Our study provides evidence that Roma children in Bulgaria face various barriers to accessing health services, including those related to poverty, lower levels of education, and living in geographically remote areas. Furthermore, Roma children and parents face discrimination and a lack of accommodation of their cultural, religious and linguistic differences.
As is the case for the general population , financial barriers experienced by parents of Roma children include formal and informal payments, costs of drugs and tests, and travel costs. These challenges are exacerbated by underdeveloped professional accountability and patient rights [1, 30].
Members of the Roma minority tend to experience more difficulties in paying for health services, because many of them are unemployed and do not have any income. One council worker in a village with a majority of Roma inhabitants described the lack of job opportunities in the village:
" Most of them are unemployed. Actually everybody in the village is unemployed. Nowhere there is a source of living here, nowhere one could work. [...] The unemployment is the greatest social problem. Nobody has died of hunger, but everybody is living in poverty. One cannot say this is life, but they [the Roma] survive somehow with side incomes. If they earn five Lev today, they can survive today, and tomorrow is uncertain." (village council worker)
The poor economic situation of Roma affects their ability to access health services, due to the costs for travel and official co-payments for investigations and drugs. The resulting financial difficulties figured prominently in our interviews with Roma users. One Roma parent expressed her concerns about the lack of job opportunities and lack of money to provide food and clothing for the child and to buy medications in case of illness.
" The child benefits are little and only for one year: 18 Lev for one child per month. What can you buy with that? The child wants to eat. Very little money is given for the children. Earlier, the benefits were for two years, but now only for one year. Children's clothes are very expensive. Only shoes, such small shoes cost 7–8 Lev. There is no work. That's the bad thing in the village, that there is no work. I am unemployed. He is unemployed. He is on unemployment benefits now. He gets 36 Lev benefits and you are supposed to live on that. It is not enough for paying the electricity and water bills." (Roma user)
One of the Roma families we met had two children, one of whom had a recent episode of illness which started over the weekend. The family first went to the emergency services in the nearest town, and on the following day to see the general practitioner (GP). As there is no public transport, they asked fellow villagers to give them a lift with a car and paid 17 Lev (at the time of writing, 1 Lev was equivalent to 0.51 Euro) in total for the two journeys. The visits to the health facilities were free, but for the drugs they paid 23 Lev. The mother was employed through the social programme "From Benefits to Employment" and received the minimum salary of 160 Lev per month. Although health care at the point of use was free, the total cost of this treatment episode for the family (40 Lev for travel and medication) constitutes a significant part of their income. There are also services which require formal payments which Roma parents cannot afford:
" We also know that a number of health services in this country require additional payment, which children coming mostly from the Roma population are not able to pay. A lot of treatments are not covered by the Framework Contract between the Health Insurance Fund and the GPs. If you want a service which is not covered you have to pay this, which is legal." (international expert)
In addition, our respondents mentioned that physicians and nurses ask for informal payments from Roma patients, including for health services delivered to children:
" They don't have money for drugs either. Serious irregularities happen there, they commonly charge money for measuring their blood pressure, a 6 Lev fee. They charge money, for children also money is charged [...] For injections they charge regularly." (NGO representative)
In contrast, one of the interviewed Roma families did not recall paying for antenatal services or the delivery in hospital. Still, they gave gifts as a form of gratitude, illustrating the co-existence of informal payments for health care in Central and Eastern Europe in the form of both fee-for-service and gratitude payments:
Roma woman: "We did not pay anything. [...] Nothing. We only gave something to the doctors, out of gratitude."
Roma man: "Out of gratitude. We invited them. This is normal."
One policy-maker pointed out that financial barriers prevent Roma patients from going to see a doctor in the first place, because they anticipate they would not be able to pay for any investigations or drugs. Several participants mentioned that they had difficulties with the high cost of drugs, such as a Roma mother who contrasted the current situation with the previous child health system when medicines were free for children under three years of age:
" A week ago we bought linctus for cough. Only one drug costs 11 Lev something, only for the linctus. Previously, drugs for children used to be free. Until the age of three years, we received them for free. We got free prescriptions. However, now there aren't such prescriptions. If you have money, you buy the drug, if you don't, you leave it there. We borrow money from here, from there." (Roma user)
Lack of money was mentioned also as a main reason for the poor nutrition of infants and young children. Many respondents talked about the widespread practice to feed infants with yoghurt, rather than formula milk, because of financial difficulties. Among Roma, extreme poverty may mean that they cannot even afford buying cow's milk.
Our respondents identified two major geographical barriers to accessing child health services for Roma: a poorer health infrastructure in rural areas and lack of health care providers (including emergency services) in Roma ghettoes in the large cities. One participant stressed that in villages there is no coverage with primary care providers on all days of the week. People also have difficulties going to town for diagnostic investigations, due to travel costs.
" There are serious problems for the people in the villages, not only Roma, but for all people, because the GP goes there once or twice a week. If tests need to be done, people have to go to the town, they have to spend money on transport. There is a big problem with the gynaecological examinations in the villages, mainly for the Roma. They simply do not go. They go twice, if they get pregnant and before giving birth just to register and that's it." (NGO representative)
The respondents also identified access to emergency services in Roma neighbourhoods as a major problem. Challenges mentioned include long distances from emergency care centres, poor-quality roads and discriminatory attitudes:
" In the Roma neighbourhoods, if there is an emergency, the ambulances refuse to go there. This is widely known. [...] There are two reasons. The one is that they really refuse to go there, and the other reason is that the ambulance cannot even enter the quarter and reach the address because of the infrastructure, narrow streets. There are such places." (NGO representative)
Our respondents believed that the most severe problems are experienced by the Roma who live in segregated areas or ghettoes, which in some places lack basic amenities, like running water, electricity and sanitation. One NGO representative drew attention to the fact that Roma who live among the rest of the Bulgarian population do not experience the same problems in accessing health services as those living in ghettoes. In contrast, children living in the ghettoes were believed to have limited access to primary care, because there are relatively few physicians working in the ghetto itself, or, if children are registered with a GP outside the ghetto, traveling to the GP when needed is problematic:
" In the ghettoes, in most cases the general practitioners who provide primary care and are supposed to be closest to the people are relatively few. Or if children are registered with such physicians, very often they are not in the ghetto itself. They are outside the ghetto, and the access to them is limited due to the distance – very often there is no possibility to travel and so on." (NGO representative)
Low levels of education
Many participants mentioned the low level of education of Roma parents as a major barrier to accessing health services. As one NGO representative reasoned, better education is linked to basic health and hygiene habits, but education also influences health through better jobs and better living conditions. Several participants noted that education has deteriorated during recent years, affecting mostly young Roma and rural people, and resulting in increasing illiteracy.
" The level of illiteracy among the Roma population is extremely high. Nowadays, nearly 30–40 per cent of the young generation cannot read and write, and speak Bulgarian with great difficulty. And you could imagine that girl how often she would go to the doctor, if at all. If she asks a question, in what language one could explain to her. The information needs to be in a simple language using visual aids." (policy-maker)
Many respondents identified administrative barriers for Roma children accessing health services. Several physicians and policy-makers mentioned that some Roma children are not registered with GP practices, despite their entitlement to free access to primary care regardless of the insurance status of their parents. According to the participants, difficulties in registration arise from changes in place of residence and lack of identity documents, problems that have been described in many countries of the region [18, 31]. One GP described the case of a newborn Roma baby who she could not register or refer to a specialist, because the baby did not have an identity number. Lack of registration with a GP and lack of identity documents was identified as a barrier also for pregnant women who rarely attend antenatal care:
" Access to health care is impaired even before the child is born. The mother very often doesn't go to consultations at all, she is not registered anywhere. Very often there are people in these places who don't even have [identity] documents." (NGO representative)
Newborn babies in general are not automatically visited at home after discharge from maternity hospitals; rather a home visit requires the parents to contact their GP and request a visit. One hospital paediatrician expressed her concern that Roma children thus drop out of the system in the most critical period in life:
" The highest risk contingent are some of the minority groups, who exactly in that period drop out of the system. They have not arranged with a family physician [to visit the baby], they are not registered with a GP, they have [...] low levels of education, and actually these children, in their first month, are at highest risk, when the mortality is the highest too." (paediatrician, regional hospital)
Health care reforms
In view of generally lower levels of education, higher illiteracy, and the fact that many Roma in Bulgaria have a mother tongue different from Bulgarian, accessing information about health services and the ongoing health care reforms, completing registration forms, or understanding information leaflets are a greater challenge for this group of the population. One NGO worker pointed out that information barriers are experienced by all people, but, due to their social and geographical isolation, the Roma are most affected by the general lack of information about health care reforms:
" Of course, the Roma remain the most isolated, because they are the least informed. They get least assistance to be informed." (NGO representative)
A common view on the impact of the health care reforms on access to care was that some of the introduced changes tended to further disadvantage the Roma. For example, the introduction of a health insurance system in the country in 1998 left disproportionately many Roma without entitlement to health care. Although this barrier is not applicable to children who are health-insured by the state, other reforms have impacted on Roma children's access to care, such as discontinuation of school health services, insufficient information about entitlements and official co-payments, and the need of being registered with a GP to access primary care, as discussed above.
Participants described discriminatory attitudes on behalf of health care providers, as well as feelings of mistrust among the Roma. Discriminatory attitudes interfere with the process of seeking and receiving health services and constitute communication barriers between ethnic Bulgarian doctors and Roma patients. One participant noted that some GPs do not enroll Roma patients on their registers, as Roma are perceived as having more health problems.
" We are facing a situation that a number of GPs have a strong tendency not to accept clients coming for instance from the Roma minority, as these people have very often health deficits which are connected with their social status." (international expert)
Another participant described some of the problems and misunderstandings that arise in the interaction between (ethnic Bulgarian) physicians and Roma patients:
" In general it is very difficult to work with Roma. All physicians say that. Firstly because there are barriers and mistrust, and secondly because they cannot explain what the [health] problem is. And because they really seek help only in crisis situations, when it is in principle difficult to provide quality care. Of course there is, how to say it, I don't want to call it discriminatory attitude, but it is derogatory [...] They [the Roma] feel this attitude and of course they don't like to go there to be humiliated, as would every other human being." (NGO representative)
Although discriminatory attitudes may not always be present, stereotypes and anticipated discrimination impact on access to health services. As one participant explained, some Roma may not arrange an appointment beforehand and, if other patients are seen first, this may appear to them to be discrimination and result in negative feelings towards health care providers.
Many participants described cultural, linguistic and religious differences as barriers to accessing health services. An underlying reason is the very small number of Roma physicians and medical staff, leaving ethnic Bulgarians as the main providers of health services. To overcome the resulting barrier, between 2003 and 2007, up to 113 Roma health mediators were trained and certified, although many more would be needed .
Bulgarian is the only official language of the country and health services produce written information only in Bulgarian. Poor knowledge of Bulgarian among Roma can thus interfere with their ability to communicate with health care workers and to access health information. Other cultural barriers mentioned by our participants included religious beliefs, traditional remedies, the practice of early marriages, and the lower social position of women in Roma communities.
It is perhaps not surprising then that participants describe current health care provision as giving rise to a lack of trust among the Roma, with negative implications for seeking health care, attending prophylactic examinations and immunizations, and adherence to physicians' advice. One NGO representative described the lack of trust as a very common problem. She attributed it in part to the poor communication skills and lack of cultural awareness among health care workers.
A strong theme in the interviews was that of childhood immunizations, mirroring problems in immunization coverage for Roma children in other countries of the region . Fears that immunizations may be harmful to the children or cause infertility were mentioned by several non-Roma participants. Lack of communication or sufficient explanation to the parents about common side effects of the immunizations seems to be one reason for these fears.
" [T]he problem with immunizations has not yet been overcome. Very often the Roma community is afraid of these immunizations. They believe that it is something directed against them only, that it is not good for the children. There are enormous fears, if after one immunization, the child gets ill. It is ill for a week. They link this with the immunization and that's true, but nobody has explained to them that it is a normal reaction and so on. And they don't go for the second immunization." (NGO representative)
Several policy-makers pointed to the need to take into consideration cultural differences when planning health programmes and delivering health services for ethnic communities:
" What I think is missing is a differential approach to working with the various ethnic groups. [...] This context needs to be known, so that the programmes of work in their communities acknowledge the specificity of the culture of this ethnic or population group." (policy-maker)
The need of quality education for all children and preventing early drop-out from school was emphasized by many participants as a key for improving health education, raising awareness about health risks and building trust in health services:
" What needs to be done by all means is that children and young people are kept in school and receive better quality education. The more educated they are, the later they will get married. She will not be 12 or 14 years old when she gives birth. She will have more knowledge and will know how to react in one particular situation or another." (social scientist)