The SARS-Associated Stigma of SARS Victims in the Post-SARS Era of Hong Kong
Identifieur interne : 000851 ( Istex/Corpus ); précédent : 000850; suivant : 000852The SARS-Associated Stigma of SARS Victims in the Post-SARS Era of Hong Kong
Auteurs : Judy Yuen-Man SiuSource :
- Qualitative Health Research [ 1049-7323 ] ; 2008-06.
English descriptors
- Teeft :
- Amoy gardens, Attribution model, Avian, Avian influenza, Biomedical, Biomedical doctors, Biomedical encounters, Biomedical hegemony, Bone pain, Capitalist assumptions, Capitalist mentality, Clinic, Communicable, Communicable disease, Communicable diseases, Community health, Contemporary hong kong society, Cultural environment, Cultural values, Emotional disorder, Epidemic control measures, Ethnographic data, Explanatory models, Family members, Further research, Future epidemic outbreaks, Government institutions, Health care providers, Health care workers, Hong, Hong kong, Hong kong government, Hong kong society, Human society, International journal, Interview participants, Kleinman, Kong, Legislative council, Liamputtong ezzy, Major themes, Many aspects, Medical doctors, Observation participants, Observation study, Other colleagues, Outbreak, Outpatient, Outpatient clinics, Participant, Participant observation, Physical complaints, Physical symptoms, Population health, Positive mind, Preventive medicine, Previous studies, Previous study, Psychological difficulties, Psychological problems, Public health, Public health development, Public health policy, Public health policy makers, Public hospitals, Public outpatient clinics, Public perception, Pulmonary function, Pulmonary functions, Purposive sampling, Qualitative health research, Research methods, Respiratory syndrome, Sars, Sars epidemic, Sars outbreak, Sars sequelae, Sars victim, Sars victims, Semistructured interviews, Sequela, Severe bone pain, Sickness history, Social norms, Social science, Social service providers, Social stigma, Social support service, Special entrances, Special treatment, Stark contrast, Stigma, Stigmatization, Stigmatized, Subjective feelings, Such stigma, Traumatic experiences, Uncomfortable feelings, Unpleasant experiences, Wong, World health organization.
Abstract
This article explores the disease-associated stigma attached to the SARS victims in the post-SARS era of Hong Kong. I argue that the SARS-associated stigma did not decrease over time. Based on the ethnographic data obtained from 16 months of participant observation in a SARS victims' self-help group and semistructured interviews, I argue that the SARS-associated stigma was maintained, revived, and reconstructed by the biomedical encounters, government institutions, and public perception. I also provide new insight on how the SARS-associated stigma could create problems for public health development in Hong Kong. As communicable diseases will be a continuing threat for the human society, understanding how the disease-associated stigma affects the outcomes of epidemic control measures will be crucial in developing a more responsive public health policy as well as medical follow-up and social support service to the diseased social groups of future epidemic outbreaks.
Url:
DOI: 10.1177/1049732308318372
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ISTEX:CF969C07D23CD8F2F08E9E65EB7577C1A376F9CFLe document en format XML
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I argue that the SARS-associated stigma did not decrease over time. Based on the ethnographic data obtained from 16 months of participant observation in a SARS victims' self-help group and semistructured interviews, I argue that the SARS-associated stigma was maintained, revived, and reconstructed by the biomedical encounters, government institutions, and public perception. I also provide new insight on how the SARS-associated stigma could create problems for public health development in Hong Kong. As communicable diseases will be a continuing threat for the human society, understanding how the disease-associated stigma affects the outcomes of epidemic control measures will be crucial in developing a more responsive public health policy as well as medical follow-up and social support service to the diseased social groups of future epidemic outbreaks.</p></abstract><textClass><keywords scheme="keyword"><list><head>keywords</head><item><term>anthropology</term></item><item><term>anthropology</term></item><item><term>medical</term></item><item><term>community and public health</term></item><item><term>ethnography</term></item><item><term>Hong Kong</term></item><item><term>interviews</term></item><item><term>semistructured</term></item><item><term>participant observation</term></item><item><term>SARS</term></item></list></keywords></textClass></profileDesc><revisionDesc><change when="2008-06">Published</change></revisionDesc></teiHeader></istex:fulltextTEI><json:item><extension>txt</extension><original>false</original><mimetype>text/plain</mimetype><uri>https://api.istex.fr/ark:/67375/M70-GLMK32T2-X/fulltext.txt</uri></json:item></fulltext><metadata><istex:metadataXml wicri:clean="corpus sage not found" wicri:toSee="no header"><istex:xmlDeclaration>version="1.0" encoding="UTF-8"</istex:xmlDeclaration><istex:docType PUBLIC="-//NLM//DTD Journal Publishing DTD v2.3 20070202//EN" URI="journalpublishing.dtd" name="istex:docType"></istex:docType><istex:document><article article-type="research-article" dtd-version="2.3" xml:lang="EN"><front><journal-meta><journal-id journal-id-type="hwp">spqhr</journal-id><journal-id journal-id-type="publisher-id">QHR</journal-id><journal-title>Qualitative Health Research</journal-title><journal-subtitle>International Health</journal-subtitle><issn pub-type="ppub">1049-7323</issn><publisher>
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<kwd>participant observation</kwd>
<kwd>SARS</kwd></kwd-group><custom-meta-wrap><custom-meta xlink:type="simple"><meta-name>sagemeta-type</meta-name><meta-value>Journal Article</meta-value></custom-meta><custom-meta xlink:type="simple"><meta-name>search-text</meta-name><meta-value>729 The SARS-Associated Stigma of SARS Victims in the Post-SARS Era of Hong Kong SAGE Publications, Inc.200810.1177/1049732308318372 Judy Yuen-manSiu University of Queensland, Herston, Queensland, Australia This article explores the disease-associated stigma attached to the SARS victims in the post-SARS era of Hong Kong. I argue that the SARS-associated stigma did not decrease over time. Based on the ethnographic data obtained from 16 months of participant observation in a SARS victims' self-help group and semistructured interviews, I argue that the SARS-associated stigma was maintained, revived, and reconstructed by the biomedical encounters, government institutions, and public perception. I also provide new insight on how the SARS-associated stigma could create problems for public health development in Hong Kong. As communicable diseases will be a continuing threat for the human society, understanding how the disease-associated stigma affects the outcomes of epidemic control measures will be crucial in developing a more responsive public health policy as well as medical follow-up and social support service to the diseased social groups of future epidemic outbreaks. anthropology anthropology medical community and public health ethnography Hong Kong interviews semistructured participant observation SARS The outbreak of severe acute respiratory syndrome (SARS) in 2003 was a challenging event in the public health history of Hong Kong; 1,755 citizens were infected and 299 of them died (World Health Organization, 2004). Although SARS had already been successfully combated in 2003, SARS-associated stigma could still be observed in contemporary Hong Kong society. As there have been few research studies conducted on the SARS-associated stigma of this group in the post-SARS period, this study was aimed at exploring such stigma experienced by the SARS victims in the post-SARS era of Hong Kong. Significance SARS is a new communicable disease that swept through many parts of the world in 2003. Most previous studies on SARS were mainly focused on the medical literature which concerned its clinical management or its psychological impact on health care workers and the general public during the SARS outbreak (Chung, Wong, Suen, & Chung, 2005; Lau, Yang, Tsui, & Kim, 2003, 2005; Leung et al., 2003; Singer et al., 2003; So, Chan, Lee, & Tiwari, 2004; Tang & Wong, 2004; Tolomiczenko et al., 2005; Tse, Pun, & Benzie, 2003; Wong & Tang, 2005). However, little is known about the cultural issue of stigmatization and discrimination related to SARS victims and even less is known about how SARS-associated stigma could persist in the post- SARS era of Hong Kong. Although a previous study examined the SARS-related stigma in a residential area of Hong Kong—which was a bygone epicenter of the SARS outbreak (Lee, Chan, Chau, Kwok, & Kleinman, 2005), the authors did not study how the SARS victims—which is a larger community—were experiencing the SARS-associated stigma in post- SARS Hong Kong. In addition, the use of the attribution model in studying the disease-associated stigma (Mak et al., 2006) failed to explain how the social and cultural environment can have an influence in creating the stigma. In view of the gap in the present literature, I provide new insight on how the SARS-associated stigma that persisted in post-SARS Hong Kong could create problems for the public health. I also argue that only by using the anthropological study approach can we unearth how the social and cultural values reconstruct the SARS-associated stigma in post-SARS Hong Kong society. This study, therefore, is an attempt to fill the gaps in the literature. Although the SARS epidemic had already been over for four years during the time when I was writ- ing this article, the SARS victims were still experi- encing stigmatization. As communicable diseases are obviously a continuing threat to human society, and as new and life-threatening communicable diseases continue to emerge in different parts of the world, 730 understanding the disease-associated stigma in the post-epidemic outbreak from an anthropological aspect that emphasizes in-depth participant observa- tion on a society can undoubtedly assist public health policy makers, health care providers, and social ser- vice providers in developing a more responsive public health policy as well as medical follow-up and social support service to the diseased social groups in future epidemic outbreaks. Methods Design and Setting A qualitative approach using anthropological and ethnographic study methods including participant observation and semistructured interviews was adopted to study the SARS-associated stigma in the post-SARS time of Hong Kong. An extended period of participant observation with the SARS victims was conducted in a SARS victims' self-help group with more than 200 members from September 2005 to December 2006. All 200 members contracted SARS during the outbreak of 2003. From among these 200 members, 170 participants consented to take part in the observation study by the researcher and another 30 participants were recruited through purposive sampling for both observation study and in-depth semistructured interviews. The Participants Participants who were Hong Kong residents and who had contracted SARS were recruited by using pur- posive sampling (Bernard, 2002) during the process of participant observation. Two kinds of participants— observation participants and interview participants— were categorized. Observation participants were those who consented to be observed but declined the inter- views, whereas the interview participants consented to participate in both the interviews and observation research. The 30 interview participants had undergone or were still undergoing constant follow-up treatments on their SARS-related sequelae in the public outpatient clinics in various acute public hospitals. Of the 170 observation participants, 143 were also undergoing follow-up treatments; and 27 had defaulted on the follow-up treatments by themselves. The sequelae of SARS were still significant for the two groups of partic- ipants, as they were still suffering from both the physical damages and psychiatric disorders that were induced by SARS, including scarring in their lungs (that could result in permanent damage of pulmonary function), cardiac dysrhythmia, downgrading of cardio-pulmonary functions, hypertension, and osteonecrosis, in addition to depression. Some other common physical complaints according to the participants included shortness of breath, severe bone pain, fatigue, and decreasing energy. SARS Sequelae in the Post-SARS Era Because the SARS survivors suffered from long- term physical and psychological difficulties, the Panels on Health Services, Manpower, and Welfare Services of the Legislative Council set up a joint meeting on 9 March 2006 to discuss compensation and follow-up for SARS victims.1 According to information supplied by the Health, Welfare, and Food Bureau, more than 1,400 of 1,755 victims were still undergoing follow-up treat- ment in the 12 post-SARS public outpatient clinics that were set up in various acute public hospitals. Those victims requiring follow-up treatment had to visit these clinics every six months to “assess the respiratory dys- function, orthopedic dysfunction as well as the overall physical and psychological conditions of the patients. Where necessary, the patients might be referred to the relevant specialists for further follow-up assessment and/or treatment.”2 According to the participants, only those who were suffering from the previously mentioned sequelae were required to undergo follow-up treatment in the public outpatient clinics, and according to infor- mation provided by the self-help group, 48 of the 200 participants were undergoing psychiatric follow-up care in public clinics. Data Collection Anthropological research methods including par- ticipant observation and in-depth semistructured interviews were adopted in this research. As stated, an anthropological research approach that enables the disclosure of the social and cultural landscapes is the best way for delineating the SARS-associated stigma in the post-SARS era of Hong Kong. Participant observation involves immersion in a cul- ture and community through working and living with the participants for a period of time. This enables the researcher to observe, experience, and understand how beliefs are embedded in local cultures from an “insider's” point of view (Bernard, 2002). Participant observation was conducted within the self-help group of the SARS victims. As these participants had encoun- tered traumatic experiences of being stigmatized and being discriminated against, having an extended period 731 of time in which to observe these emotionally vulnera- ble groups not only enabled me to cultivate relationships and mutual trust with them, but also facilitated the recruitment of potential interview participants through purposive sampling. Moreover, maximizing insider rela- tionships not only reduced reactivity and sensitivity of the participants (and so avoided behavioral changes dur- ing field work; Bernard, 2002), but it also facilitated the collection of contextual data that could not be obtained from interviews. With the advantage of participant observation in this self-help group, 30 interview participants were selected. The rationale of selecting these 30 participants was because of their ongoing experience of unpleasant and traumatic stigmatization. Their unpleasant experiences were often revealed during my informal conversations with them in the participant observation procedure. As the 30 interview participants had undergone or were still undergoing follow-up treatment for their SARS-related sequelae they had relatively more experiences of SARS- associated stigmatization and discrimination, whether in the sphere of medical treatment or at work. The experiences of the 170 observation participants were also unpleasant because of their being stigma- tized, again whether in the medical or the work are- nas. During my 16-month observation of this patient group, several “sharing” nights were organized. The observation participants' experiences of being stig- matized and discriminated against in their medical follow-up and in the workplace were revealed, and none of these experiences were positive. To explore the viewpoints of medical workers on SARS victims, two medical doctors and two nurses who were working in the post-SARS public outpatient clinics were recruited for semi-structured interviews. In-depth, semistructured interviews following an interview question guide ensure a high degree of flexi- bility that enables interview participants to determine the direction of the interviews by fully expressing their views, feelings, and experiences. This allowed me to have an in-depth understanding (Bernard, 2002) of the feelings and experiences that were being excluded from the public sphere (Liamputtong & Ezzy, 2005). In- depth interviews lasted between 1.5 and 4 hours each, and the questions were aimed at eliciting accounts of stigma experiences since the SARS outbreak. Data Analysis Observation data and experiences during partici- pant observation in the field sites were recorded in an ethnographic diary for analysis. Interviews were audio- recorded with the permission of participants and were transcribed verbatim. Transcriptions were analyzed within two days after the interview to establish con- firmability. Thematic content analysis that involved the identification of categories prior to coding and discourse analysis aimed at studying how the participants' dis- courses and conversations could reflect the social context and reality were used to identify the major themes of the data (Liamputtong & Ezzy, 2005). A code book was kept to record special data and to transform the observation and interview data into categories to identify major themes (Bernard, 2002). The rigor of the study was examined by criteria set out by Lincoln and Cuba (1985). Credibility was established by performing validity checks with the participants to ensure that they agreed with the transcribed data, so to achieve an emic under- standing (Green & Thorogood, 2004). Reliability was established through the coding and re-coding of the tran- scripts to ensure the codings and categories were free of ambiguity, overlaps, and lack of clarity. Ethical Considerations The study was approved by the administrative com- mittee of the self-help group of SARS victims. All par- ticipants, including both observation participants and interview participants, were well informed about the study and were provided with study information sheets and consent forms prior to the study. Written consent was obtained from each of the interview participants. They were assured of their rights and freedom to with- draw from the study without prejudice. All data col- lected were stored in locked files and treated with strict confidentiality. The participants were identified with a code in the data so as to ensure their privacy and confi- dentiality. Ethics approval was obtained from the Research Ethics Committee of the School of Population Health at the University of Queensland. Results Results show that the SARS-associated stigma in the post-SARS era was constructed by the biomedical doctors, government institutions, and the public in the contemporary Hong Kong society. SARS-Associated Stigma in Biomedical Encounters Of the 30 interview participants, 100% expressed having experienced stigmatization during their follow- up treatments in the outpatient clinics at least once. The participants complained that their suffering was not being acknowledged, understood, or respected while 732 receiving care at the clinics. According to the partici- pants, the medical doctors in the public outpatient clin- ics were often doubtful and skeptical about their suffering. Under the skeptical gaze of medical doctors, these participants hence became the subjects of stigma- tization under biomedical hegemony. Although it did not necessarily mean that the medical doctors discriminated against them, unfavorable stigma was often attached to these participants in treatment procedures. Such stigma often made the participants feel even more frustrated and in turn discouraged them from seeking treatment in the outpatient public clinics. One participant stated, I dislike being treated in these clinics because no one seems to understand me. The nurses must think that we [SARS victims] are aliens, because they often use a strange gaze to look at us. If we have any enquiries and requests, they will use a very impolite tone to reply to us. The doctors often do not believe my uncomfortable feelings. When I have reassessment every time in these clinics, the doctors will first ask me about the physical symptoms, and then they will immediately ask me whether I have resumed work in their second question. Every time after I told them that my physical sufferings are so bad that I could hardly work, they would blame me by saying that “it's all in my head,” or something like “if I try, then I should be able to overcome.” Then they would tell you a lot of statistics and numbers about the high success rate of recovery. I did feel like a criminal being interrogated by the doctors who appeared to be police, so I just discontinued the follow-ups. Another participant who had contracted SARS recalled her experience of how her physical sequelae were being stigmatized as psychological problems during the follow-up treatments: After SARS, I could not understand why I suffered from [edema]. I can do nothing except go to have follow-ups. I cannot sleep, and suffer from shortness of breath, headache, and depression. Since June [2003], I have started to suffer from a severe bone pain, especially in my back. Sometimes the pain is so serious that I vomit, and I cannot sleep when the bone pain becomes really serious. But the doctors did not believe me. They just said that “it's all my imagination. You actually do not suffer from any bone pain.” I just felt furious because I was not understood by the doctors, and they just believed that I was lying and actually did not suffer from any physical dysfunction. The doctors do not treat my physical symptoms. HA [Hospital Authority] then referred me to see a [psychologist], and later referred me to see a psychiatrist. I felt very agitated, because I am suffering from physical pain, but the doctors just believed that I have gone crazy. I had asked the doctor when I could be recovered, but the doctor just responded, “Don't you feel that you have recovered already?” Another participant who was working in a public hospital as a health care assistant indicated a similar experience: Doctors always believe that I want to deceive for more holidays. They do not believe that I am suffer- ing from the physical after-effects. I have suffered from bone pain, especially in my neck and back, in addition to frequent dizziness since my discharge in April [2003]. At first, the doctors said that these were due to my prolonged time of staying in bed. Later on, the doctors just kept saying that all the physical symptoms were just my imagination and psycholog- ical problems. My bone pain became more and more serious since July [2003], but the doctors still asked me to try resuming work. They [were] just concerned whether I could resume work, [and do] not really want to understand and believe me that I am really suffering from the pain. The experiences of the participants of being stig- matized in the biomedical encounter as well as the skeptical and doubtful gazes of biomedical doctors can be explained by the process of medicalization, which could serve as a cultural control in this case. Medicalization, which “entails the absorption of ever- widening social arenas and behaviors into jurisdiction of biomedical treatment through a constant extension of pathological terminology to cover new conditions and behaviors” (Baer, Singer, & Susser, 1997, p. 13), is a form of social control constructed and practiced by biomedical doctors. Employing Foucault's term, their elite status and power enable them to produce medical knowledge (Rabinow, 1984) such as knowl- edge of SARS sequelae and determining whether SARS victims were suffering from sequelae. Baer and colleagues (1997) categorize this as “biomedical hegemony,” which is a “process by which capitalist assumptions, concepts and values come to permeate medical diagnosis and treatment . . . [and] is achieved through the diffusion and reinforcement of certain values, attitudes, beliefs, social norms, and legal precepts that, to a greater or lesser degree, come to permeate civil society” (Baer et al., 1997, p. 14). Whether the patient becomes a subject of stigmatization depends strongly on the clinical judgment and diagnoses of medical doctors, and thus the diagnoses are not value-free or 733 objective but rather are shaped by social and cultural values. The diagnoses of medical doctors on the SARS sequelae followed the capitalist assumptions and values of Hong Kong society. As the participants were still unable to resume work and had to depend on govern- ment monetary subsidies such as the SARS Trust Fund to support their living expenses, they failed to fulfill the social norms and expectations of being self-sufficient in Hong Kong society. The diagnoses of the medical doc- tors could have been under the influence of this capital- ist mentality, and could have served as a social control mechanism as well as constructing the post-SARS stigmatization of the participants. For example, a med- ical doctor who was working in a post-SARS public outpatient clinic expressed his negative attitude toward, and put the blame on, SARS victims who were receiv- ing follow-up treatments in the clinics: I don't think the after-effects of SARS can last for such a long time. It's merely their own subjective feelings. I will not deny that some of them are really suffering from the after-effects, but only a minority of patients [suffered these]. In many cases, clinical findings had already shown that the pulmonary func- tions of most of these follow-up patients are within normal limits, and their bone masses are okay as well. But they still insist that they have many physical problems. I don't know why they still keep on bargaining, and what for? Although their pul- monary functions are not as excellent as with other healthy ones, these conditions will not have much impact on their work abilities. I often think that it is because of their mind; if you have a positive mind, then you will not keep on struggling with this. It's just my opinion, but I think that it is because they are unwilling to put a step forward; they are unwilling to recover. If you are unwilling to recover no one can help you. You know, many of my colleagues [med- ical doctors and nurses] also got infected with SARS, but I rarely have heard that they are still suf- fering from the after-effects and requiring any follow-up treatments. Even if they may suffer from shortness of breath after exercising much easier than in the past, it will hardly have any impact on your ability to work. It's a matter of your mind. If you have a positive mind and keep yourself busy by working, you don't have time to consider and pay attention to whether you are still suffering from the after-effects. Otherwise, you will have much time to think about your uncomfortable feelings. To me, many of their sufferings are due to themselves, except those who have been clinically proved that their pulmonary function has been damaged or hav- ing low-density bone mass. Government's Reconstruction of the SARS-Associated Stigma According to my 16-month observation, many par- ticipants still wore facemasks in post-SARS Hong Kong. Although they did not wear facemasks for the whole day, they did so when attending media events that required them to publicize their identities. All were afraid of possible stigmatization and discrimi- nation if they did not wear facemasks, and 23% (n = 46) of them believed they might still carry the virus. Such a subjective belief among the participants was partly because of the government's policies in terms of the rehabilitation provided to them. As the SARS victims were being heavily stigmatized and discriminated against by the public, 12 post-SARS public outpatient clinics that were specially designed for the SARS victims were set up in some acute public hospitals. The establishment and the design of the clin- ics were problematic however, as they reconstructed the stigma relating to SARS in post-SARS Hong Kong. The clinics were designed with special entrances and lifts (elevators) that were exclusively for the use of SARS victims. According to the health care workers in the clinics, the special measures were believed to pro- tect the privacy and special psychological needs of SARS patients. However, such special treatment as putative “protection” by the health institutions further facilitated the isolation of SARS victims and repro- duced a negative image of them as “others.” In other words, the special treatment or protection could thus be perceived as a latent and subtle form of isolation and stigmatization. In addition, their special treatment led SARS victims to subjectively believe they were differ- ent from others (Kleinman, 1988). One participant who was still having follow-up treatment said, I feel like I am still “dirty” and being isolated from others. I still need to have follow-up in various SARS clinics. We have a special entrance and lift to enter the clinic, and I feel [I am] being isolated and feel myself as “dirty” [because of] this measure. This arrangement makes me feel that I am a “polluted” person that can still infect others, just as if I had AIDS. This arrangement that isolated us [SARS victims] from them [other patients without SARS] really makes me feel that I am different from others. Indeed, having such kind of clinics that are exclusively for us is useless, because others can still recognize your background if they can see you coming in or out from the special entrances of these clinics. The follow-up arrangement for the SARS victims also made the participants vulnerable to stigmatization 734 when they tried to reunify with mainstream Hong Kong society. As some participants were suffering from psy- chological difficulties, some of the interview partici- pants (n = 9) also arranged to have follow-up in psychiatric public outpatient clinics. Given that psychi- atric patients have long been stigmatized in Hong Kong, having a follow-up in a psychiatric clinic meant that these victim participants were vulnerable to addi- tional stigma, as by extension were their family members. This kind of stigma not only involved the participants themselves, but just as Goffman (1968) stated, stigma could be extended from an individual to those who bear relationships with the stigmatized indi- vidual. A participant stated, I suffered from an emotional disorder after SARS. Besides having follow-ups in ordinary SARS clinics I also arranged to have follow-ups in psychiatric outpa- tient clinics. However, I am just suffering from an emotional disorder, which is different from psychi- atric disease. Indeed, I do not want to have any follow- ups in psychiatric clinics, as I do not want to have my psychiatric file recorded. Having a psychiatric file can mean that I have to suffer from another stigma. Not only myself, but my children will be discriminated against as well, since they will be rejected in working on some jobs.3 I do not want to involve my children just because their mother has a psychiatric file. Reconstruction of SARS-Associated Stigma by the Public In addition to medical doctors and government institutions, the general public also played a role in reconstructing post-SARS stigma on SARS victims. Even though 43.3% (n = 13) of the interview partici- pants successfully resumed work and so were not behaving against the capitalist mentality, all suffered from certain degrees of stigmatization, or even dis- crimination, in their workplace, predominantly from their colleagues. One participant shared her experi- ence in these words: I have no friends in the office, because I feel like I am being isolated by them. I do not have any social activ- ities with my colleagues. When my colleagues go out for lunch together, I can just only have my lunch alone. At the very beginning when I resumed work, I intended to go out for lunch with my colleagues, just as the way before I went into the hospital [because of SARS]. However, things have become very different after I came back. They avoided talking with me. When I walked towards them, they would look at me with an unfriendly gaze and leave immediately. It seems that I am just like a patient with leprosy. Some col- leagues even said some bad things [gossip] about me. Other cases of stigmatization and discrimination originated from employers. All participants who resumed work told me they had attempted to conceal their sickness history to avoid trouble after switching jobs, as all of them had encountered stigmatization and isolation in the work place. Another participant said, The attitude of my boss became very different after he knew that I had contracted SARS. At the begin- ning, my boss did not know about my history, and so he was quite okay to me. Later on, because I needed to take sick leave routinely because of the follow-up of my after-effects, my boss began to feel doubtful and so he asked me what my problem was. As I was so naïve that I thought it would not cause me any problems at all even if I told him about my sickness background, I told him that I have the history of catching SARS. He was very shocked at that time and did not say anything. Later, he made many excuses to make me feel difficult and embarrassed. When he saw me touching things in the office he would ask other colleagues to use bleach or alcohol to disinfect that place. Of course, other colleagues would soon learn that I have some contagious dis- ease and so keep gossiping about me. When I asked him for sick leave later on, he would then say that he would rather not to employ me because I am so lazy and troublesome. I quit this job later, and I did not dare tell my new boss and colleagues about my back- ground, because you can't guarantee that you will not get into the same trouble again. To conceal my history in a better way, I discontinued the follow-up by myself. In addition to the work sphere, SARS-associated stigmatization and discrimination persisted in many aspects of life during the post-SARS era of Hong Kong. Such a stigma had the capacity to be extended to those who had relationships with the participants (Goffman, 1968), such as their family members. The post-SARS stigmatization and discrimination experi- ences suffered by family members motivated them to stigmatize the participants in turn. To most partici- pants, therefore, returning home with a new sickness history, label, and the stigma of SARS was the begin- ning of a new nightmare. They had to adapt to the new cultural environment resulting from the SARS-associated stigma. Returning home was thus a depressing expe- rience for them as they began to realize from the 735 discriminatory behavior of others—including their family members—that they had become contaminated, polluted, and dirty. Among the 30 interview partici- pants, 70% (n = 21) experienced being stigmatized by their family members and 93.3% (n = 28) were stigma- tized by their friends. One participant stated, The most difficult stage was the time just after you left the hospital. Returning home does not always mean that we could get family support, though. My family members felt very reluctant to sit, talk, or eat with me when I had just returned home from hospi- tal. Of course, I also felt reluctant to do these things with them as well, because I still felt that I was “dirty.” Even nowadays, my family members are reluctant to eat with me. I have moved out and rarely have contact with my family members, except some very important Chinese festivals, since they still have the impression that I still have not recovered due to my regular visits to the SARS clinics. Another participant added, My friends have stayed away from me since my infection. My social sphere has become totally dif- ferent now. My friends now are totally different from those before my infection, because the former ones have disappeared since then. Because of post-SARS stigmatization and contin- uing seclusion, the participants were still being shunned and isolated from many spheres of daily life, including the workplace and family. Learning to live with a disease-associated stigma and a new sickness label as a chronically-ill person was a particularly lonely journey for the participants, which is in keep- ing with a previous study suggesting that “[s]elf- stigma also dampened their level of perceived support, which serves to ameliorate psychological distress” (Mak et al., 2007, p. 1557). A SARS victim shared her pessimistic view with me: I cannot foresee that I can have a day to get recov- ered, since I am still suffering from the after-effects up till now. It has been three years already, but I can- not see any progress at all. All aspects of life have become so frustrating since my infection of SARS. No one understands me, whether doctors, family members, relatives, and friends. Not many people, even the doctors, can understand we are still suffer- ing from the after-effects. Instead they just believe that we are pretending and exaggerating. I am just like an AIDS patient, afraid of exposing myself and afraid of being discriminated against and shunned. I have to hide myself as much as possible. I strongly feel that I have been abandoned by society. I can only bear this burden alone. No one can help me. Discussion Although SARS had already been over for almost four years when I was writing this article SARS victims still encountered the unpleasant experiences of being stigmatized and discriminated against in many aspects of life. In research done on the SARS-related stigma of the residents of Amoy Gardens, Lee et al. (2005) suggested that future studies should “examine whether and how stigma toward SARS may decrease over time” (p. 2045). The assumption of “how stigma toward SARS may decrease over time,” however, is not necessarily valid. As I demonstrate, such a contention is inconsistent with the findings of this research. The stigma relating to SARS victims who suffered during the outbreak have not disappeared as time passed but, in stark contrast, have been reconstructed from time to time in the post-SARS era of Hong Kong. Link and Phelan's (2001) research noted that stigmatization does not take place unless there is a power differential in which one social group has suf- ficient resources to exert influence on public attitudes toward other particularly powerless social groups and thereby override their interests. This idea is consistent with the findings of this research, as the data again suggested that the more powerful groups—such as institutional forces like biomedical doctors, govern- ment institutions, and the public forces of the social majorities—played the major roles in reconstructing the stigmatization of SARS victims in Hong Kong. As shown from the ethnographic data, the partici- pants still wore facemasks during the post-SARS time, especially when attending media activities that required them to publicize their identities. Although a minority of them considered themselves infectious, most of them wore facemasks because they were anx- ious about stigmatization. Wearing a facemask longer than necessary could further enhance the partici- pants' sense of isolation and stigmatization. Corrigan and Watson (2002) further indicated that such a sense of shame is a self-stigma, which happens when members of a devalued group become aware of the prejudice, stereotypes, and discrimination, which can lead to their internalization of such beliefs (2002, pp. 35-53). In addition, the skeptical and unsupport- ive remarks of health care workers could impact the self-identities of the SARS victims, which might lead 736 to their subjective feelings of shame and being stigma- tized. This is consistent with Kleinman's (1988) descrip- tion of “instances in which patients feel shame, not because of the cultural meaning of illness, but rather in response to the reactions of family and especially health professionals” (p. 160). Kleinman (1988) maintains that “a person so labeled is shunned, derided, disconfirmed, and degraded by those around him, though usually not by the immediate family” (p. 160). However, the experience of the partic- ipants shows a new pattern: that stigmatization can also happen within the family immediately after contracting a communicable disease like SARS. It was astonishing that during the SARS outbreak, and even in the post- SARS era, rejection became more usual on the part of families than support, in contrast to the patterns observed by Kleinman. As indicated by the participants, the post-SARS stigma attached to them led to their suffering emotion- ally. Some participants even indicated that the stigmati- zation they were experiencing in biomedical encounters and in public discouraged them from undergoing the follow-up treatment of their SARS-related sequelae. This is consistent with the idea of Watkins and Plant (2004) that social stigma was “a cause of distress and delay in treatment seeking” (p. 699). However, I con- tend further that social stigma also motivated my par- ticipants to default completely on their treatment. Moreover, in stark contrast to Watkins & Plant's find- ings that none of their participants were treated differ- ently after their infection with tuberculosis (p. 700), the participants in my research experienced stark differ- ences in attitudes from their family members, friends, and colleagues after they had contracted SARS. Previous studies had shown that defaults from treat- ment were often closely linked with a poor understand- ing of the treatment (Barnhoorn & Adriaanse, 1992; Tekle, Mariam, & Ali, 2002) in addition to the expen- sive financial cost of treatment (Watkins & Plant, 2004, p. 702). However, according to findings from this research, I further argue that disease-associated stigma was also significant factors in the default of follow-up treatment by the participants. Because of the conflicting perceptions of the SARS victim participants and some medical doctors about the SARS sequelae, 53.3% (n = 16) of the inter- view participants stated that they had quarreled with the medical doctors at least once during follow-up. Kleinman referred to this as the conflicting explana- tory models between medical doctors and patients (1988, p. 122). However, I argue that the conflicting explanatory model about SARS sequelae was not merely because of miscommunication between med- ical doctors and patients, but also because of negative cultural stereotypes and presuppositions about SARS victims. The doctors' skepticism, in turn, originated from their comparisons with their infected colleagues within the health care sector who had recovered suc- cessfully by resuming normal work. The remarks of the participants revealed that some medical doctors in the clinics had already possessed a presupposition and skepticism that the physical complaints of the participants were merely their imaginations. Such presuppositions and skepticism could therefore result in the conflicting explanatory models between the medical doctors and the participants in this context, and could also motivate the participants to default on their follow-up treatments. How SARS-Associated Stigma Could Create Problems in Public Health After the SARS outbreak in 2003 several smaller out- breaks of other minor communicable diseases also emerged. The emergence of communicable diseases like noroviral gastroenteritis in Hong Kong, Avian Influenza in Southeast Asia, and the outbreak of the meningococ- cal meningitis in some provinces of Mainland China caused great anxiety for the people of Hong Kong. The Avian Influenza in late 2005 generated even more anxi- ety for the SARS study participants. The stigmatization and discrimination that the participants had experienced during and after the SARS outbreak, however, could create problems in the public health of Hong Kong. The stigmatization and discrimination could motivate them to conceal their health status should there be another outbreak of Avian Influenza, which is unfavorable to long-term public health policies. The following SARS victim's response is alarming: If there were an outbreak of bird flu [Avian Influenza] among humans in Hong Kong, and if unfortunately, I got infected again, I would prefer hiding myself in a secret place and waiting for death rather than going into the hospital. The discrimina- tion against us is really horrifying, and I cannot imagine that I am still suffering from this [discrimi- nation] now. . . . I have become an alien since my infection of SARS. Having been a SARS victim is a permanent identity, and I have to bear this stigma forever. That's why I prefer hiding myself rather than going into hospital if I get infected with bird flu. I do not mean to be irresponsible, but one stigma is 737 already too heavy for me, and I cannot afford to bear an additional one. Besides the dangerous behavior of concealing themselves if they really contracted Avian Influenza, some participants also scrambled for the antiviral medication Tamiflu® in late 2005 to prepare for the possible outbreak of Avian Influenza. The scramble for the antiviral medication was also because of the SARS-associated stigma suffered by the participants. Among the 30 interview participants, 40% (n = 12) of them bought Tamiflu® from the drugstore in an attempt to treat themselves in case they contracted Avian Influenza. One participant said, I did not want to go through the same experience of being discriminated against if there were an outbreak of bird flu. It's really very horrifying. The stigma of having been a SARS patient is long-lasting, and I can- not bear one more stigma. After knowing that Tamiflu® is the most effective drug in treating bird flu (from the news), I immediately bought four boxes of it from dif- ferent drugstores. With this drug, I can then treat myself at home without going into hospital if I really get bird flu. Then I can hide myself at home, and no one will know. The scramble to buy Tamiflu® at the community level is even more detrimental to public health, as the (mis)use of this medication without appropriate med- ical advice and supervision can result in people becoming resistant to its effects. Self-treatment can also increase the risk of spreading the disease to the broader community. As a result, SARS-associated stigma can impose an unfavorable impact on the prospect of public health development in Hong Kong. Limitations The findings of this study should be interpreted with caution. Given the small number of interview samples the findings are not representative of all SARS victims in Hong Kong. Further research with larger samples and more study sites other than the SARS victims' self-help group might add credibility. The participants who were sampled in this research had unpleasant and traumatic experiences in encounter- ing SARS-associated stigmatization. None of the par- ticipants found the SARS-related follow-up treatment to be useful and beneficial. This sampling criterion, though, can create bias in the findings, as the findings of this article are presumably focused on those who had negative experiences. Further research on those who found the follow-up system useful and beneficial can overcome this selection bias. Despite these limitations, this study still has significant implications for how SARS-associated stigma could have an impact on the prospect of public health development in Hong Kong, which is important and crucial for public health deci- sion planning. Conclusion In this study, I attempted to provide a new insight of how the SARS-associated stigma can persist in Hong Kong society after the SARS outbreak, rather than decreasing over time. Because of the continuing stigma that was reconstructed by biomedical encounters, gov- ernment institutions, and the public perception, the SARS victims still encountered many difficulties in resuming normal lifestyles in the post-SARS era. I also provide a new insight of how the SARS-associated stigma that was still continuing could create problems for public health development in Hong Kong. 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<p><list list-type="order">
<list-item><p>1. See the Web site of the Legislative Council at http:// www.legco.gov.hk/yr05-06/english/panels/ws/agenda/wsag0309j .htm</p></list-item>
<list-item><p>2. See the Web site of the Hong Kong government at http:// www.info.gov.hk/gia/general/200412/08/1208196.htm</p></list-item>
<list-item><p>3. Having family members with a psychiatric record will disqualify a person from working on disciplined service units of the Hong Kong government, such as the Hong Kong Police Force, Fire Services Department, Customs and Excise Department, Hong Kong Correctional Services Department, and the Hong Kong Immigration Department.</p></list-item>
</list></p>
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</ref-list></back></article></istex:document></istex:metadataXml><mods version="3.6"><titleInfo lang="en"><title>The SARS-Associated Stigma of SARS Victims in the Post-SARS Era of Hong Kong</title></titleInfo><titleInfo type="alternative" lang="en" contentType="CDATA"><title>The SARS-Associated Stigma of SARS Victims in the Post-SARS Era of Hong Kong</title></titleInfo><name type="personal"><namePart type="given">Judy Yuen-man</namePart><namePart type="family">Siu</namePart><affiliation>University of Queensland, Herston, Queensland, Australia</affiliation></name><typeOfResource>text</typeOfResource><genre type="research-article" displayLabel="research-article" authority="ISTEX" authorityURI="https://content-type.data.istex.fr" valueURI="https://content-type.data.istex.fr/ark:/67375/XTP-1JC4F85T-7">research-article</genre><originInfo><publisher>SAGE Publications</publisher><place><placeTerm type="text">Sage CA: Los Angeles, CA</placeTerm></place><dateIssued encoding="w3cdtf">2008-06</dateIssued><copyrightDate encoding="w3cdtf">2008</copyrightDate></originInfo><language><languageTerm type="code" authority="iso639-2b">eng</languageTerm><languageTerm type="code" authority="rfc3066">en</languageTerm></language><abstract lang="en">This article explores the disease-associated stigma attached to the SARS victims in the post-SARS era of Hong Kong. I argue that the SARS-associated stigma did not decrease over time. Based on the ethnographic data obtained from 16 months of participant observation in a SARS victims' self-help group and semistructured interviews, I argue that the SARS-associated stigma was maintained, revived, and reconstructed by the biomedical encounters, government institutions, and public perception. I also provide new insight on how the SARS-associated stigma could create problems for public health development in Hong Kong. As communicable diseases will be a continuing threat for the human society, understanding how the disease-associated stigma affects the outcomes of epidemic control measures will be crucial in developing a more responsive public health policy as well as medical follow-up and social support service to the diseased social groups of future epidemic outbreaks.</abstract><subject><genre>keywords</genre><topic>anthropology</topic><topic>anthropology</topic><topic>medical</topic><topic>community and public health</topic><topic>ethnography</topic><topic>Hong Kong</topic><topic>interviews</topic><topic>semistructured</topic><topic>participant observation</topic><topic>SARS</topic></subject><relatedItem type="host"><titleInfo><title>Qualitative Health Research</title></titleInfo><genre type="journal" authority="ISTEX" authorityURI="https://publication-type.data.istex.fr" valueURI="https://publication-type.data.istex.fr/ark:/67375/JMC-0GLKJH51-B">journal</genre><identifier type="ISSN">1049-7323</identifier><identifier type="eISSN">1552-7557</identifier><identifier type="PublisherID">QHR</identifier><identifier type="PublisherID-hwp">spqhr</identifier><part><date>2008</date><detail type="volume"><caption>vol.</caption><number>18</number></detail><detail type="issue"><caption>no.</caption><number>6</number></detail><extent unit="pages"><start>729</start><end>738</end></extent></part></relatedItem><identifier type="istex">CF969C07D23CD8F2F08E9E65EB7577C1A376F9CF</identifier><identifier type="ark">ark:/67375/M70-GLMK32T2-X</identifier><identifier type="DOI">10.1177/1049732308318372</identifier><identifier type="ArticleID">10.1177_1049732308318372</identifier><recordInfo><recordContentSource authority="ISTEX" authorityURI="https://loaded-corpus.data.istex.fr" valueURI="https://loaded-corpus.data.istex.fr/ark:/67375/XBH-0J1N7DQT-B">sage</recordContentSource></recordInfo></mods><json:item><extension>json</extension><original>false</original><mimetype>application/json</mimetype><uri>https://api.istex.fr/ark:/67375/M70-GLMK32T2-X/record.json</uri></json:item></metadata><serie></serie></istex></record>Pour manipuler ce document sous Unix (Dilib)
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