Journal of Psychosocial Nursing and Mental Health Services

CNE Article 

Stigma of HIV Testing on Online HIV Forums: Self-Stigma and the Unspoken

Chia-Ling Lynn Ho, MA; Wenjing Pan, MA; Laramie D. Taylor, PhD

Abstract

Most studies examining HIV-related content in web forums have revolved around the most frequently used terms in HIV-related messages and topics, as well as the supportive nature of those messages. The current study explored barriers that prevent individuals from seeking HIV testing (specifically stigma). The current study analyzed a total of 210 threads and 319 posts, yielding 13 threads that revealed how individuals self-stigmatize and expressed how the fear of being diagnosed prevented them from seeking HIV testing. Results suggest that forums or online communities may perpetuate subculture values that deviate from mainstream values. Another important finding is that there is a lack of HIV testing information in forums for adolescents, which may contribute to the trend of young individuals engaging in risky sexual behaviors not getting tested in a timely fashion. [Journal of Psychosocial Nursing and Mental Health Services, 55(12), 34–43.]

Do you want to Participate in the CNE activity?

Abstract

Most studies examining HIV-related content in web forums have revolved around the most frequently used terms in HIV-related messages and topics, as well as the supportive nature of those messages. The current study explored barriers that prevent individuals from seeking HIV testing (specifically stigma). The current study analyzed a total of 210 threads and 319 posts, yielding 13 threads that revealed how individuals self-stigmatize and expressed how the fear of being diagnosed prevented them from seeking HIV testing. Results suggest that forums or online communities may perpetuate subculture values that deviate from mainstream values. Another important finding is that there is a lack of HIV testing information in forums for adolescents, which may contribute to the trend of young individuals engaging in risky sexual behaviors not getting tested in a timely fashion. [Journal of Psychosocial Nursing and Mental Health Services, 55(12), 34–43.]

Do you want to Participate in the CNE activity?

According to the Centers for Disease Control and Prevention (CDC; 2011, 2013), young individuals ages 13 to 29 and adults 55 and older are most likely to be infected by HIV. In 2009, young individuals accounted for 39% of new HIV infections, with the highest rate of HIV diagnosis for those between ages 20 and 24 (CDC, 2011, 2013). In 2015, the most common age at diagnosis of HIV infection was between 20 and 29, totaling 14,594 individuals (64.6 per 100,000 individuals) (CDC, 2016a). In comparison, the diagnosis rate for those younger than 13, ages 13 to 19, and ages 30 to 39 is 0.2, 8.3, and 45.7 per 100,000 individuals, respectively; for older adults, the rate is even less (CDC, 2016a).

The earlier HIV is diagnosed, the higher the chances of survival (CDC, 2016a). Receiving treatment during the early stage of infection is effective in increasing the survival rate and minimizing the risk of transmission (Berendes & Rimal, 2011; Chesney & Smith, 1999; Kinloch-de Loës et al., 1995). HIV is known to reduce expected lifespan from an average of 51.1 more years to 19.9 more years after age 25 (Lohse et al., 2007). However, most individuals who have contracted the disease are tested too late, with 62% receiving testing in acute health care settings after the disease has invasively advanced (Wortley et al., 1995). Due to delayed testing, patients with HIV miss the optimum timing necessary to control the disease (Chesney & Smith, 1999). A meta-analysis conducted by Poorolajal, Hooshmand, Mahjub, Esmailnasab, and Jenabi (2016) showed that most patients who are HIV-positive advance to AIDS within the first decade after diagnosis; those who received treatment would have survived for more than 10 years.

The stigma of HIV testing leads to late diagnosis of HIV, which in turn leads to loss of life, as treatment cannot begin until diagnosis (Joint United Nations Programme on HIV/AIDS [UNAIDS], 2007). Berendes and Rimal (2011) noted that higher levels of stigma correlated with lower levels of past HIV testing experiences. Because stigma plays a significant role in swaying individuals' decisions to seek earlier HIV testing, identifying the stigma toward receiving HIV testing is an important public health concern.

As health information is increasingly sought and available online (Fox & Duggan, 2013), understanding how HIV information is presented in various online forums, and its effect on users, becomes increasingly important. Delivering information on the public health benefits of HIV testing through social networking websites (e.g., Facebook®) has raised users' privacy concerns related to disclosure and the likelihood of becoming targets of discrimination (Witzel, Guise, Nutland, & Bourne, 2016). Other social networking websites, such as online forums, provide a high level of anonymity, which is attractive to users who feel safe to share information. Research on these online forums can provide a useful venue for learning about an HIV risk group's stigma toward HIV testing.

Tidewell and Walther (2002) showed that more intimate questions would be elicited based on computer-mediated communication, and individuals tend to disclose more personal information in online support forums (Barak & Gluck-Ofri, 2007). Individuals have also been found to be more willing to discuss personal problems online than face-to-face because they can use fake names (Kummervold et al., 2002). Although adolescents are among the highest-risk groups for contracting HIV, they often refrain from discussing the disease with others due to issues with confidentiality (Suzuki & Calzo, 2004). Therefore, online forums provide a venue for those searching for answers related to HIV testing, but may also influence whether they get tested.

Most studies examining HIV-related content in web forums have revolved around the most used terms in HIV-related messages and topics (Sung, Chiu, Chiu, & Hsiao, 2014; Suzuki & Calzo, 2004), and the supportive nature of those messages (Mo & Coulson, 2008). A dearth of literature exists in exploring the barriers that prevent individuals from seeking treatment; disclosure of these barriers can be more explicit in an online context.

The Health Belief Model (HBM) has been used to examine individuals' perceived susceptibility to HIV testing (Berendes & Rimal, 2011; Holt et al., 2012; Vermeer, Bos, Mbwambo, Kaaya, & Schaalma, 2009), perceived severity of such testing (Fuster-RuizdeApodaca et al., 2017), and perceived benefits of being tested (Fuster-RuizdeApodaca et al., 2017). The current study fills the gap in the literature by (a) using the HBM to explore why individuals refrain from receiving HIV testing, and (b) examining the perceived barriers to being tested for HIV and how stigma may become a barrier in influencing testing behavior. Content analysis was conducted to analyze the nature of stigma toward HIV testing revealed in online support forums. The next objective was to examine the level of stigma disclosure according to the forums' monitoring level and perceived openness. Lastly, the study compared the nature of stigma toward HIV testing between adult and adolescent forums.

Stigma of HIV Testing

In the United States, adolescents are at high-risk for acquiring sexually transmitted diseases (STDs) because of risky sexual behaviors. According to the Youth Risk Behavior Surveillance (CDC, 2016b), among 30.1% of high school students (grades 9 to 12) nationwide who reported having had sexual intercourse during the 3 months before the survey, 13.8% reported they did not have protected sex and 20.6% either drank alcohol or used drugs beforehand; 11.5% reported that they already had sexual intercourse with at least four people during their lifetime (CDC, 2016b). In 2015, young individuals ages 13 to 24 accounted for 39.5% of newly diagnosed HIV infections (CDC, 2016a). However, of 40% of high school students who had sexual intercourse, only 10% had ever been tested for HIV (CDC, 2017). Although adolescents rely on the internet for information (Ralph, Berglas, Schwartz, & Brindis, 2011), the information they seek online regarding STDs deviates from that gathered by the general public. Past research indicates that central themes in sexual health online forums for adolescent message boards and websites revolve around pregnancy and birth control rather than STDs (Kruse, 2013; Marques et al., 2015). Adolescents have few STD prevention resources (Gilbert, Temby, & Rogers, 2005). The lack of resources for information about HIV testing in online forums may have contributed to the rise in the number of adolescents with HIV. Prior studies have not fully explored the extent to which adolescents have access to information on HIV and HIV testing, or the character of that information when available.

HIV-related stigma is defined as “…a ‘process of devaluation’ of people either living with or associated with HIV and AIDS…. It is the unfair and unjust treatment of an individual based on his or her real or perceived HIV status” (UNAIDS, 2007, p. 9). Individuals express a lower desire to test for HIV when they have higher levels of stigma associated with HIV (Berendes & Rimal, 2011). When HIV stigma is aggravated, it becomes internalized and affects individuals' attitudes toward seeking treatment. According to Steward, Bharat, Ramakrishna, Heylen, and Ekstrand (2013), the internalization of HIV-related stigma correlates highly with postponing treatment and transforming internalized stigma into harmful feelings manifested as guilt and depression (International Center for Research on Women, STRIVE, & United Nations Development Programme, 2013). As HIV stigma becomes more widespread, it affects family members of those with HIV (Brown, Macintyre, & Trujillo, 2003), and a vicious cycle of delayed treatment emerges (Gesesew et al., 2017), resulting in lost lives.

HIV-related stigma also leads to stigmatizing of HIV testing. The most common stigma individuals have toward HIV testing is the fear that they may test positive and would therefore prefer not to confirm their status of being infected (de Wit & Adam, 2008; Golub & Gamarel, 2013; Vermeer et al., 2009). Another stigma of HIV testing is the impression that individuals being tested for HIV are promiscuous and engage in sexual behavior associated with homosexuals, prostitutes, and extramarital sex (Brooks, Etzel, Hinojos, Henry, & Perez, 2005; Brown et al., 2003). As a result, those who do not perceive themselves to be at risk do not get tested (Kellerman et al., 2002; Walsh, Horvath, Fisher, & Courtenay-Quirk, 2012). Other reasons individuals do not want to receive HIV testing include not wanting the state health department to know in case they test positive, in which the test results may be used against them (e.g., loss of employment, dismissal from school, rejection of health and life insurance) (Siegel, Levine, Brooks, & Kern, 1989). Individuals are also afraid that test results will jeopardize their relationships with loved ones (Laryea & Gien, 1993). Being fully aware of the existing stigma toward HIV, individuals are also fearful others will discriminate against them once they learn that they have been tested for HIV (Chesney & Smith, 1999).

When individuals believe that they or a loved one are affected by a disease, they often turn to online websites or support groups to seek advice (Bessière, Kiesler, Kraut, & Boneva, 2008; Townsend, Gearing, & Polyanskaya, 2012). Computer-mediated communication serves as an effective platform for exchanging ideas and encouraging individuals to discuss online stigmatized diseases (e.g., AIDS) because of the anonymity (Baelden, Van Audenhove, & Vergnani, 2012).

Despite an increasingly ubiquitous use of online media and the potential for online tools to modify individuals' attitudes, online interventions aimed at providing voluntary counseling and testing for HIV remain largely unexplored (Feldacker, Torrone, Triplette, Smith, & Leone, 2010). In addition, health care organizations are unable to fully exploit the advantages of using online tools (e.g., chat rooms, forums) in designing effective online interventions to modify health attitudes. This trend indicates the need for a thorough understanding of how online media could enhance users' tendency to discuss taboo topics such as HIV-related stigmas. Feldacker et al. (2010) found that by encouraging individuals to receive HIV testing through online tools (e.g., chat rooms, social networking websites, online forums), testing institutions can detect those with HIV at a higher rate than other testing sites. This finding sheds light on how individuals may be less stigmatized toward HIV testing because of the intervention of professionals online.

Health Belief Model

The HBM, developed by Hochbaum (1958) and Rosenstock (1974, 1991), is suitable for explaining how individuals hesitate to be tested for HIV because of the stigma of getting tested. The HBM posits that the adoption of a health-related behavior, such as receiving HIV testing, is contingent on the level of perceived susceptibility, severity of the disease, benefits, barriers, and cues to action inherent in the model. Perceived susceptibility refers to how individuals see themselves as fitting the profile for contracting HIV; perceived severity refers to the level of how seriously HIV is perceived as a treatable disease. Stigma toward HIV testing plays the role of perceived barriers that prevent individuals from receiving HIV testing.

Studies using different parts of the HBM have examined individuals' unwillingness to receive HIV testing. Most studies on HIV testing (Berendes & Rimal, 2011; Fuster-RuizdeApodaca et al., 2017; Holt et al., 2012; Vermeer et al., 2009) have addressed the slow uptake of HIV testing from the perspective of individuals' perceived susceptibility and severity of contracting HIV. Berendes and Rimal (2011) discovered that increasing the level of knowledge and self-efficacy through campaigns encouraged HIV testing uptake. A vulnerable population's (e.g., men having sex with men [MSM], those who inject drugs) lack of access to information about the likelihood of having HIV was also a cause for individuals getting tested for HIV at different times (Cooley, Wejnert, Spiller, Broz, & Paz-Bailey, 2016; Holt et al., 2012).

de Wit and Adam (2008), based on their synthesis of data from past studies on HIV testing, reported that a dearth of literature exists for examining barriers toward HIV testing in high-income countries. To provide more data in increasing the power of using the HBM to modify individuals' behavior toward being tested for HIV, more studies must be undertaken to verify the nature of psychosocial barriers to HIV testing in high-income countries. One way to do so would be through using online forums. Brooks et al. (2005) suggested that increased contact with stigmatized groups is effective in dissipating stigma. Consequently, use of online forums allows individuals concerned about their HIV status to interact with a stigmatized group and receive/provide support. A forum is defined in the current study as a virtual board where participants can interact without their having to be online at the same time (asynchronous communication) as they write their messages and read others over various periods of time ranging from days to several months. Compared to face-to-face settings, HIV forums allow users to feel supported, as if in a community, without fear of being judged when talking about HIV (Graffigna & Bosio, 2006). In addition, forums may also serve as an online platform to catalyze changes in behaviors through open HIV discussions. According to Hyde, Appleby, Weiss, Bailey, and Morgan (2005), group-level intervention, such as open discussion of HIV, works as a catalyst to change individuals' behaviors; after being informed of new ideas, they have the opportunity to claim ownership of a new understanding of themselves and their behaviors. Because forums have been shown to influence individuals' knowledge and behaviors toward HIV, it is important to examine HIV forums.

Research Questions

Individuals tend to disclose sensitive information online because of the perceived privacy of using the internet (Bull, Phibbs, Watson, & McFarlane, 2007). Therefore, through analyzing content in HIV forums of different monitoring levels on individuals' levels of stigmatization of HIV testing, the research questions were formulated as follows:

  1. What is the degree and nature of stigmatization of HIV testing in online HIV forums?

    Although it is known that increased contact with stigmatized groups is effective in removing individuals' stigma toward the disease (Brooks et al., 2005), it is expected that there will be reduced stigmatization of HIV testing if it is discussed with those who know about it. However, little is known about the level of effectiveness of intervention when individuals come in contact with professionals in online communities and how online intervention translates into action.

  2. How will individuals' stigmatization of HIV testing be different based on the levels of moderation in different forums?

    It has been known that MSM and young individuals are at high risk for HIV (CDC, 2011, 2013, 2016a,b). According to Baelden et al. (2012), anonymity serves as an effective platform for exchanging ideas, and encourages individuals to discuss stigmatized diseases (e.g., AIDS) online. Therefore, online anonymity provided by online forums will encourage more open conversations about receiving HIV testing among high-risk groups. Because adolescents are among the HIV high-risk groups, they should be paying more attention to receiving HIV testing. However, past research has not examined adolescents' attitudes toward HIV testing and its association with the high prevalence of HIV in adolescents. Most adolescents do not receive HIV treatment because they are uninformed about the nature of HIV testing and are not identified early. Most receive HIV testing by chance when being treated for sexually transmitted infections, “at the time of pregnancy, or through routine testing at correctional facilities” (Swenson, Hadley, Houck, Dance, & Brown, 2011, p. 527). Adolescents diagnosed with HIV have concerns about social stigma and access to affordable treatment (Peralta, Deeds, Hipszer, & Ghalib, 2007). Further, Bull et al. (2007) noted that adolescents are not comfortable talking with adults about HIV prevention, and that the flexibility of the internet will prompt them to seek information online.

    To tailor appropriate prevention interventions directed at adolescents, adolescents' attitudes toward HIV testing also deserve attention. To better understand adolescents' barriers to action toward HIV testing in the form of stigma, the third and fourth research questions were formulated as follows:

  3. How do adolescents' threads posted on HIV forums differ from other HIV forums for adults?

  4. How does the level of stigmatization toward HIV testing in adolescents' forums differ from that in other HIV forums?

Method

Design

The current study used quantitative content analysis. After identifying the 20 most popular HIV online forums using Google's™ keyword search, a random sample of 30 discussion threads was drawn from each forum. In addition, the first responses (up to five) to each initial post were sampled. Each post and response in the sample was analyzed by one or two trained coders for content reflecting the stigmatization of HIV testing using categories of stigmatization established in prior research. Reliability of coding was established by calculating the rate of agreement and controlling for chance agreement in the portion of the sample coded by both coders (C.L.H., W.P.).

Sample

To identify levels of stigmatization of HIV testing in online forums, the search term “HIV forum” was used. The search yielded 540 links. After filtering unqualified links, such as those for academic conference forums on HIV, outdated forums (last post date in 2012 or earlier), and those with <100 members or <30 threads, only 19 forums qualified for the purpose of the current study. For the current study, a thread refers to the main post that starts a topic for the first time; a post refers to the subsequent replies from other posters in response to the main thread. Seven forums directed at the general public and adults, as well as seven adolescent forums, were coded. However, no posts relevant to HIV or HIV testing were found in the adolescent forums. Therefore, the adolescent forums were later dropped from analysis. In each valid forum, 30 threads and the five first-order posts that replied directly to the original threads were sampled.

Measures

Based on information garnered from the forums, several variables were coded in two major categories: (a) the nature of the forum and (b) how much the threads and posts were stigmatized.

For the first category, coders had to determine the type of forum and code it according to whether it was a general health forum or HIV forum. The forum's background information and members' demographic information were then coded, which included the year and month the forum was launched; mean age of members (if available); level of monitoring (in three types: [a] counselors/trained personnel, [b] other members, and [c] a mix of counselors and members); target forum audience (e.g., adolescents, adults in general, homosexuals); category (i.e., tab) name where the HIV information was found; total number of HIV testing stigmatized threads (of 30 threads per forum); HIV testing stigmatized post number (of five posts per thread); threaders' characteristics, including gender and sexuality (i.e., male, female, gay, lesbian, bisexual, and cannot tell), HIV testing status (i.e., general poster [if unable to tell the individual's status], tested, not tested, HIV+, HIV−, and contemplator for HIV testing); and posters' characteristics, which, in addition to having inherited the classification for threaders, also identified the poster as a counselor.

For the second category, coders assessed the nature of the stigmatized content of the threads and posts based on six stigma categories derived from a synthesis of prior research: “test results used against me” (Stall et al., 1996), “poor social perception (impression of other people)” (Gilbert & Walker, 2010), “fear of discrimination if others learned that they had been tested” (Chesney & Smith, 1999; Weitz, 1989), “fear of being diagnosed” (Kellerman et al., 2002; Vermeer et al., 2009), “not wanting to face it” (Kellerman et al., 2002; Vermeer et al., 2009), “privacy concerns” (Fehrs et al., 1988), and “poor evaluation from partner” (Stall et al., 1996). Every category was mutually exclusive, meaning the same stigma would not be counted twice in two different categories. The only exception was when the threader/poster explicitly referred to several things in one thread or post.

Within the category of “test results used against me,” indicators coded included: loss of employment, dismissal from school, loss of friendship, loss of family ties, and loss of child custody (Stall et al., 1996). For “poor social perception,” negative impressions individuals have toward those tested for HIV were coded as “present” or “not present.” For “fear of discrimination if others learned that they had been tested,” there was only one indicator of how others might “mistake the testers as having the disease.” Similarly, the category of “fear of being diagnosed” was coded as “present” if posters/threaders expressed fear of being “likely to be tested positive.”

Three sub-categories were included in “privacy concerns.” The first sub-category, “access to resources,” was related to testers' concern about the likelihood of revealing their personal information when seeking information about getting an HIV test or being in the process of receiving HIV testing. The second sub-category, “access to records,” was posters' concerns that clinics or hospitals where they received their diagnosis would disclose information about their medical condition to others, including government institutions. The last sub-category, “others will tell other people,” was coded in situations when posters were concerned that their friends or someone they knew might let others know that they had received HIV testing.

In the last category, “poor evaluation from partner,” reactions specifically from spouses or significant others were coded. The coded instances included “loss of relationship” (if the partner threatens to break up, or anything that risks the relationship status), “lack of understanding” (if concerning the partner's emotions, how he/she is not forgiving), and “risk future intimacy” (if the partner refuses any form or display of intimacy/physical intimacy).

Coding and Reliability

Reliability of coding was established through agreement and controlling for chance of coding decisions by two independent coders who were trained to become well-versed with the definitions of all study categories, and practiced coding with forum threads outside the sample. A total of 210 threads and 319 posts were sampled (threads and posts from adolescents' forums were later excluded, making the total number of posts fewer than expected because some threads did not have five first-order posts that replied directly to the original threads). All posts were coded by at least one coder. In addition, all threads and posts from three forums (of seven) were coded independently by two coders for reliability analyses. Cohen's kappa was calculated for all coding categories; kappa was chosen as a measure of reliability because it reflects agreement between coders beyond what would be expected by chance, given the observed distribution of coding decisions. Kappa levels >0.70 are generally considered to reflect acceptable reliability (Viera & Garrett, 2005). Reliability levels ranged from 0.74 to 1 (Table 1).

Summary of Intercoder Reliability Tests

Table 1:

Summary of Intercoder Reliability Tests

Results

Among 210 threads and 319 posts analyzed, the content analysis yielded 13 threads in which users displayed a self-stigmatizing attitude toward HIV testing (chi-square [4] = 10.623, p < 0.05; p = 0.031). These threads (and their posts) are referred to as “stigmatized threads” and “stigmatized posts.” None of the posts in reply to the threads reflected stigmatization. Although individuals' reasons for having stigma toward HIV testing overlapped, all expressed a fear of being diagnosed as the main reason for the delay in seeking HIV testing (65%, n = 13/20 total stigma subcategories), followed by stigma against themselves for fear of losing employment or family ties (15%, n = 3), poor evaluation from partner for fear of risking their relationship (15%, n = 3), and poor social perception (5%, n = 1).

Different levels of forum moderation played a role in attitudes toward the stigmatization of HIV testing. Among seven forums, two (i.e., POZ, MedHelp®) are monitored by only counselors, one (i.e., The Body®) is monitored by counselors and members, and four (i.e., DailyStrength, eHealth Forum, HealingWell, and Healthboards™) are solely monitored by members. The level of stigmatization differed significantly based on who monitored the forum (Table 2). Examining from the angle of proportion based on the degree of monitoring, four threads maintained by counselors and community members (13.3% [n = 30]) contained more stigmatized posts than those maintained by only counselor-monitored forums, which had seven threads (11.7% [n = 60]), as well as those maintained by community members alone, which had two threads (1.7% [n = 120]).

Frequency of Stigmatized Threads Corresponding with Monitoring Levela

Table 2:

Frequency of Stigmatized Threads Corresponding with Monitoring Level

Although there was a difference between genders in asking more stigmatized HIV testing questions, with 38.5% and 30.8% of stigmatized threads posted by females and gay males, respectively (chi-square [10] = 19.46, p < 0.05; p = 0.035) (Table 3), no adolescents asked about HIV testing in the forums targeted at their age group. Therefore, the result only partially supported that there is a difference among HIV high-risk groups (only for MSM), and the third and fourth research questions yielded inconclusive results.

Frequency of Stigmatized Threads Corresponding With Gender and Sexualitya

Table 3:

Frequency of Stigmatized Threads Corresponding With Gender and Sexuality

Discussion

The current study aimed to find a pattern of information disclosure regarding stigma of HIV testing, anticipating that individuals would reveal more about themselves online because they would feel secure in an anonymous environment (Kummervold et al., 2002; Rains, 2014). Results showed that those who posted on HIV forums were seeking advice and looking for a place that would allow them to vent their anxiety regarding the likelihood of their contracting HIV. The stigma of receiving HIV testing reflected individuals' anxiety about contracting HIV. However, this research identified that the stigma of HIV testing is not as rampant as predicted, as shown by the low number of stigmatized threads and posts about HIV testing. This finding leads to the suspicion that HIV forums, although they serve to provide support for concerned individuals, may at the same time have reinforced the belief that contracting HIV or receiving HIV testing is more common online than in reality. However, whether this is true in mainstream society cannot be inferred from the forum. Due to the “spiral of silence” effect, or out of respect, individuals may not express their real opinions if they deviate from those of the majority on the forum. Ironically, there is the likelihood that those on the forum may treat the prevailing opinions on the forum as the mainstream's opinion, resulting over time in the polarization effect, which widens the gap between different beliefs about HIV testing. To investigate whether the spiral of silence toward stigmatization of HIV testing occurs on the forums, future research can survey forum members who do not respond to posts.

The low level of stigmatization toward HIV testing found in the current study, which is inconsistent with the results in offline contexts, may indicate the formation of an online subculture that is deviant from that of the mainstream, such as fostering a virtual subculture of “Johns” who openly voice support for paid sexual encounters (Blevins & Holt, 2009). Therefore, the low number of stigmatized threads and posts discussing HIV testing found in the current study may be explained in two ways. First, it may indicate that forum users are fully aware of the mainstream stigmatization of HIV testing, and self-stigmatize and continue to stifle their true opinions regarding HIV testing. Second, it may be that forum users uphold the mainstream taboo regarding HIV testing and therefore self-consciously pretend to voice support for HIV testing to fit the forum's subculture.

The current findings provided preliminary evidence demonstrating that forums or online communities may be perpetuating values that deviate from mainstream values in the real world, although these are not necessarily negative values. However, long term, disparity in the values may seed hostility between forum users and mainstream society because of the polarization of differing opinions. For example, in the case of a forum for children with autism, in which parents receive support from one another, they may over time mistakenly come to regard their own “insider's” attitude as that of the mainstream and thus antagonize the general public. The extent to which a forum perpetuates the values of a subculture can be further delved into in future research.

A second objective of the study was to examine how the level of forum monitoring may affect users' willingness to reveal their perceived stigma toward HIV testing. There is a difference in the number of stigmatized posts and threads between forums monitored solely by counselors or community members. An unexpected pattern emerged, in that users revealed their perceived stigma more in forums monitored by counselors and community members, which may be due to the counselors' neutral positions. When counselors responded to questions posted on stigmatized threads, they may have fostered an atmosphere of acceptance, as evident in the low number of stigmatized posts, and thus they may have spurred those who suspected having contracted HIV to receive HIV testing. Although support from other community members also contributed to the conducive atmosphere of the forum, those who posted questions seemed to be in need of receiving advice from professionals. The ripple effect was that individuals who created threads, when compared to those in forums without any counselors, were more willing to disclose their perceived stigma toward HIV testing. Future studies may determine whether having a professional who posts a reply to an inquiry increases online forum members' level of comfort in disclosing stigma toward HIV testing.

The current study identifies the barriers that individuals experience when trying to discuss HIV testing. Further, it verifies that among the myriad reasons of why they avoid HIV testing, the fear of having to face the reality of contracting HIV is the most common. Another important finding was the lack of HIV testing information in forums for adolescents. This finding echoes the results of Gilbert et al. (2005), in that there were few STD prevention resources, as well as the findings from Marques et al. (2015), in that there were only general sexual and contraception topics on sex education websites designed for adolescents. The current findings confirm the lack of HIV-related educational resources for adolescents, which may explain why there is a low HIV testing rate (10%) in this population (CDC, 2017). This lack of sufficient information available online to adolescents may perpetuate the taboo among this population by conveying a deeper stigma toward HIV. To remove the barriers to receiving HIV testing among adolescents, it is important to increase the visibility of HIV-related resources in adolescents' forums. To increase the number of adolescents who get tested for HIV, dispelling the stigma toward the virus and testing requires immediate attention from health institutions by promoting discussion of HIV testing in online and offline settings.

Limitations

The current findings and interpretations should be considered in view of some limitations. First, it was assumed that individuals search “HIV forum” to seek HIV testing–related assistance. Therefore, the study does not comprehensively capture all other possible search terms individuals may use to find forums. Second, because the study intended to examine stigma specifically related to HIV testing, the findings are applicable solely to HIV testing and not other HIV-related stigma. Third, only the top 20 HIV forums were sampled, and the results cannot be generalized to all existing HIV forums. Fourth, the study analyzed text input from users. Future studies should consider other factors that may potentially affect the way users respond to threads, such as forums' aesthetics, categories that classify HIV testing, and other structural aspects.

Implications and Conclusion

The current findings have important implications for mental health professionals working with individuals potentially having HIV. The findings indicate that forums monitored by counselors and community members can facilitate self-disclosure of stigma toward HIV testing. In view of this finding, health professionals may collaborate with forums to increase content that will enhance the public's awareness of HIV testing. Such collaboration will allow counselors to identify those who suspect they have HIV and offer them information and emotional support so they can receive HIV testing in a timely fashion.

The current findings also revealed sexual education forums targeting adolescents focus mainly on STD prevention, but do not offer resources for post-sexually risky behavior. In view of adolescents' high rate of risky sexual behaviors (CDC, 2016b), lack of HIV testing resources on forums may reinforce their self-stigmatizing attitude because they are not provided guidance on what to do and may hesitate to receive HIV testing for fear of being diagnosed. Health professionals may intervene to reduce stigma toward HIV testing by framing HIV testing on forums as a regular preventive checkup for those who have had sexual intercourse.

Further, to instigate open conversations about HIV testing among adolescents and dispel its associated taboo, health professionals may invite adolescents who have received HIV testing to become forum members and anonymously share their experience in response to earlier posts to strengthen camaraderie among users. Health professionals can initiate threads that invite open discussion of HIV-related topics on sexual education forums devoted to adolescents.

Hopefully, once the silence is broken regarding HIV testing among forum users, and acceptance of HIV testing spreads to the general public, individuals potenti ally having HIV can proactively seek earlier testing, thereby allowing early diagnosis and treatment of the disease.

References

  • Baelden, D., Van Audenhove, L. & Vergnani, T. (2012). Using new technologies for stimulating interpersonal communication on HIV and AIDS. Telematics and Informatics, 29, 166–176. doi:10.1016/j.tele.2011.05.002 [CrossRef]
  • Barak, A. & Gluck-Ofri, O. (2007). Degree and reciprocity of self-disclosure in online forums. CyberPsychology & Behavior, 10, 407–417. doi:10.1089/cpb.2006.9938 [CrossRef]
  • Berendes, S. & Rimal, R.N. (2011). Addressing the slow uptake of HIV testing in Malawi: The role of stigma, self-efficacy, and knowledge in the Malawi BRIDGE Project. Journal of the Association of Nurses in AIDS Care, 22, 215–228. doi:10.1016/j.jana.2010.08.005 [CrossRef]
  • Bessière, K., Kiesler, S., Kraut, R. & Boneva, B.S. (2008). Effects of internet use and social resources on changes in depression. Information, Community & Society, 11, 47–70. doi:10.1080/13691180701858851 [CrossRef]
  • Blevins, K.R. & Holt, T.J. (2009). Examining the virtual subculture of johns. Journal of Contemporary Ethnography, 38, 619–648. doi:10.1177/0891241609342239 [CrossRef]
  • Brooks, R.A., Etzel, M.A., Hinojos, E., Henry, C.L. & Perez, M. (2005). Preventing HIV among Latino and African American gay and bisexual men in a context of HIV-related stigma, discrimination, and homophobia: Perspectives of providers. AIDS Patient Care & STDs, 19, 737–744. doi:10.1089/apc.2005.19.737 [CrossRef]
  • Brown, L., Macintyre, K. & Trujillo, L. (2003). Interventions to reduce HIV/AIDS stigma: What have we learned?AIDS Education and Prevention, 15, 49–69. doi:10.1521/aeap.15.1.49.23844 [CrossRef]
  • Bull, S.S., Phibbs, S., Watson, S. & McFarlane, M. (2007). What do young adults expect when they go online? Lessons for development of an STD/HIV and pregnancy prevention website. Journal of Medical Systems, 31, 149–158. doi:10.1007/s10916-006-9050-z [CrossRef]
  • Centers for Disease Control and Prevention. (2011). HIV among youth. Retrieved from http://www.cdc.gov/hiv/risk/age/youth
  • Centers for Disease Control and Prevention. (2013). HIV among people aged 50 and over. Retrieved from http://www.cdc.gov/hiv/risk/age/olderamericans
  • Centers for Disease Control and Prevention. (2016a). Diagnoses of HIV infection in the United States and dependent areas, 2015. Retrieved from https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hivsurveillance-report-2015-vol-27.pdf
  • Centers for Disease Control and Prevention. (2016b). Sexual identity, sex of sexual contacts, and health-related behaviors among students in Grades 9–12—United States and selected sites, 2015. Retrieved from https://www.cdc.gov/mmwr/volumes/65/ss/pdfs/ss6509.pdf
  • Centers for Disease Control and Prevention. (2017). Sexual risk behaviors: HIV, STD, & teen pregnancy prevention. Retrieved from https://www.cdc.gov/healthyyouth/sexualbehaviors
  • Chesney, M.A. & Smith, A.W. (1999). Critical delays in HIV testing and care: The potential role of stigma. American Behavioral Scientist, 42, 1162–1174. doi:10.1177/00027649921954822 [CrossRef]
  • Cooley, L.A., Wejnert, C., Spiller, M.W., Broz, D. & Paz-Bailey, G. (2016). Low HIV testing among persons who inject drugs—National HIV Behavioral Surveillance, 20 US cities, 2012. Drug and Alcohol Dependence, 165, 270–274. doi:10.1016/j.drugalcdep.2016.05.024 [CrossRef]
  • de Wit, J.B. & Adam, P.C. (2008). To test or not to test: Psychosocial barriers to HIV testing in high-income countries. HIV Medicine, 9, 20–22. doi:10.1111/j.1468-1293.2008.00586.x [CrossRef]
  • Fehrs, L., Foster, L., Fox, V., Fleming, D., McAlister, R., Modesitt, S. & Conrad, R. (1988). Trial of anonymous versus confidential human immunodeficiency virus testing. Lancet, 332, 379–382. doi:10.1016/S0140-6736(88)92846-2 [CrossRef]
  • Feldacker, C., Torrone, E., Triplette, M., Smith, J.C. & Leone, P.A. (2011). Reaching and retaining high-risk HIV/AIDS clients through the Internet. Health Promotion Practice, 12, 522–528. doi:10.1177/1524839909349178 [CrossRef]
  • Fox, S. & Duggan, M. (2013). Health online 2013. Retrieved from http://www.pewinternet.org/2013/01/15/health-online-2013
  • Fuster-RuizdeApodaca, M.J., Laguia, A., Molero, F., Toledo, J., Arrillaga, A. & Jaen, A. (2017). Psychosocial determinants of HIV testing across stages of change in Spanish population: A cross-sectional national survey. BMC Public Health, 17, 234–246. doi:10.1186/s12889-017-4148-4 [CrossRef]
  • Gesesew, H.A., Gebremedhin, A.T., Demissie, T.D., Kerie, M.W., Sudhakar, M. & Mwanri, L. (2017). Significant association between perceived HIV related stigma and late presentation for HIV/AIDS care in low and middle-income countries: A systematic review and meta-analysis. PLoS One, 12, 1–16. doi:10.1371/journal.pone.0173928 [CrossRef]
  • Gilbert, L. & Walker, L. (2010). “My biggest fear was that people would reject me once they knew my status...”: Stigma as experienced by patients in an HIV/AIDS clinic in Johannesburg, South Africa. Health & Social Care in the Community, 18, 139–146. doi:10.1111/j.1365-2524.2009.00881.x [CrossRef]
  • Gilbert, L.K., Temby, J.R.E. & Rogers, S.E. (2005). Evaluating a teen STD prevention web site. Journal of Adolescent Health, 37, 236–242. doi:10.1016/j.jadohealth.2004.09.018 [CrossRef]
  • Golub, S.A. & Gamarel, K.E. (2013). The impact of anticipated HIV stigma on delays in HIV testing behaviors: Findings from a community-based sample of men who have sex with men and transgender women in New York City. AIDS Patient Care and STDs, 27, 621–627. doi:10.1089/apc.2013.0245 [CrossRef]
  • Graffigna, G. & Bosio, A.C. (2006). The influence of setting on findings produced in qualitative health research: A comparison between face-to-face and online discussion groups about HIV/AIDS. International Journal of Qualitative Methods, 5, 55–76. doi:10.1177/160940690600500307 [CrossRef]
  • Hochbaum, G.M. (1958). Public participation in medical screening programs: A socio-psychological study. Washington, DC: U.S. Department of Health, Education, and Welfare, Public Health Service, Bureau of State Services, Division of Special Health Services, Tuberculosis Program.
  • Holt, M., Rawstorne, P., Wilkinson, J., Worth, H., Bittman, M. & Kippax, S. (2012). HIV testing, gay community involvement and internet use: Social and behavioural correlates of HIV testing among Australian men who have sex with men. AIDS and Behavior, 16, 13–22. doi:10.1007/s10461-010-9872-z [CrossRef]
  • Hyde, J., Appleby, P.R., Weiss, G., Bailey, J. & Morgan, X. (2005). Group-level interventions for persons living with HIV: A catalyst for individual change. AIDS Education & Prevention, 17, 53–65. doi:10.1521/aeap.17.2.53.58699 [CrossRef]
  • International Center for Research on Women, STRIVE, & United Nations Development Programme. (2013). A global HIV stigma reduction framework adapted and implemented in five settings in India: Summary report. Retrieved from https://www.icrw.org/wp-content/uploads/2016/10/web_ICRW_STRIVE_India-stigma-framework_0.pdf
  • Joint United Nations Programme on HIV/AIDS. (2007). Reducing HIV stigma and discrimination: A critical part of national AIDS programmes. Retrieved from http://data.unaids.org/pub/report/2008/jc1521_stigma-tisation_en.pdf
  • Kellerman, S.E., Lehman, J.S., Lansky, A., Stevens, M.R., Hecht, F.M., Bindman, A.B. & Wortley, P.M. (2002). HIV testing within at-risk populations in the United States and the reasons for seeking or avoiding HIV testing. Journal of Acquired Immune Deficiency Syndromes, 31, 202–210. doi:10.1097/00126334-200210010-00011 [CrossRef]
  • Kinloch-de Loës, S., Hirschel, B.J., Hoen, B., Cooper, D.A., Tindall, B., Carr, A. & Perrin, L. (1995). A controlled trial of zidovudine in primary human immunodeficiency virus infection. New England Journal of Medicine, 333, 408–413. doi:10.1056/NEJM199508173330702 [CrossRef]
  • Kruse, J.A. (2013). The birds, the bees and the STDs: A content analysis of teenage sexual health internet message boards (Master's thesis). Retrieved from CORE Scholar. (1112)
  • Kummervold, P.E., Gammon, D., Bergvik, S., Johnsen, J.A.K., Hasvold, T. & Rosenvinge, J.H. (2002). Social support in a wired world: Use of online mental health forums in Norway. Nordic Journal of Psychiatry, 56, 59–65. doi:10.1080/08039480252803945 [CrossRef]
  • Laryea, M. & Gien, L. (1993). The impact of HIV-positive diagnosis on the individual, part 1: Stigma, rejection, and loneliness. Clinical Nursing Research, 2, 245–263. doi:10.1177/105477389300200302 [CrossRef]
  • Lohse, N., Hansen, A.B.E., Pedersen, G., Kronborg, G., Gerstoft, J., Sørensen, H.T. & Obel, N. (2007). Survival of persons with and without HIV infection in Denmark, 1995–2005. Annals of Internal Medicine, 146, 87–95. doi:10.7326/0003-4819-146-2-200701160-00003 [CrossRef]
  • Marques, S.S., Lin, J.S., Starling, M.S., Daquiz, A.G., Goldfarb, E.S., Garcia, K.C. & Constantine, N.A. (2015). Sexuality education websites for adolescents: A framework-based content analysis. Journal of Health Communication, 20, 1310–1319. doi:10.1080/10810730.2015.1018621 [CrossRef]
  • Mo, P.K. & Coulson, N.S. (2008). Exploring the communication of social support within virtual communities: A content analysis of messages posted to an online HIV/AIDS support group. CyberPsychology & Behavior, 11, 371–374. doi:10.1089/cpb.2007.0118 [CrossRef]
  • Peralta, L., Deeds, B.G., Hipszer, S. & Ghalib, K. (2007). Barriers and facilitators to adolescent HIV testing. AIDS Patient Care and STDs, 21, 400–408. doi:10.1089/apc.2006.0112 [CrossRef]
  • Poorolajal, J., Hooshmand, E., Mahjub, H., Esmailnasab, N. & Jenabi, E. (2016). Survival rate of AIDS disease and mortality in HIV-infected patients: A meta-analysis. Public Health, 139, 3–12. doi:10.1016/j.puhe.2016.05.004 [CrossRef]
  • Rains, S.A. (2014). The implications of stigma and anonymity for self-disclosure in health blogs. Health Communication, 29, 23–31. doi:10.1080/10410236.2012.714861 [CrossRef]
  • Ralph, L.J., Berglas, N.F., Schwartz, S.L. & Brindis, C.D. (2011). Finding teens in TheirSpace: Using social networking sites to connect youth to sexual health services. Sexuality Research and Social Policy, 8, 38–49. doi:10.1007/s13178-011-0043-4 [CrossRef]
  • Rosenstock, I.M. (1974). Historical origins of the health belief model. Health Education & Behavior, 2, 328–335.
  • Rosenstock, I.M. (1991). The health belief model: Explaining health behavior through expectancies. In Glanz, K., Lewis, F.M. & Rimer, B.K.Health behavior and health education: Theory, research, and practice (pp. 39–62). San Francisco, CA: Jossey-Bass.
  • Siegel, K., Levine, M.P., Brooks, C. & Kern, R. (1989). The motives of gay men for taking or not taking the HIV antibody test. Social Problems, 36, 368–383. doi:10.2307/800821 [CrossRef]
  • Stall, R., Hoff, C., Coates, T.J., Paul, J., Phillips, K.A., Ekstrand, M. & Diaz, R. (1996). Decisions to get HIV tested and to accept antiretroviral therapies among gay/bisexual men: Implications for secondary prevention efforts. Journal of Acquired Immune Deficiency Syndromes, 11, 151–160. doi:10.1097/00042560-199602010-00006 [CrossRef]
  • Steward, W.T., Bharat, S., Ramakrishna, J., Heylen, E. & Ekstrand, M.L. (2013). Stigma is associated with delays in seeking care among HIV-infected people in India. Journal of the International Association of Providers of AIDS Care, 12, 103–109. doi:10.1177/1545109711432315 [CrossRef]
  • Sung, R.-J., Chiu, C., Chiu, N.-H. & Hsiao, C.-H. (2014). Online detection of concerned HIV-related messages in web forums. AIDS Care, 26, 337–342. doi:10.1080/09540121.2013.819408 [CrossRef]
  • Suzuki, L.K. & Calzo, J.P. (2004). The search for peer advice in cyberspace: An examination of online teen bulletin boards about health and sexuality. Journal of Applied Developmental Psychology, 25, 685–698. doi:10.1016/j.appdev.2004.09.002 [CrossRef]
  • Swenson, R.R., Hadley, W.S., Houck, C.D., Dance, S.K. & Brown, L.K. (2011). Who accepts a rapid HIV antibody test? The role of race/ethnicity and HIV risk behavior among community adolescents. Journal of Adolescent Health, 48, 527–529. doi:10.1016/j.jadohealth.2010.08.013 [CrossRef]
  • Tidwell, L.C. & Walther, J.B. (2002). Computer-mediated communication effects on disclosure, impressions, and interpersonal evaluations: Getting to know one another a bit at a time. Human Communication Research, 28, 317–348. doi:10.1111/j.1468-2958.2002.tb00811.x [CrossRef]
  • Townsend, L., Gearing, R.E. & Polyanskaya, O. (2012). Influence of health beliefs and stigma on choosing internet support groups over formal mental health services. Psychiatric Services, 63, 370–376. doi:10.1176/appi.ps.201100196 [CrossRef]
  • Vermeer, W., Bos, A.E., Mbwambo, J., Kaaya, S. & Schaalma, H.P. (2009). Social and cognitive variables predicting voluntary HIV counseling and testing among Tanzanian medical students. Patient Education and Counseling, 75, 135–140. doi:10.1016/j.pec.2008.08.022 [CrossRef]
  • Viera, A.J. & Garrett, J.M. (2005). Understanding interobserver agreement: The Kappa statistic. Family Medicine, 37, 360–363.
  • Walsh, E.C., Horvath, K.J., Fisher, H. & Courtenay-Quirk, C. (2012). The experiences, needs, and internet use of women recently diagnosed with HIV. Journal of the Association of Nurses in AIDS Care, 23, 329–338. doi:10.1016/j.jana.2011.07.004 [CrossRef]
  • Weitz, R. (1989). Uncertainty and the lives of persons with AIDS. Journal of Health and Social Behavior, 30, 270–281. doi:10.2307/2136960 [CrossRef]
  • Witzel, T.C., Guise, A., Nutland, W. & Bourne, A. (2016). It starts with me: Privacy concerns and stigma in the evaluation of a Facebook health promotion intervention. Sexual Health, 13, 228–233. doi:10.1071/SH15231 [CrossRef]
  • Wortley, P.M., Chu, S.Y., Diaz, T., Ward, J.W., Doyle, B., Davidson, A.J. & Norris-Walczak, E. (1995). HIV testing patterns: Where, why, and when were persons with AIDS tested for HIV?AIDS, 9, 487–492. doi:10.1097/00002030-199509050-00011 [CrossRef]

Summary of Intercoder Reliability Tests

VariablePercent Agreement AlphaScott's PiCohen's KappaNo. of Items
Monitor level1111
User gender0.9850.9740.9741
Stigmatized threads and posts0.910.740.753
Stigma
  Test results used against me15
  Poor social perception17
  Mistake them as having the disease11
  Fear of being diagnosed0.9920.9430.9431
  Privacy concerns13
  Poor evaluation from partner1113

Frequency of Stigmatized Threads Corresponding with Monitoring Levela

Monitoring LevelThreads, n (%)
Stigmatized (n = 13)Non-Stigmatized (n = 197)
Counselors only (n = 60)7 (53.8) [11.7]53 (26.9)
Members only (n = 120)2 (15.4) [1.7]118 (59.9)
Counselors and members (n = 30)4 (30.8) [ 13.3]26 (13.2)

Frequency of Stigmatized Threads Corresponding With Gender and Sexualitya

Gender/SexualityThreads, n (%)
Stigmatized (n = 13)Non-Stigmatized (n = 197)
Male (n = 54)3 (23.1) [5.6]51 (25.9)
Female (n = 32)5 (38.5) [15.6]27 (13.7)
Gay (n = 25)4 (30.8) [16]21 (10.7)
Lesbian (n = 1)01 (0.51)
Bisexual (n = 1)01 (0.51)
Cannot tell gender (n = 97)1 (7.7) [1.03]96 (48.7)
Authors

Ms. Ho is PhD Candidate, Ms. Pan is PhD Candidate, and Dr. Taylor is Associate Professor of Communication, Department of Communication, University of California, Davis, California.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Chia-Ling Lynn Ho, MA, PhD Candidate, Department of Communication, University of California, 469 Kerr Hall, Davis, CA 95616; e-mail: cllho@ucdavis.edu.

Received: May 08, 2017
Accepted: July 31, 2017
Posted Online: September 12, 2017

10.3928/02793695-20170905-01

Sign up to receive

Journal E-contents