Disclosure Pattern of Self-Labeled People Living with HIV/AIDS on Chinese Social Networking Site: An Exploratory Study

Abstract

HIV/AIDS is an important public health issue in China. The number of people living with HIV/AIDS (PLWHA) has been increasing since the introduction of highly active antiretroviral therapy. PLWHA's life quality is becoming an important issue, with lack of research in China. In this study, a group of PLWHA (n = 663) was identified using HIV/AIDS relevant usernames on a Chinese social networking site (Weibo) to study their daily living situations. We found that more than 99.10% of PLWHA were male, among whom 90.80% turned out to be homosexual. They had significantly more fans and followees, but fewer postings compared to the general population. The mean age of the PLWHA was 28.96 (SD = 5.05) years old, and southwest and northwest China had a high prevalence of HIV/AIDS. In addition, PLWHA's postings were coded and we found that more than half of the postings (n = 769, 51.03%) contained strong emotions. Less than one-fifth of the postings were directly related to HIV/AIDS topics (n = 269, 17.85%), while seeking emotional support, such as looking for stable partnership, was ranked as the first priority of support seeking. In summary, we found that the majority of the self-labeled PLWHA were likely to be men who have sex with men. They used Weibo to share their daily life events and seek emotional support. Implications for promoting HIV/AIDS education and prevention through Chinese social networking sites were also discussed.

Introduction

HIV/AIDS is an important public health issue in China. It was reported that around 501,000 people had been living with HIV/AIDS (PLWHA) by the end of 2014, accounting for 0.037% of the total population.¹ Prevalence of AIDS varied by age group with the majority (86.35%) in the age range of 20–50 years.² The fatality rate of AIDS in China has been continuously dropping since the introduction of highly active antiretroviral treatment (HAART),^3,4 indicating that HIV/AIDS is becoming a chronic disease in China as has been happening in many other countries.⁵ As a result, prolonging survival is no longer the only priority of PLWHA, presenting new challenges for Chinese current health and social services. A comprehensive management system that focuses on lifelong treatment and care has been proposed^6,7 to meet the challenges.

However, knowledge on PLWHAs' living status and daily requests that is important for guiding such service transition has been less explored in China. This may be because PLWHA generally prefer not to be involved in surveillance studies due to the discrimination and stigma toward HIV/AIDS,⁸ which are prevalent in China.^9,10 Social networking sites such as Facebook have become a well-known global platform for self-expression among several hundreds of users all over the world.^11,12 It has been recognized as a platform for health communication and promotion in a less expensive and more efficient way,¹³ especially for “hard to reach” subpopulations such as PLWHA¹⁴ as it provides an anonymous environment to generate, share, and receive information with less exposure to stigma.¹⁵

Weibo, a popular microblogging network in China, containing millions of users, has become a platform for people to gather information and to make friends with like-minded individuals. Self-expression turns out to be the main usage of Weibo among Chinese users,¹⁶ which enables lots of studies on public health-related topics such as air pollution,¹⁷ infectious diseases,¹⁸ and suicide attempts.¹⁹ However, there are limited studies on Chinese PLWHA. To our knowledge, there is only one study investigating the types of social support among Chinese PLWHA within a specific HIV/AIDS Weibo group.²⁰ Little attention was given to the daily message production of general PLWHA. Such studies are important, as they will contribute to the knowledge of PLWHA's well-being and, thus, provide guidance for the service transition in China to better satisfy PLWHA's new emerging needs.

In this study, we identified a group of PLWHA on Weibo, who have self-labeled their HIV identity using specific letters such as “A-” or “”- (“A-” standing for AIDS, and “H-” standing for HIV). Using the social media data from this group, we explored PLWHA's daily life status and requests after they were diagnosed with HIV/AIDS. This study could enrich our knowledge on Chinese PLWHA's living status and inform the use of social networking sites to reach and engage people who are affected by HIV/AIDS.

Methods

The data used in this study are publicly available. To protect the privacy of individuals involved in this study, information that could be used to track them down was removed before the data analysis.

Data collection

Data used in this article were collected from Sina Weibo between January 31 and May 22, 2015 through its API. A small group of self-labeled PLWHA was identified by specific letters in IDs such as “A-,” “”-, or “H-.” Then, this group was used as a seed to generate a candidate set by including the users whose postings are reposted by the user in this group. The users in the candidate set were further selected by checking if: (1) any posting contained information that could be validated as HIV/AIDS diagnosis or treatment and (2) username contained HIV/AIDS-specific letters. Three researchers undertook the labeling independently. The majority rule was applied to determine the labeling results. There were 665 self-labeled PLWHA selected at this stage. Two celebrities were identified as outliers due to the prodigious fans they have and, thus, were excluded. As a result, 663 users were included in the current analysis. They were further independently coded by two researchers to check if the person was homosexual based on the users' self-identification as homosexual or mentioned that he wanted a boyfriend or was in a relationship with a man. Coding results were discussed between the researchers until an agreement was reached. A third researcher was introduced to code a sample of 100 users that were randomly selected from the 663 users. Intercoder reliability for MSM is: percent agreement 87%, kappa 0.446. Finally, 933,119 users were randomly selected from Weibo to enable the comparison on the demographic information, including username, gender, age, geographical location, the number of fans, the number of followees, the number of postings, and the type of users, which was gained by a crawler developed by the researchers.²¹ Age information was only filled in by 350 of the PLWHA, covering 52.8% of the total sample. Age below 10 and above 80 was labeled as invalid input and, thus, excluded. This resulted in 273 users being analyzed on the age distribution.

Coding categories

For each self-labeled PLWHA, the 1,000 latest postings were crawled. All the postings were obtained if the total number of the postings was fewer than 1,000. We randomly sampled 1,678 (Confidence level 95%, Margin of error 2.39%) postings, 171 of which were excluded due to being identified as advertisements. Two researchers with extensive public health research experience read the postings to determine the categories. Categories were defined as topics that occur or reoccur.²² Postings were coded for the presence of the following categories: (1) sharing information about HIV/AIDS illness and treatment; (2) sharing information about daily life; (3) expressing emotions toward HIV/AIDS topics; (4) expressing emotions toward life and death; (5) expressing emotions toward relationships; (6) expressing emotions toward daily life; (7) seeking information about HIV/AIDS topics; (8) seeking emotional support; and (9) seeking other types of support on Weibo.

Two trained researchers coded 1,507 randomly sampled postings based on the above codebook. They coded the postings independently and discussed the posting where there was disagreement until a census was reached. A third member with extensive mental health experience was introduced to code a sample of 200 postings randomly selected from the 1,507 postings. Interrater reliability for each theme was as follows: (1) sharing information about HIV/AIDS illness and treatment: percent agreement 97.5%, kappa 0.787; (2) sharing information about daily life: percent agreement 82%, kappa 0.535; (3) expressing emotions toward HIV/AIDS topics: percent agreement 95%, kappa 0.661; (4) expressing emotions toward life and death: percent agreement 96%, kappa 0.743; (5) expressing emotions toward relationships: percent agreement 90%, kappa 0.534; (6) expressing emotions toward daily life: percent agreement 82.5%, kappa 0.468; (7) seeking information about HIV/AIDS topics: percent agreement 98%, kappa 0.79; (8) seeking emotional support: percent agreement 98.5%, kappa 0.72; and (9) seeking other types of support on Weibo: percent agreement 96%, kappa0.315. Some postings may cover more than one topic. For postings of this kind, we determined the theme of a posting by the major proportion. According to the magnitude guidelines proposed by Landis and Koch,²³ all the kappa values in the study were acceptable.

Data analysis

The difference in the median of the number of fans, followees, and postings was measured by Wilcoxon Rank Sum and Signed Rank Tests.²⁴ The geographic distribution of PLWHA was presented by calculating the ratio of PLWHA to the number of the general population in each province. The diurnal pattern of the postings was presented by ggplot2 (version 2.0.0). All the analyses were operated by R (version 3.2.3).

Results

Characteristics of PLWHA

There was a total 663 self-labeled PLWHA identified on Weibo. Six hundred fifty-seven (99.10%) of the PLWHA were male, which is significantly higher (p < 0.001) compared with the general population (43.37%) on Weibo. The mean age of the PLWHA was 28.96 (SD = 5.05) years old, with individuals aged from 25 to 28 covering more than 50% of the total sample. In addition, 602 of the PLWHA were further identified as homosexual, accounting for 90.80% of the total sample.

The PLWHA group had significantly more fans (p < 0.001) and followees (p < 0.001) compared to the general population (Fig. 1a, b), but fewer postings (p < 0.001, Fig. 1c). This suggests that PLWHA may have a relatively larger social network size but with less activity. Geographical distribution of PLWHA is shown in Figure 2. The data suggest clear difference in HIV/AIDS epidemics across China. Southwest and northwest China were the two regions with a great prevalence of HIV/AIDS in the provinces of Chongqing (0.17%), Sichuan (0.16%), Shaanxi (0.14%), Yunnan (0.12%), and Qinghai (0.11%). In addition, Beijing (0.17%) and Liaoning (0.12%) in north China also had high HIV/AIDS prevalence (Appendix 1). This geographical distribution pattern is similar to the previous study among MSM who lived with HIV/AIDS in China.²⁵

FIG. 1.

Distributions of fans, followees (a), and postings between PLWHA (b), and the general population (c). PLWHA, people living with HIV/AIDS; ***p < 0.001.

FIG. 2.

Geographical distribution of PLWHA in China.

Daily living status of PLWHA

To investigate the daily living status of PLWHA, the diurnal pattern of postings was analyzed in a comparison with the general population (Fig. 3). The general pattern between the two groups is similar. This is different from the previous report on the depressed individuals,²⁶ who have significantly higher activity late in the night. This result suggests that the majority of the PLWHA may live a relatively healthy life style.

FIG. 3.

Diurnal activity of PLWHA and the general population.

In addition, the content of the PLWHA's postings was analyzed according to the coding framework listed in Appendix 2 to identify their needs and daily living status (Table 1). Results showed that less than one-fifth of the postings are directly related to HIV/AIDS topics (n = 269, 17.85%), among which 52 (19.33%) are on seeking support, 104 (38.66%) on sharing HIV/AIDS relevant information such as new HIV/AIDS medicine and the records of CD4 test results, and another 113 (42.01%) on expressing their personal feelings on this topic. Seeking support accounted for 8.96% of the total postings (n = 135), while seeking emotional support such as looking for partnership was the first major request (n = 57, 42.22%), followed closely by seeking information support related to HIV/AIDS (n = 52, 38.52%). More than half of the postings (n = 769, 51.03%) contain strong emotions. Topics vary from daily life events such as work, weather, and food (n = 348, 45.25%), feelings toward family members and partnerships (n = 202, 26.27%), and HIV/AIDS-related topics (n = 113, 14.69%), to philosophy of life (n = 106, 13.78%).

Table 1.

PLWHA Posting Content Coding Results

Themes	Post (n = 1,507)	%
	N (%)
Seeking support	135	8.96
Information support related to HIV/AIDS	52	38.52
Emotional support	57	42.22
Others	26	19.26
Sharing information	603	40.01
HIV/AIDS related	104	17.25
Daily life events	499	82.75
Expressing emotions	769	51.03
HIV/AIDS related	113	14.69
Philosophy of life	106	13.78
Relationships	202	26.27
Daily life events	348	45.25

PLWHA, people living with HIV/AIDS.

Discussion

In this study, we identified a group of PLWHA on the Chinese social networking site, Weibo, who had self-labeled their HIV serostatus. To our knowledge, this is the first study to report the daily living status of PLWHA under a nonexperimental condition using social media data. As a result, we identified that the majority of the self-labeled PLWHA were male in their late twenties with homosexual behaviors. They did not show a distorted diurnal pattern of postings, but had a clear tendency to seek emotional support, which may be part of their motivation for self-labeling.

In China, both HIV/AIDS and homosexuality are discriminated and stigmatized, which may prevent them from discussing their personal needs and feelings in real life.²⁷ Social media such as social networking sites offer an anonymous environment for MSM PLWHA to exchange and share information. This may explain why PLWHA tended to express their feelings and seek help on social media.²⁸ In the current study, we found that only a small proportion of the postings made by PLWHA were about seeking instrumental support or medical suggestions. The major postings were focused on expressing emotions and requests on seeking stable partnership. These findings highlight the unmet emotional request of PLWHA, which was further indicated by a larger but less active social network. The underlying mechanism has not been examined. One possibility is that they use social media popularity to compensate for inadequate offline communications.^29,30 Considering the fact that the number of sexual partners who met from online social networking sites was associated with increased sexual risk behaviors,³¹ special attention should be given to the safe-sex education targeting MSM who live with HIV/AIDS on social media.

Currently, China has encountered a dramatic increase in the HIV prevalence of MSM and young people.^32,33 The HIV prevalence of the age group from 15 to 24 has been doubled from 0.9% (2008) to 1.7% (2012) with seventy of these infections from MSM population.³⁴ More alarming is that the epidemic is not contained within the homosexual community, as 31% of MSM had heterosexual behaviors in the last 6 months.³⁵ Targeted prevention programs are warranted to curb this tendency to spread. However, MSM living with HIV/AIDS are reported as hard to reach.³⁶ The current study suggests the possibility of Weibo as a platform to deliver the tailed programs to this marginalized key affected population in a geographically borderless and economically effective way.

Nevertheless, it is important to notice the limitations of the current study. First, our findings may have limited generalizability, as the online sample may be different to the community sample. A previous comparison study between an Internet and community sample of Chinese MSM found that the Internet sample was significantly younger, more educated, and more likely to accept their homosexual identity.³⁷ Further studies among HIV community who have publicly exposed their HIV identity are warranted to validate our findings. Second, the users from Weibo may be different from those of other online platforms, and the HIV serostatus and homosexual identity of the users recruited in this study were identified by their postings and self-claims, which may limit the validation of this study.

Despite these shortcomings, this study represents the first social media study on the living status and requests from a key HIV/AIDS affected group in China, with a good consistency with the previous findings using traditional research methods. This suggests the feasibility of using social media as a tool to study the PLWHA's real-time behaviors under nonexperimental conditions. In addition, our findings also highlighted the potentially important role of social media in delivering tailed programs to the targeted MSM population.

Footnotes

Acknowledgments

The authors acknowledge the support from the Harbin Institute of Technology's Visiting Scholar Program and the National Natural Science Foundation of China (grant no. 71171068 & 71531013).

Author Disclosure Statement

No competing financial interests exist.

References

2015 China AIDS Response Progress Report. National Health and Family Planning Commission of the People's Republic of China, May 2015.

, Yang

, Liu

, et al. Epidemiologic features of AIDS in China, 2004–2013. Clinical Infectious Diseases, 2015; 60:167–169.

Chen

, Zhao

, et al. Eighteen-year follow-up report of the surveillance and prevention of an HIV/AIDS outbreak amongst plasma donors in Hebei Province, China. BMC Infectious Diseases, 2015; 15:316.

Jiang

, Xie

, Cao

, et al. Determinants of progression to AIDS and death following HIV diagnosis: a retrospective cohort study in Wuhan, China. PLos One, 2013; 8:e83078.

Colvin

. HIV/AIDS, chronic diseases and globalisation. Global Health, 2011; 7:31.

Kitahata

, Tegger

, Wagner

, et al. Comprehensive health care for people infected with HIV in developing countries. British Medical Journal, 2002; 325:954.

Barker

, McCannon

, Venter

WDF

, et al. Managing HIV as a chronic disease: using interactive data collection to improve clinical care. Southern African Journal of HIV Medicine, 2005; 5:7–11.

Magnani

, Sabin

, Saidel

, et al. Review of sampling hard-to-reach and hidden populations for HIV surveillance. Aids, 2005; 19:S67–S72.

Lin

, Li

, Wan

, et al. Empathy and avoidance in treating patients living with HIV/AIDS (PLWHA) among service providers in China. AIDS Care, 2012; 24:1341–1348.

10.

Abler

, Henderson

, Wang

, et al. Affected by HIV stigma: interpreting results from a population survey of an urban center in Guangxi, China. AIDS Behav, 2014; 18:192–201.

11.

Zlatolas

, Welzer

, Hericko

, et al. Privacy antecedents for SNS self-disclosure: the case of Facebook. Computers in Human Behavior, 2015; 45:158–167.

12.

Kwak

, Choi

, Lee

. SNS flow, SNS self-disclosure and post hoc interpersonal relations change: focused on Korean Facebook user. Computers Human Behavior, 2014; 31:294–304.

13.

Allsworth

. Invited commentary: recruiting for epidemiologic studies using social media. American journal of epidemiology. 2016; 181:747–749.

14.

Martinez

, Wu

, Shultz

, et al. Still a hard-to-reach population? Using social media to recruit Latino gay couples for an HIV intervention adaptation study. J Med Internet Res, 2014; 16:e113.

15.

Kamel Boulos

, Wheeler

. The emerging Web 2.0 social software: an enabling suite of sociable technologies in health and health care education. Health information and Libraries Journal, 2007; 24:2–23.

16.

Xue

, Li

, Jin

, et al. Detecting adolescent psychological pressures from micro-blog. Health Information Science, 2014; 8423:83–94.

17.

Wang

, Paul

, Dredze

. Social media as a sensor of air quality and public response in China. Journal of Medical Internet Research, 2015; 17:e22.

18.

Fung

ICH

, Hao

, Cai

, et al. Chinese social media reaction to information about 42 notifiable infectious diseases. PLoS One, 2015; 10:e0126092.

19.

, Cheng

, Wong

PWC

, et al. Responses to a self-presented suicide attempt in social media a social network analysis. Crisis, 2013; 34:406–412.

20.

Shi

, Chen

. Social support on Weibo for people living with HIV/AIDS in China: a quantitative content analysis. Chinese Journal of Communication, 2014; 7:285–298.

21.

Tian

, Yu

, He

. An analysis of sleep complaints on Sina Weibo. Computers in Human Behavior, 2016; 62:230–235.

22.

Ryan

, Bernard

. Techniques to identify themes. Field Methods, 2003; 15:85–109.

23.

Landis

, Koch

. The measurement of observer agreement for categorical data. biometrics, 1977:159–174.

24.

Siegel

. (1956). Nonparametric statistics for the behavioral sciences. New York: McGraw-Hill, 312 pp.

25.

Zhang

, Chow

EPF

, Jing

, et al. HIV prevalence in China: integration of surveillance data and a systematic review. Lancet Infectious Diseases, 2013; 13:955–963.

26.

De Choudhury

, Gamon

, Counts

, et al. (2013). Predicting depression via social media. Cambridge, MA: ICWSM.

27.

Tang

, Mahapatra

, Tucker

, et al. Prejudice, Stigma and social discrimination: perceived barriers in HIV prevention and control among men who have sex with men in China. Journal of Clinical Case Reports, 2014; 4:2.

28.

Taggart

, Grewe

, Conserve

, et al. Social media and HIV: a systematic review of uses of social media in HIV communication. Journal of Medical Internet Research, 2015; 17:e248.

29.

Valkenburg

, Peter

. Adolescents' identity experiments on the internet consequences for social competence and self-concept unity. Communication Research, 2008; 35:208–231.

30.

Zywica

, Danowski

. The faces of Facebookers: investigating social enhancement and social compensation hypotheses; predicting Facebook™ and offline popularity from sociability and self‐esteem, and mapping the meanings of popularity with semantic networks. Journal of Computer‐Mediated Communication, 2008; 14:1–34.

31.

Young

, Szekeres

, Coates

. The relationship between online social networking and sexual risk behaviors among men who have sex with men (MSM). PLoS One, 2013; 8:e62271.

32.

Shao

, Li

, Yu

, et al. The HIV/AIDS epidemic characteristics in a northeast province of China-Men who have sex with men have made a tremendous contribution to the growth of the HIV epidemic. Journal of Infection, 2014; 68:273–280.

33.

Meng

, Zou

, Beck

, et al. Trends in HIV prevalence among men who have sex with men in China 2003–2009: a systematic review and meta-analysis. Sex Health, 2013; 10:211–219.

34.

AIDS AHa. (2015). HIV and AIDS in China. www.avert.org/professionals/hiv-around-world/asia-pacific/china#footnote11_6wtpwpu (accessed May 23, 2016).

35.

Lau

JTF

, Wang

, Wong

, et al. Prevalence of bisexual behaviors among men who have sex with men (MSM) in China and associations between condom use in MSM and heterosexual behaviors. Sexually Transmitted Diseases, 2008; 35:406–413.

36.

Archibald

, Jayaraman

, Major

, et al. Estimating the size of hard-to-reach populations: a novel method using HIV testing data compared to other methods. Aids, 2001; 15:S41–S48.

37.

Zhang

, Bi

, Lv

, et al. Differences between internet and community samples of MSM: implications for behavioral surveillance among MSM in China. Aids Care-Psychological and Socio-Medical Aspects of Aids, 2008; 20:1128–1137.