Nr: 50/2016
Roma should not be left out from
the health care system more than
they already are
A qualitative study exploring access to health care for
vulnerable EU citizens in Umeå Sweden
Author: Nataliia Tsekhmestruk
Dedication
To Kseniya Guley, my great grandmother.
I wish to be closer to you and your way of life: always helping and supporting people; thinking about others; and doing all you can to make a difference.
Acknowledgment
I would like to start by expressing my deepest gratitude to all the informants who contributed to my study and shared their experiences, knowledge and thoughts with me.
To my supervisor, Helene, thank you for your suggestions during the process of writing this thesis. Your valuable feedback is appreciated and it helped me make improvements to my thesis.
My deepest gratitude to the Swedish Institute for giving me the possibility to pursue my Master of Science in Public Health at Umeå University. It is my honor to be a Swedish Institute Scholarship student!
I would like to express my gratitude to all the staff at the Department of Epidemiology and Public Health for giving us such an incredible experience at Umeå University. Thank you for your time and the knowledge that you shared with us! Especially I would like to thank Isabel Goicolea for all her support!
To my family, my parents, grandparents, my brother. I am blessed to have you in my life. My love to you is endless.
Abstract
Introduction:
Vulnerable European Union citizens (vulnerable EU citizens) are those who come to Sweden from EU member states. In Sweden the term “vulnerable EU citizens” is associated with the word “beggars”, which in turn is associated with Roma people. By November 2015 the number of vulnerable EU citizens in Sweden was estimated to be 4 700. The majority of these were from Romania. Roma as citizens of an EU member state have the right to reside in EU countries in accordance with the EU’s freedom of movement rights concept for up to but no longer than three months. However, to obtain the right for residence after three months, proof of financial resources and health insurance are required. Lacking these resources, vulnerable EU citizens have subsequently lost their right for residence and therefore became undocumented. They often find themselves in the same situation as undocumented migrants from outside the EU, having poor health outcomes and limited access to health care. In my study I aim to explore access to health care for vulnerable EU citizens in Umeå, a city in eastern Sweden.Methods:
A qualitative design methodology has been applied in this thesis. Those contacted for this study were; Doctors of the World, Health on Equal Terms, Staff for planning and control Västerbotten Region, University Hospital of Umeå and representatives of vulnerable EU citizens’ community from Romania in Umeå. Seven in-depth interviews were collected with professionals and volunteers from these organisation/institutions and members of vulnerable EU citizens’ community. Questions were asked about their experience and knowledge regarding access to health care for vulnerable EU citizens. Data was analyzed using qualitative content analysis.Results: Three main categories and one final theme were developed during data analysis.
The first category “Difficult to access health care for vulnerable EU citizens in Sweden without European Health Insurance” elaborates the dependence of vulnerable EU citizens’ access to health care on having health insurance, specifically European Health Insurance and National Health Insurance. It also describes what kind of access to health care vulnerable EU citizens have in Sweden. The second category “Decision about how much access to health care provide for vulnerable EU citizens lies on medical personnel” discusses the situation of health care personnel when they treat vulnerable EU citizens in hospitals. The third category “Organisations, Doctors of the World and Health on Equal Terms, mediate connection between vulnerable EU citizens and hospitals, so they can have their right to health fulfilled” elaborates about the role the organisation plays when vulnerable EU citizens are in need of health care. After grouping categories and looking at the data from more interpretive, abstracted higher level, the final theme was created “Lack of attention from the national and international levels to the situation of vulnerable EU citizens’ access to health care”.Conclusion:
This study highlights the difficulty for vulnerable EU citizens to access health care in Umeå if they do not have European Health Insurance. Being treated as undocumented migrants is the only way they have access to emergency services. Health care personnel feel insecure when treating vulnerable EU citizens, because there are no clear guidelines when vulnerable EU citizens can be treated as undocumented migrants as well as what is included in the clause “the care that cannot wait”. Because of this situation, vulnerable EU citizens sometimes are not able to receive the medical help they need. Organisations, Doctors of the World and Health on Equal Terms, help to mediate the connection between vulnerable EU citizens and hospitals which helps them to access the health care and fulfille their right to health. Lack of attention from the national as well as international governments to this situation is found to be important factor influencing vulneralbe EU citizens’ access to health careContent
Dedication... ii
Acknowledgment ... iii
Abstract ... iv
Content ... v
List of maps, figures and tables ... vii
Abbreviation list ... viii
Introduction ... 1
Short introduction to Roma in Sweden... 2
How vulnerable EU citizens become undocumented migrants ... 3
Concept of “undocumented migrant” ... 4
Health and right to health ... 5
Laws and regulations to access health care for undocumented in Sweden ... 5
Doctors of the World and access to health care for vulnerable groups ... 6
Aims of the study ... 7
Methodology ... 8
Study design ... 8 Study settings ... 8 Study participants ... 9 Data collection ... 10 Data analysis ... 11 Ethical considerations ... 14Results ... 15
Difficult to access health care for vulnerable EU citizens in Sweden without EHI ... 17
Decision about how much access to health care provide for vulnerable EU citizens lies on
medical personnel ... 19Organisations, Doctors of the World and Health on Equal Terms, mediate connection
between vulnerable EU citizens and hospitals, so they can have their right to health fulfilled ... 22Description of the model ... 24
Discussion ... 27
Vulnerable EU citizens and undocumented migrants – access and barriers to health care ... 27
Treatment of vulnerable EU citizens by health care personnel ... 28
Methodological considerations ... 31
Reflexivity ... 31
Trustworthiness ... 32
Study limitations and strengths ...
34Implications of the study... 35
Implications for further research ... .. 35
Implications for the practice of public health ... 35
Conclusions ... 37
Lessons learned ... 38
Rerefences ... 39
Appendices ... 44
Appendix 1: European Health Insurance and how it works in Romania ... 44
Appendix 2: National Health Insurance in Romania ... 45
Appendix 3: Interview guide 1 ... 46
List of maps, figures and tables
Abbreviation list
EEA: European Economic Area EHI: European Health Insurance
EU: European Union
FRA: European Union Agency for Fundamental Rights NHI: National Health Insueance
NOR: National Office for Roma
PICUM: Platform for International Cooperation on Undocumented Migrants SNBHW: Swedish National Board of Health and Welfare
Introduction
From my very first days in Umeå where I lived while I studied for my Master of Science in Public Health at Umeå University, I noticed people sitting near shops and food stores asking for money or food. It was not difficult to understand who they were, because most of them were dressed in traditional Roma clothing. When I tried to talk to some of them I was not successful, because of the language barriers. I could not just walk by without thinking about the situation of these people bagging on streets. Moreover, I was not expecting to see this in Sweden, the country with such developed social and health care systems, the country that promotes dignity, equality and stands for human rights.
I would not be true to myself and to my future profession as a public health scientist if I did not start thinking about how this people can gain access to health care. I wondered about how could they, who rarely can write in their native language, manage to go to the hospital when they need medical help. Therefore, in my thesis I aim to explore access to health care for vulnerable EU citizens in Umeå, a city in eastern Sweden.
By November 2015 the number of vulnerable EU citizens in Sweden was estimated to be 4 700. The majority of them were Roma people from Romania and some from Bulgaria (1). Discriminated in their own countries with limited access to education, housing, employment, health and social services, they came to Sweden to look for better lives (2,3). But how much better their life in Sweden is depends on many factors, one of those factors being their access to health care.
The term “vulnerable EU citizens” is used to describe EU citizens who came to Sweden from other EU member states and who lack health insurance and financial resources to support themselves. Another terms used to describe vulnerable EU citizens are “EU migrants” (1) and “destitute EU citizens” (4). The term “vulnerable EU citizens” is also used by the Swedish National Board on Health and Welfare (SNBHW) and official authorities in Sweden. More recently the term “vulnerable EU citizens” started to be used to describe vulnerable population of Roma people (5–7). In Sweden in recent years the term “vulnerable EU citizens” is connected with word “beggars”, and with Roma people mainly from Romania (1). The study group of this thesis is Roma people from Romania. In this thesis I will refer to this group as vulnerable EU citizens.
On the following pages of the introduction section I will briefly describe how Roma migrated to Sweden in 1960s and the recent Roma migrants - vulnerable EU-citizens. I will explain how vulnerable EU citizens can become undocumented citizens, as they often are in Sweden. Later I will elaborate more about the concept of “undocumented migrant” and speak about health and right to health as well as laws and regulations regarding access to health care for undocumented migrants in Sweden. Finally, I will discuss the findings of Doctors of the World showing that vulnerable EU citizens from Romania present the majority of those seeking health care provided by free medical clinics offered by Doctors of the World in many EU countries.
Short introduction to Roma in Sweden
While migratory movements of Roma in the 1960s were connected to work and employment; migration of Roma during the second half of the 20th century was more about political and economic instability, racism, discrimination, and human rights violation in their countries of origin (8,9). History of Roma during the first part of the 20th century constituted racial ideology against Roma and their presence in Sweden. Roma mothers were not permitted to use maternal health services and sterilisation was used to prevent Roma genes from being passed on to future generations (10). A survey conducted in 2003 showed that 90% of the Roma respondents consider Sweden to be a racist country hostile to Roma people (11).
Roma are one of the five national minorities in Sweden, their culture is acknowledged as part of the common Swedish heritage. It has been estimated that 35,000-65,000 Roma live in Sweden (12,13).
Roma share many of the factors and barriers experienced by other migrants in a new territory. Some of those factors are: lack of good health, lack of knowledge about mainstream services and mistrust of authorities (9). Moreover, complicated procedures for registering and accessing primary care services and lack of cultural awareness and cultural competency amongst health staff present significant barriers as well. These factors can also be compounded by low expectations about their own health and access to health care (9).
Roma people arriving in Sweden in recent years are most often generally referred to as EU migrants or vulnerable EU citizens (14). Mostly they are begging outside 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 citizenship (15).
Valfridsson. His main role was to strengthen the collaboration between Sweden and Romania regarding vulnerable EU citizens’ issues. Collaboration started from encouraging cooperation between the countries’ health and social workers. As it was expressed by Martin Valfridsson, those who do not have work in Sweden cannot be given complete health care rights, because Sweden cannot afford to extend it to all 500 million EU citizens. Romania and other countries, where Roma reside, should look for solutions within their countries (16,17).
How vulnerable EU citizens become undocumented migrants
Every year more people from EU countries come to Sweden to look for better chances and opportunities in life (18). After coming to Sweden they experience difficulties in finding themselves in a new society: language, culture, housing and a competitive job market make it difficult for people from outside to find their future in Sweden. According to the SNBHW, the population of foreign homeless people has been growing since 2005. Most homeless people seen in Sweden are from Romania and Bulgaria, and some from Poland. Most homeless EU citizens are Romanian or Bulgarian Roma, as specified in the report “Homelessness 2017 – scope and character” from the SNBHW (19).
According to Eurostat statistics, 1.9 million people who previously resided in one of the EU member states migrated to another member state in 2017 (20). Free movement within the territory of the EU is the right of EU citizens. Roma as citizens of EU member states have the right to reside in EU countries in accordance with the EU’s freedom of movement rights concept (21). Citizens of EU are permitted to reside in another EU country for up to three months assuming that they have valid documents to prove their identity (passport, identity card). However, Directive 2004/38/EC states that in order to obtain the right to residence for longer than three months in another EU country, sufficient financial resources and health insurance are required (21). This is “to ensure that they do not become a burden on the social services of the host member state during their stay” (21). In order to provide access to health care for those EU citizens who reside in another EU country, European Health Insurance (EHI) was introduced (for more information about EHI see Appendix 1). Those who have EHI can access certain health care services in another EU country with almost the same conditions as nationals (22).
another factor that prevents vulnerable EU citizens from the possibility of staying legally in the territory of another EU member state after three months.
By not being able to fulfill the requirements - lack of health insurance and financial resources- necessary to stay in another EU country for more than three months, vulnerable EU citizens lose their rights for residence and therefore counted as undocumented people. They often find themselves in the same situation as undocumented migrants from outside of the EU (4).
Policies exclude certain groups of migrants, especially those without residency permits and/or insurance, from health care which contributes to deterioration of their health and constitutes a risk factor for the health of the general population (23). Social conditions, economic situation and access to health care services for undocumented migrants need improvements (23).
Concept of “undocumented migrant”
People who live in Sweden without a residence permit and who are not asylum seekers are sometimes referred to as undocumented migrants. Most of them are asylum seekers who have had their residence permit application rejected (but who remained in the country illegally to avoid deportation), or labour immigrants without work permits (24). In some literature, undocumented migrants are also defined as: those who enter the country illegally and have not been within the asylum process; or those who have overstayed their visa or work permit; or EU citizens who are not fulfilling the regulations for the right to residence in another EU country (this group includes vulnerable EU citizens from Romania) (25).
In addition to the term “undocumented migrants”, “migrants in an irregular situation” or “irregular migrants” can also be used (26). Straßmayr et al. (26) used term “irregular migration” to identify the form of migration where the rules of entry or residence had not been followed at some point during migration process. Woodward et al. (27) also used the definition “those without a permission to stay” to describe undocumented migrants. According to Woodward et al. (27) undocumented migrants are “foreign citizens present on the territory of a state, in violation of the regulations on entry and residence, having crossed the border illicitly or at an unauthorized point”. The European Union Agency for Fundamental Rights (FRA) used the term “migrants in an irregular situation” when speaking about vulnerable EU citizens (28).
Health and right to health
The right to health is defined as a universal minimum standard of health that all individuals should have. The concept of a right to health has been mentioned in such documents as: the Universal Declaration of Human Rights, International Covenant on Economic, Social and Cultural Rights and the Convention on the Rights of Persons with Disabilities. The World Health Organisation (WHO) defines health as ”a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” and the right to health as ”the enjoyment of the highest attainable standard of health” (29).
The right to health is a "fundamental, inalienable human right" and the role of the government is to protect and uphold it and by any means to abridge it. Approaching health issues through a rights perspective adds an important dimension to contemplation of health status, where the link between health status, dignity, non-discrimination, equality, justice and participation are drawn. (30)
Lack of attention to human rights and especially the right to health can have serious consequences on health, such as: violence, harmful practices, poor living conditions, lack of information, and lack of health services. Respecting, protecting and fulfilling human rights can reduce this vulnerability and improve, among others, education, living standard and working conditions. Moreover, health system can promote or violate human rights by the way it is designed and implemented (accessibility to service, provision of information, respect for integrity and privacy, cultural sensitivity, gender and age sensitivity) (31).
Laws and regulations to access health care for undocumented
migrants in Sweden
Swedish legislation of 2012 elaborates that adult undocumented migrants can only be provided with access to “immediate” health and medical care. It means that only a very few services within emergency care can be provided free of charge. Regarding a new legislation from the 1st of June 2013, all undocumented migrants have the same rights to medical and health care as asylum seekers in Sweden. According to the legislation, children under 18 of undocumented migrants have the same access to medical, health and dental care as registered children residents in Sweden. But when it comes to adults and other groups, they are able to receive only care that are in “urgent need” (24,32).
undocumented migrants should be offered maternity and abortion care, contraception advice and drugs prescribed in connection to above treatment and health examination (34). SNBHW announced in April 2015 that EU citizens who stay in Sweden longer than three months (mainly vulnerable EU citizens from Romania) may, in certain cases, have access to health care on the basis of the 2013 law (Health and Medical Care for Certain Foreigners Residing in Sweden without Proper Documentation Act) (35).
Doctors of the World and access to health care for vulnerable
groups
Doctors of the World provides access to health care for those who cannot access mainstream health care. This organisation is active in 11 EU counties: Germany, Belgium, France, Spain, Greece, Luxemburg, the Netherlands, Norway, Switzerland, the United Kingdom and Sweden. The organisations’ focus, besides other groups, is EU citizens who cannot access health care in another EU/EEA member state, like for example vulnerable EU citizens from Romania and their access to health care in Sweden.
Romanian migrants were among the majority of those seeking health care in free medical clinics organized by Doctors of the World. In 2019 Doctors of the World indicated that included in the majority of EU/EEA citizens who were without financial resources and/or health insurance and could not access regular health care services were Romanians (mainly Roma) and Bulgarians. Roma from Romania also presented as one of the main immigrant groups in Italy, Belgium, Spain, Greece and France (36). In 2015 Romania was on the ten most frequently recorded nationalities among those seeing in free medical clinics of Doctors of the World in Belgium, Germany, Spain, France and Sweden (37).
One report about universal health coverage in 11 EU countries and Turkey in 2016 found that among all the people seen in the free medical clinics of the organisation Doctors of the World and partner organisations, 7.5% were EU/EEA migrants (35). In 2016, 6 EU countries: France, Germany, Luxembourg, Norway, Spain and Sweden had Romanian citizens as one of the top five nationalities seen in free medical clinics of Doctors of the World. In Sweden, Norway and Luxembourg they were the prominent group (35).
Aims of the study
Methodology
Study design
Government/non-government organisations/institutions whose work were related to vulnerable EU citizens’ access to health care were contacted to collect information and proceed with interviews. Representatives of vulnerable EU citizens’ community staying in Umeå were approached as well to collect data regarding their experience with accessing health care in Umeå. Only those organisations/institutions that responded to the email request were interviewed. Only those representatives of vulnerable EU citizens’ community who have had experience with accessing health care in Umeå were interviewed. All interviews were guided by a semi-structured interview guide.
Qualitative methodology with content analysis was used to analyze the data in this study (39–42) and to explore access to health care for vulnerable EU citizens in Umeå. This study contributed to better understanding of what kind of health care is available vulnerable EU citizens as well as how vulnerable EU citizens can access health care in Umeå. In addition, this study explores how vulnerable EU citizens themselves describe their experiences with access to health care.
Study settings
The study took place in Umeå which is the largest city in Norrland and the thirteenth biggest in Sweden, with 84,761 inhabitants in 2016. The municipality had 123,382 inhabitants as of 2017. Umeå belongs to West Bothnia or Westrobothnia (Västerbotten) province and is the capital of the Västerbotten Region. There are 21 regions in Sweden (43).
Organisations; Doctors of the World and Health on Equal Terms as well as, Staff for planning and control of Västerbotten Region, Emergency Department of the University Hospital of Umeå and representatives of vulnerable EU citizens’ community from Romania were contacted and interviewed. They were selected because they represent different perspectives and are the source of knowledge regarding the situation with access to health care for vulnerable EU citizens from Romania in Umeå.
Doctors of the World is an international non-for-profit organisation working towards
In the beginning, the organisation Health on Equal Terms was voluntarily providing medical help for vulnerable EU citizens in Umeå. Since 2016 organisation Health on Equal Terms became a part of the organisation Doctors of the World. During the time of the data collection for this study the organisation, Health on Equal Terms was in the transition phase of merging into Doctors of the World. For a sense of clarity, both organisations will be mentioned in this study.
Västerbotten Region is a county in the north of Sweden. The main goals of the regions are to
bring to completion goals set in national policies by the Riksdag (the national legislature and the supreme decision-making body) and the Government, and to work towards achieving the interests of the county and promote its development. Västerbotten Region also conducts research and development within health and medical care. This function is fulfilled through the Healthcare Board (43). Staff for planning and control Västerbotten Region is responsible among others for coordination of migration and questions regarding health care for migrants.
University Hospital of Umeå (Norrlands Universitetssjukhus) is the biggest hospital in
northern Sweden with around 5 600 employees. It is also a teaching hospital for Umeå University with the Faculty of Medicine as the responsible authority (45). The Emergency
Department of the University Hospital of Umeå together with Health centers such as: the
Geriatric center, Medicine center and Adult psychiatric clinic presents a Close care of Umeå (Närsjukvård in Swedish) (46). Representatives of vulnerable EU citizens from Romania in
Umeå are representatives of Roma community from Romania staying in Umeå.
Study participants
Participants were recruited with the help of the organisation Health on Equal Terms in Umeå. Health on Equal Terms was contacted with the main aim to inform the study. During the meeting with the organisation’s representatives, the aim of the study, selection criteria and data collection method were further explained and representatives from the organisation were asked to participate in the study.
During the next step Health on Equal Terms helped to contact vulnerable EU citizens who have experience with accessing health care in Umeå. Hence, only those representatives who stayed in the city and were in contact with Health on Equal Terms were included in the study as possible informants.
Västerbotten Region and the Emergency Department of the University Hospital of Umeå were contacted. During the first meeting with informants from these organisations study purpose, selection criteria and data collection method were explained.
Informants were selected purposely to ensure their different experience of working with the topic of the study. Representatives from vulnerable EU citizens’ community were selected taking into consideration their experience with access to health care in Umeå. A balance in gender was also taken into consideration. No participants, representatives from vulnerable EU citizens’ community younger than 18 years old were included in the study.
This study included seven participants: five females and two males. Participants were between 22 and 60 years old, with three participants aged under 30 years old. Among participants, two were volunteers in the organization Health on Equal Terms; one participant represented Doctors of the World; two participants were representatives from vulnerable EU citizens’ community; one participant worked in the Staff for planning and control in the Västerbotten Region; and one - in the Emergency Department of the University Hospital of Umeå. Table 1 below presents detailed information about participants included in the study.
Table 1. Informants age, gender, occupation, nationality and organisation they represented
N Age M/F Occupation Organisation Nationality 1 30 F Coordinator of the project “Frisk”
in the Doctors of the World
Doctors of the World Swedish 2 29 F Doctor, politician.
Volunteer in the organisation
Health on Equal Terms Swedish 3 28 F Medical student.
Volunteer in the organisation
Health on Equal Terms Finnish 4 22 F - Representative of vulnerable
EU citizens’ community from Romania
Romanian
5 50-60
M - Representative of vulnerable EU citizens’ community from
Romania
Romanian
6 61 F Planning officer Staff for planning and control Västerbotten Region
Swedish
7 45 M Head of the Department Emergency Department of the University Hospital of
Umeå
Swedish
Data collection
representatives from vulnerable EU citizens’ communities from Romania staying in Umeå. Interview guide 2 (see Apendix 4) is a semi-structured interview guide used to interview other organisations/institutions. Both interview guides have the same structure and differ only in the way the questions were asked. As representatives from vulnerable EU citizens’ community were asked about their personal experinces, and other organisations/institutions were asked about what they know and what experience they have regarding vulnerable EU citizens’ access to health care.
Interview guides were developed after reflection on the available information about the topic. Pilot interviews (one interview with representatives of vulnerable EU citizens, and one - with organisation Health on equal terms) were conducted and included in the analysis. After reading pilot interviews “interview guide 1” and “interview guide 2” were improved. The interview guide addressed such topics as: knowledge and experience of vulnerable EU citizens with accessing health care in Umeå; knowledge and experience of organisations/institutions with vulnerable EU citizens’ access to health care; challenges to accessing health care for vulnerable EU citizens in Umeå from the perspective of organisations/institutions as well as representatives of vulnerable EU citizens.
Data collection was carried out from the beginning of March 2016 to the middle of April 2016 in Umeå. Interviews were conducted in different places: in the organisation’s office, University library, Emergency Department of the University Hospital of Umeå, and Umeå Pentecostal Church (Pingskyrkan). Interviews were done in quite places, where no interruption would be possible. Interviews lasted from 40 min up to 1 hour 40 min. All informants besides the representatives of vulnerable EU citizens were interviewed in English. One of the representatives of vulnerable EU citizens was interviewed in Polish. I conducted this interview in Polish and translated it into English later, as I myself and the informant both could speak Polish. The help of a Romanian interpreter was used to interview the second representative of vulnerable EU citizens. Interpretation was done simultaneously from English to Romanian and from Romanian to English. All interviews were conducted face to face and were audio-taped. Notes were taken during the interview process to capture additional observations, comments and my reflections.
Data analysis
individuals’ “life words” (40). Moreover, qualitative content analysis is a good tool to study human experiences, which is complex and often carries meaning on multiple levels. According to Erlingsson et al. (40) qualitative content analysis is the process of analysis of raw data from verbatim transcribed interviews to categories and themes and further abstraction of data in each step of analysis. It starts with what the text says – manifest content analysis and finishes with what the text is talking about – latent content analysis. According to Graneheim et al. (39) the latent content analysis when compared to the manifest content analysis is more in-depth and has a higher level of abstraction.
Table 2 below presents concepts related to the qualitative content analysis method that were followed in this study by using the guidelines of Graneheim and Lundman “Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness” and Erlingsson and Brysiewicz “A hands-on guide to doing content analysis”.
Table 2. Concepts of qualitative content analysis by Graneheim and Lundman “Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness” and Erlingsson and Brysiewicz “A hands-on guide to doing content analysis”.
Concept Explanation
1.Unit of analysis Unit of analysis is the object of study. In this study the unit of analysis is the whole interviews about vulnerable EU citizens’ experience to access health care.
2.Meaning unit The part of the interviews (words, sentences, paragraphs) that relates to the same central meaning or have the same idea.
3.Condenced meaning unit It is the meaning unit that has been shortened but kept the main idea. Condensation - process of shortening the text while keeping the core.
4.Code Code seen as a label. Code explains in more exact/short words (usually one or two words) what the condensed meaning unit is about. Producing the codes allows the data to be thought in a new different way. Codes should be understood in relation to the context.
categories can be divided into sub-categories. Name for categories should be factual and short.
6.Theme Creating theme is a way to link the underlying meanings in categories together. Theme answers questions “Why”, “How”, “In what way”, “By what means” and expresses the data on more interpretative (latent) level. Theme is considered a thread of underlying meaning through condensed meaning units, codes and categories on the interpretive level. In general, themes are not necessarily mutually exclusive. Condensed meaning unit, a code or a category can fit into more than one theme. A theme communicates with the reader on two levels: intellectual and emotional.
At the stage of reading and re-reading interviews, ideas about what the main points were that participants were trying to say were noted and this helped to obtain a sense of the whole of the collected data. These notes were later compared to the smaller “parts” of the interviews to see if smaller “parts” corresponded with the initial impression of the “whole” text. Each part should reflect the whole and the whole should be presented in each part, according to Erlingsson at el. (40). This transcription process helped in the process of familiarization with the data.
Interviews were analyzed to help identify and divide the text into meaning units. Meaning units were then condensed, abstracted and coded with the help of “OpenCode 4.03 software”. Notes were taken during the coding process. Codes that were related to each other through content or context were grouped into categories. Categories were formed by organizing together codes that were describing different aspects, similarities or differences of the content that belonged together. The theme “Lack of attention from national and international levels to the situation of vulnerable EU citizens’ access to health care” was created by grouping categories after looking at the data from a more interpretative, abstracted higher level. Creating a theme was an example of the latent content analysis, where the data was looked at thorough the question of what does it mean and what does it say.
Table 3. Qualitative content analysis process from a meaning unit, condensed meaning unit, codes, sub-category, category and theme.
Meaning unit
Many [health care professionals] feel unsecure about what they can do and what they cannot do. The fear of doing wrong and fear of giving too much health care if they [vulnerable EU citizens] do not have the legal right to it.
So, I think it depends on the person [health personnel at the hospital] that you meet. Some people [health personnel] are really nice and they tried to find ways and also they can make “bills disappeared” and others are like “No, I need the address to send this bill”, really strict. Condensed
meaning unit
Health care professionals unsecure about what they can or cannot do. They have a fear of doing wrong or give too much health care for Roma.
Some health personnel are nice and made “bills disappeared”; others are strict and request address to send the bill.
Codes Fear of doing wrong.
Fear of giving too much health care.
Health personnel made “bills disappeared”. Health personnel ask for the address to send a bill.
Sub-category
Lack of knowledge and guidance about how to treat vulnerable EU citizens
Different attitude to vulnerable EU citizens from health care personnel
Category
Decision about how much access to health care provide for vulnerable EU citizens lies on medical personnel
Theme
Lack of attention from the national and international levels to the situation of vulnerable EU citizens’ access to health care
Ethical considerations
Results
This section includes a description of the main findings and the final model that describes the connection between categories. Results were finalized with a development of three main categories and the final theme. Three main categories are: “Difficult to access health care for
vulnerable EU citizens in Sweden without European Health Insurance”, “Decision about how much access to health care provide for vulnerable EU citizens lies on medical personnel”, “Organisations, Doctors of the World and Health on Equal Terms, mediate connection between vulnerable EU citizens and hospitals, so they can have their right to health fulfilled”; and the final theme – “Lack of attention from the national and international levels to the situation of vulnerable EU citizens’ access to health care”. Main
categories and subcategories are presented in Figure 1. Figure 2 presents the final model that illustrates how the three categories are connected and explains how those categories are related to the final theme.
The first category “Difficult to access health care for vulnerable EU citizens in Sweden
without European Health Insurance” elaborates about the dependence of vulnerable EU
citizens’ access to health care on health insurance in Sweden, and in Romania. It also describes what kind of access to health care vulnerable EU citizens have in Sweden. The second category “Decision about how much access to health care provide for vulnerable EU
citizens lies on medical personnel” discusses situation of health care personnel when they
need to treat vulnerable EU citizens in hospitals. Medical personnel are put in a difficult situation when it is they who have to decide to what extent health care is provided for vulnerable EU citizens. There are not enough guidelines and those that are there are not clear enough regarding access to health care for this group. This in turn leads to health personnel feeling insecure about their actions. As a consequences it is difficult for vulnerable EU citizens to access health care, and in some cases they would not be able to receive medical help if there were no volunteers from the organisation Docotors of the World. The third category “Organisations, Doctors of the World and Health on Equal Terms, mediate
connection between vulnerable EU citizens and hospitals, so they can have their right to health fulfilled” elaborates the role of the organisation when it comes to vulnerable EU
citizens’ access to health care. Organisation provides support for vulnerable EU citizens and helps them to access health care. As well, they provide guidance to health care personnel regarding administrative procedures on how to register appointments and provide care in health care facilities.
Figure 1: Categories and subcategories 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 Difficult to access health care
for vulnerable EU citizens in Sweden without EHI
Decision about how much access to health care provide for vulnerable EU citizens lies
on medical personnel
Access to health care depends on EHI, which consequently depends on NHI from Romania
Lack of knowledge about functioning of Swedish health care
system
Access to emergency health care provided only when they are seen
as undocumented
Lack of knowledge and guidance about how to treat vulnerable EU
citizens
Medical personnel feel insecure when treating vulnerable EU citizens
Different attitude towards vulnerable EU citizens from health care
personnel
Organisations mediate connection between vulnerable
EU citizens and hospitals, so they can have their right to
health fulfilled Provides support by visiting vulnerable EU citizens Makes appointment to hospital possible
Strives for vulnerable EU citizens’ access to health
Difficult to access health care for vulnerable EU citizens in Sweden
without European Health Insurance
This category described what access to health care vulnerable EU citizens have in Umeå. As well it describes the fact that because they are who they are, they experience difficulties with access to health care. This category also elaborated on how their access to health care and their health insurance status back in their home country – Romania-, influence their access to health care in Umeå.
As participants underlined, when vulnerable EU citizens visit the hospital they, as EU citizens, need to have EHI to access health care. They receive EHI from their home country. With the EHI they would have medical treatment in Sweden at almost the same conditions as Swedish citizens. However, the majority of vulnerable EU citizens do not have EHI and many of them even do not know about it. Not having EHI makes it very difficult for vulnerable EU citizens to access health care in Umeå.
“They [vulnerable EU citizens] need to have European Health Insurance. But people who are here in Sweden and in Umeå, they do not have insurance card because of being Roma. They do not have rights to get it in Romania, or they do not know about their rights, or the information is not reaching out to them”.
(interview 1, Doctors of the World)
Not having EHI would mean that they would “need to pay full price for medical help”
[interview 3, Health on equal terms] and it is very expensive in Sweden.
“When they [vulnerable EU citizens] are sick and they do not have the health insurance card, then they end up with having expensive bills”.
(interview 1, Doctors of the World)
As participants stated, vulnerable EU citizens are discriminated against and are an unprivileged group in Romania with limited access to education, housing, work and health care. As the result of discrimination in health care they often do not have access to National Health Insurance (NHI) in Romania and consequently cannot receive EHI, and access health care in Sweden. As one of the representatives from vulnerable EU citizens mentioned:
“I do not have help and I do not have the right to stay in Romania. I do not have work, I cannot go to the hospital, and my children cannot go to school. It is a very racist country towards gypsies”.
(interview 4, representative of vulnerable EU citizens)
functions in Sweden. Moreover, the majority of them cannot speak Swedish or English. It is difficult for them to understand what and how they should do when they need medical help. “It is not easy for them [for vulnerable EU citizens] to call by themselves and to know how it
[health care system] works; and to talk to someone [from health care staff]. They [vulnerable EU citizens] do not speak Swedish, and they cannot explain what they need and to ask if they can get it or not”.
(interview 2, Health on Equal Terms)
Low education with limited knowledge about Swedish society and about how the health care system is organised makes this group especially vulnerable and leaves them not knowing what to do. As participants said, they do not know what rights they have, especially when it comes to access to health care.
“People [vulnerable EU citizens] do not know what rights they have. Like, do they have the right to go to the hospital or not; do they have to pay or not; when they have to pay and when they do not have to pay”.
(interview 1, Doctors of the World)
Participants also emphasized that when vulnerable EU citizens seek health care they could have access to emergency care, but only if they would be considered as undocumented migrants. Participants elaborated that undocumented migrants have access to emergency care or care “that cannot wait”. However, emergency care is not sufficient to meet health care needs of this population and it presents many challenges. Because if no primary care and early intervention are provided then it forces those people to wait until their health conditions become serious until they can be counted as “emergency”. By then the health problems are more complex and difficult to treat. This could not only be negative to the person’s health, but also increases the usage of emergency rooms and the overall cost of care for healthcare providers.
“…regarding undocumented people…there is a law that says that if you are being one of this people, you have the right to emergency health care or health care that cannot wait. Like you have to have it now”.
Decision about how much access to health care to provide for
vulnerable EU citizens lies on medical personnel
This category explained the situation hospitals and health care professionals experience when vulnerable EU citizens seek health care. Vulnerable EU citizens are EU citizens, but they do not have EHI and it makes it difficult for health care professionals to understand what kind of treatment they are able to provide for them. Moreover, they usually stay in Sweden for longer than three months. This makes the situation even more complicated. Should vulnerable EU citizens be considered as undocumented or, since they are EU citizens, they cannot be considered undocumented people. This is unclear for health care professionals. In the end it is them who decides how much access to health care provide for this group. Medical personnel feel insecure when dealing with issues related to access to health care for these patients.
This insecurity could be because medical staff not always have knowledge about what should be done when vulnerable EU citizens visit health care facilities. And as one of the participants expressed “knowledge from doctors and nurses are not the best” [interview 2, Health on
Equal Terms] and participants also mentioned “they [health care professionals] will not refuse to help [for vulnerable EU citizens when they seek health care], but they do not have the knowledge” [interview 2, Health on Equal Terms]. Meaning by this that health care staff
are not sure about what kind of access to provide for vulnerable EU citizens. This prevents vulnerable EU citizens from benefiting from public health services and hinders the effective implementation of their right to health care.
As participants explained, the insecurity of the health care staff makes vulnerable EU citizens more insecure and they are “unsure of what they can expect from health care personnel”
[interview 3, Health on Equal Terms]. At the same time the organisation that helps for
vulnerable EU citizens “not sure what to expect neither, because they [at the hospital] may
say “no, you [vulnerable EU citizen, visiting hospital] need to pay a full price” [interview 3, Health on Equal Terms].
Participants also gave an example about a situation when health care professionals did not have enough knowledge about how to do a temporary medical identification number for a medical visit. When vulnerable EU citizens seek health care and they do not have personal number, which means they are not registered in the Swedish health care system, health care professionals could issue a so called “R-number” to be able to register a patient for a visit. It is a temporary number that includes a birth date (year, month, day) and four extra digits.
know how to do it. Few times they [health care professionals] told me: “I have never done this before”. And I [volunteer from the organisation] said that it is not my problem. I know it is working because other people [health care professionals] have done it before. I know it is possible. “Then I need to check how to do it” – she [health care staff] said. So, it is like not everyone [from the health care] knows about it [how to do R-number]”.
(interview 1, Doctors of the World)
As some of the participants expressed, the situation with making an “R-number” also shows that health care personnel are not always willing to do a little bit of extra work to provide health care for vulnerable EU citizens.
“When they [vulnerable EU citizens] do not have their last four numbers [of the personal number] they [health care personnel] have to do a temporarily number just for the medical services. It is like a little bit of extra work, but not too much. And then sometimes it is like they [health care personnel], I hear that they think it is annoying because it takes a little bit more time”.
(interview 1, Doctors of the World)
As participants explained, it could be because there is no clear information regarding how much access to health care vulnerable EU citizens can have and under what conditions they should be treated as undocumented migrants.
“It is unclear how much health service they [vulnerable EU citizens] have rights to get. We only have that document from Socialstyrelsen [Swedish National Board of Health and Welfare] that count them as undocumented. They should have the same rights to health care as asylum seekers, but it does not work all the time”.
(interview 7, Emergency Department of the University Hospital of Umeå)
As also mentioned by participants, it is unclear that vulnerable EU citizens can be seen as undocumented because they are still EU citizens.
“The only document we have is a law from 2013 about undocumented people in Sweden and their rights. But still it is a question if vulnerable EU citizens can be counted as undocumented people since they are citizens of the European Union. But then there is a part in Socialstyrelsen [Swedish National Board of Health and Welfare] which says that every person becomes undocumented if staying in Sweden for more than three months without a residence permit. But still there is so much to clarify at the national level”.
As participants expressed; this ambiguity happened because there are no clear guidelines from politicians on the national level on how to treat people who are EU citizens in a vulnerable situation, who do not have job, health insurance and financial resources.
“I think that the main responsibility is on local politicians. And it is their responsibility to improve information available and understandable for health care personnel. And to provide a guideline on what to do and what not to do. But they have not done that so far”.
(interview 2, Health on Equal Terms)
Moreover, as was explained by participants, health care professionals feel pressure when vulnerable EU citizens come to the hospital, because it is medical personnel who have direct contact with them and decide about treatment.
“Many [health care professional] feel unsecure about what they can do and what they cannot do. The fear of doing wrong and the fear of giving too much health care if they [vulnerable EU citizens] do not have the legal right to it. They [health care professionals] are afraid to have problems with their bosses”.
(interview 2, Health on Equal Terms)
Participants also said that vulnerable EU citizens were treated most of the time as undocumented migrants and were provided with emergency health care. However, other participants mentioned that some health care staff “might say that vulnerable EU citizens
are not undocumented, and they do not have right to the emergency health care” [interview 3, Health on Equal Terms].
Participants expressed that the attitude from health care professionals towards vulnerable EU citizens are inconsistent. Some will want the address to be able to send a bill for medical help while others will try to provide medical assistance without making a bill.
“I think it depends on the person [health care personnel] that you meet. Some people are really nice, and they tried to find a way and make “bills disappeared”, and some are like: “No, I need the address to send a bill”, and they are really strict”.
(interview 3, Health on Equal Terms ) “We [vulnerable EU citizen and volunteer from the organisation] went to Mariehems hälsocentral [Mariehem’s health center]. They [health care personnel] were very nice and friendly. I [vulnerable EU citizen] do not have problems with nurses or doctors, they are very friendly”.
(interview 4, representative of vulnerable EU citizens’ community staying in Umeå)
Equal Terms]. Meaning that vulnerable EU citizens could be treated differently than others
because they are Roma. Participants underlined that some of the health care personnel “are
skeptical and annoyed by this situation” of vulnerable EU citizens’ access to health care [interview 1, Doctors of the World] and “they are assuming things about this people. But they might not do with other people, especially with Swedish people” [interview 1, Doctors of the world]. The responsibility about what kind of access to health care is allowed to
vulnerable EU citizens should not be given to health care professionals, because health care staff need to treat and provide healthcare to people, but not to say if this people have the right to receive medical help.
Organisations, Doctors of the World and Health on Equal Terms,
mediate connection between vulnerable EU citizens and hospitals,
so they can have their right to health fulfilled
This category explained the role organisations like Doctors of the World and Health on Equal Terms play in supporting vulnerable EU citizens in Umeå. These organisations create the dialogue between vulnerable EU citizens and health care system possible and strives to improve access to health care for vulnerable EU citizens’.
Participants underlined an important role of these organisations in supporting vulnerable EU citizens. One of the most important roles for organisation like this was to visit places where this group of people stay, and “knock on the door and ask them [vulnerable EU citizens] if
they have any health problems or something that they need help with” [interview 3, Health on equal terms].
“They [volunteers from organisations] have been really helpful visiting camps where people [vulnerable EU citizens] staying; talking to people, and asking if they need any medical help, or help to go to the hospital, to make an appointment, or with the medicine”.
(interview 1, Doctors of the World)
As participants also underlined volunteers from organisations do a very important work by building connection between the organisation and vulnerable EU citizens, so they feel more trust, and would know where to go if they need support.
“I think what is also important is going to camps and talk to people, even when they do not need medical help. Do you want to have a cup of coffee? I think that sort of contact is also important. Then once they [vulnerable EU citizens] have any questions, they will know about us [organisation] and maybe get in touch with us”.
Participants also said volunteers from organisations help to book appointments to visit the hospital if needed. Vulnerable EU citizens would not go themselves to the hospital, because they would not know how to do it.
“It takes volunteers to get there. Without volunteers, who help and support them [vulnerable EU citizens], it would be very difficult for them just to have contact with the public health services”.
(interview 1, Doctors of the World)
As participants shared, volunteers who follow vulnerable EU citizens to the hospital, not only show them the way; but also speak for them.
“If I follow someone, I always support the person that I follow. I am with that person and speaking for the person if they do not know so much Swedish or English”.
(interview 1, Doctors of the World)
Participants also underlined that treatment of vulnerable EU citizens by health care staff “might be different if they come alone’’ [interview 1, Doctors of the World]. This could be because health care staff do not always know what they can do in terms of what access to health care they can provide and the right to health of this population. Volunteers often are the ones who explain for health care personnel that these people are in Sweden for more than three months and that they can have access to the emergency health care. In this situation the role of volunteers is very important.
“We followed them to the hospital and explain for the personnel what kind of rights they [vulnerable EU citizens] have and how they [health care personnel] can act. They [at the hospital] do not know it”.
(interview 2, Health on Equal Terms)
Some participants also expressed that volunteers, when following vulnerable EU citizens to hospitals, try to help as much as they can in all possible ways.
“To fight for them [vulnerable EU citizens] and in some ways to trick the system and not giving anyone any address or like to try to get them not to pay”.
(interview 1, Doctors of the World)
As some participants expressed, it is not always easy to work towards supporting vulnerable EU citizens, because they are Roma and “Roma do not have the right according to some
people to health care in Sweden” [interview 3, Health on Equal Terms]. And as was stated by
one of the participants “the overall working with this group of people [vulnerable EU
Participants said that difficulties could be because the organisation’s aims for vulnerable EU citizens is ‘to have access to health care at the same conditions as Swedish citizens”
[interview 2, Health on Equal Terms], but at the same time “not everyone wants the same” [interview 1, Doctors of the World].
Difficulties also come, as participants stated, with “political influence that affects the
situation of vulnerable EU citizens” [interview 1, Doctors of the World] and “health care institutions are very connected to laws and rules” [interview 2, Health on Equal Terms].
Participants point out that “Roma should not be left out more than they already are. The
right to health is like the number one that they [vulnerable EU citizens] should have” [interview 1, Doctors of the World].
Description of the model
Figure 2 presents the final model of the main findings. Three main ellipses present the three main categories of the findings in Figure 2. The central ellipse is the category “Organisations, Doctors of the World and Health on Equal Terms, mediate connection between vulnerable EU citizens and hospitals, so they can have their right to health fulfilled”. When it comes to the role of the organisations towards vulnerable EU citizens, it is shown in three arrows: (1) organisations visit and support vulnerable EU citizens; (2) make the appointment to health care facilities; and (3) promote vulnerable EU citizens’ right to health. The organisations’ vision is that vulnerable EU citizens should have the same access to health care as Swedish nationals. When it comes to the role of the organisations towards health care facilities, it is represented in two arrows: (1) organisations communicate with health care facilities to help for vulnerable EU citizens to access health care; and (2) often explain to health care personnel that these people should be treated as undocumented migrants.
Another ellipse presents the category – “Difficult to access health care for vulnerable EU citizens in Sweden without European Health Insurance”. Not having EHI and not knowing if they can go to the hospital or not, vulnerable EU citizens can only rely on support from the organisations. This corresponds to the arrow coming from the ellipse representing vulnerable EU citizens to the ellipse representing the organisations – (vulnerable EU citizens) contact organisation when they need help.
health insurance and financial resources. As a result, it is the medical personnel that make decisions regarding vulnerable EU citizens’ access to health care.
Additionally, Figure 2 presents “communication arrows” between: (1) the organisations and vulnerable EU citizens; (2) the organisations and health care; (3) vulnerable EU citizens and health care. Communication (1) is mutual and trust is established. Vulnerable EU citizens contact organisations when they need help and the organisations support vulnerable EU citizens. Communication (2) is one sided communication: from the organisations to health care. There is no communication from health care to the organisations. Regarding communication between vulnerable EU citizens and health care - communication (3) - this study shows that there is a lack of it. Vulnerable EU citizens would not be able to go to the hospital alone, and they would not know how the health care system functions. Moreover, health care workers would also not know how to communicate with vulnerable EU citizens, as language barriers would be there, and they may not always know what access to health care vulnerable EU citizens have.
The final theme – “Lack of attention from the national and international levels to the situation of vulnerable EU citizens’ access to health care”, presents more abstracted interpretive level of the analysis, where the data was looked through to answer the question of what does it mean and what does it say. Lack of attention from the national and international levels could be seen as the lack of guideline and clear information from politicians to health care institutions, which puts the decision making process on shoulders of health care professionals. And also as lack of attention and action towards asking this question from national to international level. It also looks at having a proactive position towards changing those factors that make vulnerable EU citizens’ access to health care in Sweden difficult - lack of health insurance in their home country NHI, and as a consequence lack of EHI.
Discussion
Studies on vulnerable populations, in particular on access to health care, often include different groups such as refugees, asylum seekers, victims of trafficking and undocumented migrants. In the discussion section I will use terms “vulnerable migrants” and “undocumented migrants” as well as “vulnerable EU citizens” to speak about vulnerable groups, among those the one that is the focus of this study.
Vulnerable EU citizens’ and undocumented migrants’ – access and
barriers to health care
In this study I found that vulnerable EU citizens share many of the same barriers and obstacles to access health care as other vulnerable groups. Studies on health and access to health care for undocumented migrants, among refugees, asylum seekers, victims of trafficking, migrants in irregular situation, also include vulnerable EU citizens if they have been treated as undocumented in health care facilities (27). Undocumented migrants have been found to have poorer access to health care when compared to the general population (24,25).
This study found that vulnerable EU citizens, because of lack of knowledge about how the health care system is organised, language barriers, and lack of understanding what and how should be done, experience obstacles while reaching health care in Sweden. According to Mladovsky (48) and a publication from the non-government organisation - the Platform for International Cooperation on Undocumented Migrants (PICUM) (49), lack of knowledge about country of stay’s health system and language barriers were one of the main barriers to accessing health care for undocumented migrants. As described by Woodward et al. (27), language barriers reduce undocumented migrants’ ability to negotiate treatment options. Moreover, because of the language barriers, the quality of care might be reduced for undocumented patients (50,51).
