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Research report
Perceived stigma among individuals with common mental disorders
Jordi Alonso a,b,⁎, Andrea Buron a,c, Sonia Rojas-Farreras a, Ron de Graaf d, Josep Mª Haro e,Giovanni de Girolamo f, Ronny Bruffaerts g, Viviane Kovess h,Herbert Matschinger i, Gemma Vilagut a,b
for the ESEMeD/MHEDEA 2000 Investigators 1
a Health Services Research Unit, Institut Municipal d'Investigació Mèdica, (IMIM-Hospital del Mar), Barcelona, Spainb CIBER en Epidemiología y Salud Pública (CIBERESP), Spainc Preventive Medicine and Public Health Training Unit IMAS-UPF-ASPB, Barcelona, Spaind Netherlands Institute of Mental Health and Addiction (Trimbos-Instituut), The Netherlandse Fundació Sant Joan de Déu (SJD-SSM), Sant Boi de Llobregat, Spainf IRCCS Centro S. Giovanni di Dio Fatebenefratelli, Brescia, Italyg Department of Psychiatry, University Hospital Gasthuisberg, Leuven, Belgiumh Fondation MGEN Pour La Santé Publique, Univesité Paris 5, Paris, Francei Department of Psychiatry, University of Leipzig, Germany
a r t i c l e i n f o
⁎ Corresponding author. Health Services Research UMar), PRBB, Doctor Aiguader, 88, 08003 Barcelona, Sp760; fax: +34 933 160 797.
Angermeyer; Sebastian Bernert, Ronny Bruffaerts,Giovanni de Girolamo; Ron de Graaf; Koen DemyttenaJosep Maria Haro; Steven J. Katz; Ronald C. Kessler;Pierre Lépine; Johan Ormel; and Gemma Vilagut.
Article history:Received 21 November 2008Received in revised form 9 February 2009Accepted 9 February 2009Available online 13 March 2009
Background: Severe mental disorders are associated with social distance from the generalpopulation, but there is lack of data on the stigma reported by individuals with commonmentaldisorders.Aims: To identify the correlates and the impact of stigma among individuals with commonmental disorders.Methods: Cross-sectional, household interview survey of 8796 representing the non-institutionalized adults of Belgium, France, Germany, Italy, the Netherlands and Spain. Twoperceived stigma questions (embarrassment and discrimination) were asked to respondentswith significant disability. Health-related quality of life measured by the SF-12, work andactivity limitation and social limitation were also assessed.Results: Among the 815 participants with a 12-month mental disorder and significant disability,14.8% had perceived stigma. Stigma was significantly associated with low education, beingmarried/living with someone and being unemployed. Perceived stigma was associated withdecreased quality of life (SF-12 PCS score−4.65; pb0.05), higher work and role limitation andhigher social limitation.Conclusion: Individuals with mental disorders are more likely to report stigma if they have lowereducation, are married, or are unemployed. Perceived stigma is associated with considerablydecrease in quality of life and role functioning. Health professionals and society at large must beaware of these findings, which suggest that fighting stigma should be a public health priority.
ordi Alonso; MatthiasTraolach S. Brugha;ere; Isabelle Gasquet;Viviane Kovess; Jean
All rights reserved.
1. Introduction
Mental disorders in Europe account for a high proportionof the total burden of illness (Wait and Harding, 2006). Inaddition, the general public seems to disapprove persons withmental illness more than persons with physical disabilities(Corrigan et al., 2000, 2003; Hinshaw and Cicchetti, 2000;
Perceived stigma was considered to be present when both embarrassmentand discrimination were reported (a little or higher frequency).
181J. Alonso et al. / Journal of Affective Disorders 118 (2009) 180–186
Rusch et al., 2005; Socall and Holtgraves, 1992). Stigma is animportant issue for those with mental disorders and somesuccessful programs have been launched (Siroux et al., 2008).
Only a few studies have evaluated stigma experiencesdirectly from the mentally ill, since most studies are generalpublic's surveys about their opinion of people with mentalillness (Munguía-Izquierdo et al., 2007; Sanai et al., 2008;Snyder, 2008). Discrimination is very frequently reported bymen with dual diagnoses of mental disorder and substanceabuse (Link et al., 1997) and individuals with a severe mentalillness (Corrigan et al., 2003). Male gender, belonging to anethnicminority, loweducation and socioeconomic status, prob-lems with employment or getting a job, being unmarried orseparated/divorced, as well as problems in friendships andsocial relationships, severity of the disease, perceived danger-ousness, and drug abuse, have been associated with stigma(Angermeyer, 2003; Corrigan et al., 2001, 2003; Dickerson et al.,2002; Gee et al., 2006; Link et al.,1997; Van Brakel, 2006;Wahl,1999). Also, stigma limits service use and is frequently asso-ciated with non-adherence to treatment (Angermeyer, 2003;Benbow, 2007; Ruschet al., 2005; Simon et al., 2004; Sirey et al.,2001; Van Brakel, 2006).
However, stigma among the mentally ill in a representa-tive sample of the general population of several countries hasnot been done yet. The present paper aimed to assess theassociation of self-perceived stigma and discrimination withquality of life, work and role limitation, and social functioning,among individuals with common mental disorders in Europe.
2. Methods
The methods of the European Study of the Epidemiology ofMental Disorders (ESEMeD) project relevant to this report havebeen described in detail elsewhere (Alonso et al., 2004). Briefly,it was a cross-sectional study in which computer-assistedinterview (CAPI) techniques were used to assess participantsat their homes. The target population was the non-institutio-nalized adult population aged 18 years or older of Belgium,France, Germany, Italy, the Netherlands and Spain—a total ofabout 213,000,000 Europeans. A stratified,multistage, clusteredarea, probability sample design was used.
In total, 8796 respondents were successfully administeredpart 2 of the assessment instrument, between January 2001and August 2003. The overall response rate was 61.2%, withthe highest rates in Spain (78.6%) and Italy (71.2%), and thelowest rates in France (45.9%) and Belgium (50.6%).
2.1. Mental disorders
The Composite International Diagnostic Interview (CIDI3.0), which was developed and adapted by the CoordinatingCommittee of the WHO World Mental Health (WMH) SurveyInitiative (Haro et al., 2006; Kessler and Ustun, 2004) was usedto collect information onmental disorders. Nine disorderswereanalyzed here: mood disorders (i.e., major depression episodeand dysthymia), anxiety disorders (i.e., social phobia, specificphobia, generalized anxiety disorder, agoraphobia with orwithout panic disorder, panic disorder, and post-traumaticstress disorder), and alcohol dependence/abuse. Respondentswere unaware of their final assessment of their mental healthstatus.
2.2. Perceived stigma
Two dimensions of perceived stigma due to healthproblems, namely embarrassment and perceived discrimina-tion (Link et al., 2004), were assessed in our study. We usedthese two items (Table 1) included in the ESEMeDversionof theWHODAS-II questionnaire, a measure of function and disabilitythat inquired information on limitation in life activities, pain,concentration, mobility, self care, family burden, social partici-pation and discrimination in the 30 days prior to the interview(Brandeis et al., 2000). We considered perceived stigma whenboth embarrassment and discrimination were present (i.e., ifthe respondent reported at least “a little” embarrassment and “alittle” discrimination). For interview efficiency, perceivedstigma questions were asked only to individuals reportinghaving at least “moderate” difficulties, in the 30 days previousto the interview, in one or more functioning areas: cognition,mobility, self-care and social activities. Only the individualswith 12-month mental disorders who were asked the stigmaquestions are analyzed in this paper (n=815).
2.3. Outcome variables
Quality of life, work/role limitation, and social limitationwere used to assess the impact of stigma. Subjective quality oflifewasmeasured through the12-itemshort formHealth Survey(Ware et al.,1996), which refers to the previous 4weeks and hastwo component summary scores: the physical (PCS), and themental (MCS). The PCS andMCS scaleswere scored usingnorm-based methods with the item weights from the general USpopulation anda linear t score transformationwith ameanof 50and a standard deviation of 10. Scores above 50 are better andthose below 50 are worse than the US population mean.
Work and role limitation in themonth prior to the interviewwas assessed by the WHODAS-II (Wright et al., 2008). AWorkLost Days (WLD) index was obtained as the weighted sum of:(Patrick and Guttmacher, 1983) (a) the number of days totallyunable to work or carry out normal activities in the priormonth; (Nelson et al., 1994) (b) one-half the number of days ofreduced work and activities; (Sartwell, 1960) (c) one-half thenumberof days of reducedquality or care inwork activities; and(d) One-quarter the number of days requiring extreme effort toperform at one's usual level. If this sum exceeded 30, it wasrecoded to equal 30 so that the sum had a range from 0 to 30.The scores were linearly transformed to a 0–100 range, tofacilitate interpretation.
182 J. Alonso et al. / Journal of Affective Disorders 118 (2009) 180–186
Days with social difficulties in the previous 30 days, wasassessed using a question of the WHODAS II (Buist-Bouwmanet al., 2008; Epping-Jordan andUstun, 2000). A social limitationindex was computed dividing the number of days with diffi-culties by 30 and multiplied by 100. People who did not reportany difficultieswere computed as 0 days. The range of the indexwas 0–100, the higher the number the more the sociallimitation.
Finally, interference with help seeking behaviour was alsoassessed. Respondents were asked whether they had delayedhelp-seeking for their mental health, had not sought profes-
Table 2Frequency of perceived stigma among individuals with mental disorders and disab
* Unweighted n, weighted proportions.a Those who had visited the health services for their mental health or those who hwere considered to be aware of suffering a mental disorder.
sional help or had quitted treatment because they wereconcerned either “about what people would think” or that“people could find out that they were in treatment” for theirmental health.
2.3.1. Other variablesSociodemographic (age, gender, education, marital status
and employment among others) and other variables werecollected. Chronic physical conditions in the previous12 months (a total of 17) were assessed using a standardisedlist.
ility (N=815) according to sociodemographic and other characteristics.⁎
ad not but reported that they “thought they might need professional help”,
Table 3Adjusted association (logistic regression) of sociodemographic and othervariables with perceived stigma among individuals with mental disordersand disability (N=815).
Only mental disorder(s)Yes 1 ref. 0.193Comorbid physical condition(s) 1.63 (0.78,3.42)
Awareness of mental disorder b
Yes 1 ref. 0.776No 1.1 (0.58,2.06)
a Reference category.b Those who had visited the health services for their mental health or those
who had not but reported that they “thought they might need professionalhelp”, were considered to be aware of suffering a mental disorder.
183J. Alonso et al. / Journal of Affective Disorders 118 (2009) 180–186
2.3.2. Statistical analysesIn addition to descriptive and bivariate analyses, a logistic
regression model was built to estimate the association (oddsratios) of sociodemographic and other variables with per-ceived stigma among the mentally ill.
To estimate the independent association of perceivedstigma with quality of life, work/role limitation and sociallimitation, a series of least-square multivariate linear regres-sion models were built with sociodemographic and othervariables as the independent variables. Non-standardisedregression coefficients indicate the adjusted difference inmean outcome scores between the categories while control-ling for all other variables.
Since our stigma questions referred to “any health problem”
and not specifically to mental disorders, we compared thereporting of stigma among individuals without physicalconditions (“pure mental disorders” group) with that ofindividuals with both,mental and physical conditions (“comor-bidity” group). Additionally, the prevalence of stigma amongindividuals in our sample (all of whom had mental disorders)was compared with the prevalence among individuals withonly chronic physical disorders and no mental disorders (notdescribed in this paper).We calculated the odds ratios (and95%confidence intervals) of reporting stigma among the twosamples.
All analyses employed weighted data to adjust for sampleselection probabilities as well for restoring representativity ofthe sample.Whenever the variable countrywas used, instead ofusingonecountryas reference, analyses employedeffect coding.Therefore country parameters are interpreted as deviationsfrom the grand mean (Hosmer and Lemeshow, 1989).
3. Results
A total of 1851 participants had a 12-monthmental disorder,of whom 815 (44.4%) had significant disability and wereadministered the two perceived stigma questions. Amongthose, 46.7% reported embarrassment and 18.0% reporteddiscrimination experiences, resulting in a 14.8% with perceivedstigma. Perceived stigmawasmore frequent among individualswith lower education (18.1% vs. 6.2%, p=0.002), and thosemarried or cohabiting (18.3% vs. 7.6% for the previouslymarriedand 9.0% of those never married, p=0.03) (Table 2). Althoughthere was some variation in the prevalence among the sixcountries, overall differences were not statistically significant.
When adjusting for all the study variables, perceived stigmawas associated with low education (having studied 12 years orless OR=2.48 [95% CI 1.04, 5.92] compared to more than12 years), marriage (being married or living with someoneOR=2.74 [95%CI 1.11, 6.76] compared tohavingbeenpreviouslymarried), unemployment (OR=5.26 compared to those work-ing) and “others” employment category, which included peoplenot working due to disability or invalidity (OR=3.87 [95% CI1.10, 13.6] compared to those working) (Table 3).
In the bivariate analysis, all individuals with mentaldisorders showed an important deterioration on their qualityof life, as indicated by the SF-12 PCS andMCS scores,10 ormorepoints below the general population mean. In addition,individuals with perceived stigma scored, on average, about 6additional points lower in thePCSandalmost5points less in theMCS than those without stigma. Similarly, the Work Lost Days
(WLD) index was almost 20 points higher among those withstigma, though not significant. Themean social limitation indexfor those with perceived stigma was 40.4, significantly higherthan those without stigma (10.2). No significant differencesamong thosewith andwithout perceived stigmawere found forinterference with seeking services(results not shown).
Multivariate analyses showed that stigma was signifi-cantly associated with lower (worse) SF-12 PCS scores
Fig. 1. Impact of stigma over quality of life, work limitation and social limitation.
184 J. Alonso et al. / Journal of Affective Disorders 118 (2009) 180–186
(−4.65; pb0.05), while the decrement in MCS (3.70) did notreach statistical significance. Perceived stigma was also asso-ciated to a significantly higher proportion of WLD (14.62;pb0.05) and of social limitation (28.09; pb0.001) (Fig. 1).
Perceived stigma was much more likely reported by indivi-dualswithmental disorders (the sample analyzed in this paper)than by respondentswith only chronic physical (but nomental)conditions (OR=3.80 [95% CI 2.24, 6.44]) (data not presented).
4. Discussion
Our results show that, among individuals with disabilityand mental disorders, perceived stigma is more frequentamong those with less education, those married, and thoseunemployed. The mentally ill with perceived stigma havesignificantly worse physical quality of life, more work/rolelimitation and more social limitation than the other indivi-duals with mental disorders (but no perceived stigma).Stigma is associated with additional burden among thosewith common mental disorders. To our knowledge these arethe first international, population-based results to assesssimultaneously associated factors and the impact of perceivedstigma among people with mental disorders. Our findingsindicate some personal and social factors associated withperceived stigma. And they suggest that it might be necessaryto systematically address it when evaluating individuals withcommon mental disorders.
4.1. Limitations of the study
These results should be interpreted taking into account ourstudy limitations. First, we measured perceived stigma usingonly two indicators: embarrassment and discrimination.Stigma is a complex construct and more complete specificmeasures have been developed (Link et al.,1989). Nevertheless,the two dimensions included in our measure of stigma arecommon to many studies and have been proposed as goodmarkers of stigma (Link et al., 2004). In addition we requiredthe presence of both traits for considering stigma to be present.This might have lowered our prevalence estimates, certainlysmaller thanprevious studies (Dinos et al., 2004; Peterson et al.,2007; Thornicroft et al., 2009; Wahl, 1999), although compareability is limited due to differences in the type of disordersconsidered as well as the methodology for assessing stigma.
Second, we did not ask specifically whether perceivedstigma was due to their mental disorders or to other healthconditions. But, although stigma was more frequent amongindividuals with both mental and physical conditions ascompared to those with only mental disorders, differenceswere neither large nor statistically significant. Moreover,compared with individuals outside of our sample who hadonly chronic physical conditions, perceived stigma was muchmore likely among those with mental disorders (thosestudied in our sample). This suggests that perceived stigmaanalyzed here can be considered in a great deal attributable tothe presence of mental disorders.
Third, for efficiency in the administration of our studyquestionnaire, only individuals with moderate to high levels ofdisability were asked the stigma questions. Therefore, morethan half of the individuals with mental disorders were notassessed about perceived stigma. It is likely that the formerindividuals have a higher level of stigma than those with lessdisability, since there is a relationship between illness severity,disability, and stigma (Gaebel et al., 2006). In such a case, wemay have overestimated the prevalence of stigma amongindividuals with mental disorders. Conversely, we may haveunderestimated the prevalence of stigma, by not includingschizophrenia and other severe mental disorders in our study,which are associated with a high degree of stigma (Corrigan etal., 2000;Dickersonet al., 2002;Dinos et al., 2004;HinshawandCicchetti, 2000; Link and Phelan, 2001). Therefore, our studywas not completely adequate to estimate the prevalence ofstigma among those with mental disorders. Since we requiredthe simultaneous presence of the two traits (embarrassmentand discrimination) for our definition of perceived stigma, ourestimation of the frequencyof stigma among thosewithmentaldisorders is most likely conservative.
Fourth, it is possible that stigma-related perceptions andexperiences are manifestation of symptoms of the mentaldisorder (e.g., depression makes people be more sensible toscorn and neglect) or they are associated to a more severedisorder (Gaebel et al., 2006). This could artificially inflate ourestimates of perceived stigma. However, it has been shown thatthe effects of stigma endure even when psychiatric symptomsand social functioning show decisive improvement. Thus theassociationbetween stigmaand symptomsandbetween stigmaand other outcomes cannot only be attributed to the effect ofsymptoms on stigma measures (Link et al., 1997). Moreover, ithas also been suggested a conceptual model where stigmamaylead to additional stress and worsening of the mental disorder,in a vicious cycle of stigmatization (Solans et al., 2008).
Fifth, a lowresponse ratewasobtained in somecountries (i.e.,France, Belgium and the Netherlands). Non-respondents tend tohavemore psychological problems than respondents. Therefore,the prevalence ofmental disorders is likely to be underestimatedin our study. Nevertheless, low participation rates should notaffect the analyses presented here. For instance, while theNetherlands had a marginally higher participation than Franceand Belgium, Dutch individuals with common mental disordershad a much lower probability of reporting stigma.
Finally, our data are cross-sectional in nature and it is notpossible to infer causality between perceived stigma and thehealth outcomes considered. Longitudinal studies are necessaryto provide stronger evidence in terms of temporal relationshipbetweenstigmaandhealth relatedqualityof life and functioning.
185J. Alonso et al. / Journal of Affective Disorders 118 (2009) 180–186
4.2. Correlates of perceived stigma
Consistent with previous studies, we found that perceivedstigma among people with mental disorders is related withlower education (Corrigan et al., 2003; Social Exclusion Unit,2004; Van Brakel, 2006; Wahl, 1999). There is evidence thatindividuals with mental illness report reduced educationalopportunities (Van Brakel, 2006) and stigma experiencesmakepeoplewithmental disorders less likely to apply for educationalopportunities (Wahl, 1999). Furthermore, it has been reportedthat children and young people are less tolerant of people withmental health problems than adults (Social Exclusion Unit,2004).Unemploymenthas alsobeenpreviouslyassociatedwithstigma (Angermeyer, 2003; Corrigan et al., 2003; Link et al.,1989;VanBrakel, 2006;Wahl,1999). Peoplewithmental illnessare prone to have problems in getting a job, be unemployed orlaid off due to stigma and discrimination (Link et al., 1989; VanBrakel, 2006;Wahl,1999). Both the general population and thepatients perceive that employers would discriminate againstmentally ill individuals (Link et al., 1989, 1997). Higherunemployment rates among people with stigma could be duenot only to discrimination from employers, but also becausepeople with perceived stigma are less likely to apply for jobopportunities (Wahl, 1999).
Finally, there was a non-significant higher probability ofperceiving stigma in France and Belgium, especially in com-parison to Germany, Spain and the Netherlands. Internationalvariation in stigma among individuals with schizophrenia hasalso been recently described (Thornicroft et al., 2009). Never-theless our results are inconclusive and more studies areneeded.
4.3. Consequences of perceived stigma
In our study perceived stigma was clearly associated withworse health-related quality of life and more work/rolelimitation. Previous studies have shown that life satisfaction isvery low for those who experience high levels of stigma(Angermeyer, 2003; Rosenfield, 1997). While the majority ofthe literature suggests that impact of stigma would be higherfor the emotional domains of health-related quality of life(Angermeyer, 2003; Dinos et al., 2004;Wahl,1999), we found amarginally higher effect on the physical component. The effectsize is between 0.3 and 0.4, a difference that can be consideredsmall to moderate (Kazis et al., 1989). And this is in addition toan already large quality of life impact attributable to theirmental disorders. Thus, perceived stigma significantly adds onthe quality of life toll associated with mental disorders.
Most previous studies concluded that stigma decreasesthe number and the quality of social relationships. Psychoso-cial disability is an important criterion for the definition ofmental illness severity (Gaebel et al., 2006) and therefore,suffering from stigma will increase the probability of a severedisorder. Similar to above, the cross-sectional design and thelack of specific retrospective information preclude to establisha causal relationship between social limitation and stigma.But it is very likely that other people discriminating thementally ill, the mentally ill being embarrassed to interactwith other people because of discrimination, self-stigma andthe psychosocial disability of these patients, all end upimpairing social relationships.
4.4. Implications
Our results have some important policy implications.Healthcare providers and policy makers should be aware thatpeople with mental disorders experience stigma and that thisnegatively affects many aspects of their lives. Increasingsociety's awareness of this reality and decreasing prejudicesespecially in the labour and educational areas should be apublic health priority, as it is to highlight successful outcomeswithin mental health stories and to reduce the nowadaysoverwhelmingly negative representation of mental illness inthe media (Benbow, 2007). Our results are also important forhealthcare professionals in the way that individually theycould help for example in the privacy and sensibility of thediagnosis notifying, explaining the significance of the dis-order, following all aspects of the patient, etc.
Also, some research implications should be mentioned.While we have assessed the importance of stigma amongpeople with mental disorder and explored possible risk factorsand effects of stigma, more research is needed to confirm ourresults and try to explain these relations. There is need forlongitudinal studies with focus on the evolution of stigma andhealth and social outcomes, as well as for qualitativeapproaches to examine inmore detail the correlations betweenstigma and these variables.
Role of funding sourceThe funding institutions (see Acknowledgements) had no further role in
study design; in the collection, analysis and interpretation of data; in thewriting of the report; and in the decision to submit the paper for publication.
Conflict of interestAll the authors of the manuscript Perceived stigma among individuals with
common mental disorders report no conflicts of interest.
Acknowledgements
The ESEMeD project (http://www.epremed.org) wasfunded by the European Commission (Contracts QLG5-1999-01042; SANCO2004123), thePiedmontRegion (Italy), FondodeInvestigación Sanitaria, Instituto de Salud Carlos III, Spain (FIS00/0028-02), Ministerio de Ciencia y Tecnología, Spain (SAF2000-158-CE), Departament de Salut, Generalitat de Catalunya,Spain, and other local agencies and by an unrestrictededucational grant from GlaxoSmithKline. ESEMeD is carriedout in conjunction with the World Health Organization WorldMental Health (WMH) Survey Initiative. We thank the WMHstaff for assistance with instrumentation, fieldwork, and dataanalysis. We deeply thank Mrs Carme Gasull for her editorialassistance. Finally, we sincerely appreciate the commentsmadeby anonymous reviewers of our paper.
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