外國語文學研究所 碩士論文. A Thesis for Master of Arts Graduate Institute of Foreign Language and Literature. National Cheng Kung University

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1 外國語文學研究所 碩士論文 A Thesis for Master of Arts Graduate Institute of Foreign Language and Literature National Cheng Kung University 汙名蒼穹下的無名傘 : 從言談分析探討台灣某愛滋網路留言版使用者之匿名感與虛擬診斷需求 The Umbrella under the Dome of Stigma: A Discourse Analysis on Users Needs for Perceived Anonymity and Virtual Diagnosis of a Taiwanese HIV/AIDS Forum 研究生 : 宋彥萱 By Yen-Hsuan Sung 指導教授 : 蔡美慧博士 Advisor: Dr. Mei-Hui Tsai 中華民國一百零五年六月 June 2016

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3 摘要 隨著網路科技的進步, 人們對網路健康諮詢的需求日漸增長 雖然已有許多研究探究醫療網路社群提供健康資訊 ( 如 : 疾病預防或治療 ) 或情感社會支持的功能, 但甚少論及愛滋網站的功能, 故本研究分析台灣某愛滋網站使用者尋求協助的貼文內容, 並將其與梅毒 青少年懷孕 肺結核 和癌症等四種醫療諮商網站語料比較, 以期了解網路愛滋諮商使用者的社會心理特質及愛滋諮商網站之功能 透過分析來自愛滋網站留言版的 82 篇語料和其他四個醫療網站的 216 篇貼文, 本研究發現以下五個言談模式 :(1) 和其他四個網站相比, 愛滋諮商留言板使用者有最高的確診需求 (89%, 其他網站尋求確診分別為梅毒 48% 肺結核 34% 懷孕機率 30% 癌症網站則僅有 2%) ( 2) 然而這些尋求確診的案例卻顯得多此一舉, 因為約 20% 的使用者在貼文內容中提到自己其實已經做過愛滋檢測, 部分甚至確認檢測結果為陰性 ( 即未感染 ), 卻仍透露對網路診斷的強烈需求 (3) 在貼文中提到的可能感染愛滋傳染途徑有 54% 與性行為相關, 但也有高達 42% 的傳染途徑是一般不認為是可能會造成感染的途徑 (4) 和其他四個網站相比, 愛滋諮商網站使用者明顯偏好使用 非人名感 (59%; 如 : 小酒館 ) 無性別感 (62%; 如 : 匿名者 TMAC ) 或帶有負面情緒 (34%; 如 : 煎熬 日也想夜也想 ) 之使用者名稱 (5) 雖然愛滋網站中的 82 個使用者名稱多屬於 無性別感 名稱 (62%), 然而其餘的名稱則含 男性感 (33%; 如 : 阿虎 Sam ) 的名稱多於含 女性感 (6%; 如 : Fay Daisy ) 此外, 針對愛滋諮商網站使用者的社會心理特質, 我們發現了以下特質 :(1) 大部分使用者所擔憂的可能感染途徑為性行為 (2) 他們大多具有高愛滋素養 高匿名感需求和高愛滋意識感 (3) 而主要目的皆為尋求虛擬診斷 這些研究成果不僅對網路健康言談領域有所貢獻, 也可作為針對各種高危險族群所制定的相關愛滋預防措施之參考 將上述 HIV/AIDS 貼文者的言談模式並與其他四個醫療網站比較後, 我們認 i

4 為台灣社會對傳統華人文化認定 非正常 性行為 ( 即 : 同性戀 多重性伴侶或婚前性行為 ) 傳染性疾病( 如 : 愛滋 梅毒或肺結核 ), 或死亡性相對較高的疾病 ( 如 : 愛滋或癌症 ) 貼上的多重汙名標籤驅使這些擁有 高愛滋素養 高匿名感需求 和 高愛滋意識感 或甚至可能為 愛滋慮病者 的使用者至愛滋網站尋求 虛擬診斷 換句話說, 不同於其他健康網站常扮演的提供醫療資訊或社會支持的角色, 本研究中的愛滋網站主要功能為提供 保護傘, 亦即使用者不需透露自己的任何社會身分, 免於受到污名侵擾, 即可得到是否感染愛滋的虛擬診斷 本研究呈現了與愛滋相關的污名對潛在愛滋感染者的言談使用影響, 譬如使用者該如何一邊保護自己的社會身分 傳達自己的焦慮, 更同時滿足他們的醫療需求 關鍵詞 : 網路醫療言談 愛滋諮商網站 匿名感 虛擬診斷 愛滋慮病者 ii

5 ABSTRACT With the advances in Internet technology, there is a dramatic increase of reliance on online healthcare consultation, especially for stigmatized diseases or health conditions. While the search for health information on disease prevention or treatment and social support are two commonly documented functions of most health forums, those of HIV/AIDS are not well explored. To fill this gap, the present study examined discourse patterns by users of an HIV/AIDS forum based in Taiwan, with a comparison of those by users of other health forum, including syphilis, teen pregnancy, tuberculosis (TB), and cancer. With this comparative approach, we aim to see the psychosocial characteristics of users of the HIV/AIDS forum and their perception of the forum s functions. By examining 82 users postings on the HIV/AIDS forum and a total of 216 postings on the other four medical consultation forums, our analysis manifests the following five discourse patterns. (1) Compared to the other four forums, users of the HIV/AIDS forum displayed the highest need for diagnosing or confirming their HIV infection status (i.e. 89%, as compared to 48% for diagnosing a syphilis infection status, 34% for TB infection, 30% for pregnancy status, and 2% for cancer status). (2) Such a strong need for an online diagnosis perceived by the HIV/AIDS forum users might appear to be redundant or ungrounded, as 20% of their posting actually revealed that their HIV negative status (i.e. they are HIV free) were already confirmed by previous tests. (3) About 54% of the suspected HIV transmission routes described in the users postings are sex-related behaviors, and 42% are routes which are generally not considered as possible ones. (4) Compared to the other four forums, users of the HIV/AIDS forum also displayed a highest preference for formulating their usernames which do not carry a sense of human name (59%, e.g or 小酒館 /Small Inn ) or a sense of gender (61%, e.g. 匿名者 /Anonymous Person or TMAC ), but convey a sense of emotional turmoil (34%, e.g. 煎熬 /Suffering or 日也想夜也想 iii

6 /Worry Day And Night ). (5) While the majority of the 82 usernames of the HIV/AIDS forum are genderless (61%), the rest of them are more constructed with a masculine sense (33%, e.g. 阿虎 /A-hu or Sam ) than a feminine sense (6%, e.g. Fay or Daisy ). Also the psychosocial features of users of the HIV/AIDS forum revealed in our study showed that they were: (1) mainly (male) individuals worrying about HIV transmission via sexual behavior, and (2) individuals with a high HIV/AIDS literacy, strong need for perceived anonymity, strong feeling of being HIV positive, and (3) individuals with a unanimous goal of looking for virtual diagnosis. These findings may shed a light for medical professionals in public health regarding HIV/AIDS prevention for high-risk groups of different social backgrounds. With the above discourse findings in compared the HIV/AIDS forum with four medical consultation forums based in Taiwan, we argued that multiple levels of stigma rooted in Taiwanese society toward abnormal sexual behaviors (e.g. homo, excessive, pre-marital sex), infectious disease (e.g. AIDS, syphilis, or TB), or relatively high mortality disease (e.g. AIDS or cancer) have driven individuals with high HIV/AIDS literacy, a strong need for perceived anonymity and a strong feeling of being HIV positive (even to the point of being an AIDS worried-well or AIDS phobia ) to look for virtual diagnosis on the HIV/AIDS forum. In other words, unlike the functions of providing health information or social support of other health forums observed in previous studies, that of the HIV/AIDS forum perceived by users in our study is the umbrella that frees them from disclosing any social identity, shields them from tremendous stigma, and reassures them with a virtual diagnosis. This study contributes to the field of Internet health discourse in the following way. It demonstrates how the strong stigma associated with HIV/AIDS may drive its potential sufferers to construct language use as a way to protect their social identity, to iv

7 reveal their anxiety, and also to serve their needs for medical help. Keywords: online medical discourse, HIV/AIDS consultation forum, perceived anonymity, virtual diagnosis, the HIV worried-well v

8 ACKNOWLEDGEMENTS The completion of this thesis is like a dream come true. Still, but for the assistance and encouragement from a few people, I would never accomplish this arduous task. For this reason, I d like to express my gratitude to them in the following paragraphs. To begin with, I d like to thank May, Dr. Mei-hui Tsai, for her guidance and teaching for all these years. I ve known May ever since I was a freshman in college. Throughout these years in National Cheng Kung University, I have always had absolute faith in not only May s professional knowledge but her honest and kind personality. During the completion of my thesis, she has provided me with sound advice for both my studies and my life. Without her, I would never be able to finish my research. Secondly, I d like to express my gratitude to my dearest partners in graduate school, Celia, Fanny, Iris, Nora, and Sherry. I ve been working with them since my day one in graduate school. Throughout these years, they have all treated me like a family and shared their ups and downs with me without holding back. Moreover, they never showed any hesitation and were there for me whenever I was in need of help. Without their help and comfort, I would never have the patience and courage to go through all the difficulties within the four years. Last but not least, I would like to express my deepest appreciation to my best friends, Carolina and Max, and my boyfriend Daniel, for supporting me both mentally and physically during all these years. As my college classmates, Caro and Max always understand my agony and frustration as a linguistic student, and they are always there to listen to me and reach out to me without any complaints. On the other hand, Daniel, as a graduate student as well, understands and tolerates my bad mood when I am frustrated because of my research. If it had not been for their love and encouragement, there is no way that I could have coped with all the difficulties. For all they have done to me, I really cannot thank them enough. vi

9 TABLE OF CONTENTS ABSTRACT (CHINESE)...i ABSTRACT (ENGLISH)... iii ACKNOWLEDGEMENTS...vi LIST OF EXCERPTS AND TABLES... x CHAPTER ONE INTRODUCTION... 1 CHAPTER TWO LITERATURE REVIEW AIDS & Its Stigma Functions of the Online Medical Forums Anonymous Participation Information Exchange & Patient Autonomy Social Support & Disease Prevention Online Usernames CHAPTER THREE METHODOLOGY Data Collection Data Analysis Purposes of the Postings Transmission Routes Sense of Human Names The Sense of Gender of the Users Other Medical Consultation Forums vii

10 CHAPTER FOUR RESULTS Purposes of the Postings Transmission Routes Sense of Human Names Sense of Gender Comparison among the Five Medical Consultation Forums Purposes of the Postings in the Five Forums Sense of Human Names of the Usernames in the Five Forums Sense of Gender Presented by the Usernames and Content of the Postings in the Five Forums CHAPTER FIVE DISCUSSION The Majority of Users on AIDS & Syphilis Forums Are Male AIDS worried-well Users with Strong Feeling of Being HIV Positive & High AIDS Literacy Postings with the Same Purpose & Users with Preventive HIV/AIDS Insight Multiple HIV Tests & Description of AIDS-related Technical Terms Emotional Phrases as Usernames Transmission Routes with Low Risk for HIV Infection Users High Need for Anonymity Usernames without sense of human names Face Issue & The Amount of Social Background Information The Face Problem and Stigma of AIDS in Chinese Culture viii

11 5.5 The Virtual Diagnosis Function of HIV/AIDS Forums CHAPTER SIX CONCLUSION Summary of Main Findings Implications Limitations & Suggestions for Future Studies REFERENCES ix

12 LIST OF EXCERPTS AND TABLES Excerpt 1 (YL1; translation from Chinese to English) The Original Format of the Postings with Altered Wording/Sentence Patterns Excerpt 1.1 (YL1; the original Chinese text) The Original Format of the Postings with Altered Wording/Sentence Patterns Excerpt 2 (YL1; translation from Chinese to English) Modified Format with Altered Wording/Sentence Patterns Excerpt 3 (YL53; translation from Chinese to English) Excerpt 3.1 (YL53; the modified Chinese text) Excerpt 4 (YL70; translation from Chinese to English) Excerpt 4.1 (YL70; the modified Chinese text) Excerpt 5 (YL11; translation from Chinese to English) Excerpt 5.1 (YL11; the modified Chinese text) Excerpt 6 (YL19; translation from Chinese to English) Excerpt 6.1 (YL19; the modified Chinese text) Excerpt 7 (YL54; translation from Chinese to English) Excerpt 7.1 (YL54; the modified Chinese text) Excerpt 8 (YL24; translation from Chinese to English) Excerpt 8.1 (YL24; the modified Chinese text) Table 1. Adapted from Statistics of HIV/AIDS of Taiwan CDC (Until Feb., 2016) Excerpt 9 (YL65; translation from Chinese to English) Excerpt 9.1 (YL65; the modified Chinese text) x

13 Excerpt 10 (YL14; translation from Chinese to English) Excerpt 10.1 (YL14; the modified Chinese text) Excerpt 11 (YL74; translation from Chinese to English) Excerpt 11.1 (YL74; the modified Chinese text) Excerpt 12 (YL58; translation from Chinese to English) Excerpt 12.1 (YL58; the modified Chinese text) Table 2. Usernames Applied in the Postings Excerpt 13 (YL03; translation from Chinese to English) Excerpt 13.1 (YL03; the modified Chinese text) Excerpt 14 (YL56; translation from Chinese to English) Excerpt 14.1 (YL56; the modified Chinese text) Figure 1. Characteristics of the Five Medical Consultation Forum Table 3. Comparison of the Five Medical Forums Table 4. Distribution of the Posting Purposes on AIDSq Table 5. Distribution of Transmission Routes Mentioned in the Postings on AIDSq Table 6. Distribution of Usernames Applied on AIDSq Table 7. Distribution of the Sense of Gender in Usernames and the Content of the Postings on AIDSq Table 8. Comparison of the Posting Purposes on the 5 Medical Forums Table 9. Comparison of the Usernames on the 5 Medical Consultation Forums Table 10. Sense of Gender in Usernames and Content of Postings on the Five Medical Consultation Forums xi

14 Excerpt 15 (YL29; translation from Chinese to English) Excerpt 15.1 (YL29; the modified Chinese text) Excerpt 16 (YL51; translation from Chinese to English) Excerpt 16.1 (YL51; the modified Chinese text) Excerpt 17 (YL36; translation from Chinese to English) Excerpt 17.1 (YL36; the modified Chinese text) Excerpt 18 (YL8; translation from Chinese to English) Excerpt 18.1 (YL8; the modified Chinese text) Excerpt 19 (MD25HPDR, from syphilis forum; translation from Chinese to English) Excerpt 19.1 (MD25HPDR, from syphilis forum; the modified Chinese text) Excerpt 20 (WH23black, from teen pregnancy forum; translation from Chinese to English). 80 Excerpt 20.1 (WH23black, from teen pregnancy forum; the modified Chinese text) Table 11. No. of Postings Including Social Background Information of the User/Patient Excerpt 21 (FJH5vivi, from TB forum; translation from Chinese to English) Excerpt 21.1 (FJH5vivi, from TB forum; the modified Chinese text) Excerpt 22 (AZ57LXJ, from cancer forum; translation from Chinese to English) Excerpt 22.1 (AZ57LXJ, from cancer forum; the modified Chinese text) xii

15 CHAPTER ONE INTRODUCTION In 1981, a group of young homosexual men were diagnosed with the Acquired Immune Deficiency Syndrome (AIDS). Ever since then, the rapidly-increasing cases of AIDS, its contagiousness, and the fact that its main transmission routes are related to sexual intercourse and drug abuse have entitled AIDS the notorious black death of the 20th century. According to the Statistics of HIV/AIDS from the Centers for Disease Control, R.O.C. (Taiwan), 31,430 native AIDS patients were registered in Taiwan by Among these patients, men having sex with men (MSM) is the largest subpopulation infected with HIV, accounting for 59% of the national population of HIV positive, followed by injection drug users (IDU) (22%), and people conducted heterosexual intercourse (18%). Besides, 92.4% of the three subpopulation mentioned above are male, while only 3% of them are female. In addition to the factors of gender and sex behaviors, the data also showed that HIV infections are most likely to occur to youth and middle-aged groups of years old, years old and years old (the infection rates are 43%, 27% and 23% respectively of the country s total number of infections). Due to the layered stigmatization towards AIDS, people living with AIDS (PLWA) and high-risk groups would hesitate to seek help for their medical needs, resulting in an impediment of AIDS prevention and control. As a result of the ubiquitous convenience of Internet, online medical forums (such as online HIV/AIDS forums) have become the key media where the public looks for information or social support (Richardson, 2001; Bert et al., 2013; Nielsen, Jull, & Hodges, 2014; Das & Faxvaag, 2014). The participation within the Internet world is text-based, meaning that neither the participants appearance nor their voice are disclosed (generally called as anonymous participation), which allows open discussions of unspeakable issues in the real world (e.g. sex-related troubles). Most of 1

16 the users seeking for online resources are youth and middle-aged groups with higher computer literacy (Lin, 2013; Taiwan Network Information Center, TWNIC, ; SmartM, ; National Development Council, ). Based on the importance of AIDS control and prevention, there are different AIDS-related websites and forums established by private organizations in Taiwan, such as Taiwan Lourdes Association (TLA), Persons with HIV/AIDS Rights Advocacy Association of Taiwan, Taiwan AIDS Foundation, Heart in Valley, Light of Friendship Association of Taiwan, Love Hope Organization, etc. Thus, it has triggered the attention of scholars from different fields towards the impact of online medical forums on the seeking medical attention or health behaviors of the public (Babio et al., 2006; Braverman & Samsonov, 2011; Grau, Grajales Iii, Gene-Badia, Siso, & De Semir, 2013; Bloem & Munneke, 2014). For instance, Ko (2010) discovered the coaching of opinion leaders in the online homosexual communities by the public health personnel is helpful to increase the public s AIDS preventive behaviors, such as anonymous HIV screening and the usage of condom during sexual intercourses. This issue has drawn the attention of many interdisciplinary medical discourse scholars (Locher, 2006). For instance, Harvey, Brown, Crawford, Macfarlane, & McPherson (2007) analyzed Teenage Health Freak, a website provided teenagers health consultations, and discovered that, unlike the convention of using metaphorical expressions for sex, the adolescent users detailed straightforwardly the physical size of the sexual organ without any reservation so as to express their doubts of being normal (Am I normal?). The author believes such wordings reflected the youth s anxiety and 1 (Retrieved on: Dec. 20 th, 2015) 2 (Retrieved on: Dec. 20 th, 2015) 3 kyzljltrkmmmtyjkyns02mtdimmy4otbkmgeucgrm&n=mta076ao5ycl5lq65a625oi276wp5l2n5qm f5pyd6kq%2f5p%2bl5acx5zgklnbkzg%3d%3d (Retrieved on: Dec. 20 th, 2015) 2

17 desperation for self-positioning. In 2015, Lin and Tsai discovered from the selfintroduction postings in a bulletin board system in Taiwan that 84% of the cancer patients revealed their ages in their self-introductions, conveying their bitterness and the sense of loss, such as Why me? I m only 27 years old! Via the micro-analysis of the narrative patterns of the postings from the online users, the aforementioned discourses analysis highlights not only the functions of the medical forums but the users psychosocial characteristics that are uneasy to be exposed within the real social context. In a society generally overwhelmed with layered stigmatization of PLWA and high-risk groups, the anonymous participation in the HIV/AIDS forums has provided a sanctuary to protect the users real identities; yet, can discourse analysis reflect the socio-psychological traits (e.g. gender, social status, insights, etc.) other than the users true identities? For the users, what are the main functions of these online HIV/AIDS forums? We will examine the aforementioned issues from the perspectives of discourse analysis. In addition, from our previous analysis of the discourses from the postings of an HIV/AIDS forum in Taiwan, the preliminary discoveries are as follows: (1) comparing to the discourse patterns in other contexts (e.g. the more than nineteen thousand articles compiled in Sinica Corpus), explicit sex organs nouns or sex behavior verbs were frequently utilized by the users of such forum when referring to sexual behaviors (Chang, 2012); (2) the users of the forum mentioned repeatedly about AIDS examinations at their own expenses but did not trust the results of such examinations, used a large amount of medical terms, and avoided disclosing personal information in the postings. Thus, it is speculated that most of the users of this forum were people of higher socioeconomic status or had received higher education (Sung, Tsai, & Chang, 2013). However, the forum consisted of the interactions between only a single medical professional and multiple users; thus, the amount of postings, instant responses, 3

18 individual interactions and replies were relatively few. To further understand the users discourse patterns and characteristics of HIV/AIDS forums, this study analyzed another HIV/AIDS forum with the pseudonym AIDSq, focusing on the analysis of the speech components: the posting purposes of the users, the routes of infection mentioned in their descriptions, and the gender, identity or social traits that can be speculated in the descriptions. Also, to prove the discourse patterns observed in this research were the users features of HIV/AIDS forums, we also compared our results with those of other medical consultation forums with distinctive infection routes and disease characteristics: syphilis, teenage pregnancy, tuberculosis and cancer forums. The present research investigates postings in a Taiwanese HIV/AIDS forum and another four online medical consultation forums with a view to exploring the following two issues: 1. What are the discourse patterns of inquiries posted by users seeking for help on an HIV/AIDS forum? 2. What are the functions of the forum and what socio-psychological characteristics of the users are reflected by these patterns? 4

19 CHAPTER TWO LITERATURE REVIEW In this chapter, we will review previous studies from three perspectives: (1) AIDS & its stigma, (2) the functions of online medical forums, and (3) online usernames. 2.1 AIDS & Its Stigma Goffman (1963: preface) defines stigma as the situation of the individual who is disqualified from full social acceptance (p.4), and he further categorized three types of stigma: (1) physical defects (e.g. handicapped, marks on the face), (2) personal flaws that are regarded as unnatural or weak-willed (e.g. alcoholics, homosexuals, or drug addicts), and (3) race, nation and religion. With the first two characteristics mentioned above, people living with AIDS (PLWA) suffer layered stigma (Cloete, Kalichman, & Simbayi, 2013; Rogers et al., 2014). To begin with, diseases and illnesses represent defects of the body. People with medical conditions, including mental illness, disability (Fitzpatrick, 2008), contagious diseases (Williams, Gonzalez-Medina, & Vu Le, 2011), specific skin diseases (Satorius, 2007), cancer, and even obesity (Corrigan et al., 2014), are all likely to become the victims of stigma. In brief, stigma coexists with diseases and illnesses. Owing to its infectiousness and apparent symptoms (e.g. the red rash), AIDS patients are prone to be excluded and discriminated by the society (Herek, 1999). In addition, the window period that exists before the positive diagnosis also deepens the uncertainty as well as the fear towards AIDS. Even with the advances in modern medicine, AIDS is still considered by the society as an incurable disease and associated with terminal illness and death despite the fact that it is now a chronic disease whose amount of virus can be controlled by medication. A survey conducted by TLA (2013) showed that 90% of the interviewees believed AIDS treatment to be 5

20 very complicated, and 60% of them thought that AIDS patients need to take, at least, 10 pills a day; also, more than 10% considered AIDS as a terminal illness. Secondly, people living with AIDS suffer severely from layered stigma since AIDS is usually associated with homosexual, proliferate or abnormal sexual behaviors, drug abuse and other personal characteristics of being unnatural and weak-willed. Taking Taiwan as an example, there were 31,430 infected patients until According to HIV/AIDS Monthly Statistics from Center for Disease Control, MSM accounted the highest (59%), followed by the drug abusers via injections (22%) and heterosexual sexual behaviors (18%). The male infected patients of these three categories accounted 92.4% of the total number of infected patients. Also, in early society, homosexuality used to be considered as a disease by the medical community due to the lack of understanding (Lin, Yang, & Chang, 2004; Fitzpatrick, 2008). Based on the interpretation by certain Christians, it is believed that homosexuality is being described as an abominable sin in the Bible (e.g. Leviticus 18:22. King James Version (KJV): Thou shalt not lie with mankind, as with womankind: it is abomination. ). For this reason, the homosexuals are being rejected. As sexual behaviors and drug abuse are considered voluntary and avoidable behaviors, the suffering of AIDS is regarded as the deserving bitter consequences (Herek, 1999). Owing to their sexual orientation, not only do the homosexuals suffer stigma and discrimination, but they also need to face the society s biases towards AIDS. Research showed that over 1/4 of homosexual patients revealed to be discriminated by the medical staff members in the past (Dardick & Grady, 1980). Many medical staff members hold the wrongful conception of gays must have AIDS (Lucksted, 2004). Fear and prejudice towards AIDS patients also exist among the medical personnel. For instance, Oyeyemi, Oyeyemi, and Abegunde s (2006) survey found that some physical therapists or caregivers were unwilling to actively take care of the AIDS 6

21 patients, while some physicians were also unwilling to conduct invasive treatments or mouth resuscitation. Furthermore, many who were under suspicion of AIDS would often request other examinations (e.g. allergy) in order to cover the purpose of screening HIV (Young & Bendavid, 2010). There were even patients who did not reveal the test results to their sex partners after receiving their diagnosis, and thus transmitted HIV to others (Wenger, Kusseling, Beck, & Shapiro, 1994; Liu et al., 2006). The aforementioned literature shows the exclusion and discrimination towards people living with AIDS not only are these high-risk groups impeded in the course of the medical treatment, but the medical personnel s professionalism is affected. Still, even though many studies investigated the influence sigma has on both people living with AIDS and the medical staff members, few focused on the role HIV/AIDS consultation forums play in the shadow of stigma. Within the atmosphere of layered stigmatization, what kinds of users are attracted to the HIV/AIDS forums? This is the second issue discussed in the current study through discourse analysis. 2.2 Functions of the Online Medical Forums Along with the emergence of online medical forums, their functions have considerably called the attention of the academic scholars. The following consists of its three major functions: (1) perceived anonymous, (2) exchange of medical information and patient autonomy, and (3) social support and disease prevention Anonymous Participation As previously discussed, texts are used to speak up in the Internet; therefore, the participants are not required to reveal their appearance or voice with recognizable identifiability. Thus, usernames in any form may be adopted, even if it is the name of a well-known contemporary celebrity or Dr. Ko Wen-je as the moderator of an official 7

22 medical forum. In this sense, it is nearly impossible for the Internet users to determine whether the responder is Ko, Wen-jen himself, his double (i.e. a ghostwriter or the physician on duty), or even an Internet hacker. This means that the true identity and the relevant personal information of the author cannot be revealed from the username. Even so, we still hope to learn through the analysis whether any relevant characteristics can be traced from the usernames selected by the users. The anonymity of the Internet is one of the main reasons why users are drawn to the online medical forums (Hwang et al., 2010). Although the term anonymity is associated to no name or alias, we regard its central concept as non-presentation of identifiable personal image or voice instead of alias. Participation on the Internet is mainly text-based, which does not reveal the participant s voice and appearance which are the most identifiable features; therefore, it complies with the so called perceived anonymity defined by Hite, Voelker, & Robertson (2014: 26), that is, the extent to which individuals perceive that their personal identity is unknown to others or that they are unidentifiable as an individual. Tsikerdekis (2013) argued that the higher the degree of anonymity constructed in a context, the higher of perceived anonymity felt by the individuals. It is also found in several experiments that the higher the perceived anonymity is, the more likely the participants are willing to reveal what is actually in their mind (Spooner, Bishop, & Parr, 1997; Podsakoff, MacKenzie, Lee, & Podsakoff, 2003; Warner, Appenzeller, & Grieger, 2011; Das & Faxvaag, 2014). The anonymity of the online medical interaction increases the participants willingness to disclose sensitive or intimate health-related issues that are usually unspeakable in the face-to-face clinical consultations, such as the frequency of sexual activity, sexual partner, concerns, desirable medical treatments, etc. (Macdowall et al., 2010; Mevissen et al., 2012). Furthermore, Im, Lee, Chee, Stuifbergen, and emapa Research Team s (2007) study pointed out that a high degree of anonymity and confidentiality is also 8

23 required by users of cancer medical forums. All the users from Im et al. s study adopted the alias after registered at the website, and only a few registered users can reach to the members postings. Despite multiple protection mechanisms, most of the users, when discussing safeguarding related issues, still emphasized the importance of the members anonymity and the protection of the users real identities on this cancer support forum, hoping to ward off the possibility for non-members access to the discussions. This shows the equal importance of anonymity in the forums for users of different medial themes Information Exchange & Patient Autonomy The diversity, convenience and interactive consultations of the Internet have attracted patients, the general public and the medical professionals of different fields to exchange information or seek for advice (Richardson, 2001; Badia, Grau, Sánchez, & Bernardo, 2009; Nielsen et al., 2013; Das & Faxvaag, 2014). Some research also indicated that the main reason why the public uses online medical resources is to seek for further medical knowledge (Bert et al., 2013). The demand for this information also affects the users willingness to participate in the forums (Das & Faxvaag, 2014). The survey-questionnaire conducted by Diaz et al. (2002) found that more than half of the 512 patients used Internet to search for medical information of their need; 60% believed that the information from the Internet is as good as or even better than the information provided by the doctors. As shown in a doctor-targeted survey, doctors from either hospitals or clinics agreed that Internet allowed frequent interactions between doctor and patients; more than 40% of the doctors in this survey believed that the primary advantage of the Internet is to help the patients to understand the diseases, while almost one-third of the doctors were willing to recommend online medical resources to the patients. Many hospital doctors would also cooperate with specific medical websites 9

24 (Mira Solves, Llinás Santacreu, Lorenzo Martínez, & Aibar Remón, 2009), which showed the key role of the Internet in acquisition of medical information (Braverman & Samsonov, 2011; Widemalm & Hjärthag, 2015). Convenient medical information acquisition strengthens the patients autonomy. According to the medical website MedicineNet.com 4, the level of the patients autonomy depends on whether the patients can make decisions for their healthcare without being influenced by the caregivers. Grau et al. (2013) believed that through Information and Communication Technologies, the public will no longer be restricted by the unequal doctor-patient relationship as they can collect and compile online knowledge and opinions by themselves and decide for their health conditions, which fortifies their self-caring ability (Badia et al., 2009) and further facilitates the Internet users patient autonomy Social Support & Disease Prevention In addition to the rich medical information, the anonymous interaction of the Internet (i.e. the masking of the participants identifiable characteristics) provides a secret protective area as well as the functions of social support and disease prevention for the vulnerable groups. Many support groups provide both physiological and psychological assistances for alcohol addicts, drug addicts, victims of violence, and patients of all sorts of diseases through online chatrooms, where people who need help are no longer restricted by time, space and identity as they can express their emotions with comfort (Badia et al., 2009; Das & Faxvaag, 2014) and avert any kind of criticism or discrimination from the real world (Frisch & Peirano, 2011). For instance, Lin and Tsai (2013) found that Taiwanese young cancer patients expressed their loss and bitterness of suffering from cancer at young age through online forum (e.g. I was only 4 (Retrieved on: Dec. 20 th, 2015) 10

25 27 years old ) and encouraged other patients to fight against the disease via their postings. Also, there are more and more official or non-official medical communities that gather patients, website administrators and medical professionals together so as to guide and assist the patients or their families to manage their health conditions (Grau et al., 2013) or to offer the function of peer modeling (McAlister, Perry & Parcel, 2008). For instance, in Ko s (2011) study, male homosexuals were trained to become the popular opinion leader of homosexual online communities in order to promote HIV/AIDS information through online platforms. The results showed that with the opinion leaders engagement, there was a significant increase of the dissemination of HIV/AIDS related information, the anonymous HIV screening rates, and condom use rates during sexual intercourse with cyber acquaintances. As pointed out in Ko s conclusion, homosexual online community and opinion leaders can become the key channels for HIV/AIDS prevention and control among the male homosexual groups run by the government or relevant authorities in the future. Also, this strategy was suggested to be implemented over other health communities. Despite the efforts many scholars have made to explore the functions of online medical forums, seldom are the functions of the HIV/AIDS forums deliberated in the previous research. As a result, we look into the inquiries of a famous HIV/AIDS forum in hopes of disclosing the major functions of the online HIV/AIDS forums. Also, is there a similar or different function of richness and diversity of online medical forums with distinctive stigmatization levels (i.e. cancer, TB, AIDS, etc.)? This is second topic to be discussed in the present study. 2.3 Online Usernames Goffman (1963, p.4) divided stigmatized targets into two types: the discredited and the discreditable. The former refers to the one that has an identity or physical 11

26 condition prone to be detected, such as blind people, AIDS patients with red rash (physical defects), black people (race), etc. The latter refers to the one with distinctive characteristics that may not be detected immediately but may possibly be aware of, such as the identity of homosexual, patients with mental disorders, prostitutes, and so on. For the discreditable, the key to stigma management is the control of the identity information, such as covering or concealing (Pachankis, 2007). Goffman further mentioned the approaches of identity information control (p ), including hiding the signifiers of stigma (e.g. renaming or anonymity), dividing the world into the big group where the discreditable remain silent and the reliable small group (e.g. the online support groups) where the discreditable can express themselves without holding back, or keeping themselves in distance, and so on. The anonymous operation within the Internet world meets the security control of the personal identity information of the discreditable described by Goffman, allowing people who need medical information or social support to seek for help among the online medical communities with their privacy being protected. The username mechanism with alias also permits rich and diverse username patterns. To learn whether the usernames are displayed in different patterns or preferences based on distinctive types of medical needs, the following literature consists of the review of two topics: the linguistic construction and strategy of usernames. In the Western countries, usernames are also known as handles, screen names, nicks, and so on (Cornetto & Nowak, 2006). Owing to the anonymous and text-based features (Ziegler, 2004) of the Internet world, only the information intended to be released by the users is disclosed to others, regardless of the authenticity of the information, which has provided the users with a considerable freedom to create their usernames (Bechar-Israeli, 1995). Bechar-Israeli (1995) analyzed two hundred and sixty nicknames of the online chatting rooms, and categorized them into seven main 12

27 types: (1) real names, (2) names related to the user s own characteristics (e.g. tallman ), (3) names related to the nature of medium and technology (e.g. irc ), (4) names of animals, plants or objects (e.g. froggy ), (5) sound and word games (e.g. tamtam ), (6) celebrity s names or names from literature films and fairy tales (e.g. Elvis or Hagolem ), and (7) provocative or sex-related names (e.g. sexygirl ). The usernames adopted in the virtual world are generally quite different from the users real world names, except for a few users who use their real names on the Internet (Bechar-Israeli, 1995). Most of the users would use alias because the real names may also create a sense of falsification (Jacobson, 1996). For example, people may still question the authenticity of the username when a user chooses a name used in the real world (e.g. Jay Chou or Michael Jackson ). Furthermore, in order to avoid any differential treatment caused by the particular marks connoted by the usernames, the users would also develop a special naming strategy (Crenshaw & Nardi, 2014). For instance, in the past, female writers would adopt masculine pen names, hoping that the others would examine their works without prejudice (Palme & Berglund, 2002). Also, it is found that players with female voice in online games were prone to receive negative comments of sexual discrimination or even experience harassment compared to those with male voice (Kuznekoff & Rose, 2013), which may be the reason why only few online users chose usernames with obvious sex signifiers (Cornetto & Nowak, 2006). Lastly, username is also a way of selfpresentation by the online users (Bechar-Israeli, 1995; Ziegler, 2004; Androutsopoulos, 2006; Cornetto & Nowak, 2006;Crenshaw & Nardi, 2014). The username has become the only identification tool for the online users to recognize each other (Bechar-Israeli, 1995; Cornetto & Nowak, 2006; Hagström, 2008 & 2012) and to present themselves, including their physical appearances (e.g. the height and weight), personalities, experiences, preferences, interests, creativity, etc. (Bechar-Israeli, 1995; Ziegler, 2004; 13

28 Cornetto & Nowak, 2006; Androutsopoulos, 2006; Crenshaw & Nardi, 2014) since no features other than the written texts of the users can be identified or displayed through the online communication. As observed by the above scholars, the username selection is a strategy for the users not only to present but also to protect themselves. Although some studies have been conducted to examine the usernames of IRC users or online game players and the naming mechanism in several online contexts, rarely are those of the HIV/AIDS forums paid attention to. Thus, we hope to further understand whether there are linguistic patterns or strategies of username selection developed in the online HIV/AIDS forums due to the menace of stigma. And how can these patterns reflect some detectable sociopsychological traits of the users? These issues are discussed by both the first and second research questions of the present study. 14

29 CHAPTER THREE METHODOLOGY 3.1 Data Collection The postings analyzed in the present study were collected from the Q&A section of a popular Taiwanese HIV/AIDS forum, AIDSq (alias). Based on the information provided on AIDSq, this forum was the first non-profit supporting organization in Taiwan established by AIDS patients, people living with AIDS (PLWA), patients family members and human right activists in The goal of the website is to promote the rights of PLWA, working as the communication bridge among people living AIDS, the public and the authorities. Until September 2014, there were in total 1892 AIDSrelated shared experience or inquiries (e.g. Excerpt 1) posted by the users on the Q&A section of AIDSq. All postings were replied by the well-trained volunteers of the AIDSq. Different from the other medical forums, users on AIDSq have to browse the AIDS Basic Knowledge page and answer 5 common AIDS-related questions before they can actually enter into the Q&A section and raise a question. When leaving a posting, only nicknames (i.e. the address term preferred by the user), topic of the posting, and content are required, whereas all the other spaces (e.g. emojis, address, and personal websites, etc.) are optional. Besides, the users are free to decide the format, length, and theme of the posting. We randomly gathered and carefully scrutinized 82 AIDS-related postings from AIDSq, dating from July 2013 to September All the postings on AIDSq are publicly open. Considering that AIDS is still a sensitive topic in the Chinese society and that we do not wish to cause any discomfort to the users on AIDSq, the diction and sentence patterns in the postings irrelevant to the current discussion are all subtly modified without changing its original meaning (e.g. paraphrasing or using synonyms) when presented in the present research. Even so, the original texts and arrangement of 15

30 the inquiries were adopted during the analysis in order not to jeopardize the interpretation of the postings. Excerpt 1 (YL1; translation from Chinese to English) The Original Format of the Postings with Altered Wording/Sentence Patterns No Topic Please Help Me Time 2013/7/15 12:05:12 Hi. I went to a shop that provided services like erotic massage. At first, the lady massaged my back. Then she turned me over, and all she wore was her panty. She gave me a hand job (no condom) with lotion provided by the shop, and she caught my semen with the other hand. I felt a bit of uncomfortable in the end. It s probably because I was still very sensitive after ejaculation, and the lady held my glans. We didn t have oral, anal sex or intercourse. But the lady licked my chest, and I also kissed and licked her boobs for a while. The whole hand job was about 20 minutes. I m on the After that I took a shower in the bathroom and didn t feel any tingling edge of (so there s probably no wounds). I didn t think the lady had any breaking bleeding wounds, either. down On the 4 th week I had a rapid HIV test, on the 5 th week 4 th Generation ELISA, 6 th and 7 th weeks rapid HIV tests, and 8 th week AP and another rapid HIV test. All the results were negative. But then I started to worry about something else. Like Are the needles used in the private medical laboratory clean? I always pay attention to whether they use a new needle. But even if the nurse take out a new one right in front of me, I would worry about whether that s a recycled needle. And I ve been thinking about this. So now I am not sure what is real and what is not. Am I thinking too much or that lab actually used a recycled needle? 16

31 The lab looked quite old. And the examiner marked my skin with his nail when he took my blood. Although I know this is not s transmission route, I still felt sick when he did that. And I am still worried. June 27th was the National HIV Testing Day, and I got two mosquito bites that day at the lab, which worries me. And what if the mosquito had bitten someone who had AIDS before it bit me? Even though I know mosquito is not one of the transmission routes, I am still very worried. I got fever and sore muscles on the 5 th and 6 th weeks. Although the doctor said it was type A flu, I still worry that this is the primary symptoms of AIDS, for this is the 9 th week and my throat is still uncomfortable. Everything mentioned above: hand job without a condom, sucking and licking the chest (don t think there is any body fluid secreted, but I m not sure if it was clean or if there s any fluid left by others), unclean needle, and even the mosquito bites What should I do? Am I likely to be infected? Should I get another test? Excerpt 1.1 (YL1; the original Chinese text) The Original Format of the Postings with Altered Wording/Sentence Patterns 編號 1365 主題請救我發表時間 2013/7/15 12:05:12 回文志工您好我約兩個月前去了半套店消費一開始小姐幫我做簡單的背部按摩之後小姐把我轉到正面, 她也把衣服脫到只剩下內褲我快崩潰了然後用店家的潤滑油幫我無套手交, 快射精時小姐用另外一隻手接住最後我覺得有點不舒服, 可能是因為剛結束比較敏感, 小姐又握住龜頭部分的關係 17

32 我們沒有口交 肛交或性交, 可是小姐有舔我胸部, 我也有親舔小姐的胸部一下子整個手交過程大概 20 分鐘後來我去浴室沖洗沒有刺痛感 ( 所以應該沒有傷口 ), 也沒發現小姐有流血的傷口我第四周做了快篩 第五周到醫院做第四代抽血檢查 第六周和第七周快篩, 快第八周做了 AP 和快篩, 得到的結果皆為陰性但是接著我又開始擔心其他問題像是我開始擔心我之前去的民營檢驗所針頭乾不乾淨, 我每次都會注意檢驗所有沒有使用新的針頭但就算護士在我面前拿新的出來, 我還是會擔心那是不是回收再利用的針頭, 我最近一直在想這件事導致我開始不確定到底什麼是真的什麼是假的了, 究竟是我想太多還是檢驗所真的是用舊的針頭呢? 那個檢驗所看起來很久了而且檢驗師幫我抽血的時候有用指甲在我皮膚上做記號, 雖然我知道指甲畫痕不是感染途徑, 這個動作還是讓我非常的反感然後我還是很擔心... 我擔心第八周 6 月 27 號是全民篩檢日, 而且我在檢驗所被蚊子叮咬兩個包我擔心要是蚊子先叮過前面的感染者, 然後再來叮我的話怎麼辦? 就算我知道蚊子不是傳染途徑還是很擔心我在第五周到第六周有發燒跟身體痠痛, 雖然後來醫生說應該是 A 型流感可是我還是很擔心這是愛滋初期的症狀, 因為現在都快第九周了我喉嚨還是很不舒服上面提到的這些行為 : 被無套打手槍 吸舔胸部 ( 無感到胸部有分泌液體, 但不確定是否乾淨或有他人液體殘留 ) 針頭不乾淨 甚至是蚊子叮咬 請問我該怎麼辦? 我有可能被感染嗎? 是不是應該要再去做確認檢驗呢? On the other hand, to examine the postings more efficiently and to display them more systematically, we divided the content of the postings according to the punctuation. 18

33 In Excerpt 1 and 2, the formats of the subtly modified original posting and one with altered format are shown. For instance, the number of lines were added in the modified version. Also, the arrows were added in order to mark the parts of content that were discussed in the present research. Excerpt 2 (YL1; translation from Chinese to English) Modified Format with Altered Wording/Sentence Patterns Line Content 01 Hi. 02 I went to a shop that provided services like erotic massage. 03 At first, the lady massaged my back. 04 Then she turned me over, and all she wore was her panty. 05 She gave me a hand job (no condom) with lotion provided by the shop, and she caught my semen with the other hand. 06 I felt a bit of uncomfortable in the end. It s probably because I was still very sensitive after ejaculation, and the lady held my glans. 07 We didn t have oral, anal sex or intercourse. 08 But the lady licked my chest, and I also kissed and licked her boobs for a while. 09 The whole hand job was about 20 minutes. After that I took a shower in the bathroom and didn t feel any tingling 10 (so there s probably no wounds). I didn t think the lady had any bleeding wounds, either. 11 On the 4 th week I had a rapid HIV test, on the 5 th week 4 th Generation ELISA, 6 th and 7 th weeks rapid HIV tests, 12 and 8 th week AP and another rapid HIV test. All the results were negative. 13 But then I started to worry about something else. 14 Like Are the needles used in the private medical laboratory clean? 15 I always pay attention to whether they use a new needle. 16 But even if the nurse take out a new one right in front of me, I would worry about whether that s a recycled needle. 17 And I ve been thinking about this. 18 So now I am not sure what is real and what is not. 19 Am I thinking too much or that lab actually used a recycled needle? 19

34 20 The lab looked quite old. 21 And the examiner marked my skin with his nail when he took my blood. 22 Although I know this is not s transmission route, I still felt sick when he did that. 23 And I am still worried. 24 June 27th was the National HIV Testing Day, and I got two mosquito bites that day at the lab, which worries me. 25 And what if the mosquito had bitten someone who had AIDS before it bit me? 26 Even though I know mosquito is not one of the transmission routes, I am still very worried. 27 I got fever and sore muscles on the 5 th and 6 th weeks. 28 Although the doctor said it was type A flu, I still worry that this is the primary symptoms of AIDS, 29 for this is the 9 th week and my throat is still uncomfortable. 30 Everything mentioned above: hand job without a condom, sucking and licking the chest 31 (don t think there is any body fluid secreted, but I m not sure if it was clean or if there s any fluid left by others), 32 unclean needle, and even the mosquito bites 33 What should I do? [A1: Direct Inquiry about Risk of HIV Infection or Request for Advice] 34 Am I likely to be infected? [A1: Direct Inquiry about Risk of HIV Infection or Request for Advice] 35 Should I get another test? [A3: Confirmation of HIV Test Results] 3.2 Data Analysis In the present research, we only analyzed the first postings of the users, which is the beginning posting in the inquiry, regardless of the following replies by the forum s advice-givers, other users, or by the same user s subsequent postings. These postings were categorized according to the purpose of the postings, transmission routes mentioned in the content, usernames, and the gender marks detected in usernames 20

35 and content of the postings, and were further compared with data from other four medical forums (c.f ) Purposes of the Postings The purposes of the postings were divided into three categories: inquiries about risk of HIV Infection, advice on Examinations, psychological consultation or other assistance. A. Inquiries about Risk of HIV Infection includes: A1. Direct Inquiry about Risk of HIV Infection or Request for Advice Usually the users will provide a detailed description of the possible transmission routes, including the process, temporal sequence, and events that may lead to HIV infection, or even symptoms that resemble those of HIV infection at initial stage. These descriptions would be followed by a direct inquiry or request for advice (i.e. 能給我些意見嗎?/Can you give me some suggestions?, 我該怎麼辦?/What should I do? or 這樣是否要去檢查?/Should I take an HIV test? ), which would often appear in the middle or at the end of the posting. For instance, in Excerpt 2, the user first described the process of the sexual intercourse (Lines 2-10), the time and details of the medical examinations (Lines 11-12), etc., and then he pointed out the part that may be the cause of infection (Lines 14-20, 24-25, 30-32), followed by his concerns about exhibiting symptoms that were similar to primary HIV infection. In end the of the posting (Lines 33-34), the user raised two questions, 請問我該怎麼辦?/What should I do? [A1- Direct Request for Advice], 我有可能被感染嗎?/Am I going to be infected? [A1- Direct Inquiry about Risk of HIV Infection] to express his intention of receiving advice directly. 21