Is it a scandal that around 8
million Roma fall just outside the
healthcare system?
A qualitative study exploring access to the health
insurance and health care for Roma staying in Sweden
Author: Nataliia Tsekhmestruk
Dedication
To my lovely family, my parents - Anna and Serhii, my brother – Roman, my grandparents – Ivan and Mariya, the one I am blessed to visit every time I am in Ukraine. And for those who are in my heart – Kseniya, Olga and Vasyl. Thanks to you and your support I am who I am today! Thank you! I love you so much!
Also, I would like to dedicate this work to people I write about – the Roma!
“Whenever Gypsies are found, they are from elsewhere. Everywhere from nowhere. Present all over the world, no nation claims or protects them. On the contrary, the general tendency is to consider them as parasites and to reject them on a first sight. Described as vagrants, vagabonds, pick-pockets, artful dodgers and even as cradle-snatchers, these nomads. They are singular only in the negative. Their language is jargon, their offspring brats, their dress tawdry and their women loose. Not only are their leaders’ tyrants and their means of subsistence dubious, but their style of life generally seems pathological. Is this negativeness the only force unifying the six to twelve million Gypsies who have been dispersed over the land for centuries? Is the lot of thief, fortune teller, itinerant entertainer, attributed to them by common conviction the only heritage they share? Or can they, on a contrary, escape from persecution and the label attached to them in order to safeguard their cultural specificity?”
Acknowledgment
I would like to start by expressing my deepest gratitude to the participants from the NGO’s who participated in this study. You showed me your trust and believed in me. You believed, that I can bring and share your experiences, knowledges and thoughts with others and write about it. Thank you so much!
To my supervisor, Isabel, thank you so much for supporting me and for your patience! I have had challenging time while working with this thesis, but never have I felt that this influence how you think about me. I learned so much during this time. Thank you so much for guiding, sharing and showing me the amazing “world of research”.
Thank you for the organization Doctors of the World in Stockholm for giving me this opportunity to be a part of such a wonderful team. The journey of this work started from the first day of my internship in the organization.
My deepest gratitude to the organization Swedish Institute for giving me the possibility to pursue my master in Umeå University. I will always be proud of being Swedish Institute Scholarship student!
I would like to express my gratitude to all the staff at the Department of Epidemiology and Public Health for taking such a good care of us, students coming from all over the world, so we feel as at home in Umeå. This was one of my best years.
Thank you, Zenya, my “sister”, even if we are not connected by family relations, and Natalie – my lovely friend! Thank you for being in my life!
Abstract
Introduction:
The Roma is the largest ethnic minority in Europe, estimated to be over 11 million (1.35% of Europe’s total population). At the same time, it is the most vulnerable and marginalized community, facing many challenges in everyday life, such as low levels of education, unemployment, poverty, limited access to information, social and health services as well as racial discrimination. Roma people have great health needs and lack access to the European Health Insurance scheme. Efforts by governments across Europe to address these health inequities have been relatively weak and Roma suffer poorer access to health care, health insurance, education and employment in every country that they inhabit in comparison to the majority population. There are studies exploring the health situation of the Roma, but very limited information is available about the availability of the European Health Insurance for Roma and access to health care in Sweden. The general aim of this study is to explore access to the health insurance and health care for Roma staying in Sweden.Methods:
A qualitative design methodology has been applied in this thesis. Four non-government organizations in Sweden were contacted and six in-depth interviews were done with professionals and volunteers from those organizations. Questions were asked about experience of working/volunteering and assisting Roma people in accessing health care in Sweden. The interviews also addressed barriers faced by Roma to obtain the European Health Insurance in Romania. The data was analyzed using inductive thematic analysis.Results:
Four themes were developed during the data analysis. The first theme “A bureaucratic and unfriendly system makes it hard for Roma to get insured in Romania” is about the role of the Romanian government in maintaining the (disadvantaged) situation of Roma people. The second theme “Difficult to access the health care services in Sweden, without active European Health Insurance” explains the situation of Roma people, when they seek medical care in Sweden and the importance of having an active European Health Insurance. The third theme “European Union policies do not respond to the health care needs of Roma” elaborates on the governance of the whole health insurance scheme from the EU level and how it is not designed to fit the needs of the Roma. The fourth theme “The history of racism and discrimination of Roma is the root of this situation” is about how society perceives Roma people and how they have been treated for a long time as slaves, with labels including discrimination and racism.Conclusion:
This study highlights that access to health care for Romanian Roma people staying in Sweden cannot be seen as a separate issue from that of the situation of access to the health insurance scheme - the National Health Insurance and the European Health Insurance - for Roma in Romania. The study highlights that access to health care and the European Health Insurance for Roma in Romania is often determined by the (dis)functionality of the health system in Romania, corruption and bureaucracy. Without an active European Health Insurance, Roma cannot access health care in Sweden. As an additional burden, they are requested to prove that they can access health care as undocumented people. European Union regulations and laws make it difficult for people who do not have official work to obtain European Health Insurance. The history of racism and discrimination is, potentially the root of the situation. Even today Roma are judged with prejudices, stereotypes and pre-existing beliefs that makes access the health insurance and health care for Roma staying in Sweden even more difficult.Content
Dedication
... iiAcknowledgment
... iiiAbstract
... ivContent
... vList of maps, figures and tables
... viiAbbreviation list
... viiiIntroduction
... 1A short introduction of the history of Roma ... 2
Roma health ... 2
Roma in Romania ... 3
The National Health Insurance in Romania
...
4The European Health Insurance and how it works in Romania ... 5
Roma migrants from Romania in Sweden ... 5
Health and, access to health care for Roma in Sweden and the EHI ... 7
Aims of the study
... 8Methodology
... 9 Study design ... 9 Study settings ... 9 Study participants ... 10 Data collection ... 11 Data analysis ... 12 Ethical considerations ... 14Results
... 15A bureaucratic and unfriendly system makes it hard for Roma to get insured in Romania ... 17
Difficult to access health care in Sweden without active European Health Insurance... 20
EU policies do not respond to the health care needs of Roma ... 23
The history of racism and discrimination of Roma is in root of this situation ... 25
Description of the model ... 28
Discussion
... 29What happens with access to health care and the health insurance for Roma ... 29
EU policies do not respond to health care needs of Roma ... 34
Methodological considerations
... 40Reflexivity ... 40
Trustworthiness ... 41
Study limitations and strengths ... 43
Implications of the study
... 45Implications for further research ... .. 45
Implications for practice ... 45
Conclusion
... 47Rerefences
... 48Appendices
... 54Appendix 1: Different forms of the EHI ... 54
Appendix 2: Informed consent (English version)
...
55List of maps, figures and tables
Figure 1: Final themes and sub-themes ... 16
Figure 2: Model illustrating the main findings ... 28
Table 1: The informants age, gender, occupation, nationality, and organization represented ... 11
Table 2: Qualitative thematic inductive analysis – phases and descriptions of the analysis ... 12
Abbreviation list
CEE: Central and Eastern Europe CoE: Council of Europe
EEA: European Economic Area EHI: The European Health Insurance EHIC: The European Health Insurance Card EU: The European Union
GPs: General Practitioners
HEM: Homeless EU migrants (Hemlösa EU migranter) LIV: Doctors of the World (Läkare i Världen)
MCS: Self-reported health, mental score NHI: The National Health Insurance NHIC: The National Health Insurance Card
NHI number: The National Health Security Number NGO: Non-government organization
NOR: The National Office for Roma
Nätverket för utsatta EU medborgare: The Network for Vulnerable EU citizens OSCE: Organization for Security and Co-operation in Europe
PCS: Self-reported health, physical score SIH: Social Insurance House
SOC: The sense of coherence
Introduction
This thesis explores the situation with availability of the European Health Insurance (EHI) for Roma people in Romania and their access to health care in Sweden from the perspectives of professionals and volunteers from non-governmental organizations supporting Roma people in Sweden. This thesis aims to contribute to understanding the barriers of the process of obtaining the EHI by Roma people in Romania and how this influence their access to health care in Sweden.
The inspiration for this study was my volunteer internship for the organization Doctors of the World in Stockholm. While working as an intern, I worked with many Romanian Roma migrants (some of them were also from Bulgaria, but the majority was from Romania), that were visiting the free medical clinic, provided by Doctors of the World. At that time, I noticed that many Roma people did not have the EHI or had it but it was expired. EHI is the health insurance that helps to access health care abroad easier and provides access to health care system on the same conditions as for the citizens of the country of stay. EHI was introduced in EU (European Union), European Economic Area (EEA) and Switzerland. To be able to have active EHI, person need to have the National Health Insurance (NHI). But Roma people often lacked the National Health Insurance (NHI) from Romania. NHI is provided for those who pays medical insurance taxes and for specific groups, for example children under 18, people receiving minimum income or social support. Without an active EHI, access to the health care facilities in Sweden was very difficult for Roma, if not impossible. Thanks to free clinics, such as the ones Doctors of the World organises, Roma people can receive the medical attention they need.
Roma are EU citizens and, as all EU citizens, they have the right to access the EHI, which allows them access to health care in foreign EU countries. Even though they have rights as EU citizens, a significant number of Roma live in extreme marginalization in both rural and urban areas with very poor socio-economic conditions, facing discrimination, violence, unemployment, poverty, bad housing, poor health conditions, and very limited access to social and medical services (1).
A short introduction to the history of Roma
Roma are one of Europe’s biggest and most disadvantaged ethnic minorities. They face many challenges in everyday life such as very low access to education, unemployment, poverty, limited access to information, social and health services as well as racial discrimination (2). The health and social systems of many countries in Central and Eastern Europe (CEE), where most Roma live, fail to reduce social and educational inequalities and establish rights to minority groups, particularly the Roma. Europe generally has failed to fully integrate and uplift the Roma and often the Roma themselves are blamed for that (3). Discrimination of the Roma minority is still present nowadays. Recognition of different problems that Roma people face in CEE is growing, but existing research does not allow us to fully understand the situation (4).
Concepts and history
The term “Roma” comes from the Romani language and it started to be used as the replacement of the term “Gypsy” (the label “gypsies” arises from the legend that they were on a pilgrimage from Egypt in penitence for once forsaking Christianity). It has not always reflected the preferred identity of individuals and communities themselves. The term “Roma” includes a broad diversity of groups, with distinct languages, traditions, histories and socioeconomic circumstances, that live mostly in CEE countries (3,5). “Roma” is more about those populations who take this label as belonging to the community and speaking Romani language, and much less about the lifestyle, social status, or occupational patterns (6).
Roma people take their origins from Northern India in the 11th century. In Romania, Roma people are seen from the 12th century (7). Roma history is covered all the way with oppression, discrimination and punishment on the basic of ethnicity during 16th, 17th and 18th century. The 19th century was one of the first times when Roma rights were legalized, and it was also the time of ending the slavery. Later, during the end of the 19th century and early 20th centuries, a form of slavery returned when half a million Roma died in Nazi camps (some authors specifies 1.5 million Roma) (8,9). During the pro-Nazi regime in Romania (1941-1944) led by Ion Antonescu, more than 25 000 Roma were deported to Transnistria to the territory occupied by the Romanian Army with the aim to make the Romanian nation “pure” (10,11).
Roma health
significantly worse health when compared with the majority populations. This includes lower self-reported health and higher mortality risks, lower life expectancy, increased burden of communicable diseases, increased morbidity from non-communicable diseases, increased rates of suicide, and poorer infant and child health (12).
There are large inequities in Roma health compared to the non-Roma population in CEE. Research in CEE countries showed that Roma have been excluded from social policies, are at higher risk of poverty, have lower level of education and employment, poorer living conditions, poor health (9,13–15), higher level of morbidity and mortality (8), infant mortality (16), lower life expectancy compare to the non-Roma (17,18) and discrimination and racism in health care facilities (19). Rates of communicable and non-communicable diseases, tuberculosis, hepatitis, and skin diseases, alcohol abuse and injection of illicit drugs is much higher among Roma population compared to non-Roma (17).
The health needs of the Roma population lacks visibility. More research is needed, but there is also the need to explore locally sensitive mechanisms that can help the understanding of the needs of those minorities and to start tackling them (14). The health of the Roma population presents a major challenge to public health professionals, especially in some countries where there may be discrimination, social exclusion and racism.
Roma in Romania
The Roma population in Romania is the second largest minority group after the Hungarian minority. In 2011, around 620,000 Roma people, 3.2% of the total resident population were living in Romania. This number could be larger than reported because some of Roma do not state their identity due to fear accumulated through the history (deportations) and also because of the assimilation during the communist period, when even the use of the Romani language was forbidden (20,21). According to unofficial estimates from the European Roma Rights Center, the number of Roma people in Romania is around 2 million (22).
Many of the Romanian Roma were settled in the territory of Romania before the formation of Greater Romania in 1918. Their history in the territory of Romania started with a long period of slavery and a misunderstanding of their nomadic way of life, culture and traditions. When industrialism came in the second half of 19th century and the first half of 20th century, Roma lost the possibility to earn a living by making baskets or in metalworks. Horses, gold or other belongings were confiscated from them and instead they started to do some work in production (10).
the early 1950s most of the Roma were sedentary (settled). At that time, they were under the process of forced employment and education. But it was difficult to benefit from education as it was not in their native language Romani, because Roma had not been accepted as a national minority. During socialism, Roma people received mostly semi or unskilled jobs in heavy industry or in the state cooperatives and were forced to live on the outskirts of towns and villages or in houses that were much worse than the ones for the majority population. All this shows that Roma were seen rather as “second-class citizens”, segregated and separated from the of the population (10). Under communism, many Roma families achieved a state of economic stability through a combination of traditional work activities, that they used to do like making baskets, and working on collective farms and in state-owned mines and factories
(6). When communism collapsed, more and more people showed negative attitudes towards
Roma, and racist attacks became more common (9).
Migration of Roma from Romania is part of a more general process of migration of the Romanian population. This process is an outcome of the transformations that Romania has undergone since 1989, such as the dissolution of collective farms, the decline of state industry, privatization of land, and the opening of the borders. Migratory movements of Roma during second half of the 20th century can mostly be put down to such factors as war, political and economic instability, racism, discrimination, or systematic violation of human rights (23).
National Health Insurance in Romania
Every person who works in Romania and pays medical insurance taxes is automatically insured by the Romanian state. Beneficiaries of unpaid medical services are also: children under 18, persons receiving minimum income or social support, persons with disabilities, who have social support, spouses of the insured persons (if they are not employed), parents of the insured person (if they have no income and they are registered as being covered by the insured person), people who do not work legally, but who pay their insurance monthly - 5.5% of the minimum wage, and registered unemployed persons (A. Furtuna, personal communication, 13 January 2017).
People who cannot give proof of being insured, receive medical services only in case of emergency and diseases with a potential of spreading in the population (24).
The European Health Insurance and how it works in Romania
From January 1st, 2006, the EHI was introduced in EU, EEA and Switzerland. While travelling abroad, studying in another country, or going for a business trip, in case of medical problems and if medical treatment is required, the EHI makes the process of accessing medical care in a foreign country more easy (25). Medical service and treatment provided for those who have the EHI includes maternal care for pregnant mothers and managing the symptoms of pre-existing or chronic conditions. It is not a substitute for having proper insurance (if for example one is travelling for a vacation abroad, the proper travel insurance should be present), but rather a complement. It does not automatically entitle you to free medical care, since the provision of care varies from country to country (25). There are different forms of the European Insurance which depends on the reason for which one is applying (see appendix 1). In regards to the law from 2006 about EHI and NHI, the holder of EHI can receive medical treatment in another EU country for the period of no longer than 6 months, which counts as a temporary stay (26).
All citizens of Romania who are insured in the social health insurance system and provide proof of payment for the social insurance contribution for health can obtain the EHI card (27). The EHI card gives its holder the right to obtain necessary medical care during a temporary stay in a Member State of the EU but does not include the situation in which the insured moves to a EU Member State to receive medical treatment (27).
To obtain the EHI in Romania one should have the NHI and be insured for at least 5 years and possess social national health security number (NHS number) (28,29). The EHI in Romania is valid for 1 year (30). For those who are working, the application can be done through the employer’s company.
Roma migrants from Romania in Sweden
It has been estimated that 50,000-60,000 Roma live in Sweden (23), however some sources give other numbers of Roma people in Sweden and it estimates 35 000- 65 000 (22). The Roma are one from five national minorities in Sweden, and because of that their culture is acknowledged as part of the common Swedish heritage. Despite these rights the Swedish Delegation for Roma Issues reported that the Roma are one of the most exposed groups when it comes to discrimination, not only in Europe, but in Sweden as well (34). A survey done in 2003 showed that 90% of the Roma respondents consider Sweden to be a racist country, hostile to Roma people (34). In Sweden the historic Roma population was called “zigenare” from the beginning, but more recently they have been called “Romer” (35).
The National Board of Health and Welfare, between 1960-1980, was one of the public authorities that defined Roma population based on race-biological terms as a burden to society. They said that this group was unwanted and the Board also recommended that the group be subjected to sterilization (36). Over the course of 40 years (1934-1974) Sweden had legislation in place that prescribed sterilization in certain circumstances (36).
In February 2007 the Delegation for Roma Issues was established. The main aim of the Delegation was to advance the work on improving the Roma situation in the country with the main aim - to fight against stereotypes and bridge the trust gap. The report of the Delegation for Roma produced by 2010 has been called the White Paper. The White Paper was named “The Dark Unknown History – White Paper on Abuses and Rights Violations Against Roma in the 20th Century” (37). Commission against Antiziganism was established soon after the White Paper was launched.
While those measures focused on historic Roma populations in Sweden rather than recent arrivals – which is the focus of this study-, they signal persistent discrimination against the Roma people (38). Roma people who arrive in Sweden in recent years are most often generally referred as “EU migrants” or “vulnerable EU citizens” (39). Most often they are begging, sitting outside the big food stores or shopping centers. The study, “When poverty meets affluence. Migrants from Romania on the streets of the Scandinavian capitals”, found that 86% of beggars surveyed in Stockholm identified themselves as Roma, but without specifying the country of their citizenship (40).
million EU citizens and it is Romania, and any other countries, where Roma reside, that should look for solutions. (6,41).
Health, access to health care and EIH for Roma in Sweden
It is difficult to study the Roma population, despite all the attention to the situation of the Roma. Research on the health status and access to health services to this population is limited in general and mainly available on CEE. One of the major factors that influence this situation is that belonging to the Roma community involves speaking about such topics as race and ethnicity, which gives a negative perception from the Roma community and they would rather not to speak about it (8).
A pilot cross-sectional study about the sense of coherence (SOC) and self-reported health among Roma people in southwest Sweden (34) showed that self-reported health in physical score (PCS) and a mental health score (MCS) were significantly lower among the Roma people compared to Swedes – PCS: Roma 46.0 (Swedes 52.0) and MCS: Roma 47.5 (Swedes 52.6), moreover the SOC score for the Roma people (54.4) was significantly lower than of the Swedes (62.0). The low SOC in general is an indication of the marginalization and exclusion of some groups of people from the society and lower scores in self-reported health is an indicator of the serious health risks of some groups. This pilot study has showed that Roma are marginalized and excluded from the society with serious health risks (34).
The basic principle in the EU is that its citizens, Roma people included, should be able to receive care in other member states, when having the EHI card, the “blue card”. The costs of care are then repaid by the person’s insurance country (33,42). For those people who are not residence in Sweden and do not have the “blue card”, which is majority of the Roma people from Romania, the starting point is that they themselves must pay for their health care costs out of pocket.
According to Swedish regulations, responsibility for health and medical care under Swedish national law is described by the Health and Medical Care Act (1982:763). This states that the main aim of health care is to ensure good health for the entire population with equity for all people.
The decision about what exactly is included in this treatment has been given to medical professionals, as no guidelines have been produced with an exact interpretation of what this act means.
In 2014 the National Board of Health and Welfare in Sweden issued a guide for “care for undocumented” and in April 2015 it was stated on the National Board of Health and Welfare website that vulnerable EU citizens are covered by this law (42,43). According to the law the county councils (regions in Swedish) are obligated to provide for adults staying in Sweden without permission (they have been called undocumented, because of not having the documents that proves the permission to stay in Sweden) the same care as asylum seekers in Sweden (33,42). This includes subsidized care and dental care that cannot be postponed, maternal health care, abortion care, contraception counseling, medication prescribed in connection with this care, and health examinations (33,42). The care is subsidized in accordance with the provisions of the regulation (2013:412) on health care contributions for foreigners staying in Sweden without the necessary permits (33).
Under regulation (EC) No 883/04 on the coordination of the social security systems, EU citizens (also applies for EEA countries and Switzerland) have the right to necessary care in another member country, when having the EHI. If the EU citizen is insured in the home country and can present the EHIC, the person is certified to care in Sweden in accordance to the national health system regulations (33,43). But if the patient lacks the EHIC, as for example the majority of Roma, the full price for the care in cash or invoice, is requested to be paid (33,43). The insured person then has the ability to receive compensation from their social insurance institution in their home country (33).
Roma experience difficulties in accessing health care and health insurance in their countries of residence or staying, however there is limited research on access to health care for Roma in Sweden and how situation with access to the EHI for Roma in Romania influences access to health care for Roma in Sweden.
Aims of the study
Methodology
Study design
A qualitative methodology with inductive thematic analysis was used for this study (44–47). Thematic analysis is a theoretically flexible approach used to analyze qualitative data. This method is used for identifying, analyzing and reporting patterns/themes within the data, that organizes and describes the data in rich detail. Thematic analysis can be used within different theoretical frameworks. Often it is based on experiences and meanings from the participants perspective, or it can have an approach that examines the ways in which what happens (event, or experience) are the effects of a range of discourses operating within a given society. It can be also a “contextualist” method, that acknowledge the ways individuals make meaning of their experiences (44).
This study uses an inductive thematic analysis. The inductive analysis themes identified are strongly linked to the data themselves. Inductive thematic analysis is the process of coding the data without trying to fit into a preexisting coding frame or the researcher’s analytic preconceptions. This form of thematic analysis is driven by the data. The main aim in inductive thematic analysis is to do open coding and let the data speak and “guide” the researcher, so the specific research question can evolve through the coding process (44,45).
Study settings
This study took place in the capital of Sweden, Stockholm, the biggest city in Sweden with a population of 952 028 inhabitants as of 2017. Stockholm city belongs to the Region Stockholm. In total, there are 21 regions in Sweden.
This study was conducted in collaboration with four organizations which support and assist the Roma people in Sweden: Doctors of the World (Läkare i Världen, LIV), Homeless EU migrants (Hemlösa EU migranter, HEM), Convictus and The Network for Vulnerable EU-citizens (Nätverket för utsatta EU medborgare) in Stockholm.
It is important to recognize that these organizations work not only with Romanian Roma migrants, but with migrants that are coming from different countries. The work of these organizations in Stockholm focus mainly on Roma migrants coming for the most part from Romania, but from other counties as well.
migrants, for those who have no access to regular health care. In addition to the medical clinic, Doctors of the World runs psycho-social support groups for those who need psychological help and legal support, as well as assistance to undocumented migrants/asylum seekers with legal issues (48).
Homeless EU migrants (HEM) is a non-for-profit, non-governmental organization, group of volunteers established in Sweden in 2014, working to provide support for Roma people. They mainly work in Stockholm but also have a group of volunteers in Gothenburg. They help Roma people with different matters in Stockholm, such as visiting health care facilities, finding places to stay, and any other daily routine questions. All participants of the organization working in Stockholm are volunteers (49).
Convictus is an international organization, that is active in Estonia and Ukraine as well as Sweden. The work in Ukraine and Estonia is mainly directed towards help and support for HIV and drug abuse. The main work in Stockholm is providing a place to stay for the night, some food, and clothes for homeless vulnerable people, many of whom are Roma coming from Romania. One of the main aims of the organization is to build a network within different organizations for better support of common actions towards help for vulnerable groups of people (50).
The Network of Vulnerable EU citizens was founded in 2013/2014. The Network’s main aims are “to be the center for the distribution of relevant information, for the exchange of experiences and coordination of civil society contacts with all levels of government, and to create debate and dialogue that contributes to more long-term solutions in their home countries”, as well as work with facilitation of contacts in Romania and EU countries “to contribute to change in attitudes to eventually counteract antiziganist tendencies” (51).
Study participants
the organization. Two main inclusion criteria were used to select the participants: the participant’s experience in the organization and the role of the participant in the organization. The sample included informants that worked in the organization as volunteers as well as employees who engaged in different matters when it comes to helping Roma people. All informants had completed at least a master university level and could freely express themselves in English.
The study included six participants, among them four woman and two men. The participant age ranged from 27 to 60 years old, with three participants aged under 30 years old. Among participants, three belonged to the organization HEM, one to The Network for Vulnerable EU-citizens, one represented both HEM and Doctors of the World and one represented both Convictus and Doctors of the World. The table below presents a detailed description of participants such as age, gender, occupation, organization they represented and nationality.
Table 1. The informants age, occupation, nationality, and organization represented by informants
Number Age M/F Occupation Nationality
1 30 M Volunteer, political
activist
Swedish
2 45 F Volunteer, judge Romanian
Swedish
3 28 F Volunteer, student Swedish
4 60 M Volunteer, former ambassador Swedish 5 27 F Volunteer Romanian 6 43 F Volunteer, social worker Romanian, Swedish
Data collection
Six interviews were conducted guided by a semi-structured interview guide (see appendix 2). The interview guide was developed after reflecting on the available knowledge about the subject and my experience with the topic gained during the internship at Doctors of the World. A pilot interview was conducted to understand what could be improved in the interview guide. A pilot interview was used in the analysis. Four main topics were addressed in the interview guide: experiences of Roma people to access health care in Romania; experiences of Roma people to obtain the NHI and EHI in Romania; experience with access to health care in Sweden; barriers and facilitators for accessing the EHI and health care for Roma in Sweden.
were carried out from February to April 2017 in Stockholm. Interviews were conducted in different locations: in the offices of the organizations, in Stockholm University’s main campus, and in a quiet public place, ensuring privacy. The interviews lasted from 40 min up to 1 hour 40 min. The language of the interviews was English. All interviews were audio-taped. A notebook was used to register additional information about the participants, as well as memos, comments, observations, and my ideas during the interview process.
Data analysis
All interviews were transcribed verbatim. The transcriptions were read several times by me and my supervisor to become familiar with the collected data. The transcription process itself contributed much in the process of familiarization with the collected information. During this phase notes were taken and, any ideas or thoughts during the coding process were also written down in the form of memos. Inductive thematic qualitative data analysis method was applied to analyze the transcripts (44). Table 2 below presents phases of thematic analysis that were followed in this study by using the guidelines of Braun and Clarke “Using thematic analysis in psychology”.
Table 2. Qualitative thematic inductive analysis – phases and description of the process by Braun and Clarke “Using thematic analysis in psychology”
Phase Description of the process 1.Familiarizing yourself with
your data
Data was transcribed, read couple of times, the first ideas was written with consideration of the notes taken during the interviews.
2.Generating initial codes Coding process was done. Data that was interesting and relevant to the research question were identified. Coding was done with the idea in mind to consider that the themes are very much “data-driven” in the inductive analysis.
In overall, coding process aims to code the content of the entire data set. It is done for as many potential themes/patterns it would be; extracts of the data are coded inclusively.
3.Searching for themes Coded data extracts were placed within the relevant identified themes. At this phase the relationship between codes, between themes, between different levels of themes was also considered. Some initial codes formed themes, some sub-themes and others were discarded.
4.Reviewing themes On this phase two levels of reviewing and refining the themes has been done. On the first level all the collected extracts for each theme has been read and considered whether they appear to form a coherent pattern.
the new theme could be created or those data extract were discarded from the analysis.
Second level involves similar process, but in relation to the entire data set. It is about consideration of the validity of the individual themes in relation to the data set.
At the end of this phase the “story of the dataset” was more or less understood and the picture about different themes and how they fit together was there.
5.Defining and naming themes The themes were looked up again and refined. On this stage identifying the “essence” of what each theme is about and determining what aspect of the data each theme captures has been done. The themes tried to be organized in the way, that the story behind each theme and what does each theme present is laying behind and is understandable. Identification of what is of interest about each theme and why was presented and the broader “story” about the data in relation to the research question. Ensuring that themes are not too much overlap between each other was also done. Names of the themes, that are concise, punchy and immediately give the reader a sense of what theme is about has been thought of also.
6.Producing the report In this part the final story of the data has been produced. The analysis tried be concise, coherent, logical, and tell the story of the data with enough data extracts, with not only be the description of the data, but deeper argument in relation to the research question.
From the beginning all the transcripts were coded line per line with the help of “OpenCode 4.03 software”. Codes were further examined to look for similar content patterns in the data. During the analysis process, codes and groups were developed according to the principle of constant comparative analysis. Constant comparative analysis is used in grounded theory method by comparing incidents to incidents, concepts to incidents and concepts to concepts (52). The use of the constant comparative analysis method in this study was adapted to thematic analysis. Fram, (53) argues that constant comparative analysis can be used in qualitative studies that are not based on grounded theory method to ensure the internal perspective in the analysis. Constant comparative analysis can also ensure that all the data are analyzed following an inductive approach.
Table 3. Table is illustrating the analysis process from transcripts to final themes
Text (transcripts) Codes Subtheme Final theme “The first thing is that it’s quite
difficult to go to the different health care facilities as Roma person. Even if you go with the Swedish guide like me. Most often you have to argue at the cash registry”
Difficult to access the health care for Roma Argue at cash registry
Negative attitude to Romanian EU migrants in hospital in Sweden
Difficult to access the health care in Sweden without active European Health Insurance
Ethical considerations
Before conducting the study, the study protocol was approved by the organizations that took part in the study and consent was obtained from those organizations. During the data collection, the purpose of the study as well as confidentiality was explained to the participants. All the participants were informed that their participation was voluntary and that they could stop their participation at any time. A written informed consent was signed by all the participants (see Appendix 3).
Results
This section includes a description of the themes, subthemes and the final model that links them together. The inductive thematic analysis process was finalized with the development of four themes: “A bureaucratic and unfriendly system makes it hard for Roma to get insured in Romania”, “Difficult to access the health care in Sweden, without active European Health Insurance”, “EU policies do not respond to the health care needs of Roma”, “The history of racism and discrimination of Roma is in the root of this situation”. Main themes and subthemes are presented in figure 1 and the final model, illustrates the connections between the four themes (Figure 2).
Figure 1: Themes and sub-themes A bureaucratic and unfriendly
system makes it hard for Roma to get insured in
Romania
Difficult to access health care in Sweden without active European Health Insurance
”Functional health care in Romania it’s as
to have food not to starve”
Roma people are not a part of the formal
economy Bureaucracy and corruption of the
system “Lack of knowledge
and lack of duties” from the government
To have “a blue card” -to receive healthcare at the
reasonable costs
”Argue at the cash register of the hospital”
to receive treatment
“Hospitals do not want to include Roma to the healthcare with reduced
cost”
EU policies do not respond to healthcare need of Roma
The history of racism and discrimination of Roma is in
the root of this situation
The change for Roma “have to happen on
the EU level”
“The normal door to the system is not there for them, so we
have to design the back door” Seen as “others”, as ”different” “Prejudices, stereotypes and preexisting believes” about Roma Roma are uneducated
A bureaucratic and unfriendly system makes it hard for Roma to get
insured in Romania
This theme elaborated on the way in which the government institutions operate in Romania and how this hinders Roma access to health care and health insurance. It also depicts the participants’ perceptions on how the health system in Romania functions, and its two key features: corruption and bureaucracy.
As one participant said: there is “no functional health care in Romania” [interview 1, Hem], while at the same time there is a big need for it. To have the health care system that works was compared by one of the participants as “to have food not to starve” [interview 1, Hem]. “And at the end health issues it what makes people mind the most. Functional health care is just sort of, like, it’s like having food enough not to starve. They have such problems daily, that if they could get rid of those, it would be a huge change in their life”.
(interview 1, HEM) The health system in Romania was described as dysfunctional, meaning that it cannot provide the needed treatment for all citizens equally. Roma population were often not receiving the needed health care support. One argued reason was that they were usually not insured in their home country.
“The impression I have got from their home country is that they don’t really get preventive health care, so as I have understood it, they can usually get acute health care. So, if somebody got a heart attack, they may get a health care, or any health problems related to that. But they would not get any health care to high blood pressure, since that costs. And they are not insured”.
(interview 1, HEM) The health system in Romania functions in a way that makes it hard to be part of it especially if you are not employed and are outside of the labor market. Roma people in Romania do not have access to the national health insurance because it is tied to employment, while the majority of Romanian Roma do not have formal jobs.
(interview 4, Network for Vulnerable EU citizens) Moreover, as mentioned by participants, lack in consistency in how rules were applied played a key role. Individual factors, such as who will deal with your application for the health insurance played an important role in how the governmental institutions operated in Romania, and it felt like “authorities in Romania are giving different answers depends who you talk to” or “in which municipality you live” [interview 3, HEM].
“When I ask people about how Roma can obtain the insurance card, I get different answers. And this is very typical in Romania… in Romania it’s very much depends who is responsible for this department and whom will I meet. Today I meet this person, this person wants to do like this, and this another person wants to do like that. So, it’s very hard and I remember talking with some people living in Romania about how it works (health insurance). Even they could not answer. So, it’s a lack of knowledge and lack of duties and, also, fatalistic way of living”.
(interview 2, HEM) Even if Roma people would have the insurance in Romania, as stated by some participants, they would have to pay extra for the health care, because of the corrupted health system in Romania.
“And on top of this there is a high corruption, so even if maybe you have to pay the legal fee within the society, the doctor that is going to treat you, wants some money to his hand. So, it’s very costly. It costs a lot”.
(interview 2, HEM) As one participant mentioned, the government in Romania has failed to build a transparent system with equal possibilities for all its citizens and the corruption “goes through all the layers from the bottom to the top and so you have to pay extra for the health care” [interview 4, Network for Vulnerable EU citizens].
(interview 2, HEM) Participants also said that the authorities were not showing much support for Roma in getting the health insurance and they explained this by “lack of knowledge and lack of duties from the governmental institutions” [interview 2, HEM] and that the government “do not have interest in people to get this insurance” iInterview 3, HEM].
As participants highlighted, because of not being able to access the preventive treatment in the long term, Roma people have worse health conditions compared to most of the population in Romania and they need much more health treatments when compared to the population in Romania. This means that more resources (financial, health care personnel) would be needed to provide adequate health care for them and that could be the reason why the government is not interested in Roma people getting health insurance.
“…because they have not been insured for long time, they have extremely poor health. So, from the purely theoretical perspective insuring them it’s a quite expensive since they are probably going to need much more health care than the regular person”.
(interview 1, HEM) Adding to this, as Romania is obligated to return money back to the state where the medical help has been provided, Romania might not be interested in paying for Romanian Roma people as they have poor health conditions.
“Probably the biggest problem is that it will raise the cost for the Romanian agency. Or for the Romanian state and then they would really not like to cooperate. Because they don’t want to reimburse the money later for Sweden and they know that this is a people with bad health and they are staying in other countries a lot, so they would not really have any interest…”
(interview 3, HEM) This theme elaborated that bureaucracy and corruption of the governmental institutions; dysfunctional health system, which does not provide needed health care and health insurance for Roma; dependability of the insurance scheme on the employment; lack in consistency in how rules to receive the health insurance were applied were the main challenges for Roma in Romania and prevent Roma to receive the health insurance.
back to the state where the medical help has been provided for Roma stop Roma on a way to obtain the health insurance.
Difficult to access the health care in Sweden without active
European Health Insurance
If the situation in Romania did not facilitate Roma people to get health insurance and access services, the situation does not improve when they migrate to Sweden, as this theme describes.
It is difficult for Roma people to access health care in Sweden without the active European Health Insurance. To have the active European Health Insurance they need to have the National Health Insurance in Romania, which in most situations is connected to employment a requirement that most Roma people cannot fulfill.
Participants expressed “the point about the “blue” health insurance card is not having the card in itself, but to be able to receive health care at reasonable costs” [interview 1, HEM]. This means having the same access to health care in the receiving country as its citizens, and not being treated just as a tourist, where you would need to pay much more money for health care.
Participants highlighted that the main importance of the European Health Insurance, the “blue card” as people used to say because of its color, is to have it active. However, to have an active European Health Insurance Roma people need to be insured in Romania which, as we described in the first theme was not an easy task. As participants said: “the blue card” means something when you are insured back home” [interview 3, HEM].
“…the card is tight to the insurance that you have in your home country. Just having the EHI card does not do anything for you, if you are not insured in your home state”.
(interview 1, HEM) Participants shared that, Roma people may have worked for some time back in Romania, and have received the National Health Insurance and the European Health Insurance, but as they stopped working, the European Health Insurance became inactive. To sustain having the National Health Insurance in Romania after losing a job one needs to pay monthly contributions for the insurance card to remain active otherwise after losing the job the card is no longer active.
(interview 1, HEM) When Romanian Roma people seek medical care without having the active European Health Insurance, they have many difficulties. When it comes to the general attitude from the hospitals to Roma, it has been noted by participants of this study that hospitals in Sweden tend to have “negative attitude to Roma people” [interview 2, HEM]. Participants also said that this negative attitude could be explained by “lack of knowledge” [interview 3, HEM] and “prejudices, stereotypes, and preexisting believes about Roma” iInterview 1, HEM].
As participants explained, this differentiated treatment starts from the hospital’s admission/cash register, where all care-seekers are registered and directed to the needed health professional. At the time of admission, Roma people are asked to pay for the visit. Often they are asked to pay a full price, as European tourists, since they are not being considered as undocumented migrants.
“I mean, the problem at the cash registry, I mean where you have to argue with the nurses there sometimes for half an hour. Sometimes that’s bothering me the most. And they all said, by the way, that all have an instruction to ask for some form of prove that this person have been here [in Sweden] for more than 3 months”.
(interview 1, HEM) “It’s like we [the hospitals] don’t care if they can be considered as undocumented, “we” want the money. So, you better pay “us”.
(interview 2, HEM) Any person that stays in Sweden for more than 3 months is considered undocumented. When it comes to the Romanian Roma people, like for all other undocumented migrants, they are supposed to have the same access to health care as asylum seekers in Sweden, which means that they have access to the emergency treatment in the same way as the citizens of Sweden. “And yet, the people at the cash registry keep telling me that no, I have been instructed to ask for some form of registration to prove that this person have been in Sweden for at least 3 months”.
In the cases where I went to the hospitals with [Roma] people who have been here for more than 3 months, they [at the hospitals] asked them [Roma people] like if they have been signed up for the Arbetförmedlingen [The Labor Office] or Migrationsverket [The Migration Agency]. No, they did not sing up with Migrationsverket, because they are EU citizens. And I am saying, no, they didn’t sign up with Arbetsförmedlingen, because they are illiterate, they would not know how to do it. As I said that, they ask if they are registered anywhere. I said no, they are not. I mean in the sense that you mean. And then they will say, ok, but then you will need to pay 3200 SEK. And I know legally speaking that is not truth”.
(interview 1, HEM) Participants argued that negative attitudes towards Romanian Roma could be related with staff not understanding the real meaning of how it is not being able to read and to write and not being able to make choices in life, which is hard to understand for people in Sweden, where the situation is so much different.
“I think it’s also the lack of understanding of how it works when you can’t read or write even if it’s your own language. So, I think quite often this people [Roma] are considered to be retarded, but they are not. And that’s a very common. And it’s 200 years differences between Sweden and the countryside”.
(interview 2, HEM) Finally, bad treatment towards Roma, can also be related to, as one participant put it, “hospitals [in Sweden] want to save money, and do not want to include this group [Roma]” [Interview 3, HEM] to the health care in Sweden.
“It’s about how to apply the rules and if they have like, there are different rules for EU citizens and for people who are living illegally in Sweden and if EU citizens have been in Sweden for more than 3 months they supposed to treated as undocumented. But mostly hospitals they want to save money, so they do not want to include this group and then someone needs to say that this is how you supposed to do. It’s just an example, but there are other such cases”.
(interview 3, HEM) “Which makes me think that they play some kind of “double game” in the hospitals. In sort of they want to make it - to raise the threshold to the emergency room as high as possible, even if they know, they cannot, they don’t have the right to do that”.
This theme elaborated that the main challenges for Roma to access health care in Sweden is lack of the EHI or not active EHI. Not having the EHI when seeking health care in Sweden, influence the attitude of health care staff towards Roma. Situation at the hospital’s cash register, where Roma are seen with prejudices and stereotypes, and asked to prove of stay in Sweden for more than three months to receive health care, or otherwise a full price as for European tourist is requested is something Roma faced when reaching health care services in Sweden. Another obstacle for Roma to be seen as undocumented migrants and have the same access to health care as asylum seekers, as argued by participants, is that hospitals want to save money and do not want to include Roma people to the health care on the same conditions as asylum seekers.
EU policies do not respond to the health care needs of Roma
This theme described the influence of political decisions from the EU level on the situation of access to the European Health Insurance for Roma. The problems that Roma face both in Romania and Sweden in getting health insurance and accessing healthcare are connected with global and regional decisions, taken at the European level. Real long-lasting changes for Roma, when it comes to access to health insurance, would only happen with policy changes that go beyond individual countries and include changes at the European level, to facilitate Roma getting access to the European Health Insurance.
Participants described this by stating that the “situation with Roma people is political” [interview 1, HEM, interview 4, Network for Vulnerable EU citizens] meaning that it is influenced and depends upon political decisions from the European level as well. Participants underlined that to change the situation with access to the European Health Insurance for Roma people the changes “probably have to happen on the European level somehow” [interview 1, HEM], referring to changes in the regulations and the laws regarding the process of obtaining the European Health Insurance, but also to strategies in supporting and assisting Roma people with getting this insurance.
“The only thing that I can see really is to get some form of outside help in order to subsidize the cost of their pre-conditions. As a lot of people have such a bad health situation and they cannot really effort to pay this monthly cost for the health insurance. That would be good if they just get socialize health care.
chances for getting the insurance very limited. As was said by one of the participants: “The normal door to the system is not there for them, so we have to design the back door” [interview 4, Network for Vulnerable EU citizens].
As participants expressed, the way the health insurance system works nowadays prevents Roma from being a part of it and there is a need to find alternative ways, to modify the system, or to construct another system:
“…construct a system which makes it possible for people who are in need to have the same rights as everybody else, but since they are so poor that have not been able to get in to the system, then they cannot benefit from it. ….and since this is for the minority, we will have to use other systems or other instruments perhaps. We have the same problem of falling outside, should we really help them to do this, but once again you have to be very practical and see what is possible and what is best for them, and in the long run also best for us because we will function”.
(interview 4, Network for Vulnerable EU citizens) Participants gave suggestions of how such a system could look like: it should work “outside the formal economy” [interview 4, Network for Vulnerable EU citizens] and give possibilities to benefit from the health insurance scheme for individuals in diverse work and life situations:
“But it’s also because they are not part of the working force. That’s a big problem because the migration rules in EU seem to be designed for people who are having employments. So, that’s probably a big reason why they have this problem. And, so, I think the main solution in the future is that EU rules are updated to also unemployed and people who work outside the formal economy”.
(interview 3, HEM) The main challenge that elaborated from this theme is about influence and dependability of the Roma’s access to health insurance upon political decisions from the European level. The problems that Roma face both in Romania and Sweden in getting health insurance and accessing healthcare are connected with global and regional decisions, taken at the European level. The way the health insurance works by being only accessible for those who are
The history of racism and discrimination of Roma is in the root of
this situation
This theme described how the discrimination that Roma people have suffered during history has influenced their current living circumstances, including their health and access to health care.
The history of the Roma population has strongly influenced their lives; for long time countries saw them as worthless, they “were sold as the kettle on a market”, and had been seen “as nothing but a slave”.
Participants stated that discrimination has been rooted so much into the history, that “it’s hard to really overcome it” [Interview 4, Network for Vulnerable EU citizens].
“…Roma was slaves until 1864, I think. They were sold as kettles on the market. And I have met a lot of people who were extremely nice, but they could say nasty things about Roma… discrimination is so deeply rooted…”
(interview 4, Network for Vulnerable EU citizens) One of the examples of how the long history of discrimination and racism has influenced the life of Roma people nowadays is the attitude of Romanian people towards Roma in Romania. Romanian people look at Roma as “different”, as “others”, which also influenced what kind of access to social and medical services Roma have in Romania.
“So, it’s still that kind of thinking about them. Like they [Roma people] are not like us [other people in Romania], they don’t have the same value and so on”.
(interview 2, HEM) Participants also expressed that the history separated Romanian people and Romanian Roma migrants and that “they don’t see themselves as one, as unique but as different: Roma and Romanians, they do not support each other” [interview 4, Network for Vulnerable EU citizens].
“And there have been tries to integration. I mean there are lot of Roma who don’t want to be with Romanians and it’s on both sides. It has been so long, so it’s hard to break it. It has been through generations”.
Their culture and believes could also influence how they thought about the insurance card and if they thought that they needed to have it or not.
“It’s a different way of thinking. We, in Sweden, want the insurance and they [Roma people], in Romania, go with the God”.
And because of not having the support from anywhere they are “extremely vulnerable” iInterview 4, Network for Vulnerable EU citizens].
“…but then the Roma population is extremely vulnerable since also the general population dislikes them and does not cooperate with them”.
(interview 4, Network for Vulnerable EU citizens) Because of this history of racism and discrimination they are “falling between the normal rules that are supposed to help people” [interview 3, HEM]. That means that rules and regulations that can be applicable to other people, like for example having the European Health Insurance, are not so easily attainable for them.
“I think this is [Roma people] the most unprivileged group. It’s really the one that is falling between the normal rules that are supposed to help people. Since they are EU-citizens, but they don’t have, what they expected to have as EU-citizens…”
(interview 3, HEM) When it comes to the situation with access to healthcare in Sweden, participants expressed that Roma people are met with “prejudices, stereotypes, and preexisting believes” [interview 4, Network for Vulnerable EU citizens] in the health care facilities in Sweden, which is also based on the ideas about who the Roma people are, which is also influenced by the history of Roma people.
“So, for instance they had a nurse that took care of us [Roma person and the informant]. The man wanted to have a new tooth, he didn’t want just a temporarily fix. So, we asked for that, but the lady said, no. And when we asked for the clarification, she said that that will cost you 30 000 SEK and since I knew that because he was a victim of crime, he could probably get this money from crime insurance. So, I said that it’s ok. It is what we want. And it was like…even if she tried to be helpful and, sort of, explained to us… and she probably thought for a while that I was actually asking for the dental implants and later, we would not pay for it”.
Participants expressed that discrimination is what led Romanian Roma people into poverty, which has also resulted them in living in a certain way. Because of the discrimination they face more troubles in getting jobs, which means that they had a lower socioeconomic status. This could also lead them to not being able to afford to pay for the health insurance the same amount of money that for others, could be considered affordable.
“I think that they [Roma people] have to have [to pay for the EHI] too much. Well for them it’s much. I think it’s something like between 10 and 20 EUR per month. And it is quite a lot for them. If they happen to have it, they would rather buy the food or the clothes for their children, rather than invest it in the health insurance. Or a glass in their windows”.
(interview 4, Network for Vulnerable EU citizens) Discrimination also hindered access to education which in turn influenced their job prospects and income. As mentioned by participants, ensuring access to education for Roma has never been high in the political agendas of countries. Poorer education and illiteracy also presents a barrier in itself for getting health insurance, or for knowing where and how to find information and how to pay for it.
“But for Roma it was very important, because they had something, they had somewhere to go, they had an income, even if it was very low. Despite the fact, that many of them could not read or write and they were very badly educated. Some of them have not gone to school at all, some of them had a couple of years. The analphabetism was very widely spread”.
Description of the model
The four themes described above are related to each other and influence each other. The first theme “A bureaucratic and unfriendly system makes it hard for Roma to get insured in Romania” is about what kind of access to the health care, and the health insurance Roma people have in Romania and what determines it. The first theme has a direct influence on the second theme “Difficult to access the health care services in Sweden, without active European Health Insurance”, as coming to Sweden without the active EHI, Romanian Roma face difficulties in trying to access health care. The third theme “EU policies do not respond to the health care needs of Roma” influences the first and the second theme. EU regulations have a direct influence on how the process of receiving the EHI works in Romania and what kind of access Roma people have in Sweden. And finally, the fourth theme goes into the roots of the situation with access to the health care and health insurance for Roma people in both countries: Romania and Sweden and gives a broader picture of how the Roma population has been influenced by such factors as discrimination and racism (Figure 2).
