Destigmatising schizophrenia: does changing terminology reduce negative attitudes?

AIMS AND METHOD

Health promotion campaigns using current terminology have hadlimited success in reducing stigma to schizophrenia. Terminologyand subgroups based on historical precedent, clinical experienceand psychosocial research have been developed to provide analternative to existing terminology, and the attitudes to schizophreniaand alternative terminology of a sample of medical students(n=241) were compared.

RESULTS

Overall attitudes were significantly less negative with thealternatives. The students were less negative about the potentialfor recovery in relation to all the subgroups than for schizophrenia.Concerns about dangerousness were also less prominent withthe exception of the drug-related group.

CLINICAL IMPLICATIONS

Subgroups and alternative terminology should be further exploredin programmes to destigmatise schizophrenia.

Introduction

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Introduction

Antipsychotic medication and psychosocial interventions havebeen found to substantially improve the prospect of recoveryin schizophrenia for many. However, a major impediment to thisis social exclusion by the general population (Kingdon et al, 2006).Health promotion campaigns have had marginal impact on this (Crisp et al, 2004) and concerns about the dangerousness ofpeople with schizophrenia to society have, if anything, hardened(National Statistics, 2003). This is not simply caused by lackof knowledge as campaigns to promote a biological model ofschizophrenia have been successful in ‘increasing thepublic’s tendency to endorse biological causes’(Angermeyer & Matschinger, 2005). Paradoxically, however,such campaigns may have the effect of increasing social distancingby the general population from people with schizophrenia (Angermeyer & Matschinger, 2005).

An alternative approach is to associate schizophrenia with evidencefrom psychosocial research which has found that trauma (Read et al, 2003), hallucinogenic drug use (Hall, 2006) and stress-sensitivity (Myin-Germeys et al, 2005) are significant risk factors. Approachesusing cognitive therapy have found such associations valuablein directing formulation-based therapeutic interventions (Kingdon & Turkington, 2005).Using such associations has also proved meaningful and moreacceptable to service users and carers who dislike the veryterm ‘schizophrenia’ (Kingdon et al, 2008) andare proposing alternatives (Teskey, 2006). Renaming schizophreniais controversial and concern has been expressed that it wouldnot address the core problem that is ‘the public’signorance and fear’ (Lieberman & First, 2007). Nevertheless,attention to naming cannot be dismissed - the public relations industry devotes substantial resources to the importance ofpresentation of services and products (Kingdon et al, 2007).

Describing more precisely Bleuler’s ‘group of schizophrenias’(Bleuler, 1911) would allow research, training and terminologyto be tailored to each of them. Kraepelin (1919) made an attemptto do this - he famously delineated manic depressive insanityfrom dementia praecox but also differentiated it from paranoidstates where behaviour was only abnormal in so far as it wasthe outcome of delusions. He also distinguished dementia praecoxfrom hysteria but then reclaimed those in whom hallucinations were persistent as he believed this gave ‘decisive evidencefor dementia praecox’. Schneider’s emphasis ondefining schizophrenia based on the nature of symptoms ratherthan their content (Schneider, 1959) initially led to a tighterdefinition of schizophrenia. However, first-rank symptoms haveproved to be less specific than initially hoped (Carpenter et al, 1973)- for example, they have been demonstrated to occur in associationwith trauma (Ross & Joshi, 1992) and in individuals whoseinitial psychotic experience was directly from the effectsof stimulant and hallucinogenic drugs. The inclusion of thisgroup under the schizophrenia rubric became of increasing importance from the 1960s onwards, leading to a substantial broadeningof this diagnostic category.

Thus, a combination of clinical observation, psychosocial researchand historical precedent has contributed to the delineationof four possible subgroups of schizophrenia. Kraepelin’sdementia praecox has survived in classification systems asdisorganised schizophrenia (DSM-IV), nuclear schizophreniaand hebephrenia. This has been refined further as the ‘deficitstate’ (Kirkpatrick et al, 2001), renamed for use withpatients as ‘stress-sensitivity psychosis’. Kraepelin’sinclusion of ‘hallucinating hysteria’ in dementiapraecox has been reversed and, reinforced by the evidence ofchildhood trauma as a factor in some - particularly female- patients, has become ‘traumatic psychosis’. Paranoidstates, variously described as late-onset paranoia, paranoid schizophrenia and delusional disorder - where systematiseddelusions develop in mature individuals experiencing stressfulcircumstances - has led to a revival of Wernicke’s term‘anxiety psychosis’ (Healy, 2002). Finally, ‘drug-relatedpsychosis’ which did not exist when ‘the group ofschizophrenia’s’ was originally described, is recognisedin its own right.

These terms have been found to be acceptable to both patientsand clinical staff (Kingdon et al, 2008) and this study wasdeveloped to explore whether they might be less stigmatisingthan the term schizophrenia itself. Medical students were recruitedas being readily accessible to the researchers and able to readily comprehend the requirements of the study. Another reason wasthat doctors have a seminal role in combating stigmatisationbut their attitudes to psychiatry (Rajagopal et al, 2004)and people with mental health problems (Byrne, 1999) remainquite negative, which may affect their response to patients’physical and psychological care (Thornicroft, 2006). We soughtto test the hypothesis that the use of terminology based onpsychosocial subgroups would lead to differences between thesegroups and schizophrenia, and that negative attitudes in respondents would be reduced.

Method

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Method

Medical students from the University of Southampton attendinglectures about schizophrenia in their 2nd and 3rd years in2005 were asked to complete the section of a questionnairerelating to schizophrenia which had been used to monitor theRoyal College of Psychiatrists’ ‘Every Family in the Land’ campaign (Crisp et al, 2000). The questionnaireasked the respondent to ‘think of a person with schizophrenia’and then rate them on a five-point scale on being dangerousto others: unpredictable; hard to talk to; have only themselvesto blame; would improve if given treatment; feel the way weall do at times; will eventually recover fully and could pullthemselves together if they wanted to. (Formal psychometricproperties of the scale have not been published. Its validitycould be said to have been established through the consensusprocess used in its development by the campaign.)

The students were also given brief descriptions of the psychosocial subgroups (Appendix) and asked to rate the individual groupsagainst the same characteristics. Respondents were regardedas having a ‘negative opinion’ if they endorsedeither of the two points on the five-point scale on the ‘negative’side of its mid-point.

Data measured on a continuous scale were presented with mean,standard deviation and 95% confidence intervals. Normally distributedcontinuous data were analysed using one-way analysis of variance(ANOVA) and t-tests. Where data was skewed and non-normallydistributed, non-parametric techniques (Kruskal-Wallis testand Mann-Whitney U-test) were applied. Categorical data werepresented in percentages and association between categoricalvariables was assessed with the use of chi-squared test andwhere expected frequency were below five then the Fisher’sexact test was used. Statistical significant was assessed ifP<0.05 and all analysis was conducted with the use of astatistical software SPSS version 14 for Windows.

Results

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Results

There were 241 medical students (66%) that took part in thesurvey from a possible 365 (the total number of 2nd and 3rdyear students who could have attended the lectures); 16 questionnaireshad missing data (in nine cases only the questionnaire on schizophreniawas completed). There were 160 females (66.4%); 79 students(32.8%) were less than 20 years old, 153 were between 20 and30 years old (63.5%), and 8 were between 30 and 40 years old(3.3%); 178 were White (73.9%); 58 reported (24.1%) that theyhad known someone with schizophrenia prior to the survey. Incomparison with previous studies using the same instrumentin the general population (Crisp et al, 2004) and psychiatrists(Kingdon et al, 2004), the students’ attitudes were intermediate (Table 1).

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Table 1. Respondents holding negative opinions about schizophrenia

The distribution of student attitudes towards schizophreniaand the subgroups markedly differed (Fig. 1). For schizophrenia,the distribution was normal. The drug-related group was similarbut flattened and shifted towards higher values, whereas theother groups had a skewed distribution towards a lack of negativeattitudes.

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Fig. 1. Distribution of negative attitudes.

Gender, ethnic group and age did not affect negative attitudes.The total negative attitude score was significantly greatertowards schizophrenia than the subgroups overall (P<0.023).These also differentiated between schizophrenia and the individualsubgroups with the exception of the trauma group. The sensitivity(P<0.001) and anxiety psychosis (P<0.001) subgroups wereviewed more favourably, but the drug-related group was perceivedmore negatively (P<0.001). There were also significant differencesin scores between schizophrenia and the subgroups on individualitems (Table 2): 53% of respondents rated individuals withdrug-induced psychosis as dangerous to others, which is significantlyhigher than for the other groups (Fig. 2). Furthermore, 35%of the respondents thought that individuals with schizophreniawould never recover, which was higher than for any of the subgroups.

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Table 2. Negative attitudes to schizophrenia and subgroups

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Fig. 2. Negative opinions of medical students to schizophrenia and psychosocial subgroups.

Conclusions

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Conclusions

Use of psychosocial categories and terminology significantlyreduced negative perceptions of medical students about peoplewho comprise the group of schizophrenias. Most students exhibitedsome negative views towards schizophrenia. This was less towardsthe subgroups although a residual level of negative attitudesremained. The exception was the drug-related group where mostheld at least some negative views. There was concern about dangerousness and unpredictability with individuals who had misused hallucinogenicdrugs and, as this is a major risk factor for aggression whereit is associated with schizophrenia (Walsh et al, 2002), thismay to some extent be justified. Overall, attitudes were substantiallyimproved across most of the domains and in particular towardsthe possibility of recovery, even for the drug-related group.Evidence supporting the risk factors used to define the groupsis substantial but there has been very limited research intodifferentiation between these individual groups in relationto prognosis, etc. There also needs to be debate about whetherthese are the most appropriate terms to use. For example, inresponse to a formal request from a carer organisation, theJapanese Society of Psychiatry and Neurology recently adoptedthe term ‘integration disorder’ for schizophrenia(Sato, 2006). Changing names of conditions has limitationsin reducing stigma but there are few advocates, especiallyamong patients themselves, for changing back from, for instancecerebral palsy, learning disability and bipolar disorder tospastic, retard or manic depressive.

The study does have significant limitations. As an ‘intervention’to change attitudes, a randomised controlled approach wouldbe more rigorous: the terms were not presented in a randomised way and this might have influenced the outcome. Also, as withmany such health promotion studies, this investigation hasbeen into declared attitudes and further work is needed tosee if this is reflected in behaviour change and in the widerpopulation where attitudes are more negative (Crisp, 2004)than in medical students.

Appendix

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Appendix

The person would typically describe their experience in thefollowing way.

Drug-related psychosis

‘My problems started after I had taken speed (amphetamines),LSD, cocaine or a lot of cannabis. After that I started toget some problems and received treatment. The problems continuedor came back after settling after the first time this happened.Eventually these problems were happening even when I did nottake drugs.’

Anxiety psychosis

‘When I first received treatment for my problems, I hadbeen having some hassle, stress, and so on, but had becomeconvinced that there was a particular reason behind it all.Unfortunately, other people did not agree with me.’

Traumatic psychosis

‘My problems go back quite a way - maybe even as far asmy childhood or soon after - and seem to have something todo with some very unpleasant experiences that I had. Now Iseem to get unpleasant voices and maybe also visions - sometimesto do with these experiences.’

Stress-sensitivity psychosis

‘My problems began over a period of a few months or evena year or two. I became quite sensitive to stress which graduallyled to interference with what I was doing. This led to increasingconfusion and worry and eventually I received treatment. Itwas or has been difficult to get going again properly - howeverhard I try.’

References

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