Comparative study of experienced and anticipated stigma in Serbia and the world

Abstract

Aim: The presented study is part of the International Study of Discrimination and Stigma Outcomes (INDIGO) conducted in 28 countries. The aim of this study was to compare the degree of experienced and anticipated stigma of patients with schizophrenia in Serbia with world results.

Method: The Discrimination and Stigma Scale (DISC) was applied in individual interviews. The sample comprised 732 subjects of the main study and 50 subjects from Serbia.

Results: The amount of negative experienced discrimination in Serbia is the same as in other participating countries. The Serbian sample shows more negative discrimination in intimate relationships, personal safety and general harm due to the diagnosis, but more positive discrimination within the family, privileges during treatment of somatic illnesses, and benefits enjoyed in social and retirement insurance. The Serbian sample shows less anticipated discrimination in looking for a close relationship and in stopping self from applying for work. The results show that socio-demographic variables could not predict negative experienced and anticipated discrimination, while those same variables enable the prediction of 34% of positive discrimination.

Conclusion: Compared to other investigated countries, stigmatization processes for persons with schizophrenia do not differ considerably in Serbia, which justifies the implementation of unique anti-stigma programmes and joint upgrading of legal regulations.

Keywords

stigmatization schizophrenia INDIGO project

Introduction

Persons with schizophrenia are probably the most stigmatized mental patients. The effects of stigma and discrimination function almost as a second illness in several ways, not only in interpersonal relationships but also in social roles and at the social construct level. These experiences create an important barrier to a patient’s clinical improvement and mental health, restricting opportunities and lowering self-esteem. In 1996, the World Psychiatric Association began an international programme to fight stigma and discrimination caused by schizophrenia – one of the most severe mental illnesses. It was clearly stated that stigma causes a spiral of alienation and discrimination, leading to social isolation, work incompetence, alcohol and drug abuse, homelessness and long-term hospitalization, altogether reducing chances for recovery.

In March 2003, the National Mental Health Commission was established in the Ministry of Health of the Republic of Serbia, with one of its basic tasks being to work on problems of the discrimination of persons suffering from mental disorders. Years of stress in Serbia and in the entire surrounding region have led to increased development of mental and behavioural disorders. Institute of Mental Health data show a 13.5% increase of mental disorders between 1999 and 2002, now ranking them second among public health problems, after cerebrovascular and cardiovascular diseases (Lečić Toševski et al., 2005).

Numerous investigations about social attitudes toward Mental illnesses in developed Western countries have been implemented (Angermeyer and Matschinger, 2003; Byrne, 2001; Hasui et al., 2000). Developed countries are characterized by high income, ageing population, immigration, high educational level, developed infrastructure (services), mobility, flexibility, lifelong learning and upgrading, urbanization and individualism, with reduction of the family role and increased responsibilities of social welfare institutions. Apparently, certain characteristics of modern society upgrade, while others downgrade quality of life, mental health and attitude toward psychiatric patients. The advantage of these countries is that they began to implement anti-stigma programmes earlier and have developed healthcare services, legal and social system institutions and legislation, already showing the first results of fighting stigma.

Research on the level of information and attitude of the general population and special groups toward persons suffering from mental disorders have been implemented in undeveloped countries (Gureje et al., 2005; Kadri et al., 2004; Thara and Srinivasan, 2000). The lack of education, urban environments, female gender, healthcare and social welfare institutions increase stigma and the psychosocial problems of mental patients and their families.

Stigmatization has been much less investigated in countries in transition, with no systematic research in Serbia. Attitudes toward mental diseases were compared in a group of 45 individuals specializing in psychiatry and 36 specializing in internal medicine. Groups were tested using the Opinions about Mental Illness questionnaire (Struening and Cohen, 1963) and the Eysenck Personality Questionnaire (Eysenck and Eysenck, 1965). Results indicated no correlation between personality traits and attitudes toward mentally ill persons, and that, compared to doctors of other specialties, individuals specializing in psychiatry less frequently saw patients as inferior or threatening (Pejović-Milovančević et al., 2007).

Generally, research on stigma and mental illness has had several limitations: few connections were made with clinical practice or health policy, and it has been of a largely descriptive nature concerning surveys of public attitudes investigating what people would do in imaginary situations. It was assumed that statements (knowledge, attitudes, behavioural intentions) were related to behaviour, without directly evaluating the behaviour. Studies mostly focused on examining hypothetical situations; they were taken out of context, devoid of emotions, studying stigmatization indirectly instead of directly. Systematic assessments of experiences of mentally ill persons in different parts of the world were few, and offered no clear answers to the question of what needs to be done to reduce social rejection (Thornicroft et al., 2009).

Research in Serbia was implemented in 2009 using International Study of Discrimination and Stigma Outcomes (INDIGO) project methodology, which had been implemented in 28 world countries. The aim of this paper was to examine the degree and directions of experienced and anticipated discrimination and their mutual relations, as reported by persons diagnosed with schizophrenia. The intention was to compare data obtained in Serbia with the results of the main study. The aim was to determine any potential differences and set new goals for future studies in Serbia.

Method

Sample

The main study examined 732 persons suffering from schizophrenia and another 50 patients from Serbia treated at two psychiatric hospitals. Subjects in the main study and those from Serbia were diagnosed, by receiving psychiatrists, as persons with schizophrenic disorders according to DSM IV and ICD X classifications. Table 1 presents the demographic and clinical characteristics of subjects from Serbia and the world.

Table 1.

Socio-demographic and clinical characteristics (n = 50¹)

Variable	Category	Serbian study	Main study
Age	M (SD)	43.48 (9.69)	39.2 (11.32)
Gender	Male	56%	62%
	Female	44%	38%
Years of education	M (SD)	13.14 (2.30)	12.61 (3.35)
Currently employed	Yes	24%	29%
	No	76%	70%
Years since first contact with mental health services	M (SD)	24.38 (7.30)	14.32 (9.65)
Main type of mental healthcare	Inpatient	42%	21%
	Outpatient	4%	53%
	Day care	54%	17%
Compulsory treatment ever	Yes	42%	55%
	No	54%	45%
Knows the diagnosis	Yes	68%	83%
	No	32%	16%
Agree with diagnosis of schizophrenia	Agree	44%	59%
	Disagree	56%	14%
	No attitude	0%	19%

Data are mean (SD) or number (%). Figures do not add to total 50 and percentages do not add to total 100 because of missing responses

The Serbian sample was first compared with average values of other participating countries on socio-demographic variables. One sample t-test showed statistically significant differences between the Serbian sample and average values of other participating countries on mean age of participants (t₄₉ = 3.12, p < 0.01), which was higher in Serbia, the mean age at which people ask for help (t₄₉ = 9.74, p < 0.01), also higher in Serbia, but with no significant differences for years of education (t₄₉ = 1.63, p > 0.05) (Table 1). The χ² test showed that the Serbian sample did not significantly differ from the world mean for distribution of employment (χ²₁ = 0.73, p > 0.05) or forced hospitalization (χ²₁ = 1.64, p > 0.05), but did differ for distribution of knowing the diagnosis (χ²₁ = 8.72, p < 0.01) (Table 1).

More world patients thought that they knew the diagnosis, regardless of whether they actually had real information or vague and pseudo-comforting information about the nature of their illness. This is an interesting fact, probably very well reflecting the practice of not obliging the psychiatrist, so that he mostly did not give his patient true information about the nature of the illness and treatment plan. Perhaps this is also why most of the subjects did not agree with the diagnosis they were told, while a significantly larger number of subjects in the worldwide study knew their diagnosis and agreed with it.

Instrument

The Discrimination and Stigma Scale (DISC-10) was used, constructed and validated within the INDIGO international project. By double-blind translation, items were translated from English into Serbian and approved by the investigation team. The scale was implemented using interviews, enabling provision of not only the quantity, but also high-quality data about the way persons with diagnosed mental illness experienced themselves and the reactions of their environment.

The scale contains 45 items in total, the first nine relating to demographic data. It is divided into two parts: part one explores experienced discrimination (positive – benefits due to mental illness, and negative – disadvantages because of the diagnosis), while part two deals with the anticipated discrimination (the extent to which patients change their plans, intentions and behaviour because they expect negative stigmatization).

Result analysis produces three scores. The first score indicates total positive experienced discrimination, obtained by adding up scores on positive scales (slight, moderate or strong advantage); the second indicates the total negative experienced discrimination and is calculated in the same way; the third is obtained based on items of anticipated discrimination (not at all, a little, moderately and a lot), assessing how the individual has stopped himself or herself from applying for a job, looking for a close relationship and undertaking other personally important activities, or has concealed the diagnosis.

Results

Differences between the Serbian sample and average values of the other participating countries on all experienced discrimination situations used in a questionnaire were tested. Namely, differences in the distribution of answers for all individual questions were tested, whether participants experienced negative discrimination, no discrimination, or positive discrimination.

The χ² test showed that the Serbian sample significantly differed from the world mean on several situations (Table 2). A comparison of the results shows that the Serbian subjects assessed negative aspects of stigmatization with higher marks than subjects in other countries for the following areas: general disadvantages encountered due to their diagnosis, difficulties in maintaining intimate and sexual relationships, and feeling insecure in public.

Table 2.

Responses for experienced discrimination in Serbia and other countries (results from the main study in brackets)

Item	Disadvantage	No different treatment	Advantage	Missing	χ 2	df	p
Making or keeping friends	38 (47)	50 (43)	8 (7)	4 (3)	41.19	2	0.000
Intimate or sexual relationships	42 (27)	36 (46)	4 (5)	18 (21)	8.61	2	0.013
By your family	24 (43)	20 (32)	52 (24)	4 (1)	1204.5	2	0.000
Using public transport	4 (10)	92 (73)	2 (6)	2 (11)	30.07	2	0.000
Getting welfare benefits	2 (10)	28 (49)	40 (18)	30 (24)	104.07	2	0.000
Voting in elections	4 (3)	90 (80)	2 (1)	4 (16)	36.81	2	0.000
In social life	16 (15)	68 (66)	6 (4)	0 (16)	7.17	2	0.028
Arranging payment for medical care	10 (6)	64 (50)	26 (12)	0 (32)	130.93	2	0.000
Physical health problems	8 (15)	66 (69)	22 (8)	4 (7)	22.66	2	0.000
Personal safety or security	36 (26)	54 (61)	2 (1)	8 (11)	55.50	2	0.000
In starting a family or having children	18 (20)	36 (27)	4 (2)	0 (48)	16.54	2	0.000
Being able to act as a parent	10 (12)	16 (15)	2 (1)	0 (70)	46.80	2	0.000
Advantage to have schizophrenia diagnosis	68 (49)	20 (16)	12 (26)	0 (7)	308.35	2	0.000

The Serbian subjects experienced positive discrimination in the following areas: families treated them more favourably, privileges in the medical treatment of somatic illnesses, privileges granted in social and retirement insurance, making friends, public transport, voting, social life, starting a family, and the ability to act as a parent. In the category ‘no different treatment’ (no discrimination), the Serbian sample had similar frequencies to the main study.

Also, differences between the Serbian sample and average values of other participating countries were tested on all anticipated discrimination situations used in the questionnaire. Namely, differences in the distribution of answers were tested for all individual questions, whether participants had anticipated no, a little, or a lot of discrimination. The χ² test showed that the Serbian sample significantly differed from the world mean on two out of four situations (Table 3). Thus, the Serbian sample showed less anticipated discrimination in both preventing oneself from applying for work and looking for a close relationship. The Serbian subjects did not differ from world subjects regarding stopping themselves from something personally important and the need to hide the diagnosis.

Table 3.

Responses for anticipated discrimination in Serbia and other countries (results from the main study in brackets)

Item	Not at all	A little	A lot	Missing	χ ²	df	p
Stopped self from applying for work or training or education	46 (31)	26 (22)	28 (42)	0 (4)	8.95	2	0.011
Stopped self from looking for a close relationship	52 (40)	20 (23)	26 (32)	2 (4)	9.89	2	0.007

Using one sample t-test, differences in mean score for negative and anticipated discrimination between Serbia and other participating countries were tested. There was no significant difference found, either in negative (t₄₉ = ‒0.57, p > 0.05) or in anticipated (t₄₉ = ‒1.374, p > 0.05) discrimination. These results show that the amount of anticipated (M_Serbia = 2.22, M_world = 2.49) and negative (M_Serbia = 5.26, M_world = 5.6) experienced discrimination in Serbia is the same as in other participating countries.

Figure 1.

Negative experienced discrimination by country

Multiple linear regression was used to test the prediction of negative and positive experienced and anticipated discrimination, by age, gender, age asking for help, forced hospitalization, years of education, employment, knowing the diagnosis and agreeing with the diagnosis.

Results showed that negative experienced (F_8;41 = 1.22, p > 0.05) and anticipated (F_8;41 = 1.54, p > 0.05) discrimination could not be predicted by mentioned socio-demographic variables.

However, for positive discrimination there was a significant prediction (F_8;41 = 2.67, p < 0.05, R² = 0.34), meaning that 34% of positive discrimination could be predicted based on some socio-demographic variables. Of all those used, only some variables turned out to be significant predictors: age, gender and age of asking for help. Perception of positive discrimination (as being protected and social benefits) is most pronounced in elderly women with a long treatment history, while young men with a short treatment history perceived no positive discrimination (Table 4).

Table 4.

Significance of regression coefficients for all predictors used in the model

	β	t	p
Age	0.624	3.719	0.001
Gender	−0.429	−2.868	0.006
Age asking for help	−0.512	−3.403	0.002
Forced hospitalization	0.049	0.360	0.721
Years of education	−0.037	−0.265	0.792
Employment	0.128	0.918	0.364
Knowing the diagnosis	−0.065	−0.468	0.642
Agree with diagnosis	0.174	1.262	0.214

Discussion

The results show that persons diagnosed with schizophrenia in Serbia, as well as in the world, experience and anticipate discrimination because of mental illness. They also indicate no significant difference in the level of negatively perceived and anticipated discrimination in Serbia and other world countries.

A comparison of the Serbian results and those of the main study showed that the Serbian subjects experienced more negative discrimination in certain fields: general harm suffered because of the diagnosis, hardships in maintaining intimate and sexual relationships and feelings of insecurity in public. On the other hand, they perceived greater positive discrimination in the following fields: more favourable treatment by their families, privileges during treatment of somatic illnesses, benefits in social and retirement insurance, making friends, public transport, voting, social life, starting a family and the ability to act as a parent.

Based on this, one could conclude that families and social welfare institutions offer somewhat more support to patients with schizophrenia in Serbia than that perceived by subjects in other countries. However, in private and informal social relationships, the perception of discrimination was greater among the Serbian subjects than was reported by persons with schizophrenia in the world. This corresponds to Buchanan’s (1995) findings that persons with severe forms of mental illness have less developed social networks and associate more with members of their families than with friends.

Although it is generally believed that persons suffering from schizophrenia have a problem of uncontrolled or extinguished needs for intimacy and sexuality, the present study shows that they subjectively feel frustrated in the intimate sphere and blame it on the modified attitude of others, and not on their personal distortions.

Another field of discrimination noted by the Serbian subjects is the issue of personal safety and the feeling of being threatened in the social environment. It should be said that in the past several years, concern for personal safety and security has increased in the population in general due to social transition, value system changes and expansion of crime. Investigations show that persons suffering from mental illness may be the victims of violence to a larger extent than the general population, which mostly assumes the form of verbal or physical abuse (Dinos et al., 2004), and that they are not completely safe even in mental health institutions; however, academic literature, the public and the media are full of examples where persons diagnosed with mental illness are the perpetrators of violence.

In the Serbian sample, 76% of persons were unemployed and the majority did not even manifest a wish to work because they believed they were unable to due to the characteristics of their illness. The younger among them, better educated and employed, manifested a wish to retain their jobs or to have their jobs adjusted to their capabilities. Many persons suffering from mental illness live on social welfare. The administrative procedure for the cancellation of benefits is complex and many of these persons lack the courage to give it up, replacing it with uncertainty of employment. Societies in transition (like Serbia), are failing to adjust the job offer to mentally ill or disabled persons, protective workshops are being shut down and psychiatric patients are being retired early. The attitude of society is patho-centric, because attention is focused on ‘sick parts of the personality’, rather than on support of preserved capabilities and talents. In this way, persons with schizophrenia are being disabled, excluded from social interactions and economically marginalized. Subjects attempting to retain their jobs after being on sick leave are in a similar situation.

The results of this study indicate that subjects in Serbia had the impression of positive discrimination to a larger extent. A higher level of financial support and receiving welfare are remnants of the earlier well-developed social solidarity system. Forty per cent (40%) of subjects pointed out that they were positively treated while receiving social and medical benefits (medication, medical protection free of charge) and some of them received disability pensions or housing units based on medical documentation. Generally, one could say that patients were satisfied with the legal regulations that help them to be medically protected and not left with no income or homeless; this may be considered as a positive remnant of the former system of high level of social security.

The specific quality of the Serbian sample is primarily reflected in the effects of family support and the social welfare system, a legacy of the former social system. This study indicates that the subjects who had families (living parents, even when inadequate, e.g. who were also patients), felt stigma less than those left on their own. Family members were also the main psychological support when it came to role compensation in everyday life. In this sample, most patients had never been married or were divorced and only a few had children – with members of their immediate families remaining their only support for the rest of their lives.

For anticipated discrimination, the Serbian sample did not differ from the world sample with regard to a higher need to hide the schizophrenia diagnosis or to avoid personally important activities. Subjects, both in the world and in Serbia, avoided activation in important fields of life, not only because of fear of discrimination but due to the very fact of having a psychiatric diagnosis. Patients with a psychiatric diagnosis felt stigmatized even in the absence of any outright discrimination (Jacoby, 1994). On the other hand, the Serbian subjects prevented themselves from searching for work or establishing close relationships less than world subjects.

The results of the main study showed that scores for experienced discrimination vary among countries, but this does not refer to scores for anticipated discrimination. Results of the Serbian research show that experienced negative and anticipated discrimination cannot be foreseen based on socio-demographic variables, but that positively experienced discrimination can: 34% of positive discrimination can be foreseen based on gender, age and time of asking for help. Elderly women with a long treatment history experienced positively perceived stigmatization (being protected and social benefits) more pronouncedly, unlike young men with a short treatment history who did not perceive positive discrimination. The finding from the main study that negatively perceived discrimination is higher in patients treated longer and who have experienced forced hospitalization was not repeated in the Serbian study. This finding could direct mental health services toward promoting social inclusion instead of relying on compulsive treatment measures (Thornicroft et al., 2009).

Limitations

The questions subjects were asked to answer referred to the experience of discrimination during the entire course of their lives, regardless of the time when it occurred. It was not taken into account to what extent experienced discrimination had been justified, for example a decision of an employer not to employ a person suffering from schizophrenia that cannot be attributed to discrimination but to truly reduced intellectual capabilities. Other reasons for possible discrimination, such as gender, age, ethnic origin and similar, were not assessed either, although they might be regarded as causes of discrimination that cannot be influenced, unlike mental illnesses, which can be influenced by treatment. Duration and gravity of illness and the extent to which altered functionality increases experienced negative discrimination were not considered. The study focused on subjective experience of patients with schizophrenia while data from other sources were not included. This means that the degree of real discrimination in a society cannot be determined with certainty in this manner, but only how patients with schizophrenia perceive their status within the culture of Serbia.

Conclusion

The research results indicate no significant difference between the level of negatively experienced and anticipated discrimination in Serbia and other world countries. A comparison of the Serbian results with results of the main study has shown that the Serbian subjects experienced more negative discrimination in certain fields: intimate relationships, personal safety and general harm because of the diagnosis. On the other hand, they perceived more positive discrimination in treatment by their families, privileges during treatment of somatic illnesses and enjoying benefits in social and retirement insurance, making friends, public transport, voting, social life, starting a family and the ability to act as a parent. The Serbian sample showed less anticipated discrimination in intimate relationships and giving up search for work. The results indicate that negatively experienced and anticipated discrimination cannot be foreseen based on socio-demographical variables, however this is possible for positive discrimination. Elderly women with a long treatment history more pronouncedly experience positively perceived stigmatization, unlike young men with a short treatment history who did not perceive positive discrimination.

The results show that stigmatization of persons with schizophrenia exists in Serbia, as well as in the world, and that the level of social welfare in Serbia places it among countries with a somewhat higher positive discrimination. In addition to results indicating cultural specificities, the inclusion of Serbia in European research and action projects is important, because this makes implementation of changes in legislation and treatment of psychiatric patients easier for professionals in countries in transition.

Footnotes

Acknowledgements

The following colleagues contributed to INDIGO (International Study of Discrimination and Stigma Outcomes): INDIGO Study Group: Austria: Professor Heinz Katschnig and Dr Marion Freidl; Belgium: Professor Dr Chantal Van Audenhove, Gert Scheerder and Alison Hwong; Brazil: Cecilia Villares, Fernanda de Almeida Pimentel, Valeska Janas Murier, Renata Tosta and Professor Miguel R. Jorge; Bulgaria: Galina Veshova, Dr Galina Petrova, Dr Vladimir Sotirov, Dr Svetlozar Vassilev and Dimitar Germanov; Canada: Dr Roumen Milev and Liane Tackaberry; Cyprus: Dr Yiannis Kalakoutas and Dr Maria Tziongourou; England: Professor Graham Thornicroft, Dr Diana Rose, Professor Norman Sartorius, Elaine Brohan, Dr Ann Law, Dr Richard Church, James Fisher, Dr Morven Leese, Rosalind Willis, Dr Anil Kumar, Aliya Kassam and Gabriele Schmid; Finland: Professor Kristian Wahlbeck, Joel Lillqvist and Dr Carita Tuohimäki; France: Dr Jean Luc Roelandt, Dr Jean Yves Giordana and Nicolas Daumerie; Germany: Dr Anja Esther Baumann, Harald Zäske, Julia Weber, Petra Decker, Professor Wolfgang Gaebel and Professor Hans-Juergen Möller; Greece: Dr Marina Economou, Christina Gramandani, Eleni Louki, Dimitrios Kolostoumpis, Dimitri Spiliotis and Dr Lambros Yotis; Hungary: Dr Judit Harangozo; India: Dr R Thara; Italy (Verona): Alessia Cicolini, Antonio Lasalvia, Davide Maggiolo, Alessandro Ricci and Professor Michele Tansella; Italy (Brescia): Dr Giuseppe Rossi, Dr Michela Vittorielli and Dr Chiara Buizza; Lithuania: Dr Arunas Germanavicius, Natalja Markovskaja and Vida Pazikaite; Malaysia: Dr Chee Kok Yoon and Dr Nor Hayati Ali; Netherlands: Professor Jaap van Weeghel and Annette Plooy; Norway: Dr Jan Olav Johannessen and Sveinung Dybvig; Poland: Dr Anna Bielañska, Dr Andrzej Cechnicki and Hubert Kaszynski; Portugal: Dr Maria Vargas-Moniz and Liliana Filipe; Romania: Dr Radu Teodorescu; Slovakia: Marcela Barova; Slovenia: Dr Vesna Švab and Dr Mateja Strbad; Spain: Dr Blanca Reneses, Dr José Luis Carrasco and Professor Juan J Lopez-Ibor; Switzerland: Professor Wulf Rössler and Dr Christoph Lauber; Tajikistan: Alisher Latypov; Turkey: Professor Alp Uçok and Dr Banu Aslantas; USA: Dr Richard Warner.

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