Methodology

There were two study populations. The first study population consisted of Roma living in rural communities in Romania, aged 18 or older, who speak Romanian. The second one consisted of health mediators, activists and other professionals working regularly with Roma communities. A total of thirty interviews were conducted between August 2021 and October 2021. Twenty in-person, face-to-face interviews were conducted in two rural Roman communities in Mure County: eleven interviews in the Tamnsa community and nine interviews in the Cale community.³ In addition, ten online or video-conference interviews were conducted with health mediators, activists and other professionals working with these communities. With this sample, we believe that we reached a satisfactory ‘saturation point’ (fifteen). Out of the thirty participants, twenty-eight were of Roma ethnicity. All participants spoke and understood Romanian. However, except for the two non-Roma experts, everyone spoke and understood the Romani language.⁴

To give them a more conversational touch, the face-to-face interviews were mostly carried out in the participants’ own homes or in their gardens in order to ensure the latter were as comfortable as possible and did not feel pressured in any way. All interviewees were made familiar with the nature and objectives of this study beforehand and were given the chance to ask as many questions as they wanted regarding the study. They were also asked to sign a consent form. In the cases where interviews were conducted by telephone or via the internet, consent was verbally obtained. Verbal consent was also obtained in the cases where interviewees could not read or write.

The Tamnsa community is a rural community inhabited by Neo-Protestant groups (mostly Pentecostals). Their native language is Romanian. Their way of life is based on subsistence agriculture. It is an apparently well-kept community, where there are several non-governmental organisations (NGOs) collaborating to improve the life of its inhabitants through socio-labour inclusion. In this community, they have encountered various ethnic tensions. During the last few decades, there have been several violent confrontations between the Roma, Hungarians and Romanians, which has led to the increased isolation of the Roma community.

Of the two communities, the one in Cale faces greater poverty. In addition to Romani and Romanian, the resident Roma speak Hungarian. In this community, we highlight the fact that a large part of its population returned from other countries (e.g. Hungary or Italy) at the beginning of the pandemic. Traditionally these people have been members of the Church of the Calvinists (Reformed) and of various Neo-Protestant groups. Their way of life is based on daily jobs involving manual labour and on local agriculture, and they usually travel nationally or internationally for temporary jobs. Large numbers of people live in overcrowded housing and without access to safe drinking water, leading to an increased risk of infection with any communicable disease. Like the Tamnsa community, there have also been violent ethnic tensions with the majority. Here it has been observed, however, that the degree of social separation is even higher.

All interviews were audio-recorded and transcribed verbatim. We used thematic analysis to analyse the data. For the analysis and interpretation of the interviews, the heterogeneity of the communities themselves has been considered. We have structured the analysis around a central theme, which is the perceived inequalities in health-care access during the COVID-19 pandemic. However, other issues emerged such as discrimination in the health system (not only during the pandemic), traumatic experiences of violence in hospitals, and identification as ‘Roma’ or ‘Gypsy’. Therefore, to make our study more fluid and robust, we will try to address all those issues that emerged and relate them to our central theme.

Results

The study sample is described in Table 1. Our sample of Roma community participants included both men (N = 14) and women (N = 16). The mean age of participants in the Cale community was 44.5 (SD = 11.7, range = 33–68), whereas the mean age of participants in the Tamnsa community was 43.5 (SD = 18.08, range = 20–68). The professionals’ sample had a mean age of 44.9 (SD = 10.14, range = 31–55).

Even though the two communities studied have different characteristics, we identified three relevant issues: (a) scepticism about COVID-19 and the vaccine; (b) the role of the health mediator before and during the pandemic; and (c) discrimination suffered before and during the pandemic with regard to medical attention.

Scepticism about COVID-19 and the Vaccine

None of the interviewees in the two Roma communities believed in the existence of COVID-19, let alone the vaccine. Of the twenty Roma community participants, only two of them were vaccinated. Informant Dorin got vaccinated because it made it easier for her to migrate to another country for work, not because she considered vaccination necessary; and informant Elena got vaccinated because the vaccine was mandatory for her to be able to receive regular health care (she had a chronic illness that required her to get dialysis treatment two days a week). Both informants lived in the Tamnsa community.

Within that same community, the role of religion is fundamental: it is part of their everyday lives. The residents believe that God has always protected them from all dangers and will continue to protect them, so there is no need to get vaccinated. One resident said: ‘For us the pandemic was not difficult. . . . as if nothing had happened. God takes care of us, so we don't want to get vaccinated. As long as He takes care of us, everything will be fine’ (Loredana, Tamnsa community). Another explained: ‘This is like a test from God; that's what he wanted. And vaccinating us would be not to let him take care of us’ (Iulia, Tamnsa community).

In addition, several informants, such as Marin and Dorin from the Cale community, told us that when they went to the doctor he recommended the vaccine to protect against COVID-19. However, when the informants asked the doctor if he had been vaccinated himself, they said that the doctor had replied that he had not. This led to an even greater rejection of the vaccine. In Marin's words: ‘Why do I have to get vaccinated and the doctor doesn't?’

Instead, all the experts interviewed were vaccinated and believed in its effectiveness. ‘I want to believe. This is what I want, to believe that the vaccine is good. Just like vaccines were in Ceausescu's time. So, I want these vaccines to be good’ (Expert 8, health mediator). This implies that, mainly, health mediators carried out a campaign for the communities to be vaccinated without success, as Expert 3 mentioned (Expert 2, medical assistant, concurred):

For now, we are doing an information campaign for the people from the Roma communities in regards with [sic] the vaccination process. Unfortunately, they are very reluctant. They don't want to hear about vaccination, no matter how much I try to explain to them how important it is. They just don't want to get vaccinated, only if they are required to be vaccinated in case they want to go to another country and that state requires it. They prefer to get tested. (Expert 3, health mediator)

On the other hand, mass media and ‘fake’ news outlets did a lot of damage in terms of introducing fear, scepticism and disbelief about COVID-19 and vaccines into the two populations. For example, Expert 7, a health mediator, told us that this was one of the main reasons why people did not get vaccinated: ‘They are uncertain about the vaccine because there were some cases in which some of the people had panic attacks or heard a lot of stories or fake news’.

The Role of the Health Mediator before and during the Pandemic

From our data, we have also gained a deep understanding of the role of the health mediators in their communities. The mediators interviewed for this study have been working for more than ten years in their respective communities, as is the case with Expert 1 and Expert 8.

The role of the health mediators is fundamental in establishing the connection between the Roma community and the national health system in Romania. However, that role became critical during the COVID-19 pandemic. For example, in the interviews with Andrei and Ana of the Cale community, they told us that without the help or intervention of the appropriate mediator they would not have had access to the health centre because the medical staff did not attend to their problems. According to Andrei, ‘if the mediator of our community had not intervened, I would not have been able to get my mother's prescription. The nurse wouldn't want to give it to her. I don't know why, because she didn't tell us either’ (Andrei, Cale community).

Since the beginning of the pandemic, the health mediators had been responsible not only for health issues, but also for any other work that may have been required. For example, Expert 3 and 8 brought prescriptions, medicines and food, and they paid bills. In Expert 8’s (health mediator) words, ‘we have done everything that was needed to make life easier for families in the community’. She also told us about the importance of health mediators:

If it wasn't for me, it wouldn't have done anything with the Romani in my community. Now you can talk to them. Anyone comes to me before they go to them, like when a doctor must talk with a Romani. People are not malicious and accept and want to collaborate. That's how I taught them, like sheep when they have a shepherd, and the shepherd keeps taking them because there's fresher grass. So, without mediators nothing can be done. (Expert 8, health mediator)

In the communities where the role of health mediator does not exist, the daily lives of many families were worse of during the pandemic. For example, Expert 5, a Roma expert and activist, mentions that these communities did not even have medical care during the pandemic. In addition, the poor drinking water infrastructure in these communities only worsened the medical condition of many families living there.

Discrimination Experienced before and during the Pandemic with regard to Medical Attention

As expected, access to health care for the Roma population is difficult, with many obstacles set before them. Some of the families only try to access the health-care system in emergency situations to avoid the informal payments associated with treatments that are free on paper. The same held true during the pandemic. One participant: ‘Sometimes we have to choose whether our children eat or go to the doctor. You can imagine what we choose’ (Iosif, Cale community). Another said: ‘If you have money to put into doctors’ pockets, they'll take care of you; otherwise, forget it. You can die in the hallway and the doctor does nothing’ (Roza, Cale community).

On the other hand, the discrimination and racism suffered by the Roma as an ethnic group was truly remarkable when it came to the public service. For Expert 5, doctors work together with health mediators but with a mentality of you with yours, and I with mine. In other words, the majority non-Roma are the direct responsibility of doctors and health-care staff. However, when we speak of the Roma community, that medical responsibility is transferred to the figure of the health mediator. The mediator is expected to take care of any problems that may arise.

When a doctor or a medical assistant has a problem with a Roma person, the latte is referred directly to a health mediator. And the phrase they use for this according to Expert 6, a health mediator, is: ‘It's yours, do something with it’. So, access to the health system often involves experiences of social distance or flat-out racism. In the narratives of the Roma participants, we found negative experiences when it comes doctors and nurses treating their families. Here are two examples:

I gave birth two months ago at the big hospital in the city. And the doctors and nurses saw that we were Roma, and they spoke to us uglier. Other people dressed better, more elegant, [and] they spoke better than we did. But it has always been like that; doctors have always spoken badly to us, so I only cared that they would take good care of me and my baby. (Loredana, Tamnsa community)

We went with my daughter and my wife to the doctor half a year ago because my daughter has a mole on her leg. We waited in the doctor's room, and it was my daughter's turn to come in. But a white woman came and they let her pass in front of us. A Roma, as you say, must scream and make a fuss to be heard. And only then do they think to listen to us just so we don't make a scene (Dorin, Tamnsa community).

Some of the experts interviewed highlighted that Roma women are the ones who have the most negative experiences in hospitals, which is why they refuse to return. For example, Expert 8 (health mediator) describes several experiences of young Roma for whom she had to mediate, since they were involuntarily sterilised after giving birth. This was a very common practice performed by doctors in Romania with Roma women in the early 2000s, and one which she still sees being carried out today, albeit to a lesser extent.

Although access to health services in Romania is available to all on paper, waiting time for care can frustrate people and cause them to stop going to the doctor. Moreover, the pandemic only increased the barriers and the delays in accessing the health system and health-care services. One participant told us this story: ‘A few months ago, I saw a man faint in the hallway, young but fat, because no one was looking after him despite saying he couldn't breathe. Soon I found out he was dead. Even if you're dying, you must wait in line because they don't take care of you’ (Roza, Cale community). Meanwhile, according to Maria (Tamnsa community), she ‘had been scheduled to have breast cancer surgery on both breasts for over a year. But I was delayed all the time until two months ago, when I finally had surgery’.

Discussion

Inequalities in accessing health-care services amongst Roma minorities have been consistently reported for the past several decades. Yet, fewer studies have focussed on Roma communities and health inequalities during the COVID-19 pandemic, especially in an Eastern European country such as Romania.

The COVID-19 pandemic had a greater health impact on the most disadvantaged groups (Bambra et al. 2020) of society. These have higher rates of infections and a higher risk of death, worse living and working conditions, and restricted access to health services (Barboza et al. 2021). These predictions are consistent with our analysis, which found that the Roma group was more vulnerable during the pandemic, which made it even harder for them to access health services.

When we examined more closely what led to the widening of the health-care access gap during the pandemic, we found that the one overriding factor was the discrimination that this group has long experienced in Romanian society, which was exacerbated by COVID-19. This discrimination, we found, is often linked to the characterisation of the Roma as traditional and culturally conservative. This narrative has been found in different literatures (Tesfay 2009; Voda et al. 2021; Woodcock 2007). However, in our study we have found that this is not the case, and that, in fact, we cannot talk about health experiences in Roma communities without considering a multi-dimensional approach that understands that the latter are in fact heterogeneous (Orton et al. 2019).

In fact, Miranda Millan and David Smith (2019) in the United Kingdom, like Ramos-Morcillo and colleagues (2019) in Spain, observed that Roma communities are highly adaptive in the face of challenges, and that this was no different during COVID-19 pandemic. These authors suggest that the health of Roma people be monitored routinely, relating it to their culture. Thus, we see that there is an interrelation between health care and the heterogeneous culture of Roma communities. Analysing our results, we highlight the importance of this interrelation, which could easily be carried out by health professionals like health mediators.

A characteristic of the Romanian health-care system is the formal and informal costs that are involved. When we talk about reporting costs, we mean the payment that must be given to the medical professional to care for you, although this payment is not officially prescribed and does not form part of the medical professional's official fees (Gheorghe and Mocanu 2021). This service hinders access to the public health system for applicants belonging to the Roma ethnic group, who are often poverty-stricken or in a financially vulnerable situation, as we have observed in our results.

We also stress the importance of health equity research. When we talk about health equity, we must highlight the importance of research on xenophobic policies, patterns that identify structural racism (Machado and Goldenberg 2021), and their configuration in the health of ethnic minorities during and after the COVID-19 pandemic. This research needs to be culturally adapted to each community's context and performed with anti-racist approaches so as to ensure the necessary attention to their needs.

Then again, we have always stressed the importance of transparent and credible information-sharing mechanisms during a pandemic (Boyd et al. 2017). However, this was not the case in Romania (Human European Consultancy 2020), and this led to increased scepticism about the virus and the vaccines themselves, as there was, and still is, a lack of public policy commitment to facilitate effective and tailored intervention (Poole et al. 2020). Transparent information is essential.

Finally, community life is at the heart of the pandemic, and certain changes in cultural practices and daily life were necessary to reduce the spread of the virus. But

the pandemic also highlighted social inequality and structural violence that need addressing by agents of power who must be held to account for faulty leadership, allowing some to steal and feel ‘more equal than others’, while millions face poverty and hardship. One of the lessons we learned from COVID-19 is that pandemics are a part of our future. (Pillay 2021: 332)

Strengths and Limitations

We believe that our research contributes to the understanding of the increased health inequalities in Roma communities during the COVID-19 pandemic in Romania in a disadvantaged and culturally diverse socio-economic environment. This pandemic has strengthened our understanding of the relevance and urgency of taking action to reduce health inequalities.

However, we have also encountered some potential limits. The first limitation relates to its confinement to only two communities. Ideally, more communities would be reached, and more interviews conducted. This limitation was set by the fourth pandemic wave in Romania, which was beginning to emerge in the months of September and October of 2021, making it difficult to access communities. Thus, opinions that would have enriched this article might have been left out. The second limitation relates to how it would have been important to conduct more interviews with different experts such as health mediators, rural medical assistants, activists, NGOs, etc.

Conclusion

In this study, we highlighted the importance of socio-economic disadvantage and ethnic minority status in a situation that often leads to health inequalities. Understanding the existence of interrelated factors and the heterogeneity of communities is crucial, which is something that we argue is crucial when designing interventions aimed at health equity between Roma and non-Roma communities.

In this context, the COVID-19 pandemic has only exacerbated existing inequalities within the health-care system. This brings us to the importance of formulating public health policies that guarantee the right to access health care. Moreover, these policies must provide support for access to different health systems that is sustained over time.

Finally, this study has highlighted examples of how a lack of credibility in the health system has impacted COVID-19 vaccination levels. More research, policy and public health measures are needed on the potential long-term community health effects of such behaviours.