Knowledge and awareness of tuberculosis among Roma population in Belgrade: a qualitative study

Tuberculosis (TB) remains an important health problem in Serbia. There has been no reduction in the incidence from 1994 to 2004; the incidence in 1994 was 34 per 100,000 and in 2004 it was 35 per 100,000 inhabitants. Age-standardized mortality rate in 2004 was 2.45 per 100 000 inhabitants. Researchers also reported an increased mortality rate in the period 1982-1996, probably caused by poor economic conditions and migration from war zones [1]. Research conducted in some marginalized ethnic groups suggests that being a member of a minority ethnic group can be an independent risk factor for TB. That is, being poor increases the risk of TB, but being poor and a member of an ethnic minority increases the risk even further [2].

In general, Roma people are different from poor people of the major ethnic groups because they are more likely to remain poor, often live in ghetto-like settlements of cramped housing far from health services, and routinely experience discrimination from the healthcare system and other state services [3].

Almost all academic and gray literature agrees on three points: (1) there is little data about the health status of the Roma population; (2) the little data available indicate gross disparities between the Roma population and the major ethnic groups; (3) poor health among the Roma population is closely associated with the fact that they comprise a disproportionate percentage of the poor population [2].

Information about the health status of the Roma population is often not based on solid assessments. Some studies have reported higher rates of type two diabetes, coronary artery disease and obesity among Roma adults [4].

In Serbia, limited data show that the health status of the Roma population is far worse than that of the general population. The causes of this situation are closely related to poverty and exclusion: the unemployment rate among the Roma population is four times higher than the average in Serbia, and 32.5% of the Roma population have none or less than 4 years of education [5]. Furthermore, poor living conditions and discrimination in accessing health care services have an additional negative impact on the health of the Roma population. Consequently, TB could be a greater problem in the Roma population than in the general population in Serbia. Recent studies have highlighted the importance of increasing awareness about TB and reducing the associated stigmas to reduce the incidence of TB and enable earlier diagnosis and effective treatment [6, 7].

This study was performed to investigate the knowledge and beliefs about transmission, symptoms and treatment for TB, as well as attitudes towards patients with TB among the Roma population in Belgrade.

A total of 24 Roma people aged 19-55 years participated in three focus-group discussions. We planned three focus groups with 6-8 participants in each group for ease of facilitation, to give each participant an opportunity to contribute. We considered what might be the most successful way to achieve good recruitment balanced with cost and time available. Groups were selected according to living conditions in their communities. The first group included participants from the community with worst living conditions (slums). The second group included participants from the community with living conditions similar to the general population in Belgrade. The third group included participants with living conditions of a standard between groups 1 and 2. Researchers approached people that satisfied predetermined criteria (living in selected Roma community, aged 19-55) and provided them with information about the aims of the research and asked them if they were interested to contact the researchers at certain time and place in the community. At the initial contact with the researcher further information was given about likely dates and venues, transport arrangements, and that refreshments were to be provided. All groups comprised three males and five females. Considering that the participants are selected according to the previously chosen criteria, the opinions expressed in the discussion should be considered typical for the particular segment of the population only.

The focus-group method was considered to be appropriate for exploring the knowledge and beliefs about TB transmission, symptoms and treatment, opinions on appropriate preventive measures, and attitudes towards people with TB among the Roma population. The method does not seek to quantify data, but does try to explain certain phenomena to establish relevant hypotheses for further investigation [8].

The three focus groups addressed five main topics: knowledge of modes of transmission; knowledge and beliefs about symptoms of TB; knowledge and beliefs about effective treatment for TB and opinions about the most appropriate measures for TB prevention; main sources of information about TB; and attitudes towards patients with TB. Questionnaire for conducting focus groups discussion was prepared (Additional file 1)

Each focus-group session lasted 90-120 minutes. A trained psychologist with experience in moderating focus groups chaired the sessions in a non-directive manner. An observer participated in the sessions and her task was to record discussions as well as to ask complementary questions if any topics were not covered. Immediately after each session, the moderator, observer and researchers (authors) discussed the findings.

The sessions were recorded and transcribed verbatim. Data were analyzed and categorized into the objective or topics determined in advance. First, the interviews were read to become familiar with the text. The next step was to identify key issues in the text related to the topics. In the third step, the key issues were sorted according to the five central topics. Finally, the session data were arranged into new categories within each topic. All three authors discussed the categorization to achieve consensus about the content and the categories.

All participants in focus groups were informed about scope and objectives for the study and explicitly agreed to participate in the study.

The study was part of the Ministry of Health of the Republic of Serbia project "Control of tuberculosis in Serbia", supported by the United Nations Global Fund to Fight HIV/AIDS, TB and Malaria.

Ethical approval for the study was obtained from the Ethical committee of the School of Medicine, University of Belgrade.

All participants knew that TB is a pulmonary disease that can be contagious. The participants cited laboratory blood analysis as the most appropriate method to establish if someone is contagious.

"There are contagious and non-contagious forms of TB. Some blood analysis could be performed and it tells you all. Blood analysis shows whether it is contagious or not. If it is contagious, everyone living with you must give the blood for analysis, so it can be seen if they are infected."

Participants (especially those having someone close with TB) had heard of the term cavity and knew that patients with cavity are contagious.

Various health problems, such as severe acute respiratory syndrome, avian flu and HIV/AIDS (but not its association with TB), as well as other chronic problems, are reported in the media to a much greater extent than TB [9].

Participants identify cough as an important symptom of TB; however, they do not associate cough with transmission of TB. The most common belief among participants was that TB is transmitted via saliva containing TB bacilli or via blood. However, transmission via blood is considered to be due to being of the same bloodline, so TB is seen as a 'hereditary' disease. Such beliefs could lead to stigmatization of TB patients. Some studies have shown that women could be considered unsuitable for marriage if they or a family member has suffered from TB [10].

Some participants thought that shaking hands with an infected individual could transmit TB. A recent study in the general population in Serbia found some misconceptions about the possibility of transmitting TB through physical contact with a person with TB (8.3% thought it was possible) and through food and drink (4.0% thought it was possible). However, TB was not mentioned as being hereditary [11]. Some similar misconceptions such as blood transfusion, drinking water and food as means of trasmission and TB being an inherited disease were obtained in the study conducted in Croatia [12]. Interestingly, a study on the Aboriginal population in Canada found that some respondents belived that TB is hereditary, but no explainations for this belief were reported [13]. It has been argued that knowledge about the symptoms of TB and their early recognition could help in timely treatment and prevention of disease transmission [13, 9]. Generally, the Roma individuals in the focus groups knew the most common symptoms of TB. However, some respondents confused TB with other pulmonary diseases such as asthma and pneumonia, which is in agreement with the findings of San Sebastian and Bothamley [14].

Regarding factors contributing to the occurrence of TB none of the participants mentioned smoking. It has been noted that smoking is often not recognized as significant risk factor for TB, as showed in study in Croatia [12]. It is of great importance as smoking is much more prevalent in Roma communities than in general population. Smoking should be specially addressed in all health education campaigns regarding TB in Roma communities.

Our participants were aware about the need for prescribed treatment and that TB could be a dangerous, even lethal, disease. In addition to prescribed medicines, participants mentioned some folk medicines. Most participants emphasized the importance of appropriate diet and inhaling fresh air as appropriate preventative measures.

Our analysis showed that relatives and friends were the most common information sources, which is in agreement with results obtained from focus groups with poor Roma individuals conducted in Bulgaria and Romania; these studies concluded that Roma people felt more comfortable sharing personal health information and questions with their own community than outside their community [2]. Most Roma individuals would prefer to receive information by talking directly to their doctor. By contrast, the Aboriginal population in the Canadian study mentioned pamphlets, workshops and television as preferred information sources to learn about TB [12]. A lack of confidence in healthcare workers, of which only a few are from the Roma population, has been reported in the literature [2]; however, our results indicate the opposite.

We concluded that participants were aware of the seriousness of TB as well as some modes of transmission; although there were some misconceptions. An important finding was the confidence in doctors expressed by the Roma people. This indicates that doctors should not only see patients with active TB, but should also be more engaged in providing information about TB prevention.