“I am not a guinea pig”: quality of life and methodological issues in the research with Latin American men living with HIV/AIDS in Japan

Abstract

In this study, the methodological difficulties that we encountered in our ethnographic investigation with a group of male HIV-positive Latin Americans living in Japan are discussed. From April to September 2002, 2003 and August 2004, 20 People Living with HIV/AIDS (PLWHA) were interviewed. A set of six 60-min interviews was conducted with 28–37-year-old HIV-positive males. Three of them were illegal aliens and seven of them claimed to be homosexual. Participants were contacted through a hospital, a Non-Government Organization (NGO), and by snowball sampling. Our analysis of the interviews indicated that informants poor health education background and scepticism about positive outcomes of research in their lives closely related to our informants unwillingness to participate in research projects. Interviews brought about cathartic effects for the informants. Issues related to citizenship and legality resulted in unfavourable perceptions of health related research, structural barriers in the provision of medical care, and detrimental effects in the QoL of these men. Our informants’ QoL closely related to a regime of “normality” and “unhealthy life” prior to sero-conversion. Finally, QoL for PLWHA needs to be understood in relation to the global consumer culture.

• People living with HIV/AIDS
• quality of life
• migration
• Latin Americans
• Japan
• Nikkeijin

Introduction

The advent of antiretroviral1 therapies has represented a major event in health care for people living with HIV/AIDS (PLWHA). Between 1996 and 2002, an increase in People Living with AIDS (PLWA) using highly active antiretroviral therapy (HAART) has translated into patients with lower viral load, increased CD4 count, and lower rates of new opportunistic infections (Moore, Keruly, Gebo & Lucas, 2005). In addition, this situation has caused a shift in the ways medical care for PLWHA is provided. Rather than a death sentence, AIDS is regarded as a chronic aliment, and medical practices have been oriented to promote “illness management,” instead of “healing” (Baszanger, 1989 cited in Pierret, 2000).

In order to avoid drug resistance, monitoring and adherence to treatment have become the issues in the management of PLWHA. Consequently, a new area of social and medical research has grown from the lives of PLWHA. Studies have moved from projects highlighting uncertainty and surviving strategies to investigations on treatment compliance in relation to social and economic inequalities in the provision of health care (Pierret, 2000). While quantitative approaches to the lives of PLWHA abound, qualitative approaches are scarce. Researchers have paid close attention to PLWHAs’ personal relations (Green & Sobo, 2000), because stigmatisation is intrinsically the product of social relations (Goffman, 1963), and because social support seemed to influence their psychological well-being, treatment adherence and clinical outcomes. Although, promising instruments have been developed to assess quality of life (QoL) at diverse cultural settings (WHOQOL HIV Group, 2004), studies have not shown a clear cause-effect relationship between social support and QoL (Burgoyne & Renwick, 2004). In addition, the relationship between physical exercise and QoL of PLWHA has been explored but a cause-effect model is difficult to construct because exercise programmes have not been developed and/or tailored to meet the needs of PLWHA (Ciccolo, Jowers & Bartholomew, 2004). None the less, the main issue stems from the definition of QoL in itself, as “the vast literature lacks clarity, consistency, and consensus in the definition and measurement of QoL” (Geurtsen, 2005, p. 41).

Little is known about the QoL of PLWHA in developing countries (WHOQOL HIV Group, 2004). Yet, clear differences appear when thinking of QoL in geographical terms. While antiretroviral therapies have been fully included in the standards of industrialized countries, efforts to provide comprehensive AIDS medical treatments have fallen far short of international expectations in most developing countries. In the developing world, QoL for PLWHA most likely is referred to the provision of medical treatment. PLWHA in Cambodia prefer living in the present than thinking and worrying about the future. They hope to a return to a “normal” life, regain their strength and to work. In addition, they use a strategy of selective disclosure to sustain QoL (Geurtsen, 2005). Likewise, widows in Kenya, whose husbands have died of AIDS, wanted to live “normal lives.” Many of them did know their sero-status; consequently, their lives were full of uncertainty. In addition, those who knew they were HIV positive experienced worries about their illness for themselves and their children. All of them were unable to set plans for their future, in particular those dwelling in rural areas, because of restricted access to HIV testing, financial difficulties and stigma (Luginaah, Elkins, Maticka-Tyndale, Landry & Mathui, 2005). In addition, limited access to AIDS medical treatment have made PLWHA look for alternative treatments “to supplement, or replace, the standard treatments” (Power, Gore-Felton, Vosvick, Israelski & Spiegel, 2002). In northeastern Thailand, PLWHA experience the positive effects of herbal medicines on their mental well-being. They have great expectations for herbal treatments because of destitution and no access to antiretrovirals. Yet, the effects of herbal remedies do not have the same effects on their physical well-being (Sugimoto, Ichikawa, Siriliang, Nakahara, Jimba & Wakai, 2005).

The circumstances of PLWHA from developing countries living in industrialized societies are almost unknown. However, they seem to endure difficult circumstances despite their change of location. In the UK, black people who test positive are most likely immigrants facing difficulties in finding housing and employment. “Although the use of statutory and voluntary support services is comparable with white patients, black African patients” need for support may in fact be greater” (Erwin, Morgan, Britten, Gray & Peters, 2002, p. 38). In addition, black patients are in need of greater support, and non-English speakers and illegal aliens seem to endure critical situations. In general, black patients are dissatisfied with the services, and they are concerned about the disclosure of their sero-status without their consent. Although in the UK, HIV/AIDS has turned into a chronic aliment, black Africans tend to understand sero-conversion in terms of death, because they have experienced poor access to medical treatment in their countries of origin (Erwin et al., 2002).

Moreover, women from Africa living with HIV in London face two main issues: “actual and perceived stigma” and access to medical treatment (Anderson & Doyal, 2004; Doyal & Anderson, 2005). Most of them migrated to improve their financial situation, but their circumstances barely improved and ended up coping with very poor housing and money constraints. They faced psychological distress due to the lack of a familiar culture and social networks. Although they seemed largely satisfied with the health care they have received, “legal status, in particular, affected the reality of daily life, exerting a major influence on their ability to make realistic choices about both the present and the future” (Doyal & Anderson, 2005, p. 1732). In addition, important differences stemmed from incomes and education levels of these women (Anderson & Doyal, 2004). In contrast, asylum seekers in the UK seemed to be satisfied with medical treatment to the point that “nearly all the people interviewed had managed to come to terms with their diagnosis, enabling them to live positively on a day-to-day basis” (Allan & Clarke, 2005, p. 309). This is because they are most likely fluent in English and they have a proper legal status. In the context of the US, the locus of control construct was used to predict the mental health QoL of Latino American PLWHA. Unfortunately, the construct seems to be statistically irrelevant to investigate the QoL of PLWHA. In addition “acculturation” was referred to as a significant factor interfering with QoL, but it was poorly assessed as “linguistic proficiency and preference” (Burns, Maniss, Young & Gaubatz, 2005, p. 268).

Foreigners and HIV/AIDS in Japan

The Ministry of Health Labour and Welfare's (MHLW) epidemiological update – September 2004 – listed a cumulative total of 6337 People Living with HIV (PLWH) and 3164 People Living with AIDS (PLWA); 707 and 1158 of them are male and female, respectively, foreign People Living with HIV (PLWH). Moreover, the figure included 520 male and 254 female foreign PLWA (Kōseirōdōshōkanrenjōhō, 2004). The report does not disclose the nationality of the foreigners, but the Infectious Agents Surveillance Report (Infectious Agents Surveillance Report, 2002) indicates that Southeast Asians have the highest rate of infection, followed by Latin Americans and sub-Saharan Africans. In addition, the report highlights that the number of foreign PLWHA is decreasing. However, rather than a decrease in the number of infected people, a decrease in the number of HIV-tested foreigners might be occurring. According to Buckely (1997), most foreigners do not get tested because they fear job loss and deportation. In the literature, it was reported that a Brazilian worker of Japanese descent was rejected for employment after he was identified as HIV-positive. Testing was conducted without his consent, and it led to the indictment of his employer on allegations of invasion of privacy and illegal dismissal (Sugiyama, 2001).

In addition, in contrast to nationals, foreign sex workers were most likely to be encouraged to undertake HIV-testing (Miller, 1994; Buckely, 1997). Indeed, Thai commercial sex workers were reluctant to get tested because of financial problems, language barriers, and concerns about police harassment or deportation (Jitthai & Miyasaka, 1999). Concerning the ethnicity of the foreign PLWHA living in Japan, reports from the MHLW do not provide information based on the country of origin. They present only the gross number of foreign HIV carriers. Yet, they highlight the fact that South East Asians have the highest rate of infection, followed by Latin Americans (Infectious Agents Surveillance Report, 2002). The validity of this information is also questionable as Japanese health-care providers and employers are most likely to encourage the repatriation of foreigners suffering AIDS related illness (Imamura, Daido & Tarui, 2001; Sawada, Hyodō, Edaki, & Tarui, 2001; Sawada, Edaki, Fuskushima & Tarui, 2001).

The Japanese health care system is well known for its universal coverage and its diverse treatment options. Problems arise when patients do not have a permanent job and when they do not have the means to afford the cost of individual insurance, especially when they have to cover the expenses of a degenerative illness, like AIDS related diseases. Moreover, the MHLW does not permit short-term visa holders, or people who have overstayed their visa, to join the National Health Insurance System; for them, medical expenses in Japan are extremely expensive (Komai, 2001). Thus, health providers are more concerned about unpaid medical bills, than about providing assistance on humanitarian grounds. Without regard for the patient's condition, there are hospitals that require the presentation of a valid visa and/or passport in order to provide health care (Imamura et al., 2000). There are also hospitals openly rejecting foreigners because of the belief that repatriation is the only option for HIV foreigners, since AIDS is a terminal disease and since the hospitals feel they should die in their homeland (Sawada, Edaki et al., 2001). In addition, some health care personnel suggest repatriation because foreign patients might attain free medical treatment in their country of origin (Adachi & Sagara, 2004) and/or because they “want them to die in their homeland” (Sawada, Edaki et al., 2001, p. 134). Under these circumstances, foreigners tend to go to the hospital only when their physical condition is extremely serious. Sawada, Edaki et al. (2001) conducted an investigation on the medical records of HIV foreign carriers, which included 14 medical settings in the Kanto region. The records of each patient over the previous three years were examined to investigate the relationship between being medically insured and the CD4 count. They found that the average CD4 count of those covered by medical insurance was over 290, and that most of them seemed to come to the hospital to preserve their immunity. However, the CD4 count of 45% of those without medical insurance was less than 50. It seems that most of them came to the hospital suffering from opportunistic infections. Moreover, Yamamura and Sawada (2002) in a longitudinal survey with HIV illegal aliens found that because of their irregular legal situation their access to medical treatment was restricted. They could barely afford the expenses, and they did not have information on available medical treatments. The condition of most patients suffering from AIDS related illness was critical when they went to a facility for the first time. Most of them were afflicted with tuberculosis and Pneumocystis carinii pneumonia. Eventually, most of the AIDS patients died in Japan or in their homeland immediately after repatriation.

Latin Americans in Japan

Traditionally, Japan has been considered a non-migration friendly country, because of the creed of racial homogeneity that sustains nationalism and the lowest rates of foreign residents among industrialised nations (Sellek, 2001). Current statistics show that only 1.55% of the total population living in Japan are foreigners (Zaidan Hōjin Nyūkankyoku, 2005). As well, the government denied the existence of minority populations before the Human Rights Committee of the United Nations in 1980, despite the existence of historically well-established – yet by no means fully integrated – populations of Ainu, Burakumin, Chinese, Koreans, and Okinawans (Weiner, 1997).

However, to cope with the shortages of unskilled workers, the Japanese government launched a campaign in 1990 to attract a foreign labour force (Oka, 1994). The campaign encompassed three main strategies: one, the amendment of the Immigration Control and Refugee Recognition Act; two, the expansion and diversification of trainee programmes; and three, the granting of work visas to Nikkeijin (Japanese descendant). The measures largely benefited employers running small-scale enterprises, the bedrock of the industrial structure, who felt the severest shortages (Yamanaka, 1996). Currently, the Ministry of Justice acknowledged that of 1,973,747 registered foreigners, in 2004, 286,557 Brazilians and 55,750 Peruvians legally live in the country (Zaidan Hōjin Nyūkankyoku, 2005). Koreans (607,419) and Chinese (487,570) are the largest groups of registered foreigners. Yet, Brazilians have the largest number of foreigners married to a Japanese citizen (82,173), the largest number of long-term residents (144,407), and one of the largest number of permanent residents (52,581). In addition, the majority of registered Peruvians are permanent (20,401) and long-term residents (20,779). Owing to their legal status, Nikkeijin have no restrictions to engage in working related activities. Statistics do not disclose the number of Nikkeijin, yet, Mori (1997) claims that 90.2% and 6.8% of all Brazilians and Peruvians, respectively, are Nikkeijin.

The so-called Nikkeijin phenomenon and the laws that restrict the entry of foreign labour force suggest the revival of the myth of Japanese social purity and homogeneity (Weiner, 1997). In addition, Nikkejin have created a stratified of labour market structure of individual workers (Inagami, Kuwahara. & Kokumin Kinyūkōkō Sōgō kenkyūjo, 1992), whose rights are most likely to be violated. Different from Japanese full-time workers, Nikkeijin, as well as illegal migrant workers, have a subordinate position in the domestic labour market. Employers do not take full responsibility, especially in relation to mandatory health insurance and pension schemes, because more than 60% of Nikkeijin are “contract” workers hired by brokers (Sellek, 1997).

Research area and objectives of the study

This study reports the last part of our research with Latin American people living with HIV/AIDS (PLWHA) in Japan. We interviewed a group of 20 men to investigate their circumstances while living in the country. They were asked to join the project because the results of the investigation would result in improved medical services, and consequently, improvement in their QoL. The research was divided into four parts. The first part deals with issues concerning health care provision and informed consent (Castro-Vázquez & Tarui, 2006a). The second part sheds light on matters related to sero-status, identity and community support (Castro-Vázquez & Tarui, 2006b). The third part includes issues concerning embodiment, sexuality and HIV/AIDS (Castro-Vázquez & Tarui, 2006c). Finally, the last part is concerned with QoL of PLWHA and the methodological implications for the research on HIV/AIDS and migrant populations.

The central argument of this study is that a sound understanding of the QoL of migrant PLWHA involves a comprehensive examination of matters related to citizenry, legality, health care provision, and consumerism. In order to promote betterment and to enhance the QoL of migrant PLWHA future investigation must involve perceptions of health, care and research, as well as concepts of normality and healthy-life.

We wished to investigate how the informants understand the meaning of QoL and how their idea of QoL influences their perceptions and outcomes of medical research.

Our specific objectives were:

• To examine how the understanding of QoL relates to the idea of “normal life”, sero-conversion, pain/illness, and consumerism

• To explore how the informants” understanding of QoL relates to their desire to participate in medical research projects

• To recognize how the understanding of medical research projects relates to health education/illness prevention backgrounds, citizenship, legal status and labour issues

Method

Methodologically, we positioned ourselves within a framework of feminist social theory (Ramazanoglu & Holland, 2002). This framework provided a sound understanding of the consequences of HIV/AIDS in the lives of Latin Americans living in Japan and the meanings of their experience in relation to issues concerning justice, power, relationships, differences, and morality. The literature on medical treatment for PLWH shows that Japanese society is hierarchically constructed and that power relations permeate the ways nationals and foreigners interact. We questioned how and why such relations have been constructed throughout history, within and between cultures and in entanglements with other forms of power. In particular, we considered the relevance of ethnicity, citizenship and sexuality in our analysis. We thought that sexual beliefs and practices are cultural constructs underlying the conventions of “normal” heterosexuality. These conventions are likely to be used as strong arguments to sustain the discrimination against and the invisibility of people living with HIV and AIDS. Yet, consistent with Young (1990), justice should not be understood only as a matter of the distribution of goods. Notions of domination and oppression should underlie a sound understating of justice, which implies taking into consideration issues concerning decision-making, division of labour and culture (Young, 1990).

Participants and procedure

This ethnographic study includes 15 Brazilian Nikkeijin, eight HIV carriers and seven AIDS sufferers. Three were Peruvian Nikkeijin, two HIV infected people and one AIDS sufferer. One is a non-Nikkeijin HIV infected Brazilian, and the last one is a non-Nikkeijin Peruvian AIDS sufferer. All of them were male and single, and they were from 28 to 37 years of age. Seven of them identify themselves as homosexual and three of them are illegal residents in the country. Only five of them were fluent in Japanese. Concerning their social class, 10 of them have a university degree but only five of them were white-collar workers. The white-collar workers have settled down in the Tokyo area, and they are renting accommodation. The blue-collars either live in the facilities of the company for which they are working for or with acquaintances. The medical expenses of seven of the men were covered by the National Health Insurance, two were entitled to use the Physical disability certificate or menekikinōshōgai,2 and three of them were using the medical insurance of a friend to receive medical treatment.

The men were given a choice of both time and venue, and all of them elected to talk at restaurants in localities where they could not be identified. Participation in the study was entirely voluntary and no financial or other special incentive was offered. In order to use the restaurants, we needed to consume something and so participants’ meals or beverages were covered by the interviewer. Five of the participants were interviewed immediately after they attended a medical facility in Tokyo, and the rest in Hamamatsu in a place where the informant felt at ease. Since most of the interviewees had time constraints, data collection was carried out between April and September 2002, and during August 2003 and 2004. Most of the data was collected in August because during the so-called Obon holidays most of the blue-collar workers could take a holiday.

In order to find the sample, we asked a physician in Gunma, a Prefecture well known because of its settlements of Latin Americans. We reassured the doctor that the informants did not need to disclose information that would compromise their legal or medical situation and that data would be treated with complete confidentiality. Arguing that the privacy of the patients was at stake, the hospital's committee rejected the request. Then, we approached one NGO (Non Government Organization) that offers HIV and AIDS services for Latino Americans in Tokyo. The representatives stated that they needed to protect the privacy of their clients, and they did not want to tell even the number of people they were helping. We proposed that, at least, clients should be asked whether they wanted to participate, but we were rejected. Fortunately, a physician working in one of the largest hospitals in Tokyo introduced us to four of his outpatients. He handed out our letters of introduction to his Latin American patients, and those interested were asked to write down a contact telephone number and the time they would like to be telephoned. The letter was written in Spanish, Portuguese and Japanese and explained that the main objective was to their opinion to improve the quality of the medical treatment they received. The results of the investigation might improve their QoL. The document emphasised that their privacy would be protected, that we did not have any link with the Immigration Office and that data would be used for research purposes only. Afterwards, thanks to a university student who conducted a research on Brazilian Nikkeijin, we contacted the representatives of an NGO based in Hamamatsu, in Shizuoka Prefecture, and acquired in five more informants. These five informants and one of those presented by the physician, introduced 21 of his friends but only 11 accepted our invitation. Nine of those who declined argued that they did not want to be considered a “guinea pig.”

Interviews

Our main conclusions were made after our endeavours to account for contradictions, for the unexpected, and for absences and silences in the interviews. In order to cope with fallibility and subjectivity during the analysis of data, we emphasized both our own and the informant's reflections on HIV/AIDS, ethnicity, medical care and support, social class, sexuality and power, especially when confronted with material that cannot simply be “read” either from the transcripts themselves or from our starting assumptions.

The contents of the interviews where divided into 3 areas: disease-medication, social-support, and illness-sexuality. They were not necessarily presented in strict order but in a way that the interviewee felt comfortable and the conversation ran smoothly. Moreover, we tried to explore each of these areas in two interviews. In the second interview, we aimed to expand upon insufficient and/or unclear responses from the previous one. As a result, we had six encounters with each informant. Each encounter lasted 60 min, and they were recorded with the express consent of the interviewee. They were advised to stop the recording in case there were parts they did not want to be included, and we did not use the names of our informants in order to protect their privacy.

Analysis of data

In order to analyse the data, we employed systemic networks -a device developed in linguistics that permits to the translation of interview transcripts into language of theory (Halliday, 1975; Kress, 1976; Bliss, Monk & Ogborn, 1983). Through an induction-deduction iterative process, we produced conceptual categories that were meant to mirror the interviews’ contents, and vice versa. Interviews were conducted in Spanish and Portuguese, transcribed in full and stored and coded with the assistance of the software package Ethnograph V5 (Coffey & Atkinson, 1996). Rather than regarding the interview transcripts as directly representing reality, we used them as accounts of life or pieces of the life history (Plummer, 1995) of our informants, and in doing so, we explicitly state the meanings taken from each account. However in considering our informant's accounts, we did not measure, count or add them.

Ethical considerations

In order to design the present study, we have followed the guidelines stated in the Helsinki declaration by the Word Medical Association in 2000 (World Medical Association Declaration of Helsinki, 2000). The privacy and dignity of the informants were protected always. We started the study only after we conducted a thorough investigation of the knowledge and scientific literature concerning HIV/AIDS and migrant populations. In addition, we are scientifically qualified researchers because one has gained a PhD in Health Education and the other is a professor of ethics.

Predictable risks and burdens were carefully assessed before the informants participated. During the investigation, there were no situations in which the participants were harmed or were put at risk. Although the research project was rejected several times, we continued looking for informants because HIV/AIDS is a major problem of public health and because, due to growing migration and globalization a considerable number of PLWHA will be immigrants. In addition, research on foreign PLWHA will bring about sound insights to improve the quality of health care for them.

Participants were volunteers, and they were informed about the aims, methods, sources of funding, any possible conflicts of interest, institutional affiliations of the researchers, the anticipated benefits and potential risks of the study and the discomfort it might entail. In addition, information was always used confidentially, and we insisted that participants had the right to abstain from participation and to withdraw whenever they wanted without reprisal. The relationship between researchers and informants was not co-dependent. Moreover, their verbal consent to participate was tape-recorded. Finally, informants were informed that the results of the research would be published, which is why names or any information that might infringe the right to privacy were not included. The interviews were fully transcribed and were accurately presented for publication with the consent of the person involved.

Results

What is QoL?

We asked the Latin American PLWHA in Japan to join the project because the results of the investigation would bring about better medical treatments and consequently improvements in their QoL. That was not a good enough reason to attain their collaboration. Informants joined the study as a favour to the physician or a friend who introduced them. They did not have a clear idea about what QoL is, and contradictorily, certain aspects of their QoL seemed to have improved only after sero-conversion. They yearned for the “normal life” that they had prior to infection. For most the men, a normal life meant an unhealthy life, in the sense that they only started taking care of their physical condition after acquiring the virus. This was the case with the white-collar workers who enjoyed the security of employment. They were fully covered by the national health care system and were sure that they wanted to remain in Japan. When asked about the ways his life has changed, an informant reflected:

You know it is very interesting that my life has radically changed since the virus was detected in my body … At the very beginning … I was depressed of course, and depression comes and goes … to be honest … but … you know … though … you always think that you want to go back to a normal life … I think I only realised about the importance of health when you are ill … before I didn't care about the stuff I ate … sleeping enough time. … Recently, I try to eat three times a day … do as much exercise as possible … and try to sleep eight hours a day … it is also because I have to take the medicine … For the last two years, I haven't had any serious ailment, and I think it is because of the life I am leading … dunno I receiving medical treatment … and it is quiet good … if you say your research will improve the quality of my life … I don't know how …

Interviewer: Why did you accept to be interviewed?

Interviewee: Because the doctor asked me, and he is a good man … also I think my situation is different from those working in factories and stuff … (Peruvian, 28 years old, legal alien, blue-collar worker, PLWA.)

The social dynamics that Latin Americans encounter in Japan closely resemble those that occur in their country of origin. While a small group of extremely rich people exist, the majority of the population live in extreme poverty. Although white-collar workers reported that they have lost their position in society, they had improved certainly in terms of social and financial security. This is not the case of blue collar-workers, who are the majority of migrants from Latin America. All of the blue-collar we interviewed endured the same and sometimes worse circumstances than in their country of origin. They could not claim the rights of Japanese citizens in relation to employment and social security. Besides, most of them found their jobs through brokers, so their labour situation was unstable, and ended up living in facilities that were not necessarily better than those they had in their country of origin. Although they did not have clear intentions of returning to their country of origin, and have come back to Japan frequently, they claimed they would leave Japan anyway. They were not fluent in Japanese and the idea of learning the language did not appeal to them. They were unable to attend medical facilities alone and their poor access to medical treatment has made them develop the capacity to endure a wider range of pain. It was disquieting to interview an informant who had been suffering from decaying teeth for several weeks. A bad smell was clearly coming from his mouth. We offered to go with him and translate for him at the dentist. However, he did not want to go to the doctor because he did not have a job and he was not paying the medical insurance. When asked about his unwillingness to look for a doctor, he explained:

It is not that painful … sometimes it is though … I will get some pain killers later … this and this (opening his mouth to show his teeth) are really bad, this is was very bad, indeed … but as you can see … the teeth are broken so bad that I have just few pieces remaining there … I think it is a matter of time …

Interviewer: Don't you think it is easier and faster if you go to the doctor?

Interviewee: No, because I don't have a job and don't want to use my savings … Right now I am not paying the medical insurance also…I am even living with my friends for the time being … that is also a problem tonight as I don't have a place to stay. I might end up sleeping in a park … I don't have a place of my own because companies usually give you a place to stay …

Interviewer: How are those places?

Interviewee: Sometimes they are good but others they are really dirty … well … what do you expect? … they are providing it … It is always better than looking for a place by your own … if you don't have a Japanese shouldering you … you can't rent a place …

Interviewer: What about the HIV medical treatment?

Interviewee: For the time being it is okay … I think I have treatment for another two weeks … I am planning on going to Gunma to find a job … (Brazilian Nikkeijin, 35 years old, legal alien, blue-collar worker, PLWA.)

The global consumer culture and the experience of living in a country that largely depends on consumption to sustain economic growth influenced the sense of QoL for these men. Although most of them faced financial difficulties, their perception of “needs” seems to be replaced by a sense of “desire” (Aldridge, 2003). Different from Tsuda (2004), most of these men still experienced psychological difficulties and social insecurities. In addition, their emotional and social ties to their country of origin were weaker, but it did not imply that those to Japan were stronger. However, their original idea of leading an austere life to save up money had changed and they were trapped in the world of goods and consumption. Their understanding of QoL was clearly a product of the “marketization of citizenship”, and although they can enjoy full citizenship in Japan, they content themselves with what they can accumulate and spend. Alas, they not only had slight chance of returning home, and they were largely dissatisfied because their salaries could not satisfy their desires. Their sense of QoL was related their health condition as well as their capacity to consume. Yet, this was not a phenomenon only occurring among white-collar workers. Blue-collar workers were equally concerned about their purchase capacity. When asked about the reasons to become a repeat migrant, one of blue-collar informants stated:

 … life is easier in Japan not only because it is safer than in my country … things you can buy here are cooler … at the end of the day … you get used to buy clothes … at first I didn't like the idea of working in a factory … but … you know I am a dentist and even I had my office back there … my salary was never as good as it is here … and … it will never be good enough to buy the stuff I have here … I certainly improved my life in Japan … I don't have savings though … stuff is really expensive here and I feel a bit sad that I can't buy all I wish, but still … I can get more than in my country … down there it is always a matter of surviving … no money for extra things … here I have few extras but still I have …

Interviewer: What about your family and friends?

Interviewee: Well you know after such a long time of living abroad, you end up being a foreigner everywhere … I do love my parents and siblings … but my friends all are gone … and with my family I don't have real links anymore … what can you say in an e-mail or on the phone … I don't have friends here either but for the time being I choose Japan …

Interviewer: What about the medical treatment?

Interviewee: That also … you know … since I don't have problems with the visa, I can have medical treatment here … I am not concerned about that … Once I had the option … because I don't speak Japanese and I don't intend to learn it … to return to Brazil … actually I did return but reality is harsh down there … not only security … the standard of life is really low … of course if you are filthy rich life is good even there … Yes, you can have medical treatment for free down there … but what else? … I do not know what quality of life is … for sure … but I can tell that my life is better here … no doubt … (Brazilian Nikkeijin, 34 years old, legal alien, blue-collar worker, PLWA.)

Research, what for?

Poor health education and illness prevention background of these men inversely relates to their desire to participate in research projects. They did not see the connection between a research project and the benefits to them (Zea, Reisen & Diaz, 2003). Indeed, they did not see preventive medicine and medical checkups as an investment but as an expense. All of the men discovered that they were infected either because of his partner was infected, or because they got ill. Neither in their country of origin nor in Japan have they visited a doctor for a medical examination. All of the men come from countries with “weaken health structures” (Altman, 1999) that “posed enormous barriers to the reproductive and sexual rights agenda” (Gita Sen cited in Altman 1999, p. 565). Considering the attitudes and perceptions towards medical care and prevention of migrant Latin Americans in terms of locus of control (Burns et al., 2005) and acculturation and cultural issues (Díaz, 1998; Zea et al., 2003) seems to be naive. Serious structural barriers determined their access to medical facilities, and influenced their way of thinking and behaviour. The informants left their countries of origin because the State was unable to guarantee employment and access to health and education services (Bronfman, Leyva & Negroni, 2004).

Informants participated in the study as a favour to the person who introduced them. Regardless of their academic background, only two of them seemed to understand the relevance of health related research. They were most likely concerned about medical treatment expenses, the means to get a reduction in prices and the amount of time consultation would take. In particular, for blue-collar workers, time means money as their salaries depend on the amount of time they work. They did not feel like investing “money” on something they did not understand. In asking one of informants about why he joined the study, he said:

To be honest with you, I did it because the doctor asked me to do it. I think he is a good person … and you never know … I might need a favour from him … because of him, I am now using the Physical disability certificate … he gave the information about the system …

Interviewer: Then, you don't think you might get anything from this research, do you?

Interviewee: Yes. Actually this is the first time I join a study … and I would like to keep it as short as possible. I need to go back to my job as soon as possible. You know … the longer it takes the lower my salary becomes … (Brazilian Nikkeijin, 30 years old, legal alien, blue-collar worker, PLWH.)

Two participants had participated in research projects in their country of origin and expressed a critical perspective about sociological investigation on HIV/AIDS. They suggested that pharmaceutical and microbiological research was salient but sociological enquires did not produce concrete outcomes. They suggested that AIDS has been regarded as an attractive subject but the results have barely benefited positive people (Murni, 2001). Alas, a huge amount of research has ended up being a large compilation of unread research reports, collecting dust (Altman, 1994). In addition, civil society groups seemed to have lost their self-critical capacity and centred their attention on the possibilities of funding for organisational stability (Altman, 1994). When asked about his reticence to participate in ethnographic studies, one of our informants uttered:

You know … I am not new in this business … I did that in Brazil, so many times questionnaires … interviews … more questionnaires … more interviews … I was even an activist … but the truth is that nothing works … I think that nowadays AIDS and stuff is just a big business …

Interviewer: What do you mean?

Interviewee: Nowadays, scholars and NGO people are just after the money … they want their projects funded, but the results end up being just another file … See … the virus was identified almost 20 years ago and people are still discussing the same boring stuff …

Interviewer: Why do you think it is boring?

Interviewee: Because the number of infected people increases despite … I think people need free access to condoms … and … infected people … medicine … If I had money and power, I would invest on developing a vaccine … But that is not a business … it is better to sell drugs that don't cure AIDS … then AIDS is a business … you listen to one discourse after the other … there is one conference after the next and … but nothing changes … (Brazilian Nikkeijin, 32 years old, legal alien, white-collar worker, PLWH.)

All the men cited fears of over confidentiality since they have faced discrimination and/or ostracism. They chose social invisibility in order to conceal their legal status, sexual preference and sero-status. In particular, the three illegal men were hesitant. They were concerned about disclosing their legal and/or HIV status. Some of the participants managed to convince these men without proper visas by assuring them that their privacy was not at risk. Maintaining the contact with these three informants was extremely difficult. However, even though we changed location four times, we completed the series of interviews with them. Stigma has had a profound impact on their lives because even their relatives, friends and neighbours have suffered intrusive visits from the police and immigration authorities, and sometimes harassment when the police realised that someone was illegal. They have endured discrimination due to the combination of sero-positivity and illegality. One of the illegal men expressed his concerns:

I have to move very often because I don't have a visa. This time I have lived longer in the same place, but I would rather continue moving because the police might find me. It is always a risk to go out and be asked to show my ID. Once they discover that you are illegal, it is very harsh even for the neighbours … authorities start coming, and they are very inquisitive … sometimes they even harass my friends. Police tend to think that we are all criminals … Then I've found that Latin Americans don't want to be close to illegal people … I had some friends in Gunma and I used to hang out with them once a month. But when they knew I didn't have a visa … they kept avoiding me, I have telephoned them … as usual … but they don't pick up the phone anymore … they don't even try to contact me … I don't see them any more. (Peruvian, 31 years old, illegal alien, blue-collar worker, PLWH.)

Contrary to Zea et al. (2003), informants accepted to be interviewed because none of the researchers was part of their “community” or even close to their circles of acquaintances or friends. In addition, researchers were not linked to any institution that might have affected their social, medical and/or legal stability. They felt at ease speaking in their mother tongue about their trouble and disquieting experiences and found in the interview a space to talk freely and unconcerned about unwanted disclosures. Sometimes tape-recording had to be stopped because an informant got too emotional and was unable to speak. On those occasions, we confirmed their desire to discuss those painful subjects. A cathartic effect stemmed from the interviews, indeed. In line with Doyal and Andersen (2005) and Bronfman et al. (2004), these men were migrants who have left their economic, cultural and social roots back in their countries. Despite their attempts to find a partner, or friends, they were struggling with anxiety and sorrow all alone, and the interviews provided them with an opportunity to release part of their psychological distress. In most of cases, their reluctance disappeared and a spirit of full cooperation began when they were aware of the cathartic effect of our encounters, as one of them expressed:

I don't have anything to say against medical treatment … the doctor is a very kind person … when there is something I don't understand … he always looks for a way to make things easier for me … he always takes extra time to explain things I don't understand … but I don't feel at ease to talk about my personal life …

Interviewer: What do you mean?

Interviewee: I am sure that my CD4 goes up and down if I am worried … When I am sad … a bit depressed there is nobody to talk with …

Interviewer: Is there any ward in the hospital where you can see a psychologist?

Interviewee: Maybe there is but I only speak Portuguese … and the Brazilians living in the country are really aggressive … and … I don't think I can talk about serious stuff with them … of course I wouldn't even imagine myself talking about AIDS with them … they are biased … they are against gay people and people with AIDS … they like gossip very much … what's more I don't know what I can I talk to them about … Actually talking with you is good. I realized that when we talked I feel free … Like getting rid of a heavy load … it is too bad that we can't meet anymore though … (Brazilian, 29 years old, legal alien, white-collar worker, PLWA.)

Reluctance to participate was also related to the attitude of medical personnel about repatriation. Men have been offered repatriation as an option to their predicament. They would have free access to medical treatment, and their social network and language issues would disappear. Some of these men did not think they should commit and express their opinion in interviews. There was no use trying to improve a medical system that would not be for them. Indeed, “suggesting repatriation” is an economic means to deal with foreign PLWHA “successful,” because the number of infected people decreases and Japanese facilities do not have to bear the burden of foreign patients. Yet, such a strategy has brought about serious ethical and practical issues. Three of the informants returned to their country of origin but ended up coming back to Japan because they could not find a job there. Back in Japan, their physical condition was seriously deteriorated and the possibility of finding appropriate HAART combination was slimmer. The virus in their body developed resistance to medication. One of informants explained:

I don't see why you want doctors listen what I might think about treatment here … to me they are just concerned about those who are able to pay … a year ago it was suggested that I go back to my country where I could get free medical treatment … and … yes … I did get medical for free … but what else? … There was no job for me there … and I didn't want to be a burden to my parents … I got back to Japan three months ago … and now I can't get medical treatment …

Interviewer: How come?

Interviewee: I really don't understand but it seems that the virus got stronger, and medicine might not work. Doctors are thinking of what suits me better, but still I have got herpes twice so far … and a bad diarrhoea for a week … (Brazilian Nikkeijin, 35 years old, legal alien, blue-collar worker, PLWA.)

Discussion

The adoption of feminist methodology showed how the concept “power relations” is a useful tool for analysing and understanding of social systems (Barbour & Huby, 1998). Basing our research in the experience of “those who are ignored in dominant beliefs and activities” (Ramazanoglu & Holland, 2002, p. 51) showed that social researchers seemed to be powerless vis-à-vis the current political and economic trends that “control of the research agenda” (Altman, 1994, p. 122). Although the informants and ideas in relation to research, medical treatment and QoL were subjective knowledge, they provided “an essential understanding to general knowledge” (Holland, Ramazanoglu, Sharpe & Thomson, 1999, p. 459). In retrospect, their experiences showed that “medical treatment is not only a personal responsibility” (Blaxter, 1994, p. 250) and that biological markers were not enough to guarantee and evaluate adherence to treatment (Wheeler, 2005) and QoL. Researchers engaged in the work with PLWHA need to take in to consideration that migrants and mobile populations brought with them a personal history that highly influences their perspectives towards health, care, prevention and QoL. Their experiences and material realities could not be fully described using simple ideas of “family interdependence and locus of control” (Burns et al., 2005; Díaz, 1998). In addition, researchers need to consider the outcomes and implications of their methods for their informants. They need to remain that behind rates of infection, migration trends, and number of deportations, suggested or not, there is a human being struggling and trying to find direction and sense to their new/old lives with a virus. Our sincere hope is that this is not another report to be filed but the beginning of a political reform somewhere.

However, these men's experiences reflected the global demographic trends and the fallacy of notions of global citizenship. Migrant and mobile populations are an important source of income for sending and receiving countries, and they are in limbo. They are a “commodity” and their rights to access to basic services are not guaranteed. They are subject to fluctuations of labour and end up renouncing citizenship. Latin Americans in Japan cope with a health care system that is highly oriented by national interests which barely includes them, and the policy of “suggesting repatriation” clearly illustrates the case. “States, institutions and national spaces still play a crucial role in “global” and “transnational” social movement” (Olesen, 2005, p. 435). The accounts of these men also showed the limits of “operationalized tight conceptual and social boundaries around categories of people” (Barbour & Huby, 1998, p. 9). Migrant and PLWHA are two concepts that help move the “bureaucratic machinery” (Barbour & Huby, 1998, p. 9) of the AIDS industry. However, these concepts include a broad divergent and sometimes opposite lifestyles, affiliations and notions of identity, that do not help explain the circumstances of individuals making sense of global trends, consumerism and QoL and living with HIV.

Conclusion

The experience of working with Latin Americans in Japan was productive and disheartening. Productive in the sense that our qualitative methods helped unveil the reality these men face. Despite HIV was identified more than 20 years ago PLWHA are still “someone without a name or a history” (Daniel, 1993, p. 142). An unexpected cathartic effect from the investigation seemed to have a positive effect on the mental health of these men. Research, however, could not offer concrete benefits to alleviate their pain. Sadly, these men struggled in a state of darkness and concealment, and stigma for them was real but not perceived (Anderson & Doyal, 2004). Their reluctance to participate in research projects is a concrete research challenge that mirrors an “AIDS industry” that has not included those more in need (Patton, 1990).

Notes

1. otes¹ HIV is a virus that attacks the immune system—the body's defence system against infection and illness. If you have HIV, you can take drugs to reduce the level of HIV in your body. By reducing the amount of HIV in the body, damage to the immune system can be slowed or prevented. These drugs are not a cure but help people stay well and extend their life. Anti-HIV drugs are known as antiretroviral drugs. For a detailed description, see Aidsmap.

2. The Physical disability certificate or menekikinōshōgai is a service that the Japanese government implemented to support citizens suffering from chronic illness including AIDS. Their medical treatment is subsidised and they can obtain tax reduction and financial aid based on their physical condition. Legal migrants facing financial difficulties can access to the service as well. For a detailed description see Kōseirōdōshō, Shōgaiintei ni kansuru Kentōkai (1997)