Perceptions on health, well-being and quality of life of

Perceptions on health, well-being and quality of life of Balkan Roma adolescents in West Sweden Kristine Crondahl and Leena Eklund We examine the perceptions of Roma adolescents on health, well-being and quality of life (QoL) and how the Roma managed their own life situation within these areas. The data, which consists of interviews, was analysed through content analysis. The most common understanding of health and well-being was to feel good, secure and happy. A wide social network of family and friends was seen as an additional element. The respondents perceived their own health and well-being to be good. A feeling of freedom, the ability to make decisions independently and the possibilities for education and employment were the most important elements of QoL. Quality of life was perceived to have something to do with values and beliefs in the future. Social support from family and friends were the most frequently used coping strategies. The perceptions of the Roma adolescents on health, well-being and QoL turned out to be quite similar to the perceptions of the non-Roma adolescents. Keywords: adolescents, coping strategies, health, Roma people, social capital, social networks, quality of life, well-being

Introduction The first records of Roma people in Sweden date back to 1512, when a group of Roma arrived in the capital, Stockholm (Montesino Parra 2002: 7–35). Ever since, the Roma have been victims of discrimination and oppression in Sweden, as in many other European countries. Palmroth and Hermansson (2006: 12) claim that the marginalised situation of Roma people in Sweden is a consequence of the complex interplay between Swedish society’s rejection of them and the Roma way of isolating and protecting themselves. The Roma people have not been included in Swedish society, particularly not in political discussions or in the planning of measures to be taken for the group. There are about 20 million Roma people around the world today (SOU 2010: 116). Between 10 million and 12 million of them live in Europe, with an Kristine Crondahl is Project Co-ordinator at the Division of Health, Culture and Educational Sciences, Department of Nursing, Health and Culture, University West, Gustava Melinsgata 2, 461 86 Trollhättan, Sweden. E-mail: [email protected] Leena Eklund is Senior Lecturer at the Division of Health, Culture and Educational Sciences, Department of Nursing, Health and Culture, University West, Gustava Melinsgata 2, 461 86 Trollhättan, Sweden. E-mail: [email protected] Romani Studies 5, Vol. 22, No. 2 (2012), 153–173 issn 1528–0748 (print) 1757–2274 (online) doi: 10.3828/rs.2012.9

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estimated 50,000 Roma living in Sweden (SOU 2010: 116). In 2000 the Roma people gained legally recognised status as a national minority group in Sweden (SOU 2010: 102). At the same time the Swedish government made a distinction between the Roma as one group and divided them into five groups (the Travellers, the Finnish Roma, the Swedish Roma, the non-Nordic Roma, and the newly arrived Roma) depending on the period when each group arrived in Sweden and the country in which they lived in previously (SOU 2010: 81). The Roma people are not a homogenous group. Language, religion, culture, traditions and manners of the various Roma groups are influenced by the countries in which they used to live (Government Offices of Sweden 1997: 18). In Sweden, the inferior living conditions are the same for all groups. Once they reveal their Roma origin, they are all exposed to discrimination and exclusion by society and the non-Roma. The group of newly arrived Roma in Sweden One of the most recently arrived Roma groups in Sweden are refugees from the Former Republic of Yugoslavia. This group of Roma often call themselves Balkan Roma, a term which we will use in this article. Most of the Balkan Roma are Muslims. Their language is Romani chib. Like all other Roma, their dialect is influenced by the language of the country of origin, in this case the former Yugoslavian languages. The Balkan Roma lived primarily in areas now called Kosovo, the Republic of Serbia, the former Yugoslav Republic of Macedonia and Bosnia-Herzegovina. For most of the Roma in the Balkans, discrimination became worse after the end of the war. At the same time, ethnic-cleansing campaigns targeting the Roma started. Today, ethnic cleansing and persecution of the Roma is still continuing (Isaksson 2008: 1). In the Balkan post-communistic era, poverty is a common phenomenon characterised by the society’s lack of poverty relief and actions to ensure social inclusion (Sotiropoulos 2005: 267–78). Many of the Balkan Roma living in Sweden today have experienced traumatic events during the war as well as afterwards (Isaksson 2008: 8). During the war, women were raped, children and men were abused and killed, and houses and property were destroyed. Discussions about some of the atrocities that have occurred are difficult; in Roma culture, honour is a key value. To talk about rape, for example, is a taboo. Most of the Balkan Roma neither can nor wish to return to their home countries. They have been displaced from their former home areas and just by being Roma they are vulnerable to continuing violence and discrimination (Government Offices of Sweden 1997: 21). In Sweden most of the Balkan Roma live in segregated areas with other Roma and people with other ethnicities (SOU 2010: 181). The Roma themselves do not choose to live in these areas, but are located there by the officials. Because

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of the widespread discrimination in Swedish society it is difficult for them to move to other less segregated areas. Unemployment among Roma is high. Due to the Swedish prohibition of ethnic registration in official records there are no public data available regarding unemployment amongst Roma, nor are there any figures on how many Roma are registered as seeking employment. There are, however, estimates based on the Roma peoples’ own statements that indicate unemployment rates of between 70 and 80 per cent. However, unemployment amongst Balkan Roma in Sweden is probably lower. It is likely that, in contrast with other Roma groups, many Balkan Roma both had worked and completed high school in their home country, factors that may have given them an advantage in Swedish labour markets (SOU 2010: 367–8). Roma people, health and well-being Several studies highlight a relationship between ethnicity and health (e.g. Wiking, Johansson and Sundquist 2004: 580, Shaw, Dorling and Smith 2006: 196, Nazroo and Williams 2006: 238, Natarajan 2006: 25–61, Rostila 2008: 6). Research indicates that numerous groups of migrants have a higher mortality rate than majority populations (Nazroo and Williams 2006: 238, Rostila 2008: 134) and that there is a link between trust and life expectancy and selfrated health (Rostila 2008: 42, 68). The Swedish Government Offices Report (SOU 2006: 248–50) concluded that racism and discrimination have a major influence on people’s physical and mental health and well-being. Numerous studies conclude that the Roma people have worse mental and physical health than the average non-Roma Swedish population (e.g. Government Offices of Sweden 1997: 35–41, SOU 2010: 429, the Swedish National Institute of Public Health 2010: 10, 61). Many Roma children do not get the necessary help from Swedish health care due to deficient information to families on how to access services, and social exclusion by the larger society. Lack of knowledge about health services is one of the reasons why many Roma do not seek medical care as often and as quickly as needed. Other reasons for not visiting health services are that the Roma perceive that they are not understood by staff, that their traditions and values are not taken into consideration and generally feel that they are discriminated. Additionally, poverty and poor living conditions in the residential areas of Roma people contribute to increased ill-health and morbidity as well as reduced life expectancy among Roma people (The European Commission 2004: 2, Sepkowitz 2006: 1708). Much of the morbidity among the Roma population can be affected by social exclusion, unemployment, passivity, years of living in tents and caravans (Government Offices of Sweden 1997: 36). Although there is no way to track morbidity rates amongst the various Roma groups in Sweden, the source here has stated that the use of prescription and traditional medicines is high

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(Government Offices of Sweden 1997: 39). Furthermore, it is quite likely that many Balkan Roma suffer from poor physical and mental health, in many cases related to events occurred during the civil war. Interviews performed by the Swedish National Institute of Public Health (2010: 55–60) show that Roma people perceive good health as a collective matter with the wellbeing of the family as a central factor. The possibility to preserve the Roma culture and to increase group solidarity are important factors leading to perceived good health. Important cultural values considered to lead to health include having an employment that allows one to feed the family, and having a proper residence and keeping it tidy. Poor personal economy, lack of proper residence and the stress and anxiety that follow this, are seen as obstacles for good health. Furthermore, not to be discriminated and to be accepted by the society are perceived as essential factors for health. The Swedish National Board of Youth Affairs (2009: 4) found that the Roma identity is strong among Roma adolescents and that being a member of a special community (the Roma fellowship) provides an important basis for the adolescents’ self-image. Roma adolescents feel that they are caught between their parents’ expectations and the expectations of the majority community. Thus, positioning themselves in society may be difficult. To switch between the Roma identity and the expected role by the majority society is a strategy for adapting to the identity collision. This situation is an example where the Roma fellow community might function as an arena of refuge. Family and relatives have an important role in the adolescents’ safety net in situations of crisis. Nevertheless, it is common among Roma adolescents not to disclose their Roma origin in order to avoid discrimination from the non-Roma society. Torsheim et al. (2004: 56–7) concluded that there are remarkable gender differences for 15-year-olds on subjective health complaints among young people in general (not Roma adolescents specific) in the Balkan countries. Adolescents tend to rate low for life satisfaction and poor health. Girls report that their health is poorer than boys, a value that increases with age. The authors claim that their findings are in line with other studies performed in Europe. However, the results do not specify health and well-being among young Roma. Another study on adolescents in general by Cotton Bronk (2008: 718–24) found that support and care from family and friends, as well as material comforts and staying out of trouble, are essential factors for a good life. Personal qualities such as happiness, the ability to achieve personal goals and willingness to help others were additional factors for a perceived good quality of life. Studies conducted on adult Roma Travellers in the UK provide additional evidence for reduced health status in Roma groups. Van Cleemput and Parry (2001: 131) found that adult Roma Travellers reported a significantly poorer health status than the control group. The respondents distinguished fresh air,


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freedom and “a choice and ability to live among an extended family” (Van Cleemput and Parry 2001: 206) as essential health-related benefits of living as Travellers. Another study found that poor health was accepted as a normal feature among the Roma and Travellers (Van Cleemput et al. 2007: 207). Social capital as a determinant of health Portes (1998: 6) defines social capital as “the ability of actors to secure benefits by virtue of membership in social networks or other social structures.” According to Portes, the concept of social capital has extended from an individual feature to an asset of a community or even a nation. Social capital contributes to forming a person’s social competence. Additionally, it brings attention to how such a nonmonetary form of capital can be a source of influence and power in a society. Portes (1998: 9–11) claims that social capital has three basic functions: social control, family support and extra-familial networks. Social control seeks to maintain discipline and promote compliance among the members of a network. Social, emotional and economical support from the family is a weighty factor which influences a child’s development and educational achievement. Family support might also work as a counterweight to the negative impact of the loss of community bounds, for example, among migrants. However, the most important advantage of social capital is the network outside the immediate family, extra-familial networks (Portes 1998: 14). These networks may ease an individual’s access to employment, housing, funds, peer-based learning from experience, increase mobility opportunities, etc. Mobility includes the possibility to climb the social-status ladder, which Portes sees as essential to integration into a new society. Another advantage of social capital, particularly for immigrants, is the issue related to ethnic niches and enclaves. According to Portes (1998: 13), ethnic niches emerge “when a group is able to colonise a particular sector of employment in such a way that members have privileged access to new job openings, while restricting those of outsiders.” Enclaves, Portes (1998: 13) writes, are “dense concentrations of immigrant or ethnic firms that employ a significant proportion of their coethnic labour force and develop a distinctive physical presence in the urban space.” Portes claims that niches and enclaves for many immigrants are sources for resources; as for example, starting-capital or entrance to the labour market. Both niches and enclaves are entirely network driven. A prominent feature of social networks, according to Rostila (2008: 69), is the migrants’ (whether native or immigrant) homophily. This concept refers to the idea that people build relationships principally with those who are similar to them. Homophily influences the interactions experienced, the information received and the attitudes formed and has implications for migrant health. Migrants in networks which include natives report better health than those

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in a homogenous network, claims Rostila (2008: 69). However, poor socioeconomic conditions and unhealthy behaviour have an obvious impact on the overloaded risk of the poor health of people who are already disadvantaged, Rostila notes. He discovered that migrants in closed networks maintain and reinforce unhealthy socioeconomic conditions and norms. In the efforts to prevent and explain ethnic health inequality, Rostila (2008: 70) suggests that it might be vital to consider the migrants’ network features. Hyyppä (2007: 31–2) sees fellowship as a part of social capital. According to Hyyppä, within a fellowship there is a line – visible or invisible – dividing the members and non-members. The fellowship provides its members with a sense of security and codes for behaviour. The individuals identify themselves with their fellows. Consequently their self-esteem increases as they feel themselves as important group members. Hyyppä (2007: 33) explains further that we-spirit (a feeling of affinity) occurs as members interact. It is this feeling of affinity upon which social capital is built. We-spirit is based on a collective history, a unison cultural background which not all the members necessarily have been part of in person. The awareness of the unison experience, however, is enough. The salutogenic view of health The present study is inspired by Antonovsky’s (1979: 14, 35–6, 47–64, 123–97) view of health involving a comprehensive picture of the human being, encompassing a person’s whole life situation, not just their medical situation. For Antonovsky health is a multidimensional ease–disease continuum. He was interested in how people manage stressful situations and the feeling of lack of control in their life. Instead of the causes of a disease, the focus was on identifying coping resources. Antonovsky (1979: 123–59) formulated the answer in terms of Sense of Coherence (SOC), which consists of: an ability for people to understand what happens around them (comprehensibility); an ability to manage the situations on their own or through significant others in their social networks (manageability); and the ability to find meaning in different situations in their life (meaningfulness). Antonovsky (1988: 27–8, 138) became familiar with factors he came to call generalised resistance resources (GRR); high intelligence, money, cultural stability, social support, higher self-esteem, etc., everything that strengthens the human to fight against various stressors. The concept of SOC was the result of an attempt to understand both what was common for the GRRs and the process through which the GRRs were linked to health. According to Antonovsky (1988: 138), people with high levels of GRR will consequently have a strong SOC and thereby good health and well-being. He points out that SOC is not a particular coping strategy, but a condition that helps the individual in choosing the most appropriate coping strategy to confront the stressor.


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Antonovsky (1993: 971) noted that bonding and attachment is essential for the individual’s SOC as well as central to a person’s survival. Furthermore, he claimed that the disadvantaged in a community are often treated as if they were invisible. The less powerful and the less culturally integrated a person is, the smaller the chances that the daily impressions a person receives from the surrounding environment are understood as meaningful information. Also, the complexity of these impressions will make it difficult for the person to know how to handle situations. These are, according to Antonovsky, the core problems of minority groups. The concepts of quality of life and well-being Research on quality of life (QoL) has a positive effect on a person’s resources and is grounded on the interest in aspects of a person’s well-being (Lindström 1994: 40). Quality of life research is often interested in the same life-enhancing mechanisms as Antonovsky’s salutogenic approach is, for example, in defining the population’s general resistance resources. “QoL can further be seen as the capability to fulfil one’s needs, improve one’s resources or reach one’s life objectives i.e. developing strategies and skills to manage life” (Lindström 1994: 40). For Lindström (1994: 42–3), the first word – quality – stands for the characteristics of something, most often a high degree, or a positive value. The word life has a religious, philosophical and biological explanation. For people in general, the terms ‘QoL’ and ‘positive well-being’ are two different ways of expressing the same state. The foundation of QoL is based on positive values and it is mostly based on subjective elements. Brülde (2007: 180–90) considers the concept of QoL useful for contrasting lifespan, or a person’s living standard. He notes that the concept is often used in the medical field where it stands for a compilation of various ‘soft’ or psychosocial variables such as well-being, economy, relationships, and working life. Brülde, however, sees this as problematic, as quality of life and health often tend to be integrated. He sees QoL in terms of how people value their own lives. Brülde (2007: 197–8) associates QoL with authentic happiness. He also says that material goods will not necessarily make people happier and aspects such as income and consumption have only marginal effects on a person’s subjective well-being. In this connection Brülde (2007: 200) distinguishes at least two types of people: the ‘maximisers’ and the ‘satisfiers’. In contrast with the satisfier, who aims for the acceptable, the maximisers aim for the best, and only the best. The satisfiers, though, are happiest. There are additional studies showing that material-oriented people are less content with their lives than people who value higher personal issues such as personal development and intimate relations. Östberg (2001: 241) sees well-being as a self-counted, internal and subjective sense of feeling good, feeling happiness, satisfaction and comfort. Studies

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indicate a positive correlation between social support and well-being (e.g. Östberg 2001: 252, Brolin Låftman and Östberg 2004: 81). According to Brolin Låftman and Östberg (2004: 59), social support is likely to strengthen an individual’s identity and recognition. The family and the number and quality of relationships of children of the same age and health are seen as the most essential sources for social support. Furthermore, a friendly atmosphere in the school classroom has a positive impact on health. Memberships in sports- and other clubs are factors that might influence children’s social integration and sense of belonging. Aims of the study The aims of this study were to examine how a group of Roma adolescents in West Sweden perceive the concepts of health, well-being and quality of life, and further, to investigate the degree to which they consider themselves able to cope with their own life situation within these areas. This study functions as a pilot study to help refine future interviews with Roma people in West Sweden. Methods This study uses qualitative data, gathered via six, about one-hour long, in-depth interviews; two focus group interviews, two paired interviews and two individual interviews, with a total of fourteen interviewees. Our decision to use mixed interview methods was based on cultural and practical aspects: taking into account some of the respondents’ young age, we considered focus-group interviews as most suitable as some expressed to be uncomfortable with an individual interview. However, some interviewees asked specifically to be interviewed individually. Besides, boys and girls, according to Roma culture, were not to be mixed (see also NHV 2000: 15). Additionally, the data collection methods varied due to the fact that interviewees went to different schools and did not all know each other. When recruiting people to group interviews, we were assisted by a Romani Chip language teacher working with potential interviewees in several schools in the area. We asked him to help us to find and select a mix of people for the interviews. In order to maintain coherence through the various interviews, all the interviews were done by the same interviewer. The interviews were conducted mainly in Swedish. Some of the adolescents had arrived in Sweden just a couple of months before the time of the interviews and thus, participants’ comprehension and usage of the Swedish language varied. The same Romani Chip teacher mentioned above also served as an interpreter in some of the interviews in case of confusion with understand-


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ing each other. He did not interpret all of the conversation, but only parts of it when the respondents did not understand, or did not know how to express themselves in Swedish. Working with an interpreter, one needs to take some important aspects into consideration; one can never be absolutely sure that the interpretation is correct, nor that the interpreter has been absolutely neutral in his interpretation (Ödman 2007: 77–81). There is also a risk that the interpreter would not translate the questions exactly the same way as the interviewer expressed them. To ensure these factors would not affect our interviews, or at least to minimize the risk for misinterpretation, we reframed and reposed questions and presented follow-up questions around the topics. The climate during the interviews was relaxed and flexible. The interviews were conducted like conversations. The interview themes were presented to the whole group in the beginning of each interview, followed by a discussion on each theme, with the individual participation or the group. The interviewer made sure all the respondents had a chance to express their own ideas and thoughts. For the interviews, a thematic interview guide was used. The interview guide was based on Antonovsky’s (1979: 14–197), Lindström’s (1994: 39–45) and Brülde’s (2007: 180–200) thoughts about health, well-being and quality of life as well as Antonovsky’s (1979: 123–59, 1988: 27–8, 1993: 971) concept of Sense of Coherence. The interviews were transcribed verbatim, even noting latent content such as laughter, hesitation and long periods of quietness. (Elo and Kyngäs 2007: 109). The created categories were both empirically and conceptually grounded by taking into consideration both the manifest and latent contents. The data was analysed through a qualitative content analysis as set out by Elo and Kyngäs (2007: 107–15). The four aspects of health, well-being, quality of life and coping strategies were the main themes of the study forming a general starting point of the analysis. The respondents, eight girls and six boys, are all from different Balkan countries, and live in the same area of West Sweden (Västra Götaland). This is just a small sample which cannot be representative for the all the Roma in Sweden. We believe, however, that this study may give an insight to the perceptions of the group in question, namely the adolescent Balkan Roma in West Sweden. The Roma language teacher mentioned above was a key contact in terms of participant recruitment: he discussed potential participation with several adolescents living in the area and helped the research team select the 14 interviewees. The inclusion criteria for participation in the study was: the participants had to be adolescents aged between thirteen and eighteen, the number of girls and boys in the groups should be equal, and the potential participants should originate from different parts of the former Yugoslavia and currently reside in West Sweden.

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Results Perceptions on health and well-being The most common understanding of the meaning of the health concept was to feel good and to have the strength and energy to manage daily life. Not to be influenced by others, to be independent, to think positively and to be happy and healthy – as opposed to being sick due to a severe disease – were other ways of understanding the concept of health. To feel secure (including a feeling of safety and not being afraid of anything), too, was regarded as an essential factor for health. Besides, when the respondents felt loved and knew that they belonged to a family, they felt secure. Bullying was felt to decrease the sense of security and to lead to isolation, loneliness, lack of self-confidence and depression. Some respondents had experienced discrimination and bullying in one living area but not in another; hence they claimed that the level of discrimination and bullying are dependent on the neighbourhood. When I moved here two years ago, I lived in Y before that, and there were numerous Swedes there and I was never ever called ‘Gypsy’ or ‘Roma’, they knew I was Roma, but they regarded me as a Serb. Then when I moved here, when I said I was Roma, then everybody went: ‘oh, fucking Gypsy!’ And that was like here, and I didn’t know there was that much discrimination against Roma people before I moved here, ’cause there (Y) like, it’s a small town and people saw each other as ordinary people. I don’t know if this is in all places but here in X, there are a lot of immigrants all over, or so I think, and it becomes like that, that you turn against each other like that. I believe it is wrong you know.

Self-confidence was considered to consist of having faith in oneself and a positive attitude and belief in a better future. With strong self-confidence a person was believed to be better equipped to participate in and influence a society. For some, health was to be able to manage life despite suffering from small or chronic health problems. There was agreement that physical and mental health go hand in hand and that the two influence each other. A common view was that health is a continuum. The school as health determinant was explained by both external (the influence of schoolmates, the quality and characteristics of teachers – particularly their fairness – and the feeling of security/insecurity in the school environment) and internal factors (the ability to reach one’s own expectations of oneself, the ability to cope with deadline pressure and being praised for good work). All respondents liked being at school and also enjoyed the lessons. The respondents expressed that education is needed in order to get a job. They also stated that a good job with a satisfactory salary is needed in order to have a good future, but also in order to have the means to purchase or buy things you need, or to travel. Almost all the adolescents emphasised a good economy


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as a prerequisite for well-being. They called this financial freedom. Regarding school, several adolescents believed that a good education would increase their self-esteem. The school played a significant role regarding the respondents’ sense of well-being. Many of the respondents said that working under pressure at school was stressful and that there were times when they felt a lack of energy to manage the demands. With regard to the teachers’ impact on the adolescents’ well-being, it depended on whether the teachers acted fairly and whether they gave praise. They referred to teachers who gave them poor marks or no praise for schoolwork despite having done the same or an even better job than their classmates. Such unfairness made the respondents feel depressed, offended and inferior. Happiness was considered an aspect of well-being. In addition to school, even family and physical activity made them feel happy. Physical activity made the respondents feel healthier, more energetic and less tired. Well-being was considered in relation to the social network within the family, the social support they provide, and to having married parents (meaning not divorced or cohabitants). Friends were seen as a central factor for well-being. Friends provide social support and help in different situations and together with them ‘you are having fun’. When with friends, the respondents felt relaxed and free, and friends functioned as a stimulus – for example, pushing each other to exercise or to work harder at school. In their friends’ company they felt valued. Furthermore, an aspect of well-being was pride, meaning to be free. The respondents explained that they felt free when they were able to do whatever they liked, or to do similar things to everyone else, if they so wished. All respondents reported that they were proud to be Roma and good citizens. When I want to show that I am Roma, I want to show that I’m a good Roma and that my people are good people, if you know what I mean. . . . I want people to say ‘Hey look here, even they [the Roma] can do something, and they can also accomplish things, not only the Swedes or Kurds’, if you know what I mean.

The respondents believed that a person’s living conditions influence the sense of well-being. It was considered vital to live in the same area as family and friends, as well as near the school and in an area with work opportunities. Perceptions on what determines health and well-being Family was the most important element in life for the respondents and was declared a determinant factor of health. It was felt to be important to have good relationships with those at home and also to be confident that everyone is doing well within the family. The respondents felt it was important to know that their family was reliable (e.g. no crime, abuse or violence problems) and open and that they could count on the help and support of the family in all

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situations. (In addition to those living under the same roof, the adolescents considered grandparents, aunts/uncles and cousins as members of the family.) Many of the respondents considered personal and home hygiene, as well as the outdoor environment to be essential determinants of health. Bad water quality and dirt and rubbish on the streets were regarded as influencing health by spreading infections and disease. Other health determinants mentioned were personal economy and poverty; to live in misery and squalor, instead of in a real house with warm and clean water, influences health. Also, being able to afford a doctor when ill and to buy the necessary medicine were mentioned as the keys to good health. Politicians were seen as having a role in relation to the health of a population through policy-making and legislation. The individual’s own influence on health was considered in relation to the strength of self-esteem and self-knowledge, and the person’s tendency to think positively or negatively. Other aspects mentioned were stress, personal expectations of the future and health behaviour (diet, smoking, drug- and alcohol use, etc.). Access to and the possibility to use a computer, and particularly the Internet, were seen as important tools for well-being. The respondents used the Internet for communicating with their friends on-line as well as for widening their social network. Additionally, they thought that the Internet provided them access to information and knowledge which they felt were needed in a modern society. Perceptions on quality of life Quality of life was perceived as having something to do with the future; the degree to which one is able to fulfil personal goals, dreams and desires in life and also the degree to which one values one’s own life. Quality of life was also expressed as being healthy and was attached to social factors such as being able to sing, draw and play football. Furthermore, achieving high marks in school was seen as an additional aspect of QoL. Having a good education was understood as the key to a good job (an enjoyable job where one earns sufficiently) and would ensure good QoL. The respondents thought that the feeling of freedom is an aspect of QoL; for example, permissive parents would ensure more space and possibilities to make decisions independently. Having a husband or wife and children one day would contribute to somebody’s quality of life. Many of the aspects connected to the concepts of health and well-being were also connected as aspects of QoL, such as family, friends, living conditions and being in Sweden. Many respondents perceived that poverty would have been their destiny if they had stayed in their home country. Moving to Sweden was a chance for them to avoid poverty and to build a meaningful and quality-rich life. In Sweden they saw better possibilities to develop and to make something worthy of life.


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A major factor influencing a person’s QoL would be the risk of living in a country at war with constant fear and traumatic experiences, death, violence and noise. In contrast, staying in a peaceful country like Sweden meant quietness, calmness and security and was felt central to a good quality of life. Subjective health, well-being and quality of life All respondents rated their subjective physical and mental health as good. When they talked about how they personally felt, they did this based both on their own and their families’ current living conditions. All respondents stated that they feel healthier now living in Sweden than they did in their home country. They also declared that it is better to live in Sweden than in their country of origin; they perceived to have a better life here. In addition, they felt that they have been treated better in Sweden by the authorities. In Sweden, they said that they look forward to the future more often and have a better economical status and possibilities for learning and education. Thus, the respondents seemed to be satisfied with their QoL. The respondents expressed a strong identity as Roma. However, the adolescents found themselves in the intersection between society and their parents, with often controversial expectations and demands. They shifted their culturebound identity between being a Swede and being a Roma from their country of origin with other values and traditions. Nevertheless, they strongly expressed that they were proud to be Roma and they did not try to hide their Roma ethnicity. Coping strategies In situations of discomfort or stress, the respondents first of all sought help from family, friends and teachers. In case of need for protection and help against troublesome people, the respondents often turned to older brothers or male cousins, but also to other male friends and family members. Their social support made them focus on positive thoughts and on the ‘bright side of life’ during difficult times or problems in life. To learn to accept and cope with problems (e.g. diabetes, depression, loneliness, bullying, and discrimination) were seen as important coping strategies. Regarding bullying, some did not want to accept it at all and responded by, for example, showing that they did not care or showing that ‘even’ Roma are good, honest people that have the ability to accomplish things. Some of the respondents saw their own personal values, the Roma traditions, and to be proud of whom one is, as resources to resist stress and problems in life. but I, I may say like this that those who say Gypsy and things like that, they have made me, stand, yes, I’m a proud Roma you know. I’m a proud Gypsy. So they’ve really made me like this. When I was living in Z then I didn’t think of this thing with Gypsy . . . but

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when you arrived here . . . and I know that I’m much better than them and therefore, yes I’m a proud Roma.

For some respondents, to praise oneself, worked as a coping strategy. Some were challenged by difficulties, and others tried to deny, or not to think about existing problems. One respondent who had experienced a hard period in life said: ‘At times I didn’t care about it very much, I was kind of getting used to it. Then I started thinking, maybe I should change my own behaviour and way of seeing things instead . . .’. Commonly expressed attitudes in difficulties were that ‘life must go on’ and ‘you can never stop . . . if you want to achieve something, you will have to fight for it.’ Holding this kind of attitude made them feel stronger, they felt. Furthermore, to do fun things was a coping strategy which helped the respondents to forget their troubles. The beliefs that ‘everything has a reason’ and that ‘things would probably be better next time’ were common. I believe that God has decided how it’s supposed to be, how I’m supposed to live my life, and then he puts me through a lot of tests that I’m supposed to go through and manage . . . . Stuff like that I believe in.

Discussion of the research method The aim of this article is to report the respondents’ perceptions on health in general, that is, how they understand the concept of health, and what health means to them in a semantic way – and how they define their health. The adolescents may not be regarded as representative for all Roma adolescents; nor was generalizability a focus of the study. The adolescents may however be regarded as representative for the Balkan Roma adolescents living in this specific area of West Sweden. They are living in ‘true’ Roma families, meaning that they live according to traditional Roma values and they are open about their Roma identity. They are children of working-class families, the lowest social economical group in Sweden; moreover, they all live in segregated areas in West Sweden. The participants in this study ranged in age from 13 to 18 (the age of legal majority in Sweden is 18), were both male and female, and came from different families (the Roma have extended families unlike Swedes). We selected a minimum age of 13 as we wanted the participants to regard themselves as teenagers, and because this is the age in which students in Sweden typically begin their high-school studies. The participants also varied in terms of time of arrival to Sweden. Some were born in Sweden while other participants had lived in Sweden only a couple of months. None of the adolescents interviewed were married. This is an important factor, as for Roma, it is of importance not to be sexually active before marriage. This is a matter of honour which is very important in Roma traditions and manners.


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This project encountered difficulties in recruiting appropriate participants because most research taking place among the Roma in Sweden is focused on identifying problems, which has resulted in mistrust within the Roma community towards researchers. The Roma language teacher was a valuable liaison between the researchers and potential participants, and we consider the young Roma who participated in this study were representative of their peers. The qualitative study model we used is not concerned with obtaining large numbers of study participants, but rather, with reaching a saturation level in information gathering (Glaser and Strauss 1967: 61–5, Guest, Bunce and Johnson 2006: 74–9), which means that no additional data are being found in further interviews. Discussion of the results The Swedish National Institute of Public Health (2010: 55–60) conducted a study on the meaning of health within the Roma groups and found that Roma perceive their health in relation to their families’ health. Roma identity, the preservation of the Roma culture and the feeling of group solidarity are essential aspects of health. To have a job or school to go to, to experience an acceptable economy and to have the ability to practice good hygiene and tidiness as well as to feel good, secure and feel accepted by society are all described as essential determinants of health within Roma groups. A recent study on how Roma view their health conducted by Fundación Secretariado Gitano (2009: 70) in seven European countries found most of them consider themselves healthy, which is in line with our results. The results of the study confirm the understanding of social capital as described by Portes (1998: 6–14, 21), Hyyppä (2007: 31–3) and Rostila (2008: 69–70). The respondents saw family and friends as people who provided them with support, trust and love. The family was expected to give them a good upbringing and to make them ‘good’ people. The family supported them by, for example, making important decisions, which was appreciated by the adolescents. Leaning on family support or turning to friends were fundamental to coping with daily problems, stress and difficult life events, and thus seen as crucial for health, well-being and quality of life. It was noticeable that whatever the subject of the conversation, the respondents discussed it in light of their families. This might be interpreted by the respondents reflecting their whole life situation through the entire family and that they did not see themselves so much as autonomous individuals. A dimension of the respondents’ social network is to see it as a general resistance resource (GRR). With help from GRR, the individual may overcome stress, illness and other difficult life events, as Antonovsky claims (1979: 123–59,

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1988: 27–8, 138). Social support, which the individual receives through one’s social network, is significant to the individual’s sense of coherence (SOC). Family and friends function as resources for the individual to understand and manage situations around them. When the individuals comprehend the world around them and are able to manage with different situations, the chances of understanding the meaning of these events for one’s life increase. The results of the present study showed that the Roma adolescents had friends with various origins, including Swedes. The preferred friends, though, were adolescents of Roma origin, as the respondents felt more of a fellowship and relaxed in their company. When the Roma associate with equals, they may be confident that they will be understood and accepted as they are. Among people with similar characteristics, they felt it was possible to be open. This is what Antonovsky (1993: 971) names as bonding which he sees as essential for the individual’s survival. Hyyppä (2007: 31–3) claims that a we-spirit rises out of similar backgrounds and experiences and that fellowship increases selfesteem. These aspects were mentioned by several respondents as important to their health and well-being. To prefer friends from the same group, which Rostila (2008: 69–70) calls homophily, has an impact on the group’s interactions, attitudes and perceptions of information. A group provides a sense of security for its members within invisible boundaries – a framework of rules, norms, values and traditions which legitimate a member’s behaviour and actions. It seems like security was a significant factor which also influenced the respondents’ subjective perceptions on health, well-being and quality of life. Having no friends at all would have made them ‘feel like a total loser’. Whether or not a person has experienced particular events in their past is, according to Hyyppä (2007: 34), not essential. Of importance is that the person in some way may refer to these events through the experiences and the past of family members. All respondents had their roots in a country at war. They had been exposed in varying degrees to discrimination and the threat of poverty. The somewhat similar backgrounds of the respondents are one of the bounding factors for the Balkan Roma people which contribute to their strong we-spirit. Consequently, one may assume that the behaviour of a social group (in this case the Balkan Roma) is grounded in the group as a whole and its collective behaviour and past. This means that it is not the individual’s separate behaviour that is important, but that of the whole group. As to social capital, in this particular case it may be seen in relation to two factors. First, we consider that social capital has its foundations in the entire history of the Roma people as a whole. The Roma people have been discriminated for centuries, which partly explain their learned mistrust of society. They have had to rely on themselves and the Roma community (Government Offices of Sweden 1997: 23, Montesino Parra 2002: 54–63, The European


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Commission 2004: 9, Isaksson 2008: 7, SOU 2010: 382). Secondly, we see the aspect of social capital and family in relation to the Roma adolescents’ background in the Balkans. The Balkan countries do not have a welfare state regime regulating poverty relief, uplift of social exclusion and insurance against risks (Sotiropoulos 2005: 267–78). In these countries the population’s social security benefits are generally very low. Furthermore, the Balkan Roma have been exposed to severe persecution (Isaksson 2008: 1–18). Therefore, Balkan citizens tend to rely on family and friends for support and help instead of society. The consequence of increasing individualism in a society may lead to a feeling of lack of security. It is also assumed that in an individualised society a person has more freedoms. However, as the freedom increases, security decreases. The discussion with the interviewed adolescents about freedom engaged them for quite a while. They said that they were happy with the sense of freedom that friendship generated, yet at the same time they expressed satisfaction with the rules set by their parents and the Roma traditions narrowing their freedom. For the Roma adolescents, the connection with family meant security and better self-esteem. According to Rostila (2008: 69) mixed relationships are the most healthenhancing. We found that the Roma adolescents both preferred Roma friends and associated mostly with Roma. Nevertheless, the adolescents reported that they were pleased with their lives, to have good health and a relatively good quality of life. Our results are thus more in line with Hyyppä’s (2007: 31–4), who found that homophily and sticking together with like-minded people are health-enhancing. The explanation for our positive result might be found in Antonovsky’s sense of coherence concept (1979: 123–59, 1988: 27–8). Regarding the SOC concept, it is essential that the individual has high scores for its three cornerstones: that they see different life events as meaningful; that they comprehend these events; and that they have the tools to manage difficulties and stress in their lives. These three components are reciprocally related. Thinking of these elements in light of the results of this study, we may conclude that the interviewees probably had good levels of all three components. It is well known that social capital is a determinant factor of health (e.g. Brolin Låftman and Östberg 2004: 57–62, Stansfeld 2006: 148, Nazroo and Williams 2006: 258, Hyyppä 2007: 31–4, Rostila 2008: 69–70). Antonovsky (1979: 114–17) sees social capital as a general resistance resource important for the individuals sense of coherence and states that bonding and attachment are essential for the individual’s survival (Antonovsky 1993: 970). There is, however, not enough research on how health and social capital are linked. Relating the results of the present study to Antonovsky (1993: 969–74), the bonding and attachment that occur in the structure of a relationship might be understood in two ways. The structures of relationships with poor fellowship,

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little trust and understanding will be perceived as complex, conflicting and/ or chaotic. On the other hand, trustworthy, emphatic and friendly fellowship will be understood by the individual as coherent, civil and/or coercive. Our findings indicate that the link between social capital and health might be found in the bonding ties and the sense of security that people perceive within social networks. Relationships built on trust, understanding and fellowship will be perceived by the individual as coherent. The source for better health regarding social capital might be in the intersection between homophily, the way of understanding the world and SOC. A person’s background – traditions, culture and history – influences the way of interpreting the world, and speaking and acting no matter what the background looks like. Nevertheless, in this case, the Roma respondents shared a similar background which was the premise for the way in which the respondents acted towards things and interpreted their meanings. ‘Things’ include all phenomenon and situations that might occur in people’s everyday life. Conclusions The results of the study indicate that the adolescents’ perceptions of the concepts of health, well-being and quality of life overlapped and that it was difficult for them to make a distinction between these. The Roma adolescents considered health as feeling good, being healthy and having good self-confidence. Furthermore, they considered that health has both a physical and mental dimension with a reciprocal relation, and that health is a continuum. The concept of well-being was expressed in terms of social support, security and happiness. In addition, the adolescents considered well-being as being proud, having financial freedom and also being comfortable with their lives. Aspects such as feeling well, social support, membership in a family and its networks, the freedom to do their favourite activities, as well as education and employment; all these were factors which the adolescents considered to ensure a good quality of life. As to the question of how they perceive their own health, well-being and quality of life, most of the Roma adolescents answered fine or good. A few perceived these as very good. Regarding their subjective health they valued it in relation to their overall life situation, including family. As ‘everything was fine right now’, the adolescents also regarded their health as ‘good’. The sense of wellbeing was related to circumstances in the environment. If things around them were fine, they felt fine. Furthermore, the sense of well-being was expressed as a feeling (feeling happy, feeling pride, etc.). As to subjective quality of life, the adolescents valued it in terms of the future and also connected it to their bonds to family and friends and the network and benefits that accompany this. The Roma adolescents were satisfied with their life situation and living in Sweden.


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The most common way to cope with stress and difficulties was to lean on social support from family. Another coping strategy was to try to think positively and to stick to their life values and traditions which helped to maintain their self-confidence and self-esteem. Marginalisation is regarded as an unwanted process. The Roma adolescents mostly associated with other Roma, and preferred tight relationships within the Roma community. Consequently, we interpret this to mean that they did not consider themselves to be marginalised. We further consider that there is a distinction between marginalisation and freely chosen homophily. What matters here are the elements of wanted versus unwanted. Bonding with a group is a wanted process and is health-enhancing even though it might simultaneously lead to isolation. However, when isolation is a result of discrimination and marginalisation, then it becomes harmful to health. To conclude, it might be suggested that a determinant factor of health can be found in the process of homophily, which seems to be a salutogenic factor and a general resistant resource of the Roma people and thus health-enhancing. The question of integration follows. The integration debate that is taking place today is often articulated and desired by non-Roma and does not take into consideration the health-enhancing homophily, traditions and culture described here. The question is whether integration, as such, is good or bad. References Antonovsky, Aaron. 1979. Health, stress and coping. San Francisco: Jossey-Bass. ——1988. Unravelling the mystery of health: How people manage stress and stay well. San Francisco: Jossey-Bass. ——1993. Complexity, conflict, chaos, coherence, coercion and civility. Social Science & Medicine 37(8): 969–74. Brolin Låftman, Sara and Östberg, Viveca. 2004. Barns och ungdomars sociala relationer och psykiska välbefinnande. In Bygren, Magnus, Gähler, Michael and Nermo, Magnus. Familj och arbete: Vardagsliv i förändring. Stockholm: SNS förlag. 56–89. Brülde, Bengt. 2007. Kvalitet, värde och livskvalitet. In Strannegård, Lars, ed. Den omätbara kvaliteten. Stockholm: Norstedts Akademiska Förlag. 175–201. Cotton Bronk, Kendall. 2008. Early adolescents’ conceptions of the good life and the good person. Adolescens 43(172): 713–32. Elo, Satu, and Kyngäs, Helvi. 2007. The qualitative content analysis process. Journal of Advanced Nursing 62(1): 107–15. Fundación Secretariado Gitano. 2009. Health and the Roma community: Analysis of the situation in Europe. Bulgaria, Czech Republic, Greece, Portugal, Romania, Slovakia, Spain. Cuadernos Técnicos Nº 97. Madrid: FSG. Glaser, Barney G. and Strauss, Anselm L. 1967. The discovery of grounded theory: Strategies for qualitative research. New York: Aldine de Gruyter.

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