HIV/AIDS stigmatization on Chinese The internet discussion forumss ...

Running head: STIGMATIZE HIV/AIDS ON THE INTERNET?

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HIV/AIDS stigmatization on Chinese internet discussion forums: A content analysis approach

STIGMATIZE HIV/AIDS ON THE THE INTERNET?

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Abstract This study examines discussion of HIV/AIDS on three popular internet public forums in China asking to what extent participants in online forums are likely to make stigmatizing remarks about HIV/AIDS and people who have HIV/AIDS (PLHA). Is it easier to stigmatize conditions like HIV/AIDS online than in face-to-face communication? By employing Link and Phelan’s conceptualization of stigma and using content analysis of messages posted online, this study shows that messages posted about HIV/AIDS in these forums tend to be negative and show stigma and lack of empathy. Implications of this tendency to feel free to stigmatize online are discussed.

Keywords: HIV/AIDS stigmatization, internet discussion forums in China, Interaction on The internet Forums


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HIV/AIDS stigma in Chinese internet forums: A content analysis approach Introduction It is projected that there will be 1.2 million people living with HIV/AIDS (PLHA) by the end of 2015, according to China’s state-run news source (China Daily, 2010). Given this reality, it is crucial to encourage awareness of HIV/AIDS prevention information, diminish the general population’s misconceptions about HIV/AIDS, and finally build up a more harmonious environment to help PLHA cope with this severe disease more positively. The internet qualifies as an important public health information resource readily available for Chinese people. Studies show that people have been using the internet to meet their healthrelated needs in various ways: seeking medical news, looking for information about medical services, and searching for information about drugs and medications (Brodie et al. 2000; Cline & Haynes, 2001; Diaz, Griffith, Reinert, Friedmann, & Moulton, 2002). In addition to seeking health-related information or advice on these websites, people also use the internet to seek social support, make social connection, and look for advocacy (Broom, 2005; Reeves, 2001; Tanis, 2008). Especially for people who are in sensitive situations, online support groups provide a safe environment for them to talk about their experiences and concerns, which would not occur in a face-to-face situation (Broom, 2005). Numerous studies have shown favorable health outcomes for people who use the internet as a medical information resource and emotional support. However, Tanis (2008) suggested that the internet can also play an opposite role in shaping public attitudes toward some diseases. The negative impacts of the internet on health related knowledge, attitudes, and behaviors are understudied. A preliminary look at how HIV/AIDS is talked about on internet forums in China suggests that this might be one such site where negative messages about HIV/AIDS are being


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exchanged. Internet forums have been described as being anonymous and requiring low accountability for posting content. The thought is that people hiding behind the shield of anonymity might say brutally honest things to one another unsympathetically blaming victims of AIDS for their condition. This study takes the first step to examine the internet’s potential negative impact on the general populations’ perceptions about HIV/AIDS and PLHA. HIV/AIDS stigma in China HIV/AIDS is stigmatized because the popular belief is that it results from risky sexual behaviors. This prevalent misconception about HIV/AIDS is also part of the stigma about this disease. Many studies have been done to examine the stigma and discrimination borne by PLHA (Deacon, Stephney, & Prosalendis, 2005; Herek & Capitanio, 1999; Herek, Capitanio, Widaman, 2003; Parker & Aggleton, 2003). HIV/AIDS related stigmatization includes prejudice, discounting, discrediting, and discrimination targeting people who are perceived to have HIV/AIDS and those individuals, groups, and communities with which PLHA are associated (Lapinski & Nwulu, 2008). HIV/AIDS is depicted as “horrifying”, PLHA are identified as foreign aggressors, criminals, and even enemies of the state (Smith, 2007), and they are believed to have unfavorable personalities (Parker & Aggleton, 2003). As a worldwide problem, HIV/AIDS has severe magnitude and prompts researchers to try to understand how the general population describes HIV/AIDS and PLHA as well as the experience of stigma for PLHA. According to Herek and Capitanio (1997), although people show more “comfortableness” towards PLHA within various hypothetical situations than during the early 1990’s, they continue to feel embarrassed to be around with PLHA and believe that HIV can be transmitted via casual social contact (i.e. sharing drinking glasses, and wearing the same sweater). Additionally, Herek and Capitanio (1997) suggest that people intentionally associate


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HIV with certain groups, such as gay, bisexual men, and injecting drug users. HIV/AIDS stigmatization potentially undermines the well-being of PLHA, as well as HIV/AIDS intervention campaigns. The key danger of HIV/AIDS stigmatization is impeding PLHA from seeking health information and help and eventually leading them to sooner death. PLHA always fear the social stigmatization that is related to disclosing health status to health caregivers and the possibility that people in the same community seeing them go to the clinic will suspect that they are infected with HIV and even isolate them (Chesney & Smith, 1999; Derlaga, Winstead, Greene, Serovich, & Elwood, 2002). HIV-related stigmatization and discrimination also hinders HIV/AIDS intervention and prevention (Lieber et al., 2006; Ndiaye, 2007), because PLHA who bear stigmatization tend to be reluctant in seeking treatment and support (UNAIDS, 2002) and people who stigmatize PLHA may not know about available intervention and prevention campaigns because of their preexisting negative stereotypes about HIV/AIDS. Although systematic research on HIV/AIDS stigmatization in China is scarce, various HIV/AIDS stigmatization is documented. For example, vegetables grown by PLHA cannot be sold in markets, children from families with a PLHA have been barred from school, and persons who are suspected to have HIV have been denied health care service (Lieber et al. 2006). HIV/AIDS in China is linked to high risk and questionable behaviors. Lieber et al. (2006) found that HIV/AIDS and PLHA are always automatically related to immoral behaviors, such as unprotected sex and shared drug injection, and some “discredited” careers, like prostitutes and commercial sex workers. Because of cultural restraints, Chinese people consider HIV/AIDS as a taboo subject or shameful to talk about. Even so, it is difficult to detect HIV/AIDS stigmatization within face-to-


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face communication. Therefore, the current study proposes to investigate discussion of HIV in the context of online discussion forums, where people are not able to recognize others’ identification, and feel safer to express their real attitudes towards HIV/AIDS and PLHA. Interaction among The internet discussion forums users An internet forum is an online discussion group which follows a main topic. Internet forums facilitate information exchange, as well as empower non-elite individuals to become part of the global network (Desouza & Dutta, 2008). Different from traditional face-to-face (FtF) communication, the dynamic of computer-mediated communication has been demonstrated to eliminate seemingly extraneous aspects of FtF communication (Thomas, 2002). The absence of verbal cues and associated depersonalizing communication enable a more egalitarian mode of communication (Willis, 1991). In addition, rather than passively accepting messages, the internet users actively get involved in discussions and verbalize their real opinions freely. Even introverted people find it easier to express themselves in these depersonalized forums (Straus & McGrath, 1994). Exploring HIV/AIDS stigmatization on internet discussion forums presents a clearer insight to stigmatization of HIV/AIDS and PLHA, which are usually concealed in the FtF context. Interactions among online forum participants provoke more interest toward specific issues and further motivate participants to ponder those issues and express their attitudes (Jeong, 2003). Theoretical Framework Stigma, originally defined by Goffman (1963, p. 3), as a “deeply discrediting attribute” that reduces the bearer “from a whole and usual person to a tainted, discounted one”, is believed to separate individuals with such attributes from people without them, and devalue individuals’ social status. Following Goffman’s definition of stigma, Link and Phelan (2001) conceptualized


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stigma as a process, instead of a single social construct that is confounded with prejudice and discrimination. Their stigma conceptualization includes five components—labeling, negative attribution, separation, status loss, and power. Link and Phelan proposes that stigma is generated when all of the five components converge. According to Link and Phelan’s conceptualization, labeling, the first step of stigma, plays a central role in selecting human differences, and is conducted through noting the attributes that differ from social norms. Negative attribution (stereotyping) highlighted in the original work of Goffman (1963) is the central content factor of stigma (Link & Phelan, 2001). However, instead of defining negative attribution explicitly, Link and Phelan propose that a labeling links a person to a set of unfavorable characteristics. Many scholars (Crocker et al. 1998, Fiske, 1998; Link & Phelan, 1989) believe that the connection between labels and stereotypes is a major aspect of the psychological study of stigma. To explicitly clarify the distinction between “labeling” and “negative attribution”, the current study defines labeling as a process that assigns “marks” to stigmatized situations, and negative attribution as connecting those “marks” with the people living with the stigmatized situations. “Separating” happens after labeling and stereotyping. People who stigmatize others believe that stigmatized individuals are a “menace” and an “abnormity” to “us”. The first two steps—labeling and stereotyping—make people who stigmatize others believe that stigmatized individuals are fundamentally different from those who don’t share the stereotype (Link & Phelan, 2001). The fourth component in this conceptualization is status loss, which is the outcome of the first three components. It is believed that when stigmatized individuals are labeled, linked to undesirable characteristics, and set apart, a natural outcome is the experience of being excluded and rejected. Consistent with this rationale, stigmatized groups are devalued with a disadvantaged profile of life changes in


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income, education, housing status, medical treatment, and health (Druss, Bradford, Rosenheck, Radford & Krumholz. 2000; Link, 1987). Link and Phelan also explain that stigma is largely dependent on social, economic, and political power. Smith (2007a) places stigma in the context of communication, by incorporating “responsibility” (i.e. blaming, controllability) into stigma conceptualization. Responsibility is the belief that it was the stigmatized individuals’ fault (e.g., immoral or high health risk behaviors) that caused them to be stigmatized by others (Smith, 2007a). Responsibility is believed to play an important role in stigmatization, because communities punish those who choose immoral beliefs, attitudes, or actions more heavily than those who were involuntary or forced to behave immorally (Smith, 2007a). Responsibility is also related with how much control stigmatized individuals have in eliminating the stigmatized situation (Smith, 2007a; Deaux, Reid, Mizrahi, & Ethier, 1995; Frable, 1993). If people are thought to be responsible for carrying on HIV/AIDS, it follows that other people are likely to assign blame to them for the condition and less likely to be sympathetic for difficulties that PLHA experience. HIV/AIDS and PLHA carry stigma based on several reasons including the general population’s limited knowledge of HIV, lack of treatment and fears relating to illness and death, and associations with illicit drugs and injecting drug use. Moreover, religious and moral beliefs lead people to believe that having HIV/AIDS results from immorality (e.g., promiscuity) that deserves punishment (Brown, Macintyre, & Trujillo, 2003; Herek & Capitanio, 1998; Herek, 1999; Smith, 2007b). The theoretical framework used in this paper is an extension of Link and Phelan’s fivefactor stigma model, which incorporates Smith’s concept of responsibility/blame. Three research questions are warranted below:


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RQ1. In the internet discussion forums, how are HIV/AIDS and people living with HIV/AIDS depicted in the main threads? RQ2. Among all variables proposed in the extended theory explained above, which are more identified in forums? RQ3. How do thread posters interact with response posters? Method Sampling This study attempts to examine a representative sample of internet discussion forums in China. First three online communities among the top 50 communities were selected based on the amount of registered users (China Social Network Research Report, 2009). Three public comprehensive internet communities were selected: Tianya online community, Sina online community, and 163 online community. These three websites were selected because they were established around the same time—the beginning of 21rst century and are leading online communities in China and have the largest number of topic categories (China Social Network Research Report, 2009). HIV and AIDS were used as key words in both title searching and content searching. 2197 threads were collected, among which 808 were from the Tianya community, 641 were from the 163 community and 748 were from the Sina community. Repeated titles and threads only with pictures were excluded. Within each forum, the first thread in every eight threads was selected. To keep message selection equivalent across the forums, the second round of selection using the same method was conducted within Sina and 163 communities due to their smaller amount of total threads. In total, 331 threads dealing were randomly sampled out of the 2197 HIV message threads, with 110 from the Tianya online community, 112 threads from the 163


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online community and 109 threads from the Sina online community. Unit of Analysis and Measures Each individual thread was used as unit of analysis. Threads are discourse episodes where participants in online discussion forums focus their attention on HIV/AIDS usually involving someone introducing this topic and then people responding to the comments made or narratives offered. Each thread in the sample was coded according to four parts in the code book: (1) General information provided by the thread, including posted forums (Tianya, 163, and Sina), length (in Chinese characters), thread type (news, personal story, medical treatment and recommendation, help seeking, narrative of others’ stories, and others), number of comments, HIV/AIDS-related topics (HIV/AIDS causes, policy, advancement, current HIV/AIDS situation, treatment, World AIDS Day, comparison with other infectious diseases, HIV/AIDS prevention, and HIV/AIDS education); (2) HIV/AIDS stigma: a. Labeling (a disgusting disease, foreign disease, vessel of disease, unpreventable, punishment, unprotected sex, safety of condom, death sentence, blood disaster, and terrifying), b. Negative attribution (a disgusting person, high risk taker, self-indulgent, commercial sex worker, prostitute, AIDS orphans, men who have sex with men, gay, addictive personality, self-destructive, selfish, dirty behavior, discredited, shameless, social trash, social parasite, immoral/depraved), c. separation (abnormal, keeping distance from people living with HIV/AIDS, no contact with body fluid of people living with HIV/AIDS, don’t want to shake hands, don’t touch possessions of people living with HIV/AIDS, don’t make friends with people living with HIV/AIDS, different life styles, should be separated from healthy people, we/us/our Vs. they/them/their), d. status loss (lack of will, dependence, family burden, inability for selfsupport, inability to work, inability to work), e. blaming (people living with HIV/AIDS should be


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aware that their behaviors were risky; they brought HIV/AIDS on themselves, HIV/AIDS is caused by wrong decisions, people living with HIV/AIDS deserve it, risky behaviors can be controlled, being infected with HIV/AIDS was a personal choice, people living with HIV/AIDS should have protected themselves). (3) Empathy and endorsement: whether threads express positive or negative attitudes towards HIV/AIDS or people living with HIV/AIDS, whether threads mention endorsement related to people living with HIV/AIDS (e.g., equal education, employment, and medical service, and different education, employment, and medical service). (4) Response coding: number of responses that express positive and negative emotions about HIV/AIDS and people living with HIV/AIDS, and which express sarcasm or question the credibility of threads. Coder, Training and Inter-coder Reliability Two undergraduate students served as major coders and equally coded the threads in the sample, after a training session of 10 hours. To ensure the reliability of the coding, another 30 threads were selected which were not included in the sample. Cohen’s Kappa was calculated to measure inter-coder reliability. The inter-coder reliabilities were thread type (1.00), topic (.88), length (1.00), number of comments (1.00), labeling (.95), negative attribution (.85), separation (.80), status loss (.85), blaming (.93), empathy (.92), endorsement (1.00), and response coding (.83). Results Three hundred and thirty one threads were included in the current study. 110 from the Tianya online community (33.2%), 112 were from the 163 online community (33.8%), and 109 were from the Sina online community (32.9%). The average length of these threads was 2574

Comment [MSOffice1]: the Sina By the way how do these words translate Tianya and Sina. Why do they call if the 163 community? Do you have any evidence about usage for each community which should have been reported earlier in the paper when first mentioned.


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Chinese characters, with a maximum of 18,594 Chinese characters and a minimum of 204 characters. The average number of comments was 15, with a maximum of 935 comments, and a minimum of zero comments. HIV/AIDS-related news accounted for 18.4% of entries, personal stories accounted for 2.7%, HIV/AIDS medical treatment and recommendation accounts for 4.5%, help seeking counted for 7.3%, and narratives of others’ stories accounted for 11.5%. In terms of causes of HIV/AIDS mentioned in threads, almost half of the threads cover the theme of risky sexual behaviors that cause people to get HIV/AIDS. Following this theme, blood transmission accounts for the second greatest coverage (28.1%), and only a slightly more than ten percent of threads focused on mother-baby transmission (13.6%). Among the three internet discussion forums, a general investigation on topics was taken. Threads addressing current HIV/AIDS spread situation accounts for 21.8% of the total threads, which shows that participants are concerned about the increasing spread of HIV/AIDS in the China and the possibility of becoming infected. Table 1 presents a rank ordering of the first five most frequently mentioned topics about HIV/AIDS. Three other topics—HIV/AIDS treatment advancement, HIV/AIDS treatment, and comparison between HIV/AIDS and other diseases had minimal mention, each accounting 5.7%, 5.4%, and 4.2% respectively. These frequencies show that the general population indeed pays attention to actual HIV/AIDS spread, governmental policy towards HIV/AIDS, HIV/AIDS-Day, and new HIV/AIDS intervention and education programs. Regarding the stigma-related expressions towards HIV/AIDS and PLHA, further examination was conducted for each single thread. Given the definition of labeling, researchers only looked at the marks assigned to HIV/AIDS, as a disease. In total, 170 threads labeled HIV/AIDS with a variety of negative labels. Table 2 shows a rank ordering of the most


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frequently mentioned labels for HIV/AIDS. This table shows that the three forums present similar labels towards HIV/AIDS, although the Tianya forum has a higher percentage compared to the other two forums on all the categories. From this table, it is clear that online forum participants link HIV/AIDS with sexual behaviors and suspect that the infection of HIV was highly related to unprotected sex behaviors and lack of safe sex devices, which jointly account for more than half of the stigma labeling expression towards HIV/AIDS. Negative attribution was defined as negative evaluation given by others towards PLHA. 144 threads (43.5%) were identified to include negative attribution assigned to PLHA. Consistent with the distribution of labeling expression towards HIV/AIDS, the general population tends to connect sex-related careers and behaviors to PLHA. The most mentioned negative attributions are prostitutes (19%), high risk taker (16.6%), and gay (13%). Moreover, PLHA’s personalities are always regarded as self-indulgent (10%), and immoral (10%). Table 3 shows the frequencies of the first five most mentioned negative attributions. Compared to labeling and negative attribution, separation was much less expressed on the three internet forums. Overall, 17.5% threads indicated a preference to stay from people living with HIV/AIDS. The two most mentioned categories are “keep distance” and “PLHA are different from normal people”. Previous stigma frameworks often interpret “separation” as “we” versus “they”, or “us” versus “them”, which indicates people’s intention of differentiating themselves from PLHA. Even fewer threads (10%) mentioned that PLHA experience status loss. Expressions that “PLHA are a burden to their families (5%)” and “PLHA show a lack of wills (5.5%)” are the two that were mentioned most frequently. However, sixty (18.1%) threads had expressions about blaming PLHA. Thirty four (10.3%) threads said that PLHA should have protected themselves when they took risky


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behaviors. Twenty four (7.3%) threads said that PLHA brought HIV/AIDS on themselves because of their risky behaviors, and 20 (6.0%) threads said that PLHA should have been aware of risky behaviors that can cause HIV/AIDS. Expressions of blame are shown in Table 4. In order to present the whole picture regarding description of HIV/AIDS and PLHA on internet forums, participants’ emotions and policy-related endorsement were also examined. 12.7% threads showed positive attitudes (i.e., compassion, sympathy, feel sorry) toward PLHA but more threads (10.9%) mentioned that PLHA should have equal education, employment, or medical service opportunities than threads (4.2%) that mentioned PLHA should be differentiated in terms of education, employment, and medical service opportunities. However, other threads (29.9%) expressed negative attitudes (i.e., anxiety, anger, hate) towards PLHA. These findings suggest that a large number of online forum participants hold negative emotions towards PLHA even though they are reluctant to verbalize their opposition towards equal treatments explicitly. Table 5 shows the percentage of emotions and policy-related endorsement towards PLHA. The second research question was tested using Chi-square analysis. It was necessary to collapse the six stigma variables into a single variable for analysis. If any of these variables was mentioned in a thread, that posting was coded as a 1. If the thread did not include any of these variables, it was coded 0. Chi-square analyses were conducted to examine whether these variables tend to exist simultaneously. The tendency to label stigma was associated with blame (χ2 [1] =47.66, p