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Self-stigma in serious mental illness and autism spectrum disorder: Results from the REHABase national psychiatric rehabilitation cohort

Published online by Cambridge University Press:  07 February 2020

J. Dubreucq*
Affiliation:
Centre de Neurosciences Cognitive, UMR 5229, CNRS & Université Lyon 1, Lyon, France Centre Référent de Réhabilitation Psychosociale et de Remédiation Cognitive (C3R), Centre Hospitalier Alpes Isère, Grenoble, France Fondation FondaMental, Créteil, France Réseau Handicap Psychique, Grenoble, France
J. Plasse
Affiliation:
Centre Référent Lyonnais de Réhabilitation Psychosociale CL3R, Centre Hospitalier Le Vinatier, Lyon, France Centre Ressource de Réhabilitation Psychosociale et de Remédiation Cognitive, Hôpital Le Vinatier, UMR 5229, CNRS & Université Lyon 1, Université de Lyon, Lyon, France
F. Gabayet
Affiliation:
Centre Référent de Réhabilitation Psychosociale et de Remédiation Cognitive (C3R), Centre Hospitalier Alpes Isère, Grenoble, France Fondation FondaMental, Créteil, France
M. Faraldo
Affiliation:
Centre Référent de Réhabilitation Psychosociale et de Remédiation Cognitive (C3R), Centre Hospitalier Alpes Isère, Grenoble, France Fondation FondaMental, Créteil, France
O. Blanc
Affiliation:
Fondation FondaMental, Créteil, France CMP B, CHU, EA 7280 Faculté de Médecine, Université d’Auvergne, BP 69 63003 Clermont-Ferrand Cedex 1, France
I. Chereau
Affiliation:
Fondation FondaMental, Créteil, France CMP B, CHU, EA 7280 Faculté de Médecine, Université d’Auvergne, BP 69 63003 Clermont-Ferrand Cedex 1, France
S. Cervello
Affiliation:
Centre de Neurosciences Cognitive, UMR 5229, CNRS & Université Lyon 1, Lyon, France Centre Référent Lyonnais de Réhabilitation Psychosociale CL3R, Centre Hospitalier Le Vinatier, Lyon, France Centre Ressource de Réhabilitation Psychosociale et de Remédiation Cognitive, Hôpital Le Vinatier, UMR 5229, CNRS & Université Lyon 1, Université de Lyon, Lyon, France
G. Couhet
Affiliation:
Centre Référent de Réhabilitation Psychosociale C2RP Nouvelle-Aquitaine Sud, Pôle de Réhabilitation Psychosociale, Centre de la Tour de Gassies, Bruges, France
C. Demily
Affiliation:
Centre de Neurosciences Cognitive, UMR 5229, CNRS & Université Lyon 1, Lyon, France Centre de Référence Maladies Rares Génopsy, Centre Hospitalier Le Vinatier, UMR 5229, CNRS & Université Lyon 1, Université de Lyon, Lyon, France
N. Guillard-Bouhet
Affiliation:
CREATIV & URC Pierre Deniker, CH Laborit, Poitiers, France
B. Gouache
Affiliation:
Centre Référent de Réhabilitation Psychosociale et de Remédiation Cognitive (C3R), Centre Hospitalier Alpes Isère, Grenoble, France
N. Jaafari
Affiliation:
CREATIV & URC Pierre Deniker, CH Laborit, Poitiers, France
G. Legrand
Affiliation:
Centre Hospitalier Sainte Marie de Clermont Ferrand, 63037Clermont-Ferrand Cedex 1, France
E. Legros-Lafarge
Affiliation:
Centre Référent de Réhabilitation Psychosociale de Limoges C2RL, CH Esquirol, Limoges, France
R. Pommier
Affiliation:
REHALise, CHU de Saint-Etienne, Saint-Priest-en-Jarez, France
C. Quilès
Affiliation:
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, 33000Bordeaux, France
D. Straub
Affiliation:
Centre de Réhabilitation Psychosociale, Centre Hospitalier de Roanne, Roanne, France
H. Verdoux
Affiliation:
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, 33000Bordeaux, France
F. Vignaga
Affiliation:
Dispositif de Soins de Réhabilitation Psychosociale, Centre Psychothérapeutique de l’Ain, Bourg-en-Bresse, France
C. Massoubre
Affiliation:
REHALise, CHU de Saint-Etienne, Saint-Priest-en-Jarez, France
N. Franck
Affiliation:
Centre de Neurosciences Cognitive, UMR 5229, CNRS & Université Lyon 1, Lyon, France Centre Référent Lyonnais de Réhabilitation Psychosociale CL3R, Centre Hospitalier Le Vinatier, Lyon, France Centre Ressource de Réhabilitation Psychosociale et de Remédiation Cognitive, Hôpital Le Vinatier, UMR 5229, CNRS & Université Lyon 1, Université de Lyon, Lyon, France
REHABAse Network
Affiliation:
Centre Ressource de Réhabilitation Psychosociale et de Remédiation Cognitive, Hôpital Le Vinatier, UMR 5229, CNRS & Université Lyon 1, Université de Lyon, Lyon, France
*
J. Dubreucq, E-mail: [email protected]

Abstract

Background.

Self-stigma is a major issue in serious mental illness (SMI) and is negatively associated with patient outcomes. Most studies have been conducted in schizophrenia (SZ). Less is known about self-stigma in other SMI and autism spectrum disorder (ASD). The objectives of this study are: (i) to assess the frequency of self-stigma in a multicentric nonselected psychiatric rehabilitation SMI and ASD sample; and (ii) to investigate the correlates of elevated self-stigma in different SMI conditions and in ASD.

Methods.

A total of 738 SMI or ASD outpatients were recruited from the French National Centers of Reference for Psychiatric Rehabilitation cohort (REHABase). Evaluations included sociodemographic data, illness characteristics, and standardized scales for clinical severity, quality of life, satisfaction with life, wellbeing, personal recovery, a large cognitive battery, and daily functioning assessment.

Results.

31.2% of the total sample had elevated self-stigma. The highest prevalence (43.8%) was found in borderline personality disorder and the lowest (22.2%) in ASD. In the multivariate analysis, elevated self-stigma was best predicted by early stages of personal recovery (moratorium, p = 0.001, OR = 4.0 [1.78–8.98]; awareness, p = 0.011, OR = 2.87 [1.28–6.44]), history of suicide attempt (p = 0.001, OR = 2.27 [1.37–3.76]), insight (p = 0.002, OR = 1.22 [1.08–1.38]), wellbeing (p = 0.037, OR = 0.77 [0.60–0.98]), and satisfaction with interpersonal relationships (p < 0.001, OR = 0.85 [0.78–0.93]).

Conclusions.

The present study has confirmed the importance of addressing self-stigma in SMI and ASD patients enrolled in psychiatric rehabilitation. The effectiveness of psychiatric rehabilitation on self-stigma and the potential mediating effects of changes in self-stigma on treatment outcomes should be further investigated.

Type
Research Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
Copyright
© The Author(s) 2020

Introduction

Many members of the general public endorse negative stereotypes about Serious Mental Illness (SMI) or autism spectrum disorders (ASD). These include expectations of violence and an inability to work or to live in society that can lead to social distancing and rejection. Although less stigmatized than schizophrenia (SZ), ASD was associated with dangerousness to self and an inability to work in over 20% of the 1,000 respondents in a 2012 French population survey [Reference Durand-Zaleski, Scott, Rouillon and Leboyer1]. Most people with SMI are aware of these stereotypes and expect to be discriminated against by other people because of their condition (69.4% of the 1,229 participants with SZ and 71.6% of the 1,182 participants with mood disorders in the GAMIAN-Europe study had high perceived stigma [Reference Brohan, Elgie, Sartorius and Thornicroft2,Reference Brohan, Gauci, Sartorius and Thornicroft3]). Self-stigma—or internalized stigma (IS)—occurs when someone accepts the negative stereotypes about SMI or ASD as a true description of him/herself [Reference Corrigan and Watson4]. IS refers to the process wherein 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 stigmatized view of oneself. IS is highly prevalent in Europe (41.7% in SZ, 21.7% in mood disorders [Reference Durand-Zaleski, Scott, Rouillon and Leboyer1,Reference Brohan, Elgie, Sartorius and Thornicroft2]) and the United States (36.1% out of 144 people with SMI [Reference West, Yanos, Smith, Roe and Lysaker5]). According to the “illness identity model” [Reference Yanos, Roe, Markus and Lysaker6], IS can have pervasive effects on recovery-related outcomes, including self-esteem, hopefulness, wellbeing, motivation to achieve personal life goals, social interaction, employment, and symptom severity [7–10]. Individuals with elevated self-stigma report more dysfunctional attitudes, social withdrawal, depressive symptoms, and increased suicidal ideation [Reference Yanos, Roe, Markus and Lysaker6,Reference Schrank, Amering, Hay, Weber and Sibitz11,Reference Park, Bennett, Couture and Blanchard12]. Several studies also support that high insight into illness directly predicts and compounds the effects of self-stigma on depression [Reference Schrank, Amering, Hay, Weber and Sibitz11,Reference Lysaker, Roe and Yanos13,Reference Lysaker, Vohs, Hasson-Ohayon, Kukla, Wierwille and Dimaggio14]. Impaired cognitive functioning, metacognition, and social cognition predict increased self-stigma [14Reference Hasson-Ohayon, Mashiach-Eizenberg, Elhasid, Yanos, Lysaker and Roe17].

Stigma studies have mostly targeted individuals with SZ (54.3% out of 127 articles; Livingston and Boyd [Reference Livingston and Boyd18]; 42.3% of 220 articles in a recent review [Reference Dubreucq and Franck19]), SMI (40% of 220 articles [Reference Dubreucq and Franck19]) or mood disorders (bipolar disorder [BD] 5% and major depression [MDD] 5.7% of 220 articles [Reference Dubreucq and Franck19]). Considerably less is known about IS in borderline personality disorder (BPD), anxiety disorders, and ASD. Some studies found that self-stigma was higher in BPD than in SZ (Internalized Stigma of Mental Illness [ISMI] mean total score = 2.43 BPD vs. 2.34 SZ [Reference Grambal, Prasko, Kamaradova, Latalova, Holubova and Marackova20]) and lower in anxiety disorders (ISMI total score ranging from 1.98 to 2.24 in Europe [Reference Dubreucq and Franck19]) or ASD (ISMI total = 1.93, 15.7% out of 149 participants showing elevated self-stigma [Reference Bachmann, Höfer, Kamp-Becker, Küpper, Poustka and Roepke21]). Self-stigma was also associated with increased psychiatric symptoms, reduced hope, and lower treatment adherence in anxiety disorders or BPD [Reference Grambal, Prasko, Kamaradova, Latalova, Holubova and Marackova20,Reference Ociskova, Prasko, Kamaradova, Grambal and Sigmundova22,Reference Kamaradova, Latalova, Prasko, Kubinek, Vrbova and Mainerova23]. The correlates of IS in ASD are still unknown. Several potential predictors were identified, the most significant of which were insight into illness, hopelessness, impaired cognitive functioning, avoidant coping strategies, stigma stress, perceived stigma, and psychiatric symptoms [Reference Dubreucq and Franck19]. Contrasting results were found for occupational status, psychiatric diagnosis, and illness duration. Individual studies identified other factors such as parenting status or decreased wellbeing as potential predictors of self-stigma [Reference Lacey, Paolini, Hanlon, Melville, Galletly and Campbell24,Reference Young and Ng25]. Few studies investigated self-stigma within the context of psychiatric rehabilitation or recovery-oriented practices (7.7% of 220 articles [Reference Dubreucq and Franck19]). Recovery-oriented interventions have shown preliminary effectiveness on self-stigma [26–29]. Self-stigma was associated with worse treatment outcomes during vocational rehabilitation [Reference Yanos, Roe, West, Smith and Lysaker30]. However, the prevalence of IS in patients attending to psychiatric rehabilitation and its effects on therapeutic outcomes remain largely unknown. To the best of our knowledge, only one study, of a small sample of SZ patients, has investigated self-stigma in France, finding moderate levels of IS (n = 62, ISMI total score = 2.23 [Reference Bouvet and Bouchoux31]). The frequency of elevated self-stigma in SMI or ASD is still unknown.

To sum up, self-stigma is a major issue in SMI and is associated with poor clinical and functional outcomes. Its frequency in SZ or mood disorders is high in European countries. Considerably less is known about self-stigma in other SMI and in ASD and there are no data on IS prevalence in France. Previous research indicates that insight into illness, psychiatric symptoms, and cognitive functioning could predict the level of self-stigma. Other variables from individual studies such as parenting status or wellbeing might predict IS but these results need to be confirmed. The correlates of IS in BPD, anxiety disorders and ASD remain largely unknown.

The objectives of the present study were: (i) to assess the frequency of self-stigma in a multicentric nonselected psychiatric rehabilitation SMI and ASD sample; and (ii) to investigate the correlates of elevated self-stigma in different SMI conditions and in ASD.

Materials and Methods

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 [Reference Franck, Bon, Dekerle, Plasse, Massoubre and Pommier32]. 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 SMI (i.e., SZ, BD, BPD, MDD, or severe anxiety disorders, according to the SAMSAH 2013 definition [33]) or ASD (DMS-5 criteria [34]); (ii) a score below the cut-off scores for social recovery according to Jääskeläinen et al. in 2013 (a score of less than 61 on the Global Assessment of Functioning (GAF) Scale [Reference Jääskeläinen, Juola, Hirvonen, McGrath, Saha and Isohanni35]). 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 [Reference Franck, Bon, Dekerle, Plasse, Massoubre and Pommier32]. 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.

Site selection and training

Site selection and training have been described in a previous article [Reference Franck, Bon, Dekerle, Plasse, Massoubre and Pommier32]. 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 nonpharmacological), 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.

Data collected

General information on education, marital status, economic status, illness onset and trajectory and comorbidities was recorded. Self-stigma was assessed using the ISMI Scale [Reference Brohan, Elgie, Sartorius and Thornicroft2,Reference Boyd Ritsher, Otilingam and Grajales36], a 29-item self-report measure designed to assess people’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 devalued member of society; stereotype endorsement or agreement with negative attitudes about SMI; experience of discrimination; and social withdrawal as a coping strategy and stigma resistance). Stigma resistance is generally excluded because of poor correlations with other subscales [Reference Yanos, Lysaker, Silverstein, Vayshenker, Gonzales and West37]. A higher score reflects a higher level of self-stigma. A score above 2.5 indicates a moderate to high level of self-stigma [Reference Brohan, Elgie, Sartorius and Thornicroft2,Reference Brohan, Gauci, Sartorius and Thornicroft3]. 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) [Reference Wallace, Lecomte, Wilde and Liberman38]. Illness severity was assessed using the Positive and Negative Syndrome (PANSS) [Reference Kay, Fiszbein and Opler39] and the Clinical Global Impression (CGI) [Reference Haro, Kamath, Ochoa, Novick, Rele and Fargas40] scales. Insight and treatment adherence were measured with self-reported measures (Birchwood Insight Scale [BIS] [Reference Birchwood, Smith, Drury, Healy, Macmillan and Slade41]; Medication Adherence Rating Scale [MARS] [Reference Thompson, Kulkarni and Sergejew42]). General functioning was measured with the GAF Scale [Reference Startup, Jackson and Bendix43]. Quality of Life was evaluated with the self-reported Subjective Quality of Life Scale (S-QoL) [Reference Auquier, Simeoni, Sapin, Reine, Aghababian and Cramer44] and wellbeing using the Warwick-Edinburgh Mental Well-being Scale (WEMWBS) [Reference Tennant, Hiller, Fishwick, Stephen, Stephen and Scott45]. Self-esteem was assessed with the Self-Esteem Rating Scale-Short Form (SERS-SF) [Reference Lecomte, Corbière and Laisné46] and personal recovery was measured using the self-reporting Stages of Recovery Instrument (STORI) [Reference Andresen, Caputi and Oades47]. Baseline neuropsychological cognitive assessments include the Wechsler Adult Intelligence Scale-4th edition (WAIS-IV) [Reference Wechsler48] subscale assessing short-term and working memory, the California Verbal Learning Test [Reference Delis, Freeland, Kramer and Kaplan49] or RL/RI-16 [Reference Van der Linden, Coyette, Poitrenaud, Béatrice, Bernard and Anne-Marie50] for global verbal memory, d2-R for selective attention, concentration and speed of processing [Reference Brickenkamp, Schmidt-Atzert and Liepmann51] and the shopping test [Reference Fournet, Demazière-Pelletier, Favier, Lemoine and Gros52] or Six Element Test [Reference Shallice and Burgess53] for planning abilities. Theory of mind was assessed using the Movie for the Assessment of Social Cognition [Reference Dziobek, Fleck, Kalbe, Rogers, Hassenstab and Brand54] and attribution style with the Ambiguous Intentions and Hostility Questionnaire (AIHQ) [Reference Combs, Penn, Wicher and Waldheter55].

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 a high level of self-stigma. 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 self-stigma. The collinearity was checked using the variance inflation factor. 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/) [56].

Results

Seven hundred and thirty-eight clinically stabilized patients were recruited from the REHABase network. They were included in this cohort study between January 2016 and April 2019. SZ was the most common diagnosis with 466 patients (63.1%). Other diagnoses were BD (117, 15.9%), BPD (64, 8.7%), ASD (45, 6.1%), MDD (27, 3.7%), and anxiety disorders (19, 2.5%). The included patients were mostly men (500, 67.8%), with a mean duration of illness of 11.5 (SD = 8.7) years and a mean baseline PANSS total score of 66.4 (SD = 19.1). Baseline sample characteristics are shown in Table 1. There were significant differences according to participant’s psychiatric diagnosis (data not shown). The analysis of variance showed that diagnosis had a significant effect on GAF (F(5, 514) = 3.71, p = 0.03). The post hoc analyses indicated that global functioning was lower in SZ than in BD (diff = −6.3, p = 0.02). A significant effect was also found on subjective QoL (F(5,649) = 4.64, p < 0.001). SQoL was significantly lower in anxiety disorders (diff = −13.5, p = 0.02) and BPD (diff = −8.4, p = 0.01) compared with SZ. Wellbeing (F(5, 699) = 3.28, p = 0.006) and satisfaction with interpersonal relationships (F(5, 569) = 5.48, p < 0.001) were significantly lower in BPD compared with SZ and BD (diff = −0.6 for WEMWBS and diff = −2 for satisfaction with interpersonal relationships).

Table 1. Patient characteristics

Values are mean (SD) or n (%).

Frequency of elevated self-stigma

The internal consistency for the 24-item ISMI was α = 0.90. The stigma resistance subscale had an internal consistency of α = 0.49. The following values were found for the other four subscales: alienation α = 0.81, stereotype endorsement α = 0.69, experience of discrimination α = 0.78, social withdrawal α = 0.78. Table 2 presents the results of grouping ISMI total and subscale scores for the total sample and per diagnosis, using minimal-low and moderate-high self-stigma categories. Elevated self-stigma was found in 31.2% of the total sample (29.8% in SZ, 29.9% in BD, 40.7% in MDD, 42.1% in anxiety disorders, 43.8% in BPD and 22.2% in ASD). The highest extent of self-stigma was found in BPD (mean ISMI total score = 2.36) and the lowest in ASD (2.13).

Table 2. Internalized stigma in psychiatric disorders in the study sample

Correlates of elevated self-stigma

Table 3 presents the results of the univariate analyses for the correlates of elevated self-stigma. Significant associations were found with female gender (p = 0.095; OR = 1.32 [0.95–1.83]) and older age at the time of admission (p = 0.002; OR = 1.03 [1.01–1.04]). Elevated self-stigma was positively associated with psychiatric comorbidities (p = 0.05, OR = 1.46 [1.00–2.12]), history of suicide attempt (p < 0.001, OR = 2.30 [1.64–3.22]), insight (BIS, p < 0.001, OR = 1.27 [1.17–1.38]) and clinical severity (CGI, p < 0.001, OR = 1.54 [1.28–1.87]). Elevated self-stigma was negatively associated with satisfaction with interpersonal (p < 0.001, OR = 0.79 [0.73–0.84]), familial (p < 0.001, OR = 0.85 [0.79–0.91]), and intimate relationships (p < 0.001, OR = 0.88 [0.83–0.93]). Negative associations were found between elevated self-stigma and wellbeing (WEMWBS total score, p < 0.001, OR = 0.54 [0.47–0.62]) or treatment adherence (MARS, p < 0.001; OR = 0.84 [0.77–0.92]). Elevated self-stigma was negatively associated with personal recovery (p < 0.001). Compared with participants in the growth stage of personal recovery, those in earlier stages showed significantly higher levels of self-stigma (moratorium, OR = 9.83 [5.73–17.33]; awareness, OR = 5.49 [3.08–9.97]; preparation, OR = 4.00 [2.06–7.79]; rebuilding, OR = 2.34 [1.34–4.15]). No significant correlations were found with age of onset, educational level, housing status, occupational status, duration of psychiatric hospitalizations, intimate relationships, parenting status, and cognitive functioning.

Table 3. Association between medical factors and quality of life with self-stigma in univariate logistic regression

Values are n (%) or mean (SD). Bold indicates p value <0.05.

In the multivariate analysis ( Table 4), elevated self-stigma was associated with early stages of personal recovery (moratorium, p = 0.001, OR = 4.0 [1.78–8.98]; awareness, p = 0.011, OR = 2.87 [1.28–6.44]), history of suicide attempt (p = 0.001, OR = 2.27 [1.37–3.76]), insight (p = 0.002, OR = 1.22 [1.08–1.38]), wellbeing (WEMWBS, p = 0.037, OR = 0.77 [0.60–0.98]) and satisfaction with interpersonal relationships (p < 0.001, OR = 0.85 [0.78–0.93]).

Table 4. Multivariate logistic regression summary (with stepwise selection)

Model chi-squared (8) = 104.1, p < 0.001.

Bold values refer to statistically significant correlations.

Discussion

To the best of our knowledge, this study is the first to assess the prevalence of self-stigma in a multicentric nonselected psychiatric rehabilitation SMI and ASD sample. As expected, the prevalence of self-stigma in France was high (31.3%). The highest proportion of individuals with elevated self-stigma was found in BPD (43.8%) and the lowest in ASD (22.2%). Self-stigma was higher in BD, MDD, and anxiety disorders compared with SZ. Female gender and older age at the time of admission predicted self-stigma in contrast with other socio-demographic variables (education level, occupational status, housing status, intimate relationships, parenting status). Illness duration, the number of psychiatric hospitalizations, a history of suicide attempt, and a greater insight into illness were significant correlates of the level of self-stigma. Other variables such as psychiatric diagnosis, age of onset, the duration of psychiatric hospitalizations and cognitive functioning did not yield significant associations. Self-stigma positively correlated with symptom severity, clinical severity, and psychiatric comorbidities. Elevated self-stigma was negatively associated with treatment adherence, psychosocial functioning, self-esteem, QoL, wellbeing, and satisfaction with different life domains and personal recovery. Self-stigma and personal recovery were strongly correlated in the multivariate model. Individuals in the early stages of personal recovery (moratorium or awareness) had a fourfold and a threefold risk, respectively, of presenting an elevated level of self-stigma compared with individuals in the growth stage. Other significant predictors of self-stigma in the multivariate model were a history of suicide attempt (twofold risk of elevated self-stigma), a higher insight into illness (risk ×1.22) and decreased wellbeing (risk ×1.3) and satisfaction with interpersonal relationships (risk ×1.18).

The prevalence of elevated self-stigma for SMI is comparable with other studies conducted in other countries across the world (weighted proportion = 31.5 of the 5,457 participants included in 27 studies [Reference Dubreucq and Franck19]). Self-stigma in SZ was within the average for European countries (mean IS = 2.16 in 10 studies [Reference Dubreucq and Franck19]), elevated self-stigma being less prevalent than in Brohan et al. (41.7%, mean IS = 2.40 [Reference Brohan, Elgie, Sartorius and Thornicroft2]). The important country-related %variations in this study may explain these differences (from 15.2% in Sweden to 50% in Croatia [Reference Brohan, Elgie, Sartorius and Thornicroft2]). Elevated self-stigma in SZ was less frequent compared with South Asia (weighted prevalence = 36.8% [Reference Dubreucq and Franck19]), South-East Asia (36.6%), Africa (39.4%), North America (44.2%), and South America (38.6%) [Reference Caqueo-Urízar, Boyer, Urzúa and Williams57]. Cultural factors and country or setting-related differences might explain these variations [Reference Dubreucq and Franck19]. Self-stigma in mood disorders was higher compared with other European countries (mean IS = 1.94 BD; 2.11 MDD, 21.7% with moderate-high self-stigma [Reference Brohan, Gauci, Sartorius and Thornicroft3]) and Turkey (mean IS = 2.10 BD, 18.5%) [Reference Sarısoy, Kaçar, Pazvantoğlu, Korkmaz, Öztürk and Akkaya58]. Self-stigma in BD was comparable to the results of a U.S. study with nonadherent patients (mean IS = 2.22; 26% [Reference Howland, Levin, Blixen, Tatsuoka and Sajatovic59]). Self-stigma in anxiety disorders was higher than in the Czech Republic (mean IS = 2.24 [Reference Ociskova, Prasko, Kamaradova, Grambal and Sigmundova22]; mean IS = 1.98 [Reference Grambal, Prasko, Kamaradova, Latalova, Holubova and Marackova20]). There are several potential explanations of this higher prevalence of self-stigma. The subsamples of patients with MDD or anxiety disorders were small in size (n = 27; n = 19) and may not be representative. A significant proportion of patients with mood disorders included in the REHABase network had comorbid personality (14% in BD; 21% in MDD) or anxiety disorders (8% in BD, 12% in MDD [Reference Franck, Bon, Dekerle, Plasse, Massoubre and Pommier32]). In addition, the proportion of patients working in mainstream environments was very low in the REHABase network [Reference Franck, Bon, Dekerle, Plasse, Massoubre and Pommier32] compared with employment rates in BD (40–60% [Reference Marwaha, Durrani and Singh60]). It can therefore be supposed that the patients with mood disorders referred to the centers for psychiatric rehabilitation had more severe psychiatric comorbidities and were more self-stigmatized than the average. The prevalence of elevated self-stigma in BPD was high, in line with other studies (mean IS = 2.45 [Reference Grambal, Prasko, Kamaradova, Latalova, Holubova and Marackova20]; mean IS = 2.37 [Reference Kamaradova, Latalova, Prasko, Kubinek, Vrbova and Mainerova23]). Self-stigma in ASD was more frequent than in a recent German study (mean IS = 1.93, 15.4% [Reference Bachmann, Höfer, Kamp-Becker, Küpper, Poustka and Roepke21]). This might be related to the levels of public stigma towards ASD in France [Reference Durand-Zaleski, Scott, Rouillon and Leboyer1]. Self-stigma should be more systematically investigated in patients with BPD or ASD [Reference Grambal, Prasko, Kamaradova, Latalova, Holubova and Marackova20,Reference Bachmann, Höfer, Kamp-Becker, Küpper, Poustka and Roepke21].

Few socio-demographic and illness-related variables significantly predicted the level of self-stigma in our sample. The correlations with female gender and older age at the time of admission concur with certain studies [61–63] but contradict others [Reference Grambal, Prasko, Kamaradova, Latalova, Holubova and Marackova20,Reference Pearl, Forgeard, Rifkin, Beard and Björgvinsson29]. According to some authors, tertiary education and employment could protect against self-stigma [Reference Brohan, Elgie, Sartorius and Thornicroft2,Reference Brohan, Gauci, Sartorius and Thornicroft3,Reference Krajewski, Burazeri and Brand61,Reference Livingston, Patel, Bryson, Hoong, Lal and Morrow62,Reference Evans-Lacko, Brohan, Mojtabai and Thornicroft64]. This was not the case in our sample, and this is consistent with other studies [Reference Howland, Levin, Blixen, Tatsuoka and Sajatovic59,Reference Sibitz, Amering, Unger, Seyringer, Bachmann and Schrank65]. The absence of a correlation between self-stigma, housing status and intimate relationships corresponds to the findings of most studies on self-stigma [Reference Dubreucq and Franck19]. Self-stigma was not associated with parenting status, in contrast to previous research [Reference Lacey, Paolini, Hanlon, Melville, Galletly and Campbell24]. Higher insight into illness significantly predicted the level of self-stigma, in accordance with several studies [Reference Schrank, Amering, Hay, Weber and Sibitz11,Reference Hasson-Ohayon, Ehrlich-Ben Or, Vahab, Amiaz, Weiser and Roe66]. A history of suicide attempt was associated with elevated self-stigma as found in other studies [Reference Yoo, Kim, Kim, Lee, Kang and Bae67,Reference Chang, Wu, Chen and Lin68]. As self-stigma moderates the relationship between insight into illness and depression, it can be supposed that recovery-oriented interventions targeting self-stigma reduction could protect against depression and suicidal ideation and should be further developed [Reference Lysaker, Roe and Yanos13,Reference Lysaker, Vohs, Hasson-Ohayon, Kukla, Wierwille and Dimaggio14]. Illness duration and the number of psychiatric hospitalizations also predicted self-stigma. This concurs with the findings of some studies [60 but contradicts others [Reference West, Yanos, Smith, Roe and Lysaker5,Reference Sibitz, Amering, Unger, Seyringer, Bachmann and Schrank65]. Age of onset did not predict self-stigma, as in the majority of previous studies [Reference West, Yanos, Smith, Roe and Lysaker5,Reference Howland, Levin, Blixen, Tatsuoka and Sajatovic59,Reference Sibitz, Amering, Unger, Seyringer, Bachmann and Schrank65]. Psychiatric diagnosis did not predict the level of self-stigma, which is consistent with a large number of studies [Reference Rüsch, Nordt, Kawohl, Brantschen, Bärtsch and Müller27,Reference Harris, Farchmin, Stull, Boyd, Schumacher and Drapalski28,Reference Sarısoy, Kaçar, Pazvantoğlu, Korkmaz, Öztürk and Akkaya58,Reference Evans-Lacko, Brohan, Mojtabai and Thornicroft64]. This contrasts with other studies, which found that self-stigma was higher in SZ [Reference Krajewski, Burazeri and Brand61,Reference Kao, Lien, Chang, Wang, Tzeng and Loh69], in MDD compared with BD [Reference Brohan, Gauci, Sartorius and Thornicroft3], or in BPD compared with other SMI [Reference Grambal, Prasko, Kamaradova, Latalova, Holubova and Marackova20,Reference Ociskova, Prasko, Kamaradova, Grambal and Sigmundova22,Reference Pearl, Forgeard, Rifkin, Beard and Björgvinsson29]. This study was the first to compare self-stigma in SMI and ASD. Elevated self-stigma was less frequent in ASD, but the mean self-stigma scores did not differ significantly from SMI. Considering the small number of articles on self-stigma in ASD, further research should investigate the relationships between public stigma, perceived stigma, experienced stigma, and self-stigma in ASD. The absence of correlation among neurocognition, social cognition, and self-stigma in our sample was unexpected, as cognitive impairments have been found to be negatively associated with self-stigma in previous studies [15–17,Reference Galderisi, Rossi, Rocca, Bertolino, Mucci and Bucci70]. Changes in cognition have been related to functional improvements [Reference Green, Horan and Lee71]. Further research should investigate whether improvements in neurocognition and social cognition during psychiatric rehabilitation lead to a reduction in self-stigma. Elevated self-stigma was negatively associated with wellbeing and satisfaction with interpersonal relationships. This concurs with several studies, self-stigma being associated with decreased wellbeing and life satisfaction [Reference Rüsch, Corrigan, Heekeren, Theodoridou, Dvorsky and Metzler72,Reference Pérez-Garín, Molero and Bos73]. Self-stigma was consistently negatively associated with QoL in a large body of literature (27 studies [Reference Dubreucq and Franck19]). A strong positive correlation was found between self-stigma and the early stages of personal recovery. This reflects the findings of several studies showing a negative association between self-stigma and personal recovery [Reference Oexle, Müller, Kawohl, Xu, Viering and Wyss10,Reference Hasson-Ohayon, Mashiach-Eizenberg, Elhasid, Yanos, Lysaker and Roe17] (15 studies [Reference Dubreucq and Franck19]). The associations between preserved insight into illness, elevated self-stigma, and the early stages of personal recovery in our sample consistently support many of the predictions of the “illness-identity model” [Reference Yanos, Roe, Markus and Lysaker6].

In short, self-stigma was highly prevalent in a large nonselected sample of people with SMI and ASD enrolled in psychiatric rehabilitation. The correlations between self-stigma, insight, previous suicide attempt, wellbeing, satisfaction with interpersonal relationships, and personal recovery indicate the need to further develop recovery-oriented interventions targeting self-stigma. The effectiveness of psychiatric rehabilitation on self-stigma and the potential mediating role of changes in self-stigma 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 nonselected 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.

Conflict of Interest

The authors declare no conflict of interests.

Acknowledgments

This work was funded by Auvergne-Rhône-Alpes and Nouvelle-Aquitaine regional health agencies. The authors thank Kim Barrett for editorial assistance; 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: C2RL, Limoges; C2RP, Bordeaux; C3R, Grenoble; CL3R, Lyon; CREATIV & URC Pierre Deniker, Poitiers; and REHALise, Saint-Etienne). The funding source played no role in the creation of the database or the analysis and interpretation of data.

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Table 1. Patient characteristics

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Table 2. Internalized stigma in psychiatric disorders in the study sample

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Table 3. Association between medical factors and quality of life with self-stigma in univariate logistic regression

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Table 4. Multivariate logistic regression summary (with stepwise selection)

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