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ENVIRONMENT AND SCHIZOPHRENIA

Stigmatization as an Environmental Risk in Schizophrenia: A User Perspective

Catherine van Zelst1,2

2Department of Psychiatry and Neuropsychology, South LimburgMental Health Research and Teaching Network, EURON,Maastricht University Medical Centre, 6200 MD Maastricht, TheNetherlands

Stigmatization represents a chronic negative interactionwith the environment that most people with a diagnosisof schizophrenia face on a regular basis. Different typesof stigmapublic stigma, self-stigma, and label avoidance

may each have detrimental effects. In the present article,the possible consequences of stigma on onset, course,and outcome of schizophrenia are reviewed. Stigmatizationmay be conceptualized as a modifiable environmental riskfactor that exerts its influence along a variety of differentpathways, not only after the illness has been formally diag-nosed but also before, on the basis of subtle behavioralexpressions of schizophrenia liability. Integrating stigma-coping strategies in treatment may represent a cost-effectiveway to reduce the risk of relapse and poor outcome occa-sioned by chronic exposure to stigma. In addition, signifi-cant gains in quality of life may result if all patients withschizophrenia routinely receive information about stigmaand are taught to use simple strategies to increase resiliencevis-a-vis adverse, stigmatizing environments.

Key words:stigmatization/discrimination/schizophrenia/psychosis/environment/affective symptoms

Introduction

Most individuals with a diagnosis of schizophrenia willbe confronted with some form of stigmatization.1,2 Stig-matization refers to a stereotyped set of negative atti-

tudes, incorrect beliefs, and fears about the diagnosisschizophrenia that impact on how this syndrome is actu-ally understood by others. It involves problems of knowl-edge (ignorance), attitudes (prejudice), and behavior(discrimination) and may be compounded by a scientifi-cally inaccurate emphasis on biogenetic models of illnesson the part of professionals.36 Different types of stigma

public stigma, self-stigma, and label avoidance7may haveprofoundly defeating consequences for the individual witha psychotic disorder.811 Ritsher and Phelan12 suggest thatthe harmful effects of stigma may work through the internalperceptions, beliefs, and emotions of the stigmatized per-son, even above and beyond the effects of direct discrimi-nation by others. Most of the research in the area of stigmais based on negative reactions faced by people with schizo-phrenia in studies on public attitudes or equivalent behav-ioral research. Research exploring the views of thoseexposed to stigma is less common. Although stigma is typ-

ically noted in professional guidelines, possible interven-tions are not proposed.13 Therefore, in the presentarticle, the consequences of stigma and their potentiallynegative impact on onset, course, and outcome of schizo-phrenia are examined not only from a scientific but alsofrom a user perspective.

Genetic Risk, Stigma, and Schizophrenia

Given the fact that the genetic vulnerability to schizo-phrenia is likely much more widely distributed thanthe illness itself, environmental factors impacting on vul-

nerable individuals may be invoked in order to explainthe fact that not all vulnerable people make the transitionto psychotic disorder.14 What has received much lessattention is the fact that some of these environmentalfactors may be provoked by the behavioral expressionof genetic vulnerability itself, a phenomenon known asgene-environment correlation or rGE.14 In some instancesof rGE, the observed environmental risk factor merely rep-resents a genetic epiphenomenon and is of no causal con-sequence itself. Sometimes, however, the environmentalfactor in rGE may still be of causal consequence. This lat-ter scenario may be particularly relevant in the prodromalphase of the illness. According to the model described in

this article and depicted in figure 1, some of the causal en-vironmental risks for schizophrenia in the realm of socialadversity represent structural negative interpersonal inter-actions in response to the behavioral expression of geneticrisk. For example, a person may become stigmatized onthe basis of odd speech or paranoid reactions that arethe expression of schizophrenia liability. Although inthis case stigmatization does not occur on the basis of a for-mal diagnosis, structural discrimination may neverthelessoccur if the behavior is perceived, similar to schizophrenia,

1To whom correspondence should be addressed; tel: 31-43-3688666, fax: 31-43-3688689, e-mail: c.vanzelst@sp.unimaas.nl.

Schizophrenia Bulletinvol. 35 no. 2 pp. 293296, 2009doi:10.1093/schbul/sbn184

The Author 2009. Published by Oxford University Press on behalf of the Maryland Psychiatric Research Center. All rights reserved.For permissions, please email: journals.permissions@oxfordjournals.org.

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as different, out of the ordinary or strange. To the degreethat stigma is a form of structural discrimination, the termmay be of use in highlighting these early processes associ-ated with schizophrenia liability and form a continuumwith the stigma observed after illness onset and its negativeconsequences on illness course (figure 1). The centraltheme is that stigmatization/structural discriminationcan be perceived as a component of social adversity, which

can lead to social defeat and shape specific negative beliefsabout the self and about others.15 Presenting the negativeinteractions induced by liability and illness and their im-pact on, respectively, onset and course in 1 model mayhelp focus attention on these issues and create more re-search culminating in risk-reducing strategies.

Stigma and Onset of Schizophrenia

Schizophrenia and other psychotic disorders are charac-terized by alterations in behavioral and cognitive devel-opment and, closer to the onset of the first psychoticepisode, by an at-risk mental state or prodromal phaseof illness in which a noticeable change from premorbidfunctioning occurs.16 Different types of prodrome havebeen identified, and patients may progress from 1 typeto another.17 For example, in 1 type, psychotic symptomsmay appear intermittently but briefly. Subsequently, sub-clinical psychotic symptoms may persist for longer peri-ods, and individuals may at some stage meet InternationalClassification of Diseases, Tenth Revision, criteria forschizotypal personality disorder. Another type consistsof neurotic symptoms, which commonly start before pos-itive symptoms; individuals may meet criteria for depres-sion or anxiety disorders.17 The question rises to what

degree subtle negative interpersonal interactions inducedby the changing behavior of individuals with an at-riskmental state may contribute to the risk of transition toa psychotic disorder. In other words, is it possible thatsubclinical psychotic experiences or other behavioralexpressions of risk provoke stigmatizing reactions thatfurther fuel the underlying psychotic process, increasingthe risk for transition to a clinical psychotic episode?

There is face validity to the notion that people display-ing behavioral expression of schizophrenia liability,whether it be in the form of a prodrome, in the contextof schizotypal low-grade psychotic experiences or even

in the form of subtle developmental behavioral altera-tions long before illness onset,18 are likely to experiencestructural discrimination/stigmatization to a degree thatit becomes relevant in terms of altering risk for transitionto psychotic disorder. Although research is needed to ad-dress this question before firm conclusions can be drawnand interventions can be developed or adjusted, there is

nevertheless some support for this notion in the litera-ture. For example, Janssen et al19 examined whether per-ceived discrimination on the basis of skin color orethnicity, gender, age, appearance, disability, or sexualorientation was prospectively associated with onset ofpsychotic symptoms. The results indicated that perceiveddiscrimination predicted, in a dose-response fashion, in-cident delusional ideation. One way of explaining thesefindings is to hypothesize that subtle changes in the be-havior of individuals with early expression of psychosisliability give rise to negative social interactions and struc-tural discrimination that in turn increase the risk for

delusional ideation, eg, by facilitating a paranoid attribu-tional style20 and/or by sensitization (and/or increasedbaseline activity) of the mesolimbic dopamine system.21

A prediction from this model is that in populations whosuffer structural discrimination, the proportion of indi-viduals with vulnerability for schizophrenia that actuallymakes the transition to psychotic disorder should behigher than in nonstigmatized populations. Recentwork showing that the observed increased risk for schizo-phrenia in ethnic minority groups is contingent on thelevel of associated discrimination these groups are facingis compatible with this notion.22

Stigma and Illness Course

Course and Outcome

Although traditional follow-up studies of cohorts ofpatients to date have not included measures of stigmaas a course modifier, there are nevertheless several reasonsto assume that a strong association likely exists. Stigma-tization may lead to negative discrimination, which inturn leads to numerous disadvantages in access to care,poor health service, and frequent life events that can dam-age self-esteem.23 Stigmatization represents a chronic

stressor and therefore, given evidence that stress triggersepisodes of schizophrenia,24,25 may act as a modifier of ill-ness course. For example, there is some evidence thatsocial stressors such as stigmatizing interactions andvictimization can exacerbate symptoms and impact onsocial functioning.26,27 Furthermore, stigmatization, inthe sense of label avoidance, can cause a delay in help-or treatment-seeking behavior. In particular, the threatof social disapproval or diminished self-esteem that ac-companies the label may account for underuse of serv-ices.28 In addition, prejudice and discrimination relatedto schizophrenia have been observed to result in poor

Genes / Environment /Genes x Environment

Illness onset Illness course

StigmaStigma

Behaviouralalterations

(causal influence) (causal influence)

Fig. 1.Extended Model of Stigma Taking Into Account StigmaInduced by Expression of Both Illness and Behavioral AlterationsAssociated With Illness Liability.

C. van Zelst

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treatment compliance.29 In a study about internalizedstigma, Ritsher and Phelan12 found that alienation pre-dicted depressive symptoms and reduced self-esteem, sug-gesting that it may be very difficult for individuals toescape, without assistance, a vicious circle of low self-es-teem and alienation negatively impacting on each other.12

Awareness of illness may result in better functional out-

come, but if awareness is accompanied by acceptance ofstigmatizing beliefs, greater social dysfunction, lesshope, and lower self-esteem become more likely.30

Psychopathology and Quality of Life

Stigma leads to negative psychological outcomes amongthe mentally ill, including lowered self-esteem,12,31 dimin-ished self-efficacy,31 and more depressive symptoms.12,31

In a qualitative study by Dinos et al,9 the most com-mon consequences of feelings of stigma revolved aroundanger, depression, fear, anxiety, feelings of isolation,

guilt, embarrassment, and prevention from recovery oravoidance of help seeking. Around 1 in 3 patients witha diagnosis of schizophrenia has a social anxiety disorder,and it has been suggested that stigma may be closely re-lated to social anxiety in schizophrenia. Thus, presence ofsocial anxiety was predicted by greater experience ofshame related to the psychotic diagnosis.32 This findingis highly relevant, given that higher levels of anxiety areassociated with more hallucinations, withdrawal, depres-sion, hopelessness, better insight, and poorer functionand outcome.33,34 Finally, there is evidence that prejudiceand discrimination related to schizophrenia result in anincreased probability of misuse of alcohol and drugs.29

Stigmatization can have detrimental consequences forboth objective and subjective quality of life (QOL). At-tributing ones problems to a mental illness is associatedwith reduced subjective QOL among persons with schizo-phrenia, much of which may be mediated by perceivedstigma and lower self-esteem.35,36 Persons with mentalhealth problems are often socially rejected, which canhave negative consequences for their well-being in generaland their self-esteem in particular.37 Anxiety disordersmay impose an additional burden to patients with schizo-phrenia, resulting in further decline in their subjectiveQOL.38

Interventions for Modifiable Risks?

The data discussed above suggest that stigma may be seenin part as a modifiable risk factor for onset and persis-tence of psychosis; individual treatments may be devel-oped to promote resilience and help individuals copebetter. These interventions may not only be relevant forcoping with stigma after illness onset but also before, ifindividuals show subtle alterations in behavior associatedwith schizophrenia liability. Although such interventionsremain to be developed, the literature suggests a few simple

guidelines that may be generally applicable. First, it is use-ful to differentiate between negative symptoms, depres-sion, anxiety, and the consequences of stigmatization.For example, social isolation can be the result of all theabove. Knowledge about (the consequences of) stigmati-zation is essential in understanding the coping strategiespeople with schizophrenia or other psychotic disorders ap-

ply. Conveying such knowledge to professionals duringtraining and to patients and relatives during psychoeduca-tion would be a useful first step.39 Second, several studieshave shown that the negative impact of stigma is greater ifindividuals use avoidant and isolating coping styles in theface of stigma.11,4044 This suggests that induction of moreactive coping styles and sharing of experiences, possibly inthe context of peer support,45 may be the ingredients oftailored treatments. Another important way of approach-ing stigma reduction is to offer ways of integration andrecovery, eg, through paid employment, which has beenobserved to reduce stigma.46

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