© Borgis - New Medicine 2/2012, s. 52-62
*József Rácz1,2, Ferenc Márványkövi1, Zsolt Petke2,3, Katalin Melles1, Anna Légmán1, István Vingender4
The barriers to obtaining treatment for Roma and non-Roma intravenous drug users in Budapest, Hungary: a group comparison
1Institute of Psychology, Eotvos University Budapest, Hungary
Director of the Institute: Dr. Zsolt Demetrovics, PhD
2Department of Addiction Medicine, Faculty of Health Sciences, Semmelweis University Budapest, Hungary
Dean of the Faculty: Dr. Judit Mészáros, PhD
Doctoral School of Pathology, Semmelweis University, Budapest, Hungary
Program coordinator Prof. István Szabolcs, DSc
4Department of Social Studies, Faculty of Health Sciences, Semmelweis University Budapest, Hungary
Dean of the Faculty: Dr. Judit Mészáros, PhD
Introduction. The authors analysed the social exclusion of intravenous Roma and non-Roma drug users who are outside the treatment system. The goal of the study was to explore the barriers to treatment of the two groups and to see if the Roma group had a lower access rate to drug treatment.
Methods. Subjects: There were 70 Roma and 70 non-Roma subjects from clients of needle exchange services and their friends. The subjects were recruited by snowball techniques in Budapest (capital of Hungary). The two group members were selected to be similar in terms of their major socio-demographic characteristics. A questionnaire was developed regarding barriers to treatment and the need for treatment as well as regarding their drug use and risky behavior.
Results. Indicators of social exclusion suggest a less favourable situation for the Roma subjects (education, employment, source of income, criminality). On the basis of their drug use and high-risk behavior, the Roma are not a higher risk group (injecting drug use, frequency of drug use, sharing behavior, hepatitis testing, hepatitis C infection, participation in needle exchange service). The probability of obtaining treatment can not be explained by ethnic background.
Conclusions. Roma drug users are at a greater risk from a social standpoint, while in relation to health and drug behavior, they are at a lower risk. The results do not fit in with earlier studies on Roma populations with high risk drug using profiles. Regarding the study’s results, some limitations can be considered: low number of subjects studied, the special populations from needle exchange services.
According to the Council of Europe, there are approximately 10 million Roma in Europe (estimates vary from 8 to 15 million; “approximately 10 million” seems to us to be the best estimate). They are mainly found in the Balkans and in Central and Eastern Europe (2). According to the Council of Europe’s data on the Roma population in Hungary, the official number of Roma people (according to the 2001 census) is 190,046. The estimated numbers are between 400,000 and 800,000 (2). In Hungary, most of the Roma people do not speak a Roma language (3). The total population of Hungary is 10 million inhabitants.
“The 1993 Hungarian Act on the Rights of National and Ethnic Minorities (Minorities Act) clearly made ethnic classification the exclusive right of the individual. Self-identification has thus become the sole legal ground for defining ethnicity” (3 p. 14). This is why we asked study persons to identify their own ethnicity. We also note that “The words Roma (Roma) and cigány (Gypsy) are used as synonyms in Hungary, although there is no consensus on the correct, un-stigmatised name” (3 p. 16).
With regard to the characteristics of Roma groups in terms of drug use, we must first note that both the international and domestic data are either insufficient or inconsistent. One reason for this is that during the course of data collection it is not permitted to ask about ethnic origins in the examination of a large, representative sample, and on the other hand the existing research does not completely satisfy numerous methodological criteria. In the latter case, we believe that it is primarily the lack of a representative sample (in many cases, the studies in question are local studies) and the reliability of the sources of information (experts’ estimates) which can significantly influence the ability to interpret and make generalizations from the data. We are attempting to provide an overview of the barriers preventing Roma individuals from obtaining treatment through a review of international (European) and domestic literature.
International studies: Roma drug users not undergoing treatment
The study by Grund, Öfner and Verbraeck (4) states that Roma drug users in the central European region are less willing to seek out assistance with social or healthcare issues, including low-threshold services. This increases their marginalized status, while marginalization contributes to their unwillingness to seek aid. The discrimination and stigmatization of Roma drug users can also be felt in the treatment facilities, as well as in the wider realm of society. The study performed by the United Nations Development Programme (5) highlights the fact that one of the impediments to obtaining basic healthcare and social assistance – in addition to geographic distance – is the lack of information, which represents a barrier for both Roma drug users and non-users.
British and Dutch researchers (6-9) – also basing their studies primarily on the opinions of experts – examined the factors which keep members of ethnic minorities, including Roma drug users, away from the various treatment programs available. On the basis of these studies, they identified the following factors which make it more difficult to receive treatment for drug addiction:
– The lack of cultural sensitivity: the treatment centers do not take into account the family’s primary role in Roma groups, or ignore the opportunity to bring family members into the treatment programs;
– Fearing stigmatization, the Roma users do not dare to resort to seeking treatment;
– The differing backgrounds of the treatment workers and the users: the non-Roma professionals do not show sufficient cultural sensitivity and empathy;
– Mistrust of the treatment centers;
– Language difficulties.
During an Irish study in 2005 of itinerant Roma groups, (10) identified the following factors which make it more difficult for these people to receive healthcare treatment:
– The lack or low degree of knowledge about treatment types;
– The low level of schooling and education in itinerant Roma groups, and the illiteracy that arises from this;
– Discrimination and stigmatization of the Roma in healthcare at the individual and institutional levels;
– The concealment from professionals of problems arising from drug use;
– The lack of treatment programs specific to the culture and target group;
– The lack of cultural sensitivity in the relevant institutions.
Data was collected from primary sources in Bulgaria (11), providing more information about Roma drug users in Sofia. The workers at the Sofia needle exchange center identified the lack of healthcare provision for Roma intravenous drug users as the most commonly experienced difficulty (81%). They named the low level of education and the state of their health as being secondary concerns, and poor living conditions, the closed nature of the Roma community and discrimination as further barriers. Research performed on a sample from a Spanish treatment center that deals with drug users studied the likelihood that Roma and non-Roma drug addicts would remain in treatment (12). The results showed that remaining in treatment is more likely in the case of non-Roma addicts, although the result was not statistically significant. An important component of the analysis was that a history of treatment has an impact on whether or not users remain in treatment, and this impact is significant in the case of Roma drug users. The importance of this is that in the case of the Roma, the socializing effect of a history of treatment is significant as regards the success of their continuing course of treatment. In conclusion, it is worth mentioning Subata’s (1997) (13) research, who observed at a methadone maintenance center in Vilnius that the Roma drug users did not make use of the services, due on the one hand to geographic distance, and on the other to a lack of trust in the workers there. In Spain, due to similar difficulties, the criteria for receiving methadone maintenance treatment were relaxed (14).
Hungarian studies: Roma drug users not undergoing treatment
In practice, no focused study has been conducted in Hungary that has made a comprehensive attempt to uncover the drug use characteristics and patterns of the Roma, or to explore the barriers they meet in obtaining treatment. Although certain researchers have dealt with the topic in a secondary manner (15, 16), the only comprehensive and focused study was conducted by Ritter (2005) (17), who – even if only to a minor degree – studied the barriers to obtaining treatment. Of the drug users questioned, 4.5% indicated that they had taken part in a treatment program for their drug problem. This meant primarily in-patient hospital treatment or an out-patient drug clinic. Of these, a total of only two people stated that they underwent treatment because they needed it; it was far more typical that they sought out an aid center due to advice or pressure from their immediate environment (family members or friends). The researchers did not examine the possible reasons for such a low percentage of Roma drug users who had participated in a treatment program. At the same time, it is an interesting fact that more than three-quarters of those questioned (76.7%) knew a Roma youth who, according to their opinion, was in need of treatment, but had not entered into a program. They saw the primary reason for this as being that the person in question did not want to quit, or did not feel the need for treatment.
The limitation of this research was that there was no opportunity for a comparison with non-Roma drug users in terms of either the frequency of drug use or enrollment in treatment programs, or in connection with the reasons for the barriers and difficulties in obtaining treatment.
From the synopsis above of the literature, it is therefore easy to see that numerous factors influence the entrance into, the need for and the seeking out of treatment by problematic drug users, including users of intravenous drugs. The research and studies outlined above suggest that numerous factors are not specific to culture or background; they may be found equally in groups of both Roma and non-Roma intravenous drug users. At the same time, we repeatedly met with explanations relating to discrimination due to the subjects’ Roma ethnic origins and the shortage of information, as well as factors arising from the Roma culture and way of life, such as the closed nature of the Roma community and the differing attitudes of the Roma to their health and physical condition.
There are several methodological problems with Roma drug users, it is also a problem that who many are in treatment and what the main barriers are to get treatment. A speacial geographical region (the 8th district of Budapest) was chosen, wher Roma snd non- Roma drug users live together. Here a needle exchange program is run so we can study the clients of this program.
The objectives of the research were to:
– Explore the characteristics of socially excluded (and at the same time those not undergoing treatment) intravenous drug users, as regards their drug use, and furthermore the types of service they obtain (or do not obtain);
– Discover what knowledge Roma and non-Roma intravenous drug users have about the various treatment programs, identify their reasons for not entering into treatment and uncover their relationship with and attitudes towards the treatment system;
– Explore the differences in drug use patterns between Roma and non-Roma users, and the high-risk or preventative behaviors related to their drug use;
– Identify the characteristics of the intravenous drug users who classify themselves as Roma and non-Roma, assuming that the drug users who classify themselves as Roma do not represent a homogenous group.
Intravenous drug users can be considered as a hidden target population, with whom the traditional random sampling and data acquisition procedures cannot be employed, or can only be employed in a limited fashion (24).
The study was carried out in the capital (Budapest: 2 million inhabitans), in the 8th district of Budapest (82.000 inhabitans). Here, the Blue Point Drug Counselling and Outpatient Centre runs a needle exhange service. The clients of this service were the points of snowball samples of the study groups.
During the course of the research, 70 Roma intravenous drug users who were not in treatment programs were questioned, as well as a further 70 non-Roma as a comparison group (total: 140 persons). For the purpose of comparability, the major socio-demographic and drug use characteristics of the group being examined and the control group were similar. The formation of the comparison sample occurred continuously during the course of the data collection process, at the same time as the Roma sampling, using a so-called quota sample. This method of sampling required the continuous registration of quotas based on major socio-demographic characteristics, and the continuous supervision of the data collection process (12).
During the course of the research, in addition to the utilization of questions that could be adapted from international surveys (regarding the socio-demographic background, treatment history, health and social status, drug use habits, perception of risks relating to infection and barriers to obtaining treatment of the drug users), there were also operationalization questions regarding the attitudes of the intravenous drug users towards the people providing the services.
The assessment methods that we took into account during the development of the questionnaire and that we wanted to use in order to measure the barriers to obtaining healthcare and social welfare treatment, as well as for measuring social exclusion, were adapted from the following:
1. The barriers to obtaining treatment for intravenous drug users on the street in New York (18);
2. Barriers to obtaining treatment for illegal drug users in Australia (19);
3. The need for medical and psychosocial treatment amongst intravenous drug users in a treatment sample (20);
4. The previously validated Hungarian version of the questionnaire examining the habits of intravenous drug users developed by the National Institute on Drug Abuse (NIDA) (21);
5. A questionnaire which we produced ourselves that was utilized during the course of research performed amongst problematic drug users in Budapest who were not in treatment programs (22);
The Heroin Severity Dependence Scale that has been used in international research and has also been validated in Hungary was included in the questionnaire (21, 23).
Following a period of instruction regarding the pre-prepared, partially structured interviews, they were conducted in the street by social workers participating in the research and who were employed by low-threshold service providers.
The data sampling occurred between December 2007 and March 2008.
During the course of the study, we creat a sample of 70 non-Roma drug users who were not undergoing treatment to the snowball sample consisting of 70 Roma (total: 140 persons). During this alignment process, we took into account two considerations in addition to the appropriate drug use history: the sex and age of the subjects. The configuration of the two samples occurred continuously, with the basis being the Roma sample, and the interviewers had to constantly align the “non-Roma” sub-sample in order to agree with the other group. We determined that the difference in age could be +/- two years. During the snowball sampling of the “Roma” sample, our objective was for the questioning to be initiated from as many points as possible, and that the chain should be as long as possible. The drug users received a 1,000 Hungarian Forint shopping voucher in exchange for taking part in the interview.
We entered the interview data into the Statistical Package for the Social Sciences (SPSS) database, and the processing of the data also occurred with the help of this statistical software package.
Considerations for research ethics
The Scientific Research Ethics Board of the Hungarian Academy of Sciences’ Psychological Research Institute issued the required ethics permit for the research. We also consulted the Office of the Parliamentary Commissioner for Data Protection.
Univariate analysis methods
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