Clinical dataon patients

AutonomyevaluationData on global

functioning

OccupationalevaluationData on practical

autonomy

Care in the rehabilitation center

End of the care plan: socal and professional inclusion

Rehabilitation care Vocationalrehabilitation

Peer supportinterventions

Other mental health

structures

Comprehensiveevaluation

data collection

First-yeardata

collection

Postcaredata

collection

Psychoeducationfor patients andfamilies

Cognitive remediation

Social skills trainingCognitive-behavioral therapy

Mindfulness

PsychosocialrehabilitationEveryday lifeskills

Social open-ness

Communityinteraction

Family ther-apy

Job coachingConstructionof profess-ional oracademicprojects

PatientsFamilies

a Sociodemographic, medical, psychosocial, and neuropsychological data for each par-

ticipant is collected during care planning, throughout the rehabilitation process, and after

the end of the care plan.


FRANCK ET AL.

Participants’ WEMWBS mean score showed altered

mental well-being (mean=42.3; median=42; interquartile

range=16–70, compared with a mean score of 51 in a sample

from the working general population and 52 in a sample of

students [31]). Possible scores on the instrument range from

5 to 70, with higher scores indicating good well-being. The

WEMWBS scores indicated that 36% (N=131) of participants

had low well-being (score in the 4th percentile or lower),

29% (N=105) had mildly low well-being (score between the

5th and 25th percentiles) and 35% (N=127) had a satisfactory

level of well-being. According to the Insight Scale, only 58%

(N=167) of participants had a good level of insight (score$9)

and 42% of participants had a low level of insight (N=121).

Figure 2 shows the recovery stages and care needs of

the participants. The satisfaction scale (adapted from the

CASIG) assesses a person’s satisfaction with nine life

TABLE 1. Characteristics at baseline of REHABase project participants (N=1,397)

Characteristic N %

Sex

Male 944 68

Female 453 32

Age

,20 112 8

20–29 508 36

30–39 385 28

40–49 219 16

$50 121 8

No data 52 4

Education level

Primary school 18 1

Secondary school 290 21

High school 578 41

University 419 30

No data 92 7

Marital status

Single 990 71

In a couple 188 13

Divorced 68 5

No data 151 11

Housing accommodation

Personal 531 38

Family 566 40

Supervised household or apartment 127 9

None 14 1

No data 159 12

Socioeconomic status

Disability pension (specialized for

handicapped persons)a543 39

No income 277 20

Unemployment benefit 148 10

Mainstream work environment 122 9

Disability allowanceb 73 5

Long-term sickness absence 29 2

Protected work environment 24 2

No data 181 13

Referring institution

Private sector 581 42

Public sector 491 35

Patient, family, or association 92 7

Nongovernmental organization

community health sector

16 1

Characteristic N %

Other 58 4

No data 159 11

Protection

None 1,030 74

Protection of vulnerable

adultsc162 13

Guardianshipc 19 2

No data 186 13

Duration of illness since symptom

onset (years)

,1 40 3

1–2 70 5

2–3 58 4

3–5 119 8

5–10 226 16

$10 495 35

No data 389 29

N of hospitalizations

0 249 18

1–2 426 30

3–5 318 23

5–10 101 7

$10 53 4

No data 250 18

Lifetime duration of hospitalization

(M6SD months)d5.0068.39

Current drug of addiction

Alcohol 256 18

Cannabis 160 11

Tobacco 440 32

Behavioral 154 11

None 126 9

No data 261 19

Medication

None 136 10

Monotherapy 365 26

Combination therapy with

2 treatments

310 22


3 treatments

216 16


$3 treatments

173 12

No data 197 14

a In France, people with a disability may be eligible for a pension to compensate for their disorder and their difficulty in finding work.b Allowance given to individuals who have been unemployed after events prevent them from continuing to work. The allowance varies from 30% to 50% of their

former salary.c In France, people with mental illness can benefit from legal protection. The first option is basic protection under which the person can make decisions about

most areas of his or her life. The second option is guardianship, under which most decisions are made by a guardian, who can be either a member of the

patient’s family or a representative of a public institution.d Median, 2 months; range, 0–7 years.



dimensions. As expected, the higher the dissatisfaction level,

the more the participant requested help.

Participant dissatisfaction decreased as progress was

made along the recovery path (Figure 3), except in the last

recovery stage. More precisely, the dissatisfaction rate was

paradoxically much higher among participants in the final

STORI recovery stage (5th stage, growth) than among those

in the previous stage (4th stage, rebuilding). In stage 5, the

level of dissatisfaction (extracted from the satisfaction scale)

was higher than in stage 4 in eight of the nine areas. More

than 50% of participants in the growth stage remained dis-

satisfied with their professional training and employment.

DISCUSSION

The rehabilitation centers and the REHABase cohort project

came about thanks to multiple stakeholders, including as-

sociations, families, and caregivers. Initial data show that

most participants asked for help in four areas: employment,

cognitive functioning, symptom management, and inter-

personal relationships. The results highlight that the dis-

satisfaction and needs of participants with serious mental

illness vary according to the recovery stage. Those who have

reached their final recovery stage still require further help in

most areas. The dissatisfaction rates were similar for par-

ticipants at the beginning and at the end of the recovery

process.

Responding to needs is one of the key elements of

high-quality care that facilitates recovery (32). Therefore, psy-

chosocial rehabilitation interventions that focus on partici-

pants’ goals should be more effective than other types of

intervention (33). Recovery has been described as compris-

ing five processes (34): connectedness with others; hope,

giving a purpose to recovery and enabling the person to

achieve it; identity, i.e., being aware that one is not defined by

the illness, although it is a small part of one’s identity; find-

ing meaning in life; and taking responsibility for recovery.

One aim in developing the STORI was to establish the

stage at which specific care should be offered to a partici-

pant and consequently to develop guidelines for providing

TABLE 2. Secondary DSM-5 diagnoses at baseline of REHABase

project participants (N=1,397), by main diagnosis

Diagnosis N %

Schizophrenia spectrum disordera 612 49

None 480 78

Substance-related disorder 43 8

ASD and other developmental

disorders

24 4

Other 65 11

ASD and other developmental disorders 166 13

None 57 34

Other developmental disorderb 36 22

Anxiety disorder 23 14

Depression disorder 12 7

Other 38 23

Personality disorder 146 12

None 83 57

Depression disorder 17 12


Other 29 20

Bipolar disorder 119 9

None 83 70




Other 6 5

Major depressive disorder 77 6

None 37 48



Other 15 20

a Includes diagnoses such as schizophrenia, schizoaffective disorder, and

schizophreniform disorder.b Includes all developmental disorders except autism spectrum disorder

(ASD).

FIGURE 2. Recovery stages of REHABase project participants (N=1,397) (A) and proportion at baseline reporting a need for care or

interventions in nine life dimensions (B)

0 10 20 30 40 50 60 70 80

Professional trainingand employment

Cognitive functioning

Symptom management

Interpersonalrelationships

Accommodation anddaily functioning

Budget and administra-tive task management

Health management

Transport management

Hobbies

Percentage

Proportion of patients asking for care or psychosocial interventionsProportion of unsatisfied patients

Awareness15%

Preparation11%

Growth32%

Moratorium21%

Rebuilding21%

A B


FRANCK ET AL.

appropriate care based on an individual’s needs. Given the

nonlinear nature of personal recovery, such a goal may be

overly ambitious at this time, and future research will be

needed to determine whether the recovery process includes

five distinct stages or only three, as documented in other

models (35–38). Despite these limitations, the STORI is useful

in clinical practice, because identifying a patient’s current

stage of personal recovery can informclinical decisionmaking

about the most appropriate intervention (38).

Fifty-three percent of the REHABase participants were

already actively engaged in recovery (rebuilding phase, 21%;

growth phase, 32%). Less than a quarter were still in the

moratorium phase, and according to the stages established

by Andresen et al. (24), these participants might still be

looking for hope. The REHABase project could help de-

termine the effects of psychiatric rehabilitation on an in-

dividual’s progress through recovery in comparison with

improvements in clinical and functional outcomes. The

data collected in the REHABase project could also be used

to suggest a refinement of the stage model proposed by

Andresen et al. (24). The REHABase project may contribute

to shifting the culture of care toward more recovery-

oriented practices by introducing personal recovery into

clinical decision making about psychosocial interven-

tions (38).

Compared with samples in previous studies and control

populations, the REHABase project has a high proportion of

participants with relatively low well-being scores. Whereas

Tennant et al. (39) showed that the medianWEMWBS score

was 50 in a student sample and 51 in a general population

sample, with interquartile ranges of 45–55 and 45–56, re-

spectively, the REHABase participants had amedian score of

42, with an interquartile range of 16–70. This result reflects

the overall altered life satisfaction and self-realization in

severe mental illness and ASD.

Initial data on participant employment indicated that

only 10% of participants worked in a mainstream environ-

ment, 68% were dissatisfied with their professional situa-

tion, and 78% expressed a need for help in this area. This

finding is consistent with data from previous research—work

plays a central role in the recovery process (40). It is thus

necessary to assess a participant’s needs in terms of re-

habilitation interventions (41, 42). In France, persons with

schizophrenia have more difficulties accessing employment

(employment rate of 11.5%), compared with their counter-

parts in other countries, such as Germany (employment rate

of 30.3%) (43). Graduating from a university and accessing

competitive employment are also challenging for people

with ASD. A Swedish sample of 50 participants with ASD

who were prospectively followed for 20 years had a gradu-

ation rate of 14% and employment rates of 33% or 27%,

depending on the presence of psychiatric comorbidities (44).

Professional training or competitive employment was a

major life goal for 78% of the participants included in

REHABase, and these individuals identified vocational re-

habilitation as their primary care need.

REHABase includes various scales that measure a par-

ticipant’s most unsatisfying dimensions, goals, and life pri-

orities. For example, in the satisfaction scale adapted from

CASIG, the care needs and priorities are evaluated in nine

dimensions. As expected, the proportion of unsatisfied par-

ticipants decreased during the recovery process. However,

surprisingly, it increased again in the final stage of recovery

(i.e., growth) for all the dimensions assessed. This result

needs to be interpreted carefully given the cyclical nature of

personal recovery and its potential correlations with other

FIGURE 3. Proportion of REHABase project participants (N=1,397) reporting dissatisfaction with nine life dimensions at baseline, by

stage of recovery

0

10

20

30

40

50

60

70

80

Part

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Symptommanagement

Professionaltraining andemployment

Interpersonalrelationships

Cognitivefunctioning

Budget andadministrative

taskmanagement

Hobbies Transportmanagement

Healthmanagement

Accommo-dation



variables, such as low insight (45) and self-stigma (46). In-

dividuals who are in the growth stage at the beginning of

psychiatric rehabilitation and who have low insight into

their illness might consider themselves as both recovered

from mental illness and dissatisfied with one or more major

life activities. Therefore, the effects of psychiatric re-

habilitation on personal recovery should be investigated

taking into account the fact that such effects will be influ-

enced by the simultaneous changes in insight into illness and

self-stigma during the follow-up period. Finally, it is im-

portant to note that the study was cross-sectional, and no

causal statements can be extracted from the data.

CONCLUSIONS

Participants’ needs were not met in several major life ac-

tivities, and further research is needed to better characterize

these needs. Indeed, improving the fit between needs and

the care available, which could reduce both the duration and

the cost of care, should be a priority, considering the large

numbers of individuals affected by serious mental illness

and ASD and the need to optimize the use of public funds.

Improving our understanding of the trajectories of illness

and the effects of psychosocial rehabilitation remains a major

challenge. To our knowledge, REHABase is the first national

project to collect transnosographic data on psychiatric ser-

vice users, promoting care strategies based on participants’

self-determination (empowerment). The two main focuses

of this project are the functional impact of the disorder on

participants’ daily lives and the impact of the psychosocial

therapies provided by the psychosocial rehabilitation cen-

ters. Future results should improve our understanding of

the recovery process.

Furthermore, the REHABase data will be used to study

factors that determine or hinder recovery (e.g., self-stigma)

(47, 48). The impact of personalized psychosocial reha-

bilitation will be reported for several variables: psychosocial

condition, cognitive processes, well-being, social inclu-

sion, interpersonal relationships, and professional situa-

tion. Finally, by recording the effectiveness of personalized

rehabilitation action plans, the REHABase project may be

key to improving the quality of care and to developing

guidelines.

AUTHOR AND ARTICLE INFORMATION

Centre Ressource de Réhabilitation Psychosociale et de Remédia-

tion Cognitive (CRR), Hôpital Le Vinatier, Centre National de la

Recherche Scientifique (CNRS) et Université de Lyon, Lyon, France

(Franck, Bon, Dekerle, Plasse, Cervello); Centre Référent Lyonnais de

Réhabilitation Psychosociale (CL3R), Centre Hospitalier Le Vinatier, Lyon

(Franck, Martin); REHALise, Centre Hospitalier Universitaire de Saint-

Etienne, Saint-Etienne, France (Massoubre, Pommier); Centre Référent

de Réhabilitation Psychosociale de Limoges (C2RL), Limoges, France

(Legros-Lafarge); CREATIV & URC Pierre Deniker, Centre Hospitalier

Laborit, Poitiers, France (Jaafari, Guillard-Bouhet); Centre Référent de

Réhabilitation Psychosociale (C2RP), Centre Hospitalier Charles Perrens,

Pôle Universitaire de Psychiatrie Adulte, Bordeaux, France (Quilès,

Verdoux); Centre Référent de Réhabilitation Psychosociale (C2RP), Pôle

De Réhabilitation Psychosociale, Bruges, France (Couhet); Centre Réf-

érent de Réhabilitation Psychosociale (C3R), Centre Hospitalier Alpes

Isère, Grenoble, France (Gouache, Dubreucq); Centre de Référence

Maladies Rares Génopsy, Centre Hospitalier Le Vinatier, CNRS et Uni-

versité de Lyon, Lyon (Demily). Send correspondence to Dr. Franck

([email protected]).

This work was funded by Auvergne-Rhône-Alpes and Nouvelle-

Aquitaine regional health agencies. The authors thank Kim Barrett for

editorial assistance; Floriane Todoroff for her contribution to the figures;

Emmanuel Gauthier and Mara Conil for data management; and the

members of the REHABase Network (the following teams have all par-

ticipated in developing the study: C2RL, Limoges; C2RP, Bordeaux; C3R,

Grenoble; CL3R, Lyon; CREATIV & URC Pierre Deniker, Poitiers; and

REHALise, Saint-Etienne). The funding source had no role in the data-

base creation and the data analysis or interpretation.

The authors report no financial relationships with commercial interests.

Received September 8, 2018; revisions received October 23 and

November 22, 2018; accepted December 7, 2018; published online

January 29, 2019.

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Stigma Resistance in Serious Mental Illness and Autism Spectrum Disorder: results from the

RehaBASE national psychiatric rehabilitation cohort

Running title: Stigma Resistance in Serious Mental Illness and Autism Spectrum Disorder

AUTHORS

Dubreucq Ja,b,c,d

, Plasse Jh,i

, Gabayet Fb,c

, Faraldo Mb,c

, Blanc Of, Chereau I

c,f, Cervello S

a, h,i,, Couhet

Gn, Demily C

a,j, Guillard-Bouhet N

l, Gouache B

b, Jaafari N

l, Legrand G

g, Legros-Lafarge E

k,

Pommier Re, Quilès C

m, Straub D

i, Verdoux H

m, Vignaga F

j, Massoubre C

e , REHABAse network*and

Franck Na,h,i





e REHALise, CHU de Saint-Etienne

f CMP B, CHU, EA 7280 Faculté de Médecine, Université d'Auvergne, BP 69 63003 Clermont-Ferrand Cedex 1, France.

g Centre Hospitalier Sainte Marie de Clermont Ferrand, 33 rue Gabriel Péri, CS 9912, 63037 Clermont-Ferrand Cedex 1

h Centre ressource de réhabilitation psychosociale et de remédiation cognitive, Hôpital Le Vinatier, UMR 5229, CNRS & Université Lyon 1, Université de Lyon

i Centre référent lyonnais de réhabilitation psychosociale CL3R, centre hospitalier Le Vinatier, Lyon j Centre de référence maladies rares Génopsy, pôle ADIS, centre hospitalier Le Vinatier, UMR 5229, CNRS & Université Lyon 1, Université de Lyon k Centre Référent de Réhabilitation Psychosociale de Limoges C2RL, CH Esquirol, Limoges

l CREATIV & URC Pierre Deniker, CH Laborit, Poitiers

m Centre référent de réhabilitation psychosociale C2RP Nouvelle Aquitaine Sud, Pôle universitaire de psychiatrie adulte, centre hospitalier Charles Perrens, Bordeaux& Univ. Bordeaux, Inserm, Bordeaux Population Health Research Center, team pharmacoepidemiology, UMR 1219, F-33000 Bordeaux, France

n Centre référent de réhabilitation psychosociale C2RP Nouvelle-Aquitaine Sud, Pôle de réhabilitation psychosociale, Centre de la Tour de Gassies, Bruges

i Centre de Réhabilitation Psychosociale, Centre Hospitalier de Roanne j Dispositif de Soins de Réhabilitation Psychosociale, Centre Psychothérapeutique de l’Ain

* Correspondence should be sent to: Julien DUBREUCQ

Centre référent de réhabilitation psychosociale et de Remédiation Cognitive (C3R), CH Alpes Isère, 1 place

du Conseil National de la Résistance, 38400 Saint Martin d’Hères, France

Tel: (33 4) 56 58 88 00, e-mail: [email protected]

Abstract

Purpose: Stigma resistance (SR) is defined as one’s ability to deflect or challenge stigmatizing beliefs. SR is

positively associated with patient’s outcomes in Serious Mental Illness (SMI). SR appears as a promising

target for psychiatric rehabilitation as it might facilitate personal recovery. The objectives of the present

study are: (i) to assess the frequency of stigma resistancein a multicentric non-selected psychiatric

rehabilitation SMI and Autism Spectrum Disorder (ASD) sample; (ii) to investigate the correlates of low

stigma resistance in different SMI and in ASD

Methods: 738 SMI or ASD outpatients were recruited fromthe French National Centers of Reference for

Psychiatric Rehabilitation cohort (REHABase). Evaluation included standardized scales for clinical severity,

quality of life, satisfaction with life, wellbeing, and personal recovery, a large cognitive battery, and daily

functioning assessment. SR was measured using Internalized Stigma of Mental Illness- SR subscale.

Results: 54.1% of the total sample had elevated SR. The highest frequency (59.3%) was found in major

depression and the lowest (36.8%) in anxiety disorders. In the multivariate analysis, elevated stigma

resistance was best predicted by satisfaction with family relationships (p<0.002, OR=1.18[1.05-1.33]).

Conclusion: The present study has indicated the importance of addressing stigma resistance in patients

enrolled in psychiatric rehabilitation. Cognitive remediation, family psychoeducation and recovery-oriented

psychoeducation might improve SR. The effectiveness of psychiatric rehabilitation on SR and the potential

mediating effects of changes in SR on treatment outcomes should be further investigated.

Keywords: stigma resistance, serious mental illness, autism spectrum disorder, prevalence, psychiatric

rehabilitation

1. Introduction

Public stigma refers to the endorsement of negative stereotypes and discriminating attitudes about Serious

Mental Illness (SMI) or Autism Spectrum Disorder (ASD) by the general population [1]. The effects of

stigma on individuals (or personal stigma) include perceived, experienced and self-stigma. Self-stigma

occurs when someone moves beyond awareness of stigma to accepting the negative stereotypes about SMI or

ASD as true to describe him/herself [1]. Self-stigma is associated with decreased hope, wellbeing, quality of

life, motivation to achieve life goals and poorer recovery-related outcomes [2]. Some people with SMI will

however respond to awareness of stigma with indifference or righteous anger [1]. Stigma Resistance (SR) is

defined as one’s ability to deflect or challenge stigmatizing beliefs [3]. SR concerns a wide range of people

with SMI (49.2% of the 1,229 participants with schizophrenia (SZ) and 49.7% of the 1,182 participants with

mood disorders in a 2010 European study had moderate to high levels of stigma resistance [4] [5]). SR has

been associated negatively with self-stigma in a 2016 meta-analysis composed of 48 studies [6]. SR was

positively associated with self-efficacy, self-esteem, empowerment, hope, social function, personal recovery

and subjective quality of life in SMI [6], [7], [8]. Metacognitive abilities [9][10][11], outpatient treatment

[12], lower stereotype endorsement [8][9][10], insight into illness [6], social network [12], [13],[14], social

power [15] self-compassion [14], psychological flexibility [14], fear of negative evaluation [11] perceived

stigma [16], negative symptoms[9] and coping strategies [8][10] were significant cross-sectional correlates

of SR. Given its strong association with recovery-related outcomes, promoting SR in patients enrolled in

psychiatric rehabilitation appears promising [6]. Its potential role as a predictor of treatment outcome and the

effectiveness of recovery-oriented interventions on SR remain largely unknown.

Compared with self-stigma, SR was under-studied. Most studies concern people with schizophrenia (63.5%

of the participants in a 2016 meta-analysis [6]). Considerably less is known about SR in mood disorders [5],

[17], [18], [19], [20]. SR in borderline personality disorder (BPD) and in anxiety disorders remains largely

unknown. No study to our knowledge investigated SR and its correlates in ASD. ASD has been associated

with dangerousness to self and inability to work in over 20% of the 1000 respondents of a 2012 French

population survey [21]. The reactions of ASD patients confronted to stigma remain largely unknown. Self-

stigma is less frequent in ASD than in SMI (22.1% out of 45 patients from the REHABase network [22];

15.4% out of 149 participants in a 2019 German study [23]). Compensation strategies (defined by the

discrepancy between observable social difficulties and actual underlying social-cognitive abilities [24]) have

been associated in ASD patients with better global functioning but also with poorer mental health [24].

Modulating the use of compensation strategies could reduce the probability to experience discrimination in

social contexts and increase SR. Unsuccessful compensation strategies might in contrast be associated with

greater self-stigma and SR.

In summary stigma resistance could be a key target for improving treatment outcome during psychiatric

rehabilitation. SR was studied in cross-sectional studies including mostly people with SZ. Its frequency and

correlates in patients enrolled in psychiatric rehabilitation or being diagnosed with other SMI or ASD remain

largely unknown. The role of socio-demographic (age, gender, education level, occupational, marital or

parenting status) and illness-related (insight, cognitive functioning) variables as correlates of SR in SMI

could be further investigated. The objectives of the present study were: (i) to assess the frequency of stigma

resistance in a multicentric non-selected psychiatric rehabilitation SMI and ASD sample; (ii) to investigate

the correlates of elevated stigma resistance in SMI and in ASD

2. Material and Methods

2.1 Study population

The REHABase cohort is made up of patients from a French network of psychiatric rehabilitation centers

that has been extensively described in a previous article [25]. Patients are referred to these centers by their

general practitioner or psychiatrist, who remains in charge of routine care and treatment. The inclusion

criteria are: i) a diagnosis of serious mental illness (i.e. schizophrenia, bipolar disorder, borderline

personality disorder, major depression or severe anxiety disorders, according to the SAMSAH 2013

definition [26]) or autism spectrum disorder (DMS-5 criteria [27]); ii) a score below the cut-off scores for

social recovery according to Jaaskelainen et al. in 2013 (a score of less than 61 on the Global Assessment of

Functioning (GAF) scale [28]). A comprehensive clinical, functional and cognitive assessment is performed

to establish the individual’s strengths and weaknesses, autonomy, and occupational level. Therapeutic tools

are selected based on the participant’s personal life goals as part of an individualized psychiatric

rehabilitation action plan. The action plan can include psychoeducation, joint crisis plans, cognitive

remediation, cognitive behavior therapy, social skills training, peer-delivered interventions and supported

employment [25]. Follow-up is planned to last for 2 to 3 years. Evaluations are scheduled at baseline,

annually, and after the action plan is completed. The action plan can begin before the evaluation when

clinically relevant to support patient’s engagement in mental health care or psychiatric rehabilitation. This is

for instance the case for strengths-based case management in early psychosis and supported employment,

housing or parenting. Two thousand and fifty three patients were included in the eight REHABase sites

between January 2016 and April 2019. Seven hundred and thirty eight (35.9%) were effectively evaluated at

the time of extraction. The study obtained the authorizations required under French legislation (French

National Advisory Committee for the Treatment of Information in Health Research, 16.060bis; French

National Computing and Freedom Committee, DR-2017-268). All participants gave their informed consent.

2.2 Site selection and training

Site selection and training have been described in a previous article [25]. Since this first study, three new

sites have joined the REHABase network. The eight sites (Lyon, Grenoble, Saint-Etienne, Limoges/Poitiers,

Bordeaux, Clermont-Ferrand, Roanne and Bourg-en-Bresse) opened in France were already actively

involved in the treatment of patients with SMI (pharmacological and non-pharmacological), as well as

research on psychiatric rehabilitation and recovery-oriented practices. Each center has accepted and been

trained to use the same package of assessment tools for the baseline visit and follow-up. Clinical team

members have regular group meetings to monitor quality control and ensure good inter-rater reliability.

2.3 Data collected

General information on education, marital status, economic status, illness onset and trajectory and

comorbidities was recorded. Stigma resistance was assessed using the Internalized Stigma of Mental Illness

scale (ISMI [4] [29]), a 29-item self-report measure designed to assess one’s personal experience of stigma

related to mental disorders and is rated on a 4-point Likert scale. Items are summed to provide a mean total

score and five subscale scores (alienation or feeling of being a devaluated member of the society; stereotype

endorsement or agreement with the negative attitudes about SMI; discrimination experience; social

withdrawal as a coping strategy and stigma resistance). Stigma resistance was analysed independently of

self-stigma, these constructs having been identified as independent from each other [6]. A higher score

reflects a higher level of stigma resistance. A score above 2.5 indicates a moderate to high level of stigma

resistance [6]. Satisfaction in four life dimensions (social, familial and intimate relationships, occupational

status) was measured using visual analogue scales and a structured interview adapted from the Client

Assessment of Strengths, Interests and Goals (CASIG [30]). Illness severity was assessed using the Positive

and Negative Syndrome (PANSS [31]) and the Clinical Global Impression (CGI [32]) scales. Insight and

treatment adherence were measured with self-reported measures (Birchwood Insight Scale; BIS [33];

Medication Adherence Rating Scale; MARS [34]). General Functioning was measured with the Global

Assessment of Functioning scale (GAF [35]). Quality of Life was evaluated with the self-reported Quality of

Life scale (S-QoL [36]) and wellbeing using the Warwick-Edinburgh Mental Well-being Scale (WEMWBS

[37]). Self-esteem was assessed with the Self-Esteem Rating Scale-Short Form (SERS-SF [38]) and personal

recovery was measured using the self-reported Stage of Recovery Instrument (STORI [39]). Baseline

neuropsychological cognitive assessments include the Wechsler Adult Intelligence Scale-4th edition [40]

(WAIS-IV) subscale assessing short-term and working memory, the California Verbal Learning Test

(CVLT) [41] or RL/RI-16 [42] for global verbal memory, d2-R for selective attention, concentration and

speed of processing [43] and shopping test [44] or Six Element Test [45] for planning abilities. Theory of

mind was assessed using the Movie for the Assessment of Social Cognition (MASC) [46] and attribution

style with the Ambiguous Intentions and Hostility Questionnaire (AIHQ) [47].

2.4 Statistical analysis

Data are presented as the mean and SD for continuous variables and number and percentage for categorical

variables. A one-way analysis of variance was performed and the p-values adjusted for multiple comparisons

using Tukey’s method. The internal consistency of the ISMI total scale and subscales was measured using

Cronbach's alpha (α).

Patients’ baseline characteristics were analyzed to identify factors associated with elevated stigma resistance.

Categorical variables were analyzed using Chi-square analysis or Fisher’s exact test as appropriate, and

continuous variables were analyzed using Student’s t test or Wilcoxon’s test for non-normal variables.

Logistic regression was used to calculate OR with 95% CI. Finally, a multivariate logistic regression with

stepwise selection was performed on all predictors to investigate the factors independently associated with

the level of stigma resistance. The collinearity was checked using the variance inflation factor (VIF). P-

values <0.05 were considered significant. All statistical analyses were performed using R (R Foundation for

Statistical Computing, Vienna, Austria; https://www.R-project.org/) [48].

3. Results

Seven hundred and thirty-eight clinically stabilized patients were recruited from the REHABase network.

They had been included in this cohort study between January 2016 and April 2019. SZ was the most

represented diagnosis with 466 patients (63.1%). Other diagnoses were BD (117, 15.9%), BPD (64, 8.7%),

ASD (45, 6.1%), major depression (MDD) (27, 3.7%) and anxiety disorders (19, 2.5%). Baseline sample

characteristics are shown on Table 1.

3.1 Frequency of stigma resistance

The internal consistency for the 24-item ISMI was α=0.90. The SR subscale had an internal consistency of α

=0.49. The following values were found for the 4 other subscales: alienation α=0.81, stereotype endorsement

α=0.69, discrimination experiences α=0.78, social withdrawal α=0.78. A strong negative association was

found between SR, ISMI total score and the 4 other subscales (data not shown). Elevated stigma resistance

was found in 54.1% of the total sample (55.4% in SZ, 52.1% in BD, 59.3% in MDD, 36.8% in anxiety

disorders, 51.6% in BPD and 53.3% in ASD).

3.2 Correlates of elevated stigma resistance

Table 2 presents the results of the univariate analyses for the correlates of elevated stigma resistance.

Elevated SR was positively associated with wellbeing (WEWMBS; p<0.001, OR=1.38 [1.22-1.56]), self-

esteem (SERS; p<0.001, OR=1.02 [1.01-1.03]), quality of life (S-QoL; p<0.001, OR= 1.03 [1.02-1.04]) and

satisfaction with life (interpersonal relationships, p=0.047, OR=1.06 [1.00-1.12]); familial relationships,

p=0.05, OR=1.07 [1.00-1.14]; vocational status, p=0.011, OR=1.07 [1.01-1.14]). Elevated SR was negatively

associated with personal recovery (p<0.001). Compared with participants in the moratorium stage of

personal recovery, those in later stages showed significantly higher levels of SR (awareness, OR=1.19 [0.69-

2.06]; preparation OR=1.37 [0.74-2.54]; rebuilding, OR=2.28 [1.40-3.75]; growth OR=2.78 [1.76-4.45]).

Elevated SR was negatively associated with impaired executive functioning (working memory, p=0.049,

OR=0.38 [0.13-0.99]; planning abilities, p=0.049, OR=0.63 [0.39-1.00]), psychiatric comorbidities (p=0.034;

OR=0.68 [0.47-0.97]), clinical severity (CGI; p=0.03, OR=0.83 [0.71-0.97]), and greater insight into illness

(BIS; p=0.007, OR=0.93 [0.87-0.99]). No significant correlations were found with socio-demographic

variables, age of onset, psychiatric diagnosis, illness duration, inpatient status, number and duration of

psychiatric hospitalizations, history of suicide attempt, social cognition and psychosocial function. Table 3

presents the result of the multivariate analysis. In the multivariate analysis, elevated stigma resistance was

best predicted by satisfaction with family relationships (p<0.002, OR=1.18 [1.05-1.33]).

Discussion

To our knowledge this study is the first assessing the frequency of stigma resistance in a multicentric non-

selected psychiatric rehabilitation SMI and ASD sample. SR in SMI was within the average of European

countries (54.1% with elevated SR). The highest proportion of individuals with elevated stigma resistance

was found in MDD (59.3%) and the lowest in anxiety disorders (36.8%). SR was lower in anxiety disorders

compared with other conditions. Socio-demographic variables did not yield significant associations with SR.

Impaired executive functioning, greater insight into illness, clinical severity and psychiatric comorbidities

were negatively associated with elevated SR in contrast with most illness-related variables (psychiatric

diagnosis, age of onset, illness duration, the number and duration of psychiatric hospitalizations, inpatient

status, history of suicide attempt). Elevated stigma resistance was positively associated with self-esteem,

QoL, wellbeing, satisfaction with different life domains and personal recovery. Individuals in the late stages

of personal recovery (rebuilding or growth) had a two-fold and a three-fold likelihood, respectively of

presenting a high level of stigma resistance compared with those in the moratorium stage. Elevated SR was

best predicted in the multivariate model by satisfaction with familial relationships (risk x 1.18).

SR in SMI (2.54) was below the level reported by Firmin et al 2016 meta-analysis (2.7 out of 48 studies) [6].

SR was similar to the levels found in the Czech Republic (2.52; [49]), in China (2.49; [50]), Iran (2.46; [51])

and Ethiopia (2.41; [52]). SR was higher in France compared with North America (weighted mean=2.08,

weighted elevated SR=22%; [2]). This could be explained by the low frequency of self-stigma in North

America [2]. Elevated stigma resistance for SZ was comparable with other studies across the world

(weighted proportion=53.1% of the 2202 participants included in 6 studies; [2]). SR was within the average

for European countries for SZ (mean SR=2.50 in 8 studies; [2]). Compared with the 2010 GAMIAN-Europe

study, SR was more frequent (49.2%, mean IS=2.47; [4]) and self-stigma less frequent (29.8%, [22]; 41.7%,

[4]). The important country-related variations in this study may explain these differences (from 2.29 in

Greece to 2.70 in Lituania; [4]). SR for SZ was lower in France than in Austria (2.73, 63.3% with elevated

SR) or Nigeria (2.79; 72.7% with elevated SR; [53]). SR was comparable with Turkey (weighted mean=2.51

in 5 studies; [2]) and Ethiopia (2.52, 49.4% with elevated self-stigma; [54]). SR was higher than in India

(weighted mean= 2.43 in 2 studies), South East Asia (weighted mean=2.36 in 3 studies; [2]) and South

America (mean SR=2.4; [55]). SR in mood disorders was lower compared with other European countries

(mean SR=2.81; 59.7% with elevated SR; [5]). Elevated self-stigma was more frequent in France for people

with BD compared with other European countries (29.9%, [22]; 21.7%, [5]). SR in BD was lower than in the

USA (mean SR=3.06; [18]) but higher than in India (weighted mean=2.43 in 2 studies) or Turkey (mean

SR=2.38; [17]). Cultural factors and country or setting-related differences might explain these variations [2].

SR in anxiety disorders was lower in France than in the Czech Republic (mean SR=2.3; [49]). The higher

levels of self-stigma in mood and anxiety disorders [22] might explain the lower SR. It can also be

hypothesized that the patients with mood disorders referred to the centers for psychiatric rehabilitation had

more severe psychiatric comorbidities, are more self-stigmatized and have less abilities for resisting stigma

than the average [22]. SR in BPD was higher than in the Czech Republic (2.27; [49]) in spite of elevated

self-stigma in both countries [22]. It can be supposed that people with BPD are more self-stigmatized than

those with other SMI but have preserved abilities for resisting stigma. Further research will be necessary to

better characterize SR in anxiety disorders and BPD. Elevated SR was frequent in ASD (53.3%), while self-

stigma was less frequent in ASD compared to SMI (respectively 22.2% and 31.2%; [22]). The level of SR in

ASD was lower than in SZ or MDD but higher than in BD, BPD and anxiety disorders. This is the first study

assessing SR in ASD. Further research will be necessary to better understand SR in this population.

All socio-demographic and most illness-related variables were not significantly associated with the level of

SR. This contrasts with Firmin et al 2016 meta-analysis where age and education moderated the effects of

SR on functional outcomes [6]. Marital status was not associated with SR in contrast with some studies [7]

[12]. The absence of correlation between SR and psychiatric diagnosis concurs with a 2016 meta-analysis [6]

but contradicts other studies [7] [13]. Outpatient status did not predict SR in contrast with Sibitz et al [12].

Satisfaction with interpersonal and family relationships was positively associated with stigma resistance.

This concurs with several studies showing a positive relationship between SR and social support [12] [13]

[14]. Family psychoeducation has shown effectiveness in improving clinical and functional outcomes in

people with SZ [56]. Family psychoeducation could therefore improve SR through increased satisfaction

with familial relationships. Future research should investigate its potential effects on self-stigma and SR.

Insight into illness was negatively associated with SR, in contrast with Firmin et al. [6]. The relationships

between insight into illness and SR are still unclear. SR could contribute to improved insight instead of being

a prerequisite for resisting stigma [6]. Insight into illness predicts and compounds the effects of self-stigma

on depression and suicidal ideation [2], [57], [58], [22], [59]. Recovery-oriented psychoeducation targeting

improvements in self-stigma and SR could therefore protect against insight-related depression and should be

further developed [58]. Stigma resistance was negatively associated with self-stigma in accordance with

other studies [6]. This subscale showed however poor internal consistency. As suggested previously self-

stigma and stigma resistance are distinct constructs and should be measured with more specific scales [6].

Impaired executive functioning was associated with lower SR. Cognitive impairments were negatively

associated with the use of adaptive coping strategies [60], which predicted SR in previous research [8] [10].

SR was associated with resilience [61], which has been identified as a potential mediator of the effects of

cognitive impairments on self-stigma and psychosocial function [62]. Cognitive remediation could therefore

be effective on SR through improved executive functioning and increased use of adaptive coping strategies

[63]. Considering the positive association between metacognitive abilities and SR [9] [11], improving

metacognition during psychiatric rehabilitation with cognitive remediation or specific interventions could

improve SR. This remains however to be investigated. SR was not associated with social cognition or

negative symptoms in contrast with several studies [6] [9] [58]. SR was negatively associated with clinical

severity and psychiatric comorbidities in line with previous research showing an association between general

psychopathology and SR [6] [61]. Stigma resistance was not associated with psychosocial function in

contrast with previous research [8]. Elevated stigma resistance was positively associated with self-esteem,

QoL, wellbeing, satisfaction with different life domains and personal recovery. This is in line with several

studies showing positive associations between self-esteem, subjective quality of life and satisfaction with

life, personal recovery and stigma resistance [6] [7] [8] [14]. Improving SR could facilitate personal recovery

by developing a positive social identity extending beyond mental illness [6]. Further research should

investigate whether psychiatric rehabilitation improves SR and the potential effects of improved SR on

personal recovery.

In short, elevated stigma resistance was frequent in a large non-selected sample of people with SMI and ASD

enrolled in psychiatric rehabilitation. The correlations between stigma resistance, clinical severity, cognitive

functioning, insight, wellbeing, self-esteem, satisfaction with life and personal recovery suggest to design

specific interventions targeting SR. The effectiveness of psychiatric rehabilitation on SR after one-year of

follow-up and the potential mediating role of changes in stigma resistance on treatment outcomes should be

further investigated.

Limits: Although the REHABase network covers a large proportion of the French territory, it cannot be

definitively asserted that its database constitutes a representative sample of the French population of SMI and

ASD patients. The REHABase database is composed of participants enrolled in psychiatric rehabilitation and

might therefore not be representative of all patients with SMI or ASD. However, some sample characteristics

(including sex ratio, age at illness onset, comorbidities) suggest that the present sample is comparable to the

general community-dwelling SMI population.

Strengths. The present study has some clear strengths: a large non-selected sample of community-dwelling

SMI and ASD outpatients, the use of a large bundle of standardized evaluation scales, and the inclusion of a

large number of potential confounding factors in the multivariate analysis.

Acknowledgements

This work was funded by Auvergne-Rhône-Alpes and Nouvelle-Aquitaine regional health agencies. The

authors thank Emmanuel Gauthier and Mara Conil for data management; and the members of the REHABase

Network (the following teams have all participated in developing the study and collecting the data: C2RL,

Limoges; C2RP, Bordeaux; C3R, Grenoble; CL3R, Lyon; CREATIV & URC Pierre Deniker, Poitiers; CMP

B CHU Clermont-Ferrand, CH Roanne, DSRP Bourg en Bresse and REHALise, Saint-Etienne).

Role of the funding source: This work was funded by Auvergne-Rhône-Alpes and Nouvelle-Aquitaine

regional health agencies. The funding source had no role in the database creation and the data analysis or

interpretation.


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Table1:Patient characteristics

All patients (n=738)

Gender (n=738) Male 500 (67.8)

Female 238 (32.2)

Age at the time of admission (n=738) Mean (SD) 33.2 (10.1)

Education level (n=726) Primary/Secondary school 137 (18.9)

High school 365 (50.3)

University 224 (30.8)

Housing status (n=729) Personal accommodation 362 (49.7)

Family accommodation 282 (38.7)

Others (supervised appartment, household) 85 (11.6)

Occupational status (n=723) Without income 149 (20.6)

Competitive/sheltered work 62 (8.6)

Unemployment / Disability benefits 512 (70.8)

Marital status (n=728) Single 625 (85.9)

In a couple 103 (14.1)

Number of children (n=722) Without child 606 (83.9)

At least one child 116 (16.1)

Legal protection (n=721) Without 613 (85.0)

With 108 (15.0)

Values are mean (SD) or N(%).

Table 2:Association between medical factors and quality of life with elevated resistance stigma in

univariate logistic regression

All patients

(n=738)

Elevated

stigma

resistance

(n=399)

Low stigma

resistance

(n=339)

P-

value Odds ratio (univariate)

Gender (n=738) Male 500 (67.8) 279 (69.9) 221 (65.2) 0.17 -

Female 238 (32.2) 120 (30.1) 118 (34.8)

0.81 (0.59-1.10, p=0.171)

Education level (n=726) Primary/Secondary school 137 (18.9) 79 (20.2) 58 (17.4) 0.438 -

High school 365 (50.3) 199 (50.8) 166 (49.7)

0.88 (0.59-1.31, p=0.528)

University 224 (30.9) 114 (29.1) 110 (32.9)

0.76 (0.49-1.17, p=0.211)

Diagnoses class (DSM5) (n=738)

Developmental disorders (ASD) 45 (6.1) 24 (6.0) 21 (6.2) 0.665 -

Schizophrenia (SZ) 466 (63.1) 258 (64.7) 208 (61.4)

1.09 (0.58-2.00, p=0.794)

Bipolar disorders (BD) 117 (15.9) 61 (15.3) 56 (16.5)

0.95 (0.48-1.90, p=0.891)

Major depressif disorders (MDD) 27 (3.7) 16 (4.0) 11 (3.2)

1.27 (0.49-3.40, p=0.624)

Anxiety disorders 19 (2.6) 7 (1.8) 12 (3.5)

0.51 (0.16-1.51, p=0.231)

Personality disorder (BPD) 64 (8.7) 33 (8.3) 31 (9.1)

0.93 (0.43-2.00, p=0.855)

Illness duration (years) (n=649)

Mean (SD) 11.5 (8.7) 11.3 (8.2) 11.8 (9.2) 0.818 0.99 (0.98-1.01, p=0.499)

Psychiatric comorbidity (n=629)

No 465 (73.9) 263 (77.4) 202 (69.9) 0.034 -

Yes 164 (26.1) 77 (22.6) 87 (30.1)

0.68 (0.47-0.97, p=0.034)

Number of previous admissions (n=667)

Mean (SD) 3.2 (3.6) 3.2 (3.4) 3.3 (3.8) 0.987 0.99 (0.95-1.04, p=0.796)

Duration of hospitalization (in month) (n=589)

Mean (SD) 6.5 (13.1) 7.4 (16.3) 5.3 (7.5) 0.164 1.02 (1.00-1.04, p=0.054)

Suicide attempt (n=704) No 493 (70.0) 269 (70.4) 224 (69.6) 0.805 -

Yes 211 (30.0) 113 (29.6) 98 (30.4)

0.96 (0.69-1.33, p=0.805)

Global Assessment of Functioning (n=520)

Mean (SD) 56.7 (13.4) 57.4 (13.8) 55.9 (12.8) 0.251 1.01 (1.00-1.02, p=0.229)

Clinical Global Impression (n=516)

Mean (SD) 4.1 (1.1) 4.0 (1.1) 4.2 (1.1) 0.03 0.83 (0.71-0.97, p=0.023)

CASIG adaptation - Satisfaction level with interpersonal relationships (n=575)

Mean (SD) 5.8 (2.9) 6.0 (2.8) 5.5 (2.9) 0.047 1.06 (1.00-1.12, p=0.042)

CASIG adaptation - Satisfaction level with family relationships (n=575)

Mean (SD) 6.7 (2.6) 6.9 (2.5) 6.5 (2.7) 0.05 1.07 (1.00-1.14, p=0.038)

CASIG adaptation - Satisfaction level with intimate relationships (n=569)

Mean (SD) 3.9 (3.2) 4.2 (3.2) 3.7 (3.1) 0.081 1.05 (1.00-1.11, p=0.074)

CASIG adaptation - Satisfaction level with vocational status (n=555)

Mean (SD) 3.2 (2.9) 3.5 (2.9) 2.9 (2.9) 0.011 1.07 (1.01-1.14, p=0.019)

CASIG adaptation - Satisfaction level with education (n=574)

Mean (SD) 5.2 (2.9) 5.4 (2.8) 5.0 (3.0) 0.088 1.05 (1.00-1.12, p=0.072)

SQOL18 total score (% satisfaction) (n=655)

Mean (SD) 50.8 (17.9) 54.4 (17.0) 46.6 (18.1) <0.001 1.03 (1.02-1.04, p<0.001)

SERS total score (n=630) Mean (SD) 1.6 (20.7) 4.8 (20.0) -2.3 (21.0) <0.001 1.02 (1.01-1.03, p<0.001)

Global STage Of Recovery Instrument

1 - Moratorium 123 (19.8) 49 (14.6) 74 (25.9) <0.001 -

(max of stages) (n=621)

2 - Awareness 93 (15.0) 41 (12.2) 52 (18.2)

1.19 (0.69-2.06, p=0.531)

3 - Preparation 63 (10.1) 30 (9.0) 33 (11.5)

1.37 (0.74-2.54, p=0.310)

4 - Rebuilding 143 (23.0) 86 (25.7) 57 (19.9)

2.28 (1.40-3.75, p=0.001)

5 - Growth 199 (32.0) 129 (38.5) 70 (24.5)

2.78 (1.76-4.45, p<0.001)

IS Birchwood total score (n=634)

Mean (SD) 8.8 (2.5) 8.6 (2.5) 9.0 (2.5) 0.007 0.93 (0.87-0.99, p=0.026)

Warwick-Edinburgh Mental Well-being Scale (z-score) (n=705)

Mean (SD) -1.2 (1.3) -1.0 (1.2) -1.5 (1.3) <0.001 1.38 (1.22-1.56, p<0.001)

Medication Adherence Rating Scale total score (n=594)

Mean (SD) 6.7 (1.9) 6.8 (1.9) 6.6 (2.0) 0.514 1.04 (0.96-1.13, p=0.336)

Long term memory (CVLT/RLRI) (n=517) Normal level 380 (73.5) 196 (71.3) 184 (76.0) 0.221 -

Deficit level(a) 137 (26.5) 79 (28.7) 58 (24.0)

1.28 (0.86-1.90, p=0.222)

Executing functioning (Digit span immediate – Working memory) (n=538)

Normal level 519 (96.5) 283 (97.9) 236 (94.8) 0.049 -

Deficit level(a) 19 (3.5) 6 (2.1) 13 (5.2)

0.38 (0.13-0.99, p=0.057)

Executing functioning (Digit span delayed- Working memory) (n=536)

Normal level 511 (95.3) 275 (95.5) 236 (95.2) 0.859 -

Deficit level(a) 25 (4.7) 13 (4.5) 12 (4.8)

0.93 (0.41-2.10, p=0.859)

Attention (D2-R - Processing speed) (n=424) Normal level 309 (72.9) 170 (70.8) 139 (75.5) 0.28 -

Deficit level(a) 115 (27.1) 70 (29.2) 45 (24.5)

1.27 (0.82-1.98, p=0.280)

Planning abilities (Shopping test - Reaction time) (n=472)

Normal level 384 (81.4) 219 (84.6) 165 (77.5) 0.049 -

Deficit level(a) 88 (18.6) 40 (15.4) 48 (22.5)

0.63 (0.39-1.00, p=0.050)

Planning abilities (Shopping test - Error) (n=473)

Normal level 412 (87.1) 231 (89.2) 181 (84.6) 0.137 -

Deficit level(a) 61 (12.9) 28 (10.8) 33 (15.4)

0.66 (0.39-1.14, p=0.138)

ToM (n=221) Normal level 93 (42.1) 45 (40.9) 48 (43.2) 0.725 -

Deficit level(a) 128 (57.9) 65 (59.1) 63 (56.8) 1.10 (0.64-1.88, p=0.725)

Values are mean(SD) or N(%). Bold font indicates p value <0.05. (a) : Cognitive deficits class was performed by score < 5th percentile or z-score < -1.65.

Table 3: Multivariate logistic regression summary (with stepwise selection)

Elevated stigma resistance

Predictors (n = 221) Estimate Std. Error p-value Odds ratio 95% CI for odds ratio

(Intercept) -0.5949 0.7256 0.412 0.55 0.13 – 2.26

Clinical Global Impression -0.2138 0.1178 0.07. 0.81 0.64 – 1.01

CASIG adaptation - Satisfaction level with family relationships 0.1622 0.0592 0.006* 1.18 1.05 – 1.33

CASIG adaptation - Satisfaction level with education 0.1004 0.0521 0.054. 1.11 1.00 – 1.23

Model chi2(3)=18.64, p < 0.001

Signif. codes: 0 ‘***’ 0.001 ‘**’ 0.01 ‘*’ 0.05 ‘.’ 0.1

Narrative Enhancement and Cognitive Therapy (NECT) to improve social functioning in

people with Serious Mental Illness: study protocol for a stepped-wedge randomized controlled

trial

Running title: NECT and social function: study protocol

AUTHORS

Dubreucq Ja,b,c,d

, Faraldo Mb,c

, Abbes Mbc

, Ycart Bg, Richard-Lepouriel H

h, Favre S

h, Jermann F

h,

Attal Jk, Bakri M

i, Cohen T

b,c Cervello C

e,f , Chereau I

c,j, Cognard C

n, De Clercq M

o, Douasbin A

n,

Giordana J.Yp, Giraud-Baro E

r, Guillard-Bouhet N

m, Legros-Lafarge E

l, Polosan M

q, Pouchon A

q,

Rolland Me,f

, Rainteauk N, Roussel C

o, Wangermez C

m, Yanos PT, Lysaker PH, Franck N

a,e,f





e Centre Ressource de Réhabilitation Psychosociale et de Remédiation cognitive, Centre Hospitalier Le Vinatier

f Centre Référent Lyonnais de Réhabilitation Psychosociale et de Remédiation Cognitive (CL3R), Centre

Hospitalier Le Vinatier

g Laboratoire Jean Kuntzmann, CNRS UMR 5224, Université Grenoble-Alpes, France

h Geneva University Hospital, Department of Psychiatry, Mood disorders Unit, 20bis rue de Lausanne, CH-1201 Geneva

i Centre de Réhabilitation Psychosociale et de Remédiation Cognitive (C2R), CH Drôme Vivarais

j CMP B, CHU, EA 7280 Faculté de Médecine, Université d'Auvergne, BP 69 63003 Clermont-Ferrand Cedex 1, France.

k Service Universitaire de Psychiatrie Adulte, Hôpital la Colombière, CHRU Montpellier, Université Montpellier 1, Inserm 1061, Montpellier, France.

l Centre Référent de Réhabilitation Psychosociale de Limoges C2RL, CH Esquirol, Limoges

m CREATIV & URC Pierre Deniker, CH Laborit, Poitiers

n Unité Ariane de rehabilitation psychosociale, EPSM Caen

o Centre départemental de réhabilitation psychosociale des Glières, 219 chemin des bois des Fornets, 74800

La Roche sur Foron

p Centre Hospitalier Sainte Marie de Nice, 87 Avenue Joseph Raybaud, 06100 Nice

q Centre Expert Troubles Bipolaires, Service Universitaire de Psychiatrie, CHU de Grenoble et des Alpes,

CS10217, F-38043 Grenoble, France

r Clinique du Dauphiné- Groupe Sinoué, 252 Route de Saint-Nizier, 38180 Seyssins

* Correspondence should be sent to: Julien DUBREUCQ

Centre référent de réhabilitation psychosociale et de Remédiation Cognitive (C3R), CH Alpes Isère, 1 place

du Conseil National de la Résistance, 38400 Saint Martin d’Hères, France

Tel: (33 4) 56 58 88 00, e-mail: [email protected]

Background: Self-stigma is highly prevalent in Serious Mental Illness (SMI) and is associated with poorer

clinical and functional outcomes. Narrative Enhancement and Cognitive Therapy (NECT) is a group-based

intervention combining psychoeducation, cognitive restructuring and story-telling exercises to reduce self-

stigma and its impact on recovery-related outcomes. Despite evidence of its effectiveness on self-stigma in

schizophrenia-related disorders, it is unclear whether NECT can impact social functioning.

Methods: This is a 12 centre stepped-wedge randomized controlled trial of NECT effectiveness on social

functioning in SMI, compared to treatment as usual. One hundred and twenty participants diagnosed with

schizophrenia, bipolar disorder or borderline personality disorder will be recruited across the 12 sites.

Participants will be randomized into two groups: one group (Group 1) receiving the intervention at the

beginning of the study (T0), one group (Group 2) treated as a control group for the first 6 months and then

receiving the intervention after (T1). Outcomes will be compared in both groups at T0 and T1, 6-month and

12-month outcomes for Groups 1 and 2 will be measured without a control group at T2 (to evaluate the

stability of the effects over time). Evaluations will be conducted by assessors blind to treatment allocation.

The primary outcome is personal and social performance compared across randomization groups. Secondary

outcomes include self-stigma, self-esteem, wellbeing, quality of life, illness severity, depressive symptoms

and personal recovery.

Discussion: NECT is a promising intervention for reducing self-stigma and improving recovery-related

outcomes in SMI. If shown to be effective in this trial, it is likely that NECT will be implemented in

psychiatric rehabilitation services with subsequent implications for routine clinical practice.

Trial registration number : Clinical Trials NCT03972735

Introduction

Mental illness stigma refers to the negative beliefs, emotional reactions, and attitudes towards people with

Serious Mental Illness (SMI) endorsed by the general population (also referred to as public stigma1). People

with SMI are generally acutely aware of public stigma and expect to be rejected by others (69.4% of the

1,229 participants with schizophrenia (SZ) and 71.6% of the 1,182 participants with mood disorders in the

GAMIAN-Europe study had high perceived stigma2,3). Self-stigma occurs when someone moves beyond

awareness of stigma to accepting the negative stereotypes about SMI as true to describe him/herself.1 Self-

stigma refers to the process whereby a person’s previously held social identity (defined by social roles such

as son, brother, sister, friend, employee or potential partner) is progressively replaced by a devalued and

stigmatised view of oneself. Self-stigma is highly frequent in Europe (41.7% in SZ and 21.7% in mood

disorders2,3) and the USA (36.1% out of 144 people with SMI4). The “illness identity model”5 proposed that

self-stigma can have pervasive effects on outcomes related to recovery from SMI, including self-esteem,

hopefulness, social interaction, employment, and symptom severity. The evidence consistently supports

many of the model’s predictions, including that self-stigma is negatively associated with self-esteem,

motivation to achieve personal life goals, shared-decision making, adherence into treatment, well-being,

quality of life, personal recovery and social function.6-14 People with elevated self-stigma report more

dysfunctional attitudes, social withdrawal, depressive symptoms and increased suicidal ideation.5,15-21 High

insight into illness directly predicts and compounds the effects of self-stigma on depression.15,17,22-24

Impairments in cognitive functioning, metacognition and social cognition predict increased self-stigma.12,24-29

Several psychosocial interventions have been designed to reduce self-stigma and its impact on patient’s

outcomes, with preliminary results on self-stigma, insight, and self-efficacy.30 Narrative Enhancement and

Cognitive Therapy (NECT) is a structured, 20 session group-based approach which combines

psychoeducation to counteract SMI stereotypes, cognitive restructuring to challenge dysfunctional attitudes

about the self, and story-telling exercises to enhance meaning-making and the person’s ability to move

beyond their illness-identity to a more integrated sense of self.31 NECT is manualized and can be

implemented with fidelity in routine treatment settings.31 Four controlled studies, including three randomized

controlled trials (RCT) in three different countries (USA, Israel, Sweden) have been published to date in

psychotic-related disorders. NECT was effective in improving self-stigma, hope and self-esteem32-34 with

persisting effects after 6 months’ follow-up.33,34 The results on subjective quality of life were mixed, one

study found improvements32 but another found no effectiveness.33 NECT was effective in reducing social

withdrawal and avoidant coping strategies in participants with schizophrenia (SZ) in comparison with an

active control condition.34 However, NECT was not effective on social functioning, measured with the

Quality of Life Scale35, a global measure of psychosocial function34. In almost all studies of NECT the

samples were mixed, with some participants showing low levels of self-stigma (Internalized Stigma of

Mental Illness (ISMI) total score < 2.5) and others moderate to high self-stigma (ISMI >2.5). Changes in

coping strategies were higher in participants from centres providing the intervention within the context of

psychiatric rehabilitation34.

In summary, NECT has demonstrated effectiveness on self-stigma and subjective aspects of recovery (hope,

self-esteem and quality of life) in participants with psychotic-related disorders and SZ. Its effectiveness on

social function and in other stigmatized SMI conditions (bipolar disorder (BD), borderline personality

disorder (BPD)) are however, still unclear. Similarly, NECT’s effectiveness in improving depression,

treatment adherence, wellbeing and personal recovery is still unknown.

The objectives of the present study are to investigate: i) NECT effectiveness on social functioning in SMI

participants ii) NECT effectiveness on self-stigma, psychiatric symptoms, depression, well-being, subjective

quality of life and personal recovery; iii) whether insight into illness and cognitive functioning at baseline

predict improvements at follow-up; iv) whether the effects on primary and secondary outcomes persist after

6 and 12 months’ follow-up.

The primary hypothesis to be tested is whether NECT significantly improves social functioning in

comparison with the control group. The secondary hypotheses are to determine if, when compared to the

control condition, NECT results in significant improvements in self-stigma, psychiatric symptoms,

depression, wellbeing, self-esteem, subjective quality of life and personal recovery.

Methods and design

Design

This randomized controlled study is multi-centric, prospective, interventional and exploratory.

For ethical purposes, we have chosen a stepped wedge cluster randomized trial design, with a waiting list

type control group. Previous research from the French national REHABase network showed that: i) most

patients were dissatisfied with their interpersonal relationships at the time of admission and asked for

interventions improving social function36; ii) elevated self-stigma was frequent (31.2% of the 738

participants37) and was negatively associated with recovery-related outcomes. Self-stigma has been

negatively associated with patient’s longitudinal outcomes and to lower benefits from psychiatric

rehabilitation38. Providing NECT to all participants aims at not excluding participants from interventions

improving social function (e.g. social skills training or social-cognitive remediation) during the follow-up

period without proposing them a credible therapeutic alternative (i.e. self-stigma reduction). This also aims at

reducing potential deception bias and dropouts in participants allocated to the control group. In stepped-

wedge RCTs, all clusters are evaluated before and after providing the intervention and each cluster switches

from control to become exposed, but not at the same point in time39,40. The participants who agree to join the

study will be randomized into two groups: one group (Group 1) receiving the intervention at the beginning of

the study (T0), one group (Group 2) being a control group for the first 6 months and receiving the

intervention after (T1). The stepped-wedge design of this 2-cluster trial can be seen on Figure 1.

Figure 1. Diagram of the stepped-wedge trial design

The total duration of the study will be 18 months to allow for: recruitment of the target number of

participants; delivery of the intervention; follow-up assessments; data analysis using intention-to-treat

methods. A schematic overview of the study design is presented in Figure 2.

Figure 2. Schematic overview of the study protocol

Participants

Inclusion and exclusion criteria

Eligible participants will be adults (age >18) diagnosed with schizophrenia, schizoaffective disorder,

schizotypal disorder, schizophreniform disorder, bipolar I or II disorder, or borderline personality disorder

(DSM-5 criteria41). For the purpose of the study only stabilized outpatients will be recruited (defined as three

months of clinical stability and no changes in pharmacological treatment in the past three months).

Participants unable to give informed consent or with a comorbid intellectual disability will be excluded.

Participation in other programs having an impact on social function or self-stigma (social cognitive

remediation, social skills training) will be prohibited during the follow-up period.

Recruitment and randomization

Patients diagnosed with schizophrenia, bipolar disorder or borderline personality disorder (DSM-5 criteria41)

will be recruited through six Rehabase psychiatric rehabilitation network centres36, three FondaMental

Academic Centres of Expertise (FACE) for SZ or BD,42,43 one unit specialized in mood disorders at the

Geneva university hospital, one psychiatric day-care clinic specialized in mood and personality disorders in

Grenoble, and one psychiatric rehabilitation centre located in the psychiatric hospital in Caen. The selected

sites are already actively involved in treating patients with SZ, BD or BPD and have previous research

experience in the field of psychiatric rehabilitation. Regular group meetings will be organized to monitor

quality control and ensure good inter-rater reliability. A list of eligible participants will be generated under

the supervision of the coordinating centre clinical research officer. Each eligible patient will be approached

by a trained member of the research team and invited to participate in the study, thereby eliminating

selection biases. Eligible patients will be given a leaflet describing the program and the research. Informed

consent will be taken during a medical interview with one of the investigators. The clinical research officer

of the coordinating centre (Grenoble) will be in charge of the randomization process for participants from all

centres. Randomization using Clinsight software will be stratified by centre, gender, age and diagnosis with

an allocation ratio of 1:1. Outcomes will be compared in all groups at T0 and T1 (duration of intervention= 6

months). 6-month and 12-month outcomes for Group 1 and 2 will be measured at T2 (18 months after T0) to

evaluate the stability of the effects over time. A 7-point improvement in social functioning measured using

Personal and Social Performance Scale44 (PSP) is generally considered as clinically significant. The sample

size was calculated taking into consideration the cluster and time effects found in stepped-wedge RCT

designs. In order to ensure significance with an alpha error = 5% and an expected statistical power of 90%,

we plan to include 5 patients per centre and per group, meaning that there will be 10 participants included

per centre for a total of 120 patients included (60 in group 1, 60 in group 2). Most of the outcome measures

are self-rated questionnaires, the other evaluations will be conducted by an evaluator who has not taken part

in the intervention. The schedule of enrolment, interventions and assessments is shown in Figure 3 (SPIRIT

diagram).

STUDY PERIOD

Enrolme

nt

Allocati

on Post-Allocation

Close-

Out

-t1 0 T1 T2 T3

TIMEPOINT 0 6 months 12 months 18 months

ENROLMENT :

• EligibilityScreen X

• Informedconsent X

• Allocation X

INTERVENTION

• NECT

• TAU

ASSESMENTS

• ClinicalAssessments

X X X X o PANSS

51

o MADRS52

o PSP44

o YMRS53

• Neuropsychological

assessments

X

o WAISIV60

o BEM14461

o TMTA&B62

o D2-R63

o ShoppingTest64

o V-SIR65

• Self-ratedquestionnaires X X X X

o ISMI50

o STORI59

o SERS-SF58

o S-qol56

o WEWMBS57

o BIS54

o MARS55

Figure 3. Schedule of enrolment, interventions and assessments (SPIRIT diagram)

BIS: Birchwood Insight Scale; ISMI: Internalized Stigma of Mental Illness; MARS: Medication Adherence Rating Scale; NECT: Narrative Enhancement and Cognitive Therapy; PSP: Personal and Social Performance Scale; S-QoL: Subjective-Quality of Life; TAU: Treatment as Usual; TMT: Trail Making Test; V-SIR: Versailles-Situational Intention Reading; WAIS IV: Wechsler Adult Intelligence Scale-4th edition; WEWMBS: Warwiwk Edinburgh Mental WellBeing Scale; YMRS: Young Mania Rating Scale

NECT

Translation procedure

A consistent translation and cross-cultural adaptation procedure was realized by two independent research

teams (JD, MF and MA in Grenoble; HRL, SF and FJ in Geneva). All materials were translated from English

into French, the first language of all translators. Each team reviewed the material translated by the other team

so all translations were crosschecked. Regular group meetings between the two teams were conducted to

discuss any problematic translations and resolve any disputed items, in line with established translation

methods.

Training and fidelity monitoring

All the clinicians involved will attend a 1-day NECT training session, delivered by the creators of the

program (Yanos PT, Roe D). Training will include discussion and role-playing exercises, with corrective

feedback from the trainers. Regular group supervisions will be organized to ensure treatment fidelity. NECT

fidelity will be monitored using the NECT Fidelity Scale, developed by Yanos et al34.

The experimental intervention

The French adaptation of NECT is a manualized, structured, 12-session, group-based intervention conducted

by two facilitators. The number of sessions was reduced in the French adaptation and their duration extended

to match the typical duration of psychosocial interventions in French-speaking countries (up to 15 sessions).

Figure 3 provides an overview of the NECT topics. The 2-hour sessions are divided into three main parts: 1)

psychoeducation about stigma, self-stigma, and myths about mental disorders; 2) cognitive restructuring

targeting negative thoughts about the self and dysfunctional attitudes; 3) story-telling exercises in which

participants tell stories about themselves, receive feedback from other group members and facilitators and

are invited to apply the cognitive restructuring skills learnt in the previous sessions to their personal life

narratives. At-home practice exercises are carried out between the sessions.

Figure 3 Structure of NECT topics

The control condition

The control condition refers to the group receiving current standard care during the first six months of the

study before attending NECT after T1. There is no definition of standard care. The association of

pharmacological treatment with psychiatric rehabilitation is however recommended in all the international

guidelines on SMI45-47. All participants will attend day-care recovery-oriented services offering several forms

of psychiatric rehabilitation (group CBT on positive symptoms, general psychoeducation, cognitive

remediation, vocational rehabilitation, supported employment). Information about the interventions received

during the follow-up period (with their duration and the number of sessions) will be systematically collected

by the clinical research officer and taken into account when analysing the results.

Assessments

At baseline and at follow-up, socio-demographic and illness-related information (education level,

employment and marital status, psychiatric diagnosis, age of onset, illness duration, current pharmacological

treatment) will be collected. All outcome measures listed below are part of routine clinical evaluations in the

national REHABase and FACE networks for SZ and BD36,42,43 approved by the relevant ethical committees.

Primary outcome

Social function will be assessed with the Personal and Social Performance Scale44 (PSP), a clinician-reported

measure of social dysfunction using six-point severity scale in four life domains (socially useful activities,

personal and social relationships, self-care, and disturbing or aggressive behaviours). PSP provides an

overall rating score ranging from 1 to 100, higher scores representing better personal and social functioning.

PSP showed acceptable internal consistency48, excellent inter-rater reliability49, and a satisfactory ability to

detect changes44. A seven-point improvement during clinical trials is considered to be clinically significant44.

Secondary outcomes

Self-stigma will be assessed using the Internalized Stigma of Mental Illness scale (ISMI2,50), a 29-item self-

report measure designed to assess a person’s personal experience of stigma related to mental disorders and is

rated on a four-point Likert scale. Items are summed to provide a mean total score and five subscale scores

(alienation or feeling of being a devalued member of the society; stereotype endorsement or agreement with

the negative attitudes about SMI; discrimination experience; social withdrawal as a coping strategy and

stigma resistance). Stigma resistance is generally excluded because of poor correlations with other

subscales32,34. Higher scores reflect higher levels of self-stigma. Scores above 2.5 indicate moderate to high

levels of self-stigma2,3. Illness severity will be assessed in patients with SZ using the Positive and Negative

Syndrome51 (PANSS) scales. Current depressive symptoms were evaluated using the Montgomery Asberg

Depression Rating Scale52 (MADRS) and current manic symptoms with theYoung Mania Rating Scale53

(YMRS). Insight and treatment adherence will be assessed with self-reported measures (Birchwood Insight

Scale (BIS)54; Medication Adherence Rating Scale (MARS)55). Quality of Life will be evaluated with the

self-reported Subjective Quality of Life scale56 (S-QoL) and wellbeing using the Warwick-Edinburgh Mental

Well-being Scale57 (WEMBS). Self-esteem will be measured with the Self-Esteem Rating Scale58 (SERS)

and personal recovery using the self-reported Stage of Recovery Instrument59 (STORI). Baseline

neuropsychological cognitive assessments include Wechsler Adult Intelligence Scale-4th edition60 (WAIS-

IV) subscales assessing working memory, verbal abstraction and hypothetico-deductive reasoning, BEM-144

story subtest for auditive-verbal memory61, Trail Making Test A and B (TMT-A or B)62 respectively for

speed of processing and reactive mental flexibility, D2-R for selective attention, concentration, and speed of

processing63, and shopping test for planning abilities64. Theory of mind will be assessed at baseline using the

Versailles-Situational Intention Reading Test65 (V-SIR).

Statistical Analysis

Intention-to-treat analyses will be conducted in the first instance. The analyses will be conducted using

parametric tests for normal distributed data (Student’s t and covariance analysis with repeat measures

ANCOVA) and with non-parametric tests (Mann-Whitney U and Kruskal-Wallis test) in case of significant

deviations from the normal distribution. The statistical analysis will be done using the R software, version

3.2.366. The psych package version 1.5.8, will be used67. Effect Size (Cohen's d) will be calculated using the

effsize package67. Size effects inferior to 0.20 will be considered as negligible, from 0.20 to 0.40 as small,

from 0.40 to 0.60 as moderate, and superior to 0.60 as strong67. The leaps package version 2.9 will be used

for variable selection68. The level of confidence intervals will be set at 0.95, and the significance level of

tests at 0.05.

Trial status

The present trial has not yet started. The recruitment will begin on 2019/09/01 with an estimated study

completion date is 2023/04/03. Protocol version 1.5 was written on 2019/04/02 and approved by the relevant

ethical committee (CPP Nord-Ouest I) on 2019/04/26.

Discussion and conclusion

NECT has shown effectiveness in reducing self-stigma in patients with psychotic-related disorders in a range

of contexts in previous research. Considering the prevalence of moderate to high self-stigma in SMI and its

impact on functional outcomes, NECT appears to be a promising intervention to complete the basket of

services proposed by psychiatric rehabilitation centres (cognitive and social cognitive remediation,

psychoeducation, social skills training, group cognitive behaviour therapy, vocational rehabilitation, peer-

support36). If shown to be effective on social function and for different SMI, it is likely that NECT will have

widespread implications for clinical practice.

Ethics approval and consent to participate: The present study obtained all the authorizations required

under French regulations and was approved by the relevant ethical committee (CPP Nord-Ouest I) on

2019/04/26. Informed written consent will be systematically sought for all participants.

Author contribution statement: The authors had full access to the data in the study and take the

responsibility for the integrity of the data and the accuracy of the data analysis. Dr Julien Dubreucq drafted

the article and made the literature review. Mrs Megane Faraldo, Mrs Marie Abbes, Mr Thomas Cohen, Pr

Paul Lysaker, Pr Philip Yanos and Pr Nicolas Franck contributed to design the study protocol and critically

revised the article. All the authors will be involved in the collection and analysis of the data. All authors

contributed to and have approved the final manuscript.

Author’s information: a Centre de Neurosciences Cognitive, UMR 5229, CNRS & Université Lyon 1 ; b

Centre référent de réhabilitation psychosociale et de Remédiation Cognitive (C3R), Centre Hospitalier Alpes Isère, Grenoble ; c Fondation FondaMental, Créteil, France ; d Réseau Handicap Psychique, Grenoble France ; e Centre Ressource de Réhabilitation Psychosociale et de Remédiation cognitive, Centre Hospitalier Le Vinatier ; f Centre Référent Lyonnais de Réhabilitation Psychosociale et de Remédiation Cognitive (CL3R), Centre Hospitalier Le Vinatier : g Laboratoire Jean Kuntzmann, CNRS UMR 5224, Université Grenoble-Alpes, France ; h Geneva University Hospital, Department of Psychiatry, Mood disorders Unit, 20bis rue de Lausanne, CH-1201 Geneva ; i Centre de Réhabilitation Psychosociale et de Remédiation Cognitive (C2R), CH Drôme Vivarais ; j CMP B, CHU, EA 7280 Faculté de Médecine, Université d'Auvergne, BP 69 63003 Clermont-Ferrand Cedex 1, France. ; k Service Universitaire de Psychiatrie Adulte, Hôpital la Colombière,

CHRU Montpellier, Université Montpellier 1, Inserm 1061, Montpellier, France ; lCentre Référent de

RéhabilitationPsychosocialedeLimogesC2RL,CHEsquirol,Limoges;mCREATIV&URCPierreDeniker,CH

Laborit, Poitiers;nUnité Ariane de rehabilitation psychosociale, EPSM Caen; oCentre départemental de

réhabilitation psychosociale des Glières, 219 chemin des bois des Fornets, 74800 La Roche sur Foron ; p

Centre Hospitalier Sainte Marie de Nice, 87 Avenue Joseph Raybaud, 06100 Nice ; q Centre Expert Troubles Bipolaires, Service Universitaire de Psychiatrie, CHU de Grenoble et des Alpes, CS10217, F-38043 Grenoble, France ; r Clinique du Dauphiné- Groupe Sinoué, 252 Route de Saint-Nizier, 38180 Seyssins

Availability of data and materials: The study protocol is available online on Clinical Trials:

https://clinicaltrials.gov/ct2/show/NCT03972735?term=nect&rank=1

Consent for publication: not applicable

Role of the funding source: This research did not receive any specific grants from funding bodies in the

public, private, or not-for-profit sectors. This trial will be conducted in day-care community services funded

by the Auvergne-Rhône-Alpes, Nouvelle-Aquitaine and Normandie regional health agencies


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Partie V. Discussion générale et perspectives

Chapitre 1. Synthèse des résultats principaux

Ce travail de thèse a permis d’approfondir les connaissances existantes sur l’auto-stigmatisation

dans les TPSP, objet d’un nombre croissant de publications au cours des dernières années. Celle-ci

est fréquente et associée à un devenir clinique et fonctionnel altéré, et ce quelque soit l’aire

géographique et culturelle, la pathologie ou le stade évolutif considérés. Elle semble toutefois plus

prononcée en Asie du Sud-Est et dans la schizophrénie. Elle est peu étudiée du point de vue des

neurosciences, une modélisation expérimentale des mécanismes conduisant à l’auto-stigmatisation

et sous-tendant ses effets sur les personnes avec TPSP étant néanmoins possible et potentiellement

contributive pour la clinique et la recherche sur le sujet. La base de données nationale des centres

référents de réhabilitation psychosociale et de remédiation cognitive (REHABase) est un outil

prometteur pour mieux identifier les besoins de réhabilitation des personnes avec TPSP et évaluer

de façon longitudinale l’efficacité des interventions qui leurs sont proposées. Elle a permis de

recueillir les premières données françaises sur la satisfaction et les souhaits en termes

d’accompagnement des personnes avec TPSP dans plusieurs domaines de vie, leur bien-être, leur

rétablissement personnel et leur niveau d’auto-stigmatisation et de résistance à la stigmatisation.

Environ un tiers des participants inclus dans la cohorte REHABase présentait un niveau élevé

d’auto-stigmatisation, celle-ci étant associée à un risque supérieur d’être dans un stade précoce du

rétablissement (x 4 pour le stade moratoire et x3 pour le stade conscience) et à un bien être et une

satisfaction dans les relations sociales altérés. La résistance à la stigmatisation, élevée chez plus de

la moitié des personnes inclues dans la cohorte REHABase, était positivement associée à la

satisfaction dans les relations familiales. Le présent travail a permis la traduction française du

programme NECT, en collaboration avec l’équipe d’Hélène Richard-Lepouriel aux Hôpitaux

Universitaires de Genève et les concepteurs originaux du programme, Philip T. Yanos de

l’université de New York, Paul H. Lysaker, de l’université d’Indianapolis et David Roe, de

l’université de Haïfa. Cette étape a été suivie par la conception et la mise en œuvre d’un essai

randomisé contrôlé sur 12 sites en France et en Suisse pour évaluer l’efficacité de ce programme sur

le fonctionnement social des personnes avec TPSP, dont le début est prévu au 1er trimestre 2020.

1.1. L’auto-stigmatisation, une caractéristique fréquente et associée à de multiples effets

négatifs

L’auto-stigmatisation affecte environ un tiers des personnes avec TPSP (31.2% en France, 31.5%

dans le monde). Elle est présente partout dans le monde, en contradiction avec les premiers travaux

sur le sujet la concevant comme un produit des sociétés occidentales plus industrialisées et moins

soutenantes pour les individus [4] [207], [208]. L’auto-stigmatisation est toutefois plus marquée en

Asie du Sud-Est et au Moyen-Orient (> 39%) envers les personnes avec TPSP et en Amérique du

Sud et en Afrique envers celles avec schizophrénie (>38%). Cela peut en partie être expliqué par

des facteurs culturels, comme par exemple la peur de perdre la face en Asie [209-211] ou

l’attribution de la pathologie à des causes surnaturelles en Afrique ou au Moyen-Orient [212],

[213]. La stigmatisation publique et l’auto-stigmatisation en France sont dans la moyenne des pays

Européens [7], [8], [214]. L’auto-stigmatisation est plus marquée en Europe de l’Est et du Sud

comparativement au reste de l’Europe (15.2% en Suède à 50% en Croatie pour la schizophrénie ;

[40]). Ces variations sont cohérentes avec les résultats d’études internationales retrouvant une

stigmatisation publique plus marquée dans ces aires géographiques et culturelles [6], [7], elle même

associée à un niveau supérieur d’auto-stigmatisation [43]. Plus spécifiquement, les pays où la

stigmatisation perçue et l’auto-stigmatisation sont les moins marquées seraient aussi ceux où il est

le plus simple d’accéder à des informations concernant la façon de faire face à un problème de santé

mentale et où la consommation d’anti-dépresseurs est la plus élevée [43]. L’influence du diagnostic

psychiatrique sur l’auto-stigmatisation est controversée, celle-ci étant plus marquée chez les

personnes avec schizophrénie ou avec dépression dans certaines études, mais pas dans d’autres

[215]. L’auto-stigmatisation dans les TPSP hors schizophrénie apparaît par ailleurs plus prononcée

en Asie du Sud et du Sud-Est [216-218]. L’auto-stigmatisation semble affecter plus

particulièrement les personnes avec troubles de personnalité borderline (43.8% en France ; [214]),

ce qui est cohérent avec deux études réalisées en République Tchèque [219], [220]. La forte

stigmatisation publique attachée à cette pathologie et les biais cognitifs rendant ces personnes plus

vulnérables à l’auto-stigmatisation en sont des explications potentielles [26], [221], [222]. La

présence de comorbidités psychiatriques, comme un trouble anxieux, un trouble de personnalité ou

un état de stress post-traumatique associés, renforce par ailleurs l’auto-stigmatisation chez les

personnes avec TPSP [214], [223], [224]. Cela peut expliquer en partie l’auto-stigmatisation plus

marquée dans les TPSP hors schizophrénie retrouvée en France et en République Tchèque,

comparativement à d’autres pays Européens [214].

L’auto-stigmatisation est particulièrement associée à la dépression et au risque suicidaire [215]. Elle

altère l’estime de soi, le bien-être, l’adhésion aux soins, le fonctionnement psychosocial, la qualité

de vie, le pouvoir d’agir, la résistance à la stigmatisation et est un frein majeur au processus de

rétablissement [214], [215].

1.2. L’auto-stigmatisation, un paramètre sous l’influence de facteurs environnementaux

L’auto-stigmatisation est peu influencée par la majorité des variables socio-démographiques ou en

lien avec la pathologie [215]. Elle est aussi marquée chez des personnes à ultra-haut risque de

transition vers la psychose que chez des personnes présentant une pathologie plus installée et ne

dépend ni de la durée de la maladie ni du nombre d’hospitalisations, même celles sous contrainte

[70], [147], [215], [225]. L’insight, la présence de troubles cognitifs et métacognitifs et l’utilisation

de stratégies d’évitement des situations sociales contribuent à la survenue de l’auto-stigmatisation

[215], [226], [227]. Ces facteurs renforcent aussi le stress lié à la stigmatisation et limitent les

capacités à y faire face [68], [228].

L’auto-stigmatisation est largement influencée par des facteurs environnementaux, parmi lesquels le

soutien social et familial mais aussi l’attitude des professionnels de santé mentale envers les

personnes avec TPSP ont un rôle majeur [215], [229]. L’insight parental peut contribuer à l’auto-

stigmatisation chez des adolescents avec troubles psychiatriques débutants [230]. Un soutien social

et familial préservé et une satisfaction élevée dans les relations familiales protège au contraire de

l’auto-stigmatisation en renforçant la résistance à la stigmatisation [215], [228], [229]. La

perception d’attitudes stigmatisantes chez les professionnels de santé par les personnes avec TPSP

est associée à une diminution du pouvoir d’agir, cet effet étant à la fois direct et indirect via l’auto-

stigmatisation [231]. La stigmatisation perçue et l’identification négative au groupe social

stigmatisé renforcent le stress lié à la stigmatisation [68]. Celui-ci contribue à l’auto-stigmatisation

suite à une hospitalisation sous contrainte, surtout si celle-ci est associée à des réactions

émotionnelles négatives (honte, mépris de soi ; [70]). L’identification positive au groupe stigmatisé,

par exemple en participant à un groupe d’auto-support, contribue au contraire à réduire l’auto-

stigmatisation [48], [206]. La stigmatisation vécue et anticipée renforce la probabilité d’utilisation

de stratégies d’évitement et de survenue de l’auto-stigmatisation [60], [63], [232], [233].

1.3. L’auto-stigmatisation, un prédicteur longitudinal du devenir des personnes avec TPSP

L’auto-stigmatisation altère significativement le pronostic clinique et fonctionnel des personnes

avec TPSP [215]. Elle majore les symptômes positifs, l’anxiété sociale, la dépression, le risque

suicidaire et altére l’estime de soi, le bien-être et le rétablissement [71], [234-237]. Elle limite aussi

les bénéfices d’un accompagnement à la réinsertion professionnelle [238]. L’auto-stigmatisation

renforce la détresse associée aux expériences inhabituelles, l’anxiété sociale, la dépression et le

risque suicidaire chez les personnes présentant des troubles psychiatriques débutants [239]. Elle

altère le bien-être et limite la possibilité de recourir à des stratégies adaptatives efficaces et

l’adhésion aux soins [42], [63], [240]. Il pourrait s’agir d’un facteur de risque de transition

psychotique, via le stress lié à la stigmatisation [241]. L’auto-stigmatisation diminue l’espoir et

altère l’inclusion sociale et l’insertion professionnelle des personnes ayant fait un 1er épisode

psychotique [242].

L’auto-stigmatisation est sensible au changement [243]. Une aggravation se traduit par des

symptômes dépressifs plus sévères, davantage d’idées suicidaires et une estime de soi et un

fonctionnement social altérés [71], [197], [232], [235], [237]. Une réduction de l’auto-

stigmatisation s’accompagne au contraire d’une amélioration de l’humeur, de l’estime de soi et du

fonctionnement psychosocial [197], [243], [244]. Elle se traduit également par un amélioration plus

marquée de la qualité de vie pendant un parcours de réhabilitation psychosociale [244].

1.4 La réhabilitation psychosociale, un levier pour réduire l’auto-stigmatisation?

Les soins de réhabilitation psychosociale permettent de réduire significativement l’auto-

stigmatisation [224], [244-248]. L’auto-stigmatisation diminue chez les personnes accompagnées

vers l’emploi si elles ne sont pas confrontées à des expériences de discrimination en milieu

professionnel [248]. La réduction de l’auto-stigmatisation était par ailleurs plus sensible pour les

personnes avec TPSP n’ayant pas bénéficié de prestations de compensation du handicap pendant la

période de suivi [224]. La réduction de l’intensité des symptômes, l’amélioration du fonctionnement

cognitif, la reprise du pouvoir d’agir ou encore l’acquisition de stratégies adaptatives efficaces pour

gérer le stress ou interagir avec autrui expliquent potentiellement cet effet non-spécifique des soins

de réhabilitation psychosociale [224], [244-248]. La mise en place précoce de soins orientés vers le

rétablissement pourrait prévenir l’auto-stigmatisation, en réduisant la durée de psychose non traitée

et en acquérant des stratégies adaptatives efficaces facilitant la réinsertion sociale [63], [249].

1.5 Auto-stigmatisation et résistance à la stigmatisation

La résistance à la stigmatisation est un construit distinct de l’auto-stigmatisation, même si ces deux

entités sont fortement corrélées [83]. Elle concerne plus de la moitié des personnes avec TPSP

inclues dans la cohorte REHABase (54.1% ; [228]. Elle est dans la moyenne des pays Européens

dans la schizophrénie et moindre dans les autres TPSP, ce qui peut être expliqué par une auto-

stigmatisation plus prononcée pour ces pathologies et par la présence de comorbidités

psychiatriques [214], [228]. Elle est influencée notamment par l’insight, les capacités cognitives et

métacognitives, les stratégies adaptatives et le soutien social et familial [83], [85], [155], [227],

[228]. La résistance à la stigmatisation est associée au rétablissement dans ses aspects objectifs et

subjectifs et constitue une cible thérapeutique à part entière en réhabilitation psychosociale [83],

[215], [228].

Chapitre 2. Implications cliniques et pour la recherche

La prévention de l’auto-stigmatisation est un objectif thérapeutique majeur pour améliorer le

devenir clinique et fonctionnel des personnes avec TPSP. Elle peut se réaliser de plusieurs

manières, avec des campagnes auprès du grand public ou des médias mais aussi des actions plus

spécifiques en direction des professionnels de santé mentale, des aidants familiaux ou des personnes

concernées.

Ce travail de thèse présente plusieurs applications cliniques pour prévenir ou réduire l’auto-

stigmatisation: la réduction de la stigmatisation publique, l’adoption de pratiques orientées vers le

rétablissement dans les services de santé mentale, le développement de la pair-aidance et des

dispositifs facilitant une identification groupale positive et la prise en compte de l’auto-

stigmatisation dans les dispositifs d’intervention précoce et dans les programmes de

psychoéducation familiale.

2.1. Réduire la stigmatisation publique

Les campagnes de déstigmatisation n’ont pas entraîné un changement majeur dans l’opinion

publique concernant les personnes avec TPSP [34], [250]. Elles ont toutefois permis de réduire la

stigmatisation perçue et expérimentée [34], [185]. Cet effet pourrait s’expliquer par l’amélioration

du traitement médiatique des TPSP suite à ces campagnes, soulignant l’intérêt d’un travail régulier

auprès des médias pour promouvoir des contenus plus positifs, orientés vers le rétablissement [37],

[52]. Une conception neurobiologique des TPSP peut chez le grand public, renforcer le désir de

distance sociale [250], et chez les personnes concernées provoquer des sentiments de culpabilité

implicites contribuant à l’auto-stigmatisation [251]. Il pourrait être pertinent de développer des

campagnes de déstigmatisation intégrant la perspective du rétablissement à destination d’un public

varié, avec des lycéens, des étudiants, des employeurs, des journalistes, mais aussi des

professionnels de santé [15], [22], [188], [250]. Une campagne de ce type, basée sur les

témoignages d’une personne rétablie et d’un pair-aidant, a été réalisée à l’automne 2018 auprès de

134 étudiants en école de commerce, avec un effet positif sur leurs croyances et attitudes à propos

des personnes avec schizophrénie [252]. Les attitudes stigmatisantes sont toutefois largement

automatiques et implicites [112]. Les campagnes de déstigmatisation pourraient être évaluées par

l’évolution des attitudes implicites des journalistes, du grand public, des personnes concernées et de

leurs proches et par leur efficacité sur la stigmatisation perçue, expérimentée, anticipée et

internalisée [15], [112], [184], [250].

La promotion dans les médias de témoignages de personnes rétablies ou de pairs-aidants et des

pratiques orientées vers le rétablissement pourrait également prévenir l’auto-stigmatisation et

faciliter l’accès aux soins en facilitant une identification positive au groupe social précedemment

stigmatisé [75], [253].

2.2. Diffuser les pratiques orientées vers le rétablissement dans les services de santé mentale

La prévention de l’auto-stigmatisation repose aussi sur la transformation des pratiques au sein des

services de santé mentale. La mise en place de pratiques orientées vers le rétablissement pourrait

réduire la stigmatisation perçue, expérimentée, anticipée et internalisée [215], [231]. La

stigmatisation dans les services de santé mentale est multifactorielle, sous-tendue principalement

par la différence de statut social et de pouvoir entre les professionnels et les usagers, qui se traduit

dans leurs croyances et attitudes respectives et dans l’organisation des soins et des locaux [254].

Figure 17. Modèle théorique des mécanismes conduisant à la stigmatisation dans les services de

santé mentale, selon la théorie de l’étiquetage modifiée (MLT) XVII

Selon ce modèle, la réduction de la stigmatisation dans les services de santé mentale passerait par

une relation usagers-professionnels horizontale, plus collaborative et sur la création d’un

environnement favorable au rétablissement [254]. La formation des professionnels de santé aux

pratiques orientées vers le rétablissement apparaît cruciale pour réduire la stigmatisation et prévenir

l’auto-stigmatisation [215]. Elle permettrait la mise en place d’un environnement porteur d’espoir,

focalisé sur les ressources préservées plus que sur les difficultés liées à la pathologie et soutenant

l’auto-détermination et le contrôle de sa vie par l’usager, favorisant le rétablissement [166], [192].

La décision médicale partagée, dans le choix de la médication comme dans la définition et la mise

en œuvre d’un plan de crise conjoint, et l’adoption de pratiques de type « No Force First »,

réduisant le recours à l’isolement et la contention mécanique ou chimique pourraient faciliter

l’engagement dans les soins, réduire le stress lié à la stigmatisation et les réactions émotionnelles

négatives au décours d’une hospitalisation sous contrainte et prévenir l’auto-stigmatisation [52],

[70], [215], [255].

Figure 18. Réactions émotionnelles négatives suite à une hospitalisation sous contrainte, stress lié à

la stigmatisation et auto-stigmatisation XVIII

Plusieurs programmes de formations aux pratiques orientées vers le rétablissement dans les services

de santé mentale ont été évalués au Royaume-Uni (REFOCUS ; [256]) et en Australie (REFOCUS-

PULSAR ; [257]) , avec des effets positifs sur la réduction des coûts associés aux problèmes de

santé mentale (-1062£ ; [256]) et sur le rétablissement des personnes concernées [257]. Les effets

potentiels de ce type de formations et de la mise en place de pratiques non-spécifiques orientées

vers le rétablissement sur la stigmatisation et l’auto-stigmatisation sont néanmoins encore inconnus.

Il serait pertinent d’évaluer l’efficacité de ces programmes de formation sur les attitudes explicites,

mais aussi implicites, des professionnels de santé mentale envers les personnes avec TPSP, car

celles ci peuvent persister même dans des équipes orientées rétablissement [109], [110], [254].

L’intégration de pairs-aidants dans les équipes de soins permet de prévenir la réhospitalisation en

psychiatrie après un épisode aigu (29% à 1 an contre 38% dans le groupe contrôle ; [258]), de

renforcer le pouvoir d’agir et l’estime de soi des usagers et de favoriser leur rétablissement [259-

261]. Elle a des effets positifs pour les pairs-aidants et facilite l’orientation des pratiques vers le

rétablissement dans les services de santé mentale [260]. Les pairs-aidants pourraient prévenir ou

réduire l’auto-stigmatisation, en étant vecteurs d’espoir et d’identification positive à une personne

rétablie, et en renforçant le pouvoir d’agir et l’estime de soi des usagers [260]. La participation à

des groupes d’entraide mutuelle ou d’auto-support contribue à réduire l’auto-stigmatisation [206],

[262]. L’efficacité d’interventions réalisées par des pairs-aidants sur la stigmatisation perçue,

expérimentée, anticipée et internalisée n’a toutefois pas encore été évaluée.

La prévention du burnout chez les soignants, associée à la stigmatisation de courtoisie et pouvant

contribuer à l’auto-stigmatisation des usagers, est aussi indispensable pour réduire la stigmatisation

dans les services de santé mentale [96], [102].

2.3. Intervenir précocément auprès des personnes concernées et de leurs proches

Prévenir l’auto-stigmatisation est un enjeu thérapeutique majeur dans les troubles psychiatriques

débutants, car cela permettrait de renforcer l’adhésion aux soins, de faciliter le recours à des

stratégies adaptatives efficaces et de réduire les risques de transition psychotique et de désinsertion

sociale, scolaire et professionnelle [215]. Il serait pertinent d’évaluer l’auto-stigmatisation chez

l’ensemble des personnes présentant des troubles psychiatriques débutants, au décours d’un passage

aux urgences ou d’une hospitalisation pour un 1er épisode psychotique. Le repérage des adolescents

ou jeunes adultes à risque d’auto-stigmatisation, c’est-à-dire présentant des réactions automatiques

de honte, de mépris de soi ou de culpabilité, pourrait être conduit avec des tests d’association

implicites permettant ainsi la réalisation précoce d’interventions spécifiques [263]. Ces tests

pourraient par ailleurs permettre d’évaluer l’efficacité des stratégies thérapeutiques qui leur seraient

proposées [184], [263].

L’auto-stigmatisation est un des médiateurs entre un insight préservé et la survenue d’une

dépression [74], [264-268]. De même, l’insight en lien avec la présence de troubles cognitifs

contribuerait, via l’auto-stigmatisation, à un risque suicidaire accru et à une altération de la qualité

de vie [232], [269], [270]. La réalisation précoce de programmes de psychoéducation orientés vers

le rétablissement (TIPP ; [271] ; TCC-P ; [272]) pourrait permettre de réduire le stress lié à la

stigmatisation et de prévenir l’auto-stigmatisation [42], [241]. Leur efficacité sur ces paramètres n’a

toutefois pas encore été évaluée. La présence de troubles cognitifs et l’utilisation de stratégies

d’évitement en situation sociale peuvent contribuer à l’auto-stigmatisation et réduire la résistance à

la stigmatisation [214], [215], [228]. Certaines stratégies de réhabilitation psychosociale, comme la

remédiation cognitive, les thérapies cognitives et comportementales ou encore l’entraînement des

compétences sociales, pourraient également permettre de réduire l’auto-stigmatisation [215]. Le

programme RemedRugby, une intervention de remédiation de la cognition sociale couplée à la

pratique d’une activité sportive, comprend un volet dédié à la déstigmatisation dans les relations

sociales et avec les médias locaux [273], [274]. Il a fait l’objet d’une étude multicentrique quasi-

expérimentale de 2015 à 2018, retrouvant entre autres une efficacité modérée sur l’auto-

stigmatisation [274].

Parmi les programmes spécifiques, le programme HOP (Honest, Open and Proud ; [200], [201])

semble particulièrement efficace chez les adolescents avec troubles psychiatriques débutants. Il

permettrait la réduction du recours aux stratégies d’évitement, du stress lié à la stigmatisation, de

l’auto-stigmatisation et l’amélioration des symptômes dépressifs et de la qualité de vie [201]. La

divulgation contrôlée des troubles serait une des stratégies thérapeutiques les plus pertinentes dans

les stades précoces de l’auto-stigmatisation [201], [275]. La participation à un programme plus

structuré comme NECT s’avére au contraire nécessaire pour les personnes déjà auto-stigmatisées,

ce type d’intervention complétant utilement l’offre de soins et services des centres de réhabilitation

psychosociale [193], [215], [276]. Le programme NECT est d’ailleurs en cours d’adaptation pour

les personnes avec troubles psychiatriques débutants [77].

L’implication précoce des familles est également indispensable pour prévenir l’auto-stigmatisation

[215]. Celle-ci est en effet liée à l’insight parental chez des adolescents avec troubles psychiatriques

débutants [230], ce qui plaide pour la mise en place précoce de programmes de psychoéducation

familiale intégrant la prévention de la stigmatisation et de l’auto-stigmatisation (BREF ; [277] ;

AVEC ; [272]). La psychoéducation familiale (BREF ; [277]; AVEC ; [272]; ProFamille ; [278])

pourrait par ailleurs renforcer la résistance à la stigmatisation, liée à la satisfaction dans les relations

familiales [228]. Il serait par ailleurs pertinent de mesurer l’efficacité de ces interventions sur

l’auto-stigmatisation des aidants familiaux et d’étudier si celle-ci influence leurs effets sur la

dépression des proches et le devenir des personnes concernées.

Chapitre 3. Limites

Ce travail de thèse présente plusieurs limites. L’hétérogénéité dans la définition des TPSP, des

échantillons, des paradigmes expérimentaux, des échelles d’évaluation et des variables d’intérêt

recueillies a compliqué les comparaisons inter-études dans les deux revues de littérature sur l’auto-

stigmatisation [215], [279]. Celle-ci est par ailleurs peu étudiée d’un point de vue expérimental, en

raison de la difficulté à créer un paradigme pertinent pour mesurer un construit aussi complexe que

l’identité d’un individu ou au contraire son sentiment d’aliénation [279]. Le nombre limité d’études

longitudinales sur l’auto-stigmatisation et les biais de publication constituent aussi des limites

potentielles [215].

Le réseau national des centres référents de réhabilitation psychosociale couvre une grande partie du

territoire national. Il n’est toutefois constitué que de personnes consultant dans un centre de

réhabilitation psychosociale et ne peut donc pas être considéré comme représentatif de l’ensemble

de la population avec TPSP [214], [228].

Chapitre 4. Perspectives

Ce travail de thèse a permis de dégager plusieurs pistes de recherche, dont un essai randomisé

contrôlé en stepped-wedge évaluant l’efficacité du programme NECT sur le fonctionnement social

des personnes avec TPSP [276]. Cet essai comporte par ailleurs une étude ancillaire franco-suisse,

dont les objectifs sont : i) de modéliser d’un point de vue expérimental les liens entre auto-

stigmatisation, rejet social chronique et sensibilité au rejet social ; ii) d’évaluer l’efficacité du

programme NECT sur la sensibilité au rejet social aigu dans les TPSP. Cette étude ancillaire a fait

l’objet d’une lettre d’intention auprès de la Fondation d’Harcourt (en annexe).

La cohorte REHABase ouvre de nombreuses possibilités de recherche, transversales et

longitudinales. Plusieurs analyses sont en cours ou prévues prochainement, portant notamment sur

les caractéristiques des parents avec TPSP, sur celles des personnes exerçant un emploi compétitif,

ou encore celles des femmes présentant un trouble de personnalité borderline ou un trouble du

spectre de l’autisme. Une évaluation longitudinale des effets de la réhabilitation psychosociale sur

l’auto-stigmatisation à deux ans est prévue dans les prochaines années. L’emploi accompagné IPS

(Individual Placement and Support ; [280]) est déployé dans plusieurs centres participant au réseau

national REHABase. Son efficacité pourrait être potentialisée en y associant des interventions de

réhabilitation psychosociale [281-283]. Le programme IPS intégré (IPS-I), développé au centre

référent de réhabilitation psychosociale de Grenoble, comprend un module de TCC en 8 séances sur

la motivation à retrouver un emploi et un module de 12 séances d’entraînement des compétences

sociales en milieu professionnel réalisés simultanément à l’emploi accompagné IPS [284]. Il a fait

l’objet de dépôt de lettres d’intention et d’un protocole expérimental lors de l’appel à projet PRME

2018 et 2019.

L’auto-stigmatisation a également un impact sur les relations sentimentales, la vie de couple et la

décision de devenir ou non parent [215]. Sa réduction dans ce contexte est abordée dans un groupe

de réhabilitation psychosociale en 21 séances, construit sur la base de focus groups et dont la

validation scientifique est prévue prochainement [285].

Ce travail a par ailleurs montré que l’auto-stigmatisation affecte aussi les personnes avec troubles

du spectre de l’autisme sans déficience intellectuelle, bien que de façon plus modérée [214]. La

stigmatisation publique, perçue, expérimentée et internalisée a été très peu étudiée dans cette

population et devrait être investiguée de façon plus approfondie [10], [214], [286].

Ce travail ouvre plusieurs autres pistes de recherche pertinentes : i) l’étude de l’auto-stigmatisation

chez les familles ; ii) l’évaluation de l’efficacité de la psychoéducation familiale sur l’auto-

stigmatisation des usagers et de leurs proches ; iii) l’étude de l’auto-stigmatisation dans les troubles

psychiatriques débutants et l’évaluation de l’efficacité des programmes d’intervention précoce sur

la réduction de l’auto-stigmatisation ; iv) l’évaluation de l’impact de programmes de formation aux

pratiques orientées rétablissement sur les attitudes implicites et explicites des professionnels de

santé mentale et l’auto-stigmatisation des usagers.

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Annexe

ConceptNoteTemplateConceptNotescanbesentbyemailtoinfo@fondationdharcourt.org

NameofORGANIZATION:FondationFondamentalSuisse

Legalstatus(Association,NGO,UN,Foundation,etc.):Foundation

Address:RueduNant8,1207Geneva

Website:www.fondamental-suisse.org

AnnualReportifavailable(URL):N/A

Contactperson:AliceSilvestre

Position:Fundraisingmanager

PhoneNumber:0786145979

E-mailaddress:[email protected]

TITLE OF THE PROJECT:Narrative Enhancement and Cognitive Therapy (NECT) to reduce self-stigma in Serious Mental Illness: preliminary effectiveness on response to acute social rejection and on chronic peripheral inflammation ProjectLocation(Pleasespecifyvillageorcity,regioncountry):

The co-coordination of this Swiss-French bi-national project will be Geneva-Grenoble (Dr Hélène Richard-Lepouriel, Dr Julien Dubreucq). This project will involve partners from the University of Geneva (Indrit Begue, Swann Pichon), the University Hospital Grenoble Alpes (Pr Mircea Polosan) and the University of Lyon 1 (Pr Nicolas Franck).

Durationoftheproject(months):36 months (January 2020- January 2023)

Briefdescriptionofthecontextandneeds-basedassessment:

Mental illness stigma refers to the negative beliefs, emotional reactions, and attitudes towards people with Serious Mental Illness (SMI) endorsed by the general population (also referred to as public stigma1). People with SMI are generally acutely aware of public stigma and expect to be rejected by others (69.4% of the 1,229 participants with schizophrenia (SZ) and 71.6% of the 1,182 participants with mood disorders in the GAMIAN-Europe study had high perceived stigma2,3). In a recent study, borderline personality participants reported higher ISMI score than participants living from bipolar disorder23. People with SMI are more likely to experience discrimination in a range of aspects of their daily life. They frequently expect to be discriminated in social contexts even when they have no previous experience of discrimination. Stereotype awareness and self-labelling with SMI can be associated with agreement with these stereotypes, and application to describe oneself, leading to self-stigma.1 Self-stigma refers to the process whereby a person’s previously held social identity is progressively replaced by a devalued and stigmatised view of oneself. Self-stigma is highly prevalent in Europe (41.7% in SZ and 21.7% in mood disorders2,3) and in France (31.2% in SMI26). Self-stigma can have pervasive effects on outcomes related to recovery from SMI, including self-esteem, hopefulness, social interaction, employment, and symptom severity4. Self-stigma is negatively associated with self-esteem, motivation to achieve personal life goals, shared-decision making, adherence into treatment, well-being, quality of life, personal recovery and social function.5-7People with elevated self-stigma report more dysfunctional attitudes and social withdrawal.7 Impairments in cognitive functioning,

metacognition and social cognition predict increased self-stigma.7 Self-stigma can be deconstructed 24. Self-destigmatization is a personal and inter-relational process that deconstructs self-stigmatization and leads to an assumed and attuned individuality25. Narrative Enhancement and Cognitive Therapy (NECT) is a structured, 20 session group-basedapproach which combines psychoeducation to counteract SMI stereotypes, cognitive restructuring to challenge dysfunctional attitudes about the self, and story-telling exercises to enhance meaning-making and the person’s ability to move beyond their illness-identity to a more integrated sense of self.8 NECT showed effectiveness in improving self-stigma, hope and self-esteem9-11 with persisting effects after 6 months’ follow-up.8-10 NECT showed effectiveness in reducing social withdrawal and avoidant coping strategies in participants with schizophrenia (SZ) in comparison with an active control condition.10

CBT targeting positive symptoms has shown effectiveness in improving functional connectivity to social threat in SZ11.

Two cognitive models of self-stigma and one of stigma resistance were described in the literature6. Implicit self-stigma (defined as the combination of implicit negative attitudes towards mental illness and low implicit self-esteem) was strongly correlated with explicit self-stigma and identified as a predictor of subjective quality of life6. Social alienation (or high perceived social loneliness associated with low personality trait agreeableness) was associated with reduced insula activation in participants with SZ when processing covert expressions of disgust6. It has been suggested that a decreased sensitivity to subtle signals of social rejection that might protect individuals against social alienation6. Stigma resistance (defined as low negative implicit associations between SZ and social inferiority) was associated with the enhanced activation of rostro-ventral-medio prefrontal cortex and decreased activation of the amygdala6. Social rejection models recreate stigma-related environments under experimental conditions. The most popular paradigm is the cyberball game, a ball-tossing game in which participants believe they are playing with fellow participants, but are in fact randomly assigned to inclusion, exclusion and sometimes over-inclusion conditions and play with computer-controlled players. Cyberball is considered to be an ecologically valid paradigm for evaluating emotional reactions following social inclusion or exclusion, and was used in numerous studies involving healthy individuals and people with SMI6. Acute social rejection, low stigma resistance, and stereotype threat conditions led to underperformance in cognitive or social cognitive tasks and in social skills in people with SMI6. The associations between self-stigma, cognitive performance and social functioning are however still unclear6. Psychiatric symptoms, illness duration and baseline non-specific distress influenced the response to acute social rejection or stigma.

Chronic social rejection was investigated in people without SMI, but confronted with prolonged ostracism (social rejection > 3-months). 12-14 In contrast to acute social rejection, chronic social rejection was associated with feelings of resignation, helplessness, unworthiness and low self-worth and ultimately with social alienation and depression12-14. An increased sensitivity to acute social exclusion was also found in people suffering from chronic social rejection12-14. In people at risk of being ostracized, enhanced spontaneous amygdala resting-state activity and increased connectivity within the salience network were associated with a greater exposure to discrimination, independently of ethnicity, sex or current psychiatric comorbidities15. Elevated pro-inflammatory cytokines (Il-6 and TNF-alpha) were associated with enhanced dorsal anterior cingulate cortex and anterior insula activation after acute social rejection in healthy controls (HC16). Exposure to everyday social stressors and to social rejection was associated in HC with elevated inflammatory activity and with major depression17-18. Elevated CRP levels were found in people with SZ or BD18 and associated with more severe depressive symptoms in people with SZ18. Research on chronic social rejection is extremely limited in HC and non-existent in people with SMI. The correlations between inflammatory activity, experiences of discrimination and self-stigma in people with SMI have not been investigated to date.

This project aims at comparing the response to acute social rejection in SMI patients with elevated self-stigma and with low self-stigma. This collaborative project has also for objective to assess whether self-stigma reduction through specific cognitive behavior therapy improves the response to acute social rejection and chronic peripheral inflammation in SMI patients with elevated self-stigma.

Project objectives:

• Aim 1: To compare the response to acute social rejection in SMI patients with elevated self-stigma and with low self-stigma

• Aim 2: To investigate the relationships between experienced stigma, self-stigma, acute social rejection and inflammatory activity in people with SMI

• Aim 3: To investigate whether self-stigma reduction with NECT improves the response to acute social rejection and chronic peripheral inflammation

Project Activities and indicative timeline (Please identify indicators for each activity): Our project is based on two independent work packages (WP).

In WP 1 (3 months) we will design a Cyberball paradigm modeling acute social rejection in experimental conditions. We will investigate the cross-sectional (at T0) associations between self-stigma (measured with Internalized Stigma of Mental Illness (ISMI19), experienced and anticipated stigma using Discrimination and Stigma Scale (DISC 1220), acute social rejection, social anxiety with Leibowitz Social Anxiety Scale (LSAS), cognitive functioning with a large battery, metacognitive abilities using Metacognition Assessment Scale (MAS-A), social functioning with Personal and Social Performance Scale (PSP21) and chronic peripheral inflammation (CRP). Cognitive evaluation will include Wechsler Adult Intelligence Scale-4th edition (WAIS-IV) subscales assessing working memory, verbal abstraction and hypothetico-deductive reasoning, UPPS for the self-assessment of impulsivity, BEM-144 story subtest for auditive-verbal memory, Trail Making Test A and B (TMT-A or B) respectively for speed of processing and reactive mental flexibility, Stroop test and GoNogo for inhibition abilities, TAP for cognitive flexibility D2-R for selective attention, concentration, and speed of processing, shopping test for planning abilities and Versailles-Situational Intention Reading Test61 (V-SIR) for Theory of Mind (ToM).

In WP 2 (18 months), we will perform an ancillary trial to the primary study conducted by our group on NECT effectiveness on social function in SMI22. This randomized controlled study is multi-centric, prospective, interventional and exploratory. For ethical purposes, we have chosen a stepped wedge cluster randomized trial design, with a waiting list type control group. The total duration of the study will be 24 months to allow for: recruitment of the target number of participants; delivery of the intervention; follow-up assessments; data analysis using intention-to-treat methods. The participants who agree to join the study will then be randomized into two groups: one group (Group 1) receiving the intervention at the beginning of the study (T0), one group (Group 2) being a control group for the first 6 months and receiving the intervention after (T1). Outcomes will be compared in all groups at T0 and T1 (duration of intervention= 6 months). 6-month and 12-month outcomes for Group 1 and 2 will be measured without a control group at T2 (18 months after T0) to evaluate the stability of the effects over time. This proof of concept trial will investigate whether the NECT intervention improves social anxiety, social withdrawal, the response to acute social rejection, inhibition abilities, cognitive flexibility and chronic peripheral inflammation.

Month

0-3 03-18 18-30 30-36

Developmentofanexperimentalparadigm

N=36persons

INCLUSION

N=36persons

FOLLOW-UP

DATAMANAGEMENT,ANALYSES&RAPPORT

Methodology/Strategy of intervention (Please include added-value and/or innovation if any and the role

of each partner if any):

There are currently no data on the relationships between self-stigma, experienced stigma, acute social rejection and inflammatory activity in SMI. Cognitive models of self-stigma that could be related to peripheral inflammation and brain functional connectivity are still underdeveloped. Specific CBT effectiveness on these variables is still unknown. If effective our project could pave the way for a PHRC-funded clinical trial.

Indrit Begue and Swann Pichon will coordinate WP1 and design the cognitive task. Julien Dubreucq and Nicolas Franck will be the scientific coordinators of this project. Julien Dubreucq, Hélène Richard-

Lepouriel and Mircea Polosan will participate to the inclusion and clinical assessment of SMI patients in WP 1 and 2.

Target population (Please specify number of direct and indirect beneficiaries that will benefit by your proposed actions): 36 SMI patients (schizophrenia, bipolar disorder and borderline personality disorder) with elevated self-stigma and 36 SMI patients with low self-stigma. If effective it could benefit to all people with SMI and elevated self-stigma participating to NECT. Expected Results:

• Hypothesis 1: We expect that SMI patients with elevated self-stigma will show at baseline hypersensitivity to acute social rejection (increased negative expectations before the task, greater social distress, more negative emotions and less use of functional emotion regulation strategies after social exclusion) compared with those with low self-stigma

• Hypothesis 2: We expect that SMI patients with elevated self-stigma will have at baseline increased social anxiety, impaired cognitive, metacognitive and social functioning and higher CRP levels compared with those with low self-stigma

• Hypothesis 3: We expect that the intervention (NECT) will improve social anxiety, social withdrawal, cognitive flexibility, sensitivity to acute social rejection and chronic peripheral inflammation in patients with elevated self-stigma

Monitoring and evaluation of the project: The main endpoint is the sensitivity to acute social rejection within 12 months of inclusion: improved negative expectations, negative emotions and use of functional emotion regulation strategies after social exclusion Sustainability of the project: This project is an ancillary study to a trial that has already been approved by the relevant ethical committee in France (CPP Nord-Ouest I) on 2019/04/26. The study protocol has also been submitted to the ethical committee in Switzerland. The recruitment will begin on 2019/09/01 with an estimated study completion date is 2023/04/03. Our project and will benefit from clinical data and biological samples already collected within the frame of the network of Expert Centers for Schizophrenia and Bipolar Disorder. The clinicians involved in our project are recognized leaders in their field of expertise, which include social psychiatry and cognitive neuroscience.

Total Budget per year (CHF): 100 000 CHF Requested funding from Fondation d’Harcourt per year (CHF): 33 000 CHF (100 000 CHF after 3 years) Detailed budget: Development of the cognitive task: 15 000 CHF Statistics / data management: 15 000 CHF Clinical Study: 70 000 CHF Name(s) of other donor(s) funding the project: Searches in progress

Referencesrelatedtotheproject

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2017;52(11):1415-23 10. Yanos et al. (2019) Soc Psychiatry Psychiatr Epidemiol.; doi:

10.1007/s00127-019-01702-0 11. Mason et al. (2016) Schizophr Bull; 42(3): 684–692. 12. Williams, et al (2009). Advances in Experimental Social

Psychology. 41, 275–314. 13. Riva et al. (2014) Basic and applied social psychology. 36,

329–346. DOI: 10.1080/01973533.2014.917975

14. Riva et al (2017). Journal of Social and Personal Relationships. 34(4), 1-24. DOI: 10.1177/0265407516644348

15. Clark et al. Biol. Psychiatry Cogn. Neurosci. Neuroimaging. 3(4), 367-378. doi: 10.1016/j . Bpsc.2017.11.011..

16. Slavich et al. (2010) Proc. Natl. Acad. Sci. U. S. A. 107(33), 14817-22. doi: 10.1073/pnas.1009164107.

17. Slavich et al. (2014) Psychol. Bull. 140(3), 774-815 18. Horsdal et al (2017) Eur. Psychiatry. 44, 164-172. doi:

10.1016/j.eurpsy.2017.04.012 19. Boyd et al (2003) Psychiatry Res 121:31-49 20. Brohan et al (2013) Psychiatr Res, 208(1):33–40. 21. Nasrallah H et al. (2008) Psychiatry Research; 161: 213-224 22. Dubreucq et al . (2019) BMC Trials, in review 23. Filion Quenneville et al. (2019) J Affect Disorder. in review 24. Richard-Lepouriel (2017). JTCC, 27(4), 177-183. 25. Richard-Lepouriel et al. (2019) J Affect Disord. in review 26. Dubreucq et al (2019). European Psychiatry, in rev

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