Stigmatization among people living with HIV in Hong Kong: A qualitative study

Abstract Background HIV/AIDS is one of the most stigmatized medical conditions across the world. Self‐stigma is prevalent among people living with HIV (PLHIV) and a major obstacle to HIV prevention and care. Objective This study aimed to describe the experiences of stigmatization and explore the possible factors that might be associated with stigmatization among PLHIV in Hong Kong. Design Qualitative in‐depth interviews were conducted. Setting and participants 15 PLHIV were recruited from two local non‐governmental organizations on HIV prevention. Main variables studied Participants were interviewed about their views and feelings towards oneself as a PLHIV and contributing factors, experiences of discriminations, stigmatizing behaviours, issues about disclosure, social relationships and potential impact of HIV. Results and conclusions Thematic analyses revealed three levels of factors which might be associated with stigmatization: (i) intrapersonal level (misconceptions about HIV, attribution of self‐responsibility, severe state of illness, side‐effects of medication), (ii) interpersonal level (discrimination, social rejection) and (iii) social level (mass media, public stereotypes). Findings provide important insights into which interventions to reduce stigmatization of PLHIV could be designed.


| INTRODUCTION
HIV is a serious global epidemic causing heavy social and medical costs. Although global HIV prevalence has levelled off, the total number of people living with HIV (PLHIV) is increasing steadily due to the on-going acquisition of HIV infection, longer survival times of PLHIV and a growing general population. 1 In Hong Kong, the HIV prevalence was low among the general population but high among some specific populations (e.g. 5.9% among men who have sex with men). 2 Among the new HIV cases reported in the second quarter of Hong Kong, 86.7% were male, and 35.7%, 36.9% and 4.5% were infected through heterosexual, homosexual and bisexual contact, respectively. 3 The figures are comparable to those of the UK, which shows that out of those newly diagnosed with HIV in 2015, 75% were male, and 38.1% and 56.1% were infected through heterosexual and homosexual sex contact, respectively. 4 Despite the promising efforts in counteracting HIV, HIV continues to be a major public health concern in Hong Kong.
HIV has long been regarded as one of the most stigmatized medical conditions. 5 According to Goffman,6 stigma is defined as an attribute linking a person to a set of undesirable characteristics that may lead to prejudice and discrimination. While public stigma is the reaction that the general population has to the individuals who are considered different, self-stigma occurs when "people with devalued status who internalize the discriminatory beliefs and experience diminished selfesteem and self-efficacy". 7 Corrigan suggested that both public stigma and self-stigma comprise three components: stereotype (negative belief about the group/self), prejudice (agreement with belief and/or negative emotional reaction) and discrimination (behaviour response to prejudice). 8 Self-stigma has further been explained by the cognitiveaffective-behavioural model. 9 According to the model, the stigmatized individuals perceive their stigmatized identity as a burden and taint of their life, which lead to negative sense of self (self-stigmatizing cognitions). Such conceptions might lead to a myriad of negative affective responses, encompassing feelings of anger, fear and shame (selfstigmatizing affect) which, in turn, resulting in identity concealment, social avoidance and self-denigration (self-stigmatizing behaviours).
Despite the continuous intervention efforts in combating HIV stigma, public stigma towards PLHIV remains ubiquitous across the globe. In a meta-analysis of 21 studies, public stigma towards HIV/ AIDS is the greatest compared to genital herpes, hepatitis, drug abuse and cancer. 10 The high level of stigma towards PLHIV can be due to several causes. First, a high level of self-responsibility is attached to HIV as the acquisition of HIV is due to behaviours that can be preventable, such as unsafe sex and needle sharing. 11,12 Some behaviours associated with HIV, such as same-sex behaviours, are also considered immoral and are thus condemned by the society. 5 Misconceptions about HIV transmission routes and overestimation of the perceived contagiousness and risks through casual contact further evoke stigmatization towards HIV. 12 These cause an intensive level of blame and disapproval against PLHIV, resulting in social rejection, discrimination and prejudice. 13,14 It is contended that stigma against PLHIV is even more intense in the Chinese context, as the behaviours related to HIV infection, such as same-sex behaviours, multiple sex partnership and injecting drug use, are generally perceived as defying acceptable social norms and culture. [15][16][17] High level of ignorance, misconception and fear of HIV also contribute to the high level of stigma towards PLHIV in the Chinese context. 18,19 Furthermore, face concern, which refers to social image and social worth that are garnered based on one's performance in an interpersonal context, is particularly important in the Chinese society. 20,21 Yang and Kleinman 22 proposed that while the concept of "face" represents social power, capital and a person's value in society, PLHIV experiences loss of face as a result of violation to cultural norms, which greatly affects their access to social capital and closely parallels how stigma works in Chinese society. In Hong Kong, studies have documented a high level of unfavourable attitudes and stigmatizing behaviours towards PLHIV. For example, a population-based study among Hong Kong adults reported that nearly half of them exhibited discriminatory attitudes towards PLHIV. 23 A comparative study on the public's attitude towards different types of infectious diseases have shown that the level of public stigma towards HIV was the highest compared to other infectious diseases such as severe acute respiratory syndrome (SARS) and tuberculosis (TB). 24 PLHIV are also disadvantaged in terms of economic and social opportunities. For example, a local study reported that 20% of the studied companies would dismiss an employee if he or she was HIV+, and only a few companies indicated that they would provide counselling and support to an HIV+ employee. 25 Comparative study on employer attitudes towards PLHIV in Beijing, Hong Kong and Chicago revealed the trend of reluctance to hire PLHIV are most pronounced among employers from Beijing and Hong Kong. 26 Study among PLHIV in Hong Kong has also shown that over 50% felt that they were discriminated in different settings such as in the workplace and in social relationships. 27 HIV stigma poses a significant impediment to public health across the globe and a key obstacle to HIV treatment, prevention, care and support. 28,29 It is noticeable that many PLHIV have internalized the negative labels attached to them and experienced a high level of selfstigma. In one study among 322 PLHIV in China, 78% of them had the feeling of negative worth and 58% of them were unwilling to disclose their HIV status. 30 It is also reported that the level of internalized stigma was similar between PLHIV diagnosed less than 1 year ago and more than 1 year, indicating that level of self-stigma did not reduce across time. 31 Self-stigma is significantly associated with various negative outcomes such as worse psychosocial well-being, 32  showed that attribution of perceived controllability of the disease, personal responsibility to the cause of the illness and self-blame was significantly associated with higher levels of self-stigma. 45,46 However, one local study looking at factors associated with self-stigmatization using the attribution model for PLHIV, including self-blame, responsibility for contacting HIV and internal controllability for contracting HIV, showed that although attributions of control predicted attributions of responsibility which, in turn, predicted self-blame, the linkage between self-blame and self-stigma was not significant. 47 Other factors have also been proposed. Recent studies in adults living with HIV have found that optimism predicts lower levels of HIV-related stigma indirectly through increasing psychological well-being 32 and also that personal meaning predicts lower level of HIV-related stigma indirectly through increasing social support. 48 These mechanisms have not been explored in the local context. Furthermore, mass media has often been used to shape public attitudes and knowledge about HIV. It has been suggested that Chinese individuals are more likely to obtain HIV information from mass media than from interpersonal sources. 49 A content analysis of articles about HIV published in Chinese newspapers over a decade revealed that individuals who contracted HIV through socially unacceptable means were devalued as non-descript members of a deviant and dangerous group. 50 However, from our understanding, how mass media might lead to self-stigma among PLHIV in the Chinese context has not been examined.
There is an urgent need to understand how internalization of stigma is formed and intensified among PLHIV in the Chinese context so that tailored services and intervention can be provided to this population. The purpose of this study was to describe and explore the possible factors that may contribute to internalization of stigma among PLHIV in Hong Kong using a qualitative approach.

| Participants and procedures
Participants were adults living with HIV in Hong Kong. Inclusion criteria were (i) age of 18 or above, (ii) being diagnosed with HIV for more than 6 months, (iii) being able to speak in Cantonese which is the native language of Hong Kong and (iv) mentally competent in taking part in a 1.5-hour in-depth interview.
Participants were recruited from two local non-governmental organizations (NGO) on HIV prevention using convenience sampling. Staff of the participating NGO identified their members who fulfilled the inclusion criteria, briefed and referred them to contact the research staff who would make an appointment to meet with them. At the meeting, participants were briefed about the purpose and logistic of the study again. Written informed consent was obtained before the in-depth interview was administered by the research staff in a private room, in the absence of any third person. Data confidentiality was assured. A total of 15 eligible members were referred to the research team; all of them provided written consent to join the study and completed the in-depth interview. Each interview lasted for about 1.5 hours. Ethical approval was obtained from The Chinese University of Hong Kong Survey and Behavioral Research Ethics Committee.

| Socio-demographic and medical characteristics
Participants' socio-demographic characteristics, including age, gender, education level and employment status, were obtained. Medical characteristics, including length of diagnosis, disease stage, and most recent CD4 count, were also obtained.

| Interview guide
Interview questions were open-ended and broad to elicit a detailed description of participants' experiences.

| Data analysis
The interviews were audio-recorded and transcribed verbatim.
Responses characterizing the factors associated with internalization of stigma were noted and analysed inductively using thematic analysis.
The coding process of thematic analysis involves recognizing patterns from the data and encoding them prior to the process of interpretation. 51,52 The responses were read and reread several times, across  both questions and respondents, to increase familiarity with the data.
Notes were made to reflect initial impressions and were progressively conceptualized into broader themes that best captured participants' viewpoints. 53 The coding framework and results were discussed between the authors, and any discrepancies were resolved to safeguard the reliability of the findings.

| Factors contributing to self-stigmatization among PLHIV
Findings from the interviews seem to suggest that various levels of factors contribute to self-stigma among PLHIV. In particular, participants' responses to the open-ended questions were conceptualized in the following themes:

| Intrapersonal level
Misconceptions about HIV   Poor perception of self as a PLHIV seems to build from such discriminatory experiences. When PLHIV find that they do not receive any respect and support from others, they are more likely to conceal their identity and show negative feelings towards themselves. The negative perception might be further exacerbated when it comes to the clinic setting, as clinic staff is expected to show empathetic understanding to every patient.

Social rejection
For most of the participants, HIV infection is considered as a shame to both PLHIV and the groups they belong to, from the interview it was ubiquitous that many members were rejected from their social circle. Findings suggest that participants seem to be rejected from their significant others, and these unpleasant responses tend to be the prime factor for their self-stigmatization. Social rejection is particularly deleterious that PLHIV might think that their identity incur shame to them and their families as well. It also appears to make them believe that being PLHIV would only receive aversive reactions from their social network, leading to a negative perception towards themselves.

Public Stereotypes
Findings also suggest that public stereotype about HIV appears to be the cause of their self-stigmatization. Some respondents revealed that PLHIV were perceived by the society as "Lan Gwan" (someone who always patronizes sex workers) and "Dai Sei"(someone who deserves to die), these stereotypes have further portrayed PLHIV as "bad people," which jeopardizes their level of self-worth:

<Participant 10>
These public stereotypes constitute a negative impression towards PLHIV, constructing devaluated and marginalized social status on them.
PLHIV are highly aware of the stereotype attached on them, and they would then internalize those stereotypes and prejudices onto themselves.
The stereotypes imbued by the society are that PLHIV should be drugs users, homosexuals or promiscuous, which are bounded to be negative.

Mass Media
The mass media, mainly the TV, advertisements and newspapers, serves as a tool to disseminate message and constructs a norm within the society. Most of the respondents seem to blame the media for being the main source of creating unwelcoming and hostile climate towards PLHIV. As one member explained: …Media seemingly only focuses on the dark side of PLHIV.
For example, newspapers usually use an exaggerated title to describe a PLHIV who has committed suicide. It has instilled the concept into general public that all PLHIV will do the same thing as well.
Members claimed that the media was prone to cast a negative light on them by developing negative portrayal of PLHIV: In some movies or TV programme, it was common to see that the actor would curse their enemy to die of HIV.
Although it seemed to be to a joke, it might defame us.

| DISCUSSION
The present study was the first attempt in understanding the stigmatizing experiences and the possible factors that may be related to self-stigmatization among PLHIV in Hong Kong.. Findings show that participants face strong stigmatization in various ways and suggest a number of factors that may be associated with their self-stigmatization. First, from the intrapersonal level, attribution of responsibility to self seems to be associated with self-stigmatization. Our findings suggest that many participants have shown feelings of shame and guilt as they considered themselves responsible for the infection. As most of the participants acquired HIV through heterosexual contact with sex workers or homosexual contact with men, it is conceivable that participants demonstrated an internal attribution of the disease and thus reporting negative feelings of shame and guilt and a high level of self-stigmatization.
Findings are consistent with a local study which shows that the Hong Kong general public perceived PLHIV as more responsible and blameworthy of their diseases than other conditions such as SARS and TB. 24 Findings also suggest that physical challenges, such as severe HIV symptoms or medication side-effects; tend to increase their level of self-stigmatization. Participants described how they wanted to isolate themselves because of the physical symptoms, and how their physical symptoms made them felt negative about themselves. Previous work has suggested that stigma associated with HIV increases as symptoms become more apparent to others. 11 Findings are also consistent with previous studies that PLHIV who greater severity of HIV symptoms experienced higher levels of self-stigma. 5 As HIV is a concealable condition, the appearance of physical symptoms might be one of the primary cues that someone is infected with HIV. The intense physical sufferings attached to HIV may cause PLHIV distress and frustration.

Findings of the present study also reveal that misconception about
HIV is another factor leading to self-stigmatization. As suggested by the data, misconceptions about HIV, even among PLHIV, were highly prevalent. Findings corroborate with local studies that people in Hong Kong have poor knowledge about HIV. 23 It also supports previous studies that show the pathway between lack of knowledge about HIV to increased felt stigma and decreased intention to disclose one's HIV status. 54 Despite the critics that education alone might not be effective in reducing stigma, 55 the present study suggests that providing PLHIV knowledge of the disease is still the key and first step in stigma reduction.
In the interpersonal level, findings also suggest that discrimination and social rejection emerged as a factor driving self-stigmatization.
The present study indicates that PLHIV experience discrimination and social rejection in various settings. In the study, most of the participants gave detailed accounts on their feelings of social isolation or experiences of being rejected by the family and society. Some of them even reported facing discrimination in the health-care settings.
Indeed, stigma attached to HIV remains ubiquitous in Hong Kong. 23 Study in China also revealed that people hold stigmatizing attitude to PLHIV as they are blamed for their acquisition of the disease. 19 Facing both social rejection and discrimination experiences, PLHIV may endorse their stigmatizing attitudes and internalize negative feelings into themselves, which, in turn, develop poor sense of self and self-esteem.
At the society level, the media also plays an important role in shaping the self-stigma of PLHIV, mainly through delivering biased messages about HIV and developing a negative representation of PLHIV. At the individual level, it is important to increase awareness of stigma and the benefits of reducing stigma among health workers. In the environmental level, there is a need to ensure that health workers have the information, supplies and equipment necessary to practice universal precautions and prevent transmission of HIV. It is also important to enact policies that protect the safety and health of patients and health-care professionals in order to prevent discrimination against PLHIV. However, this might be difficult to achieve given the lack of policies to prevent discriminations against vulnerable groups in Hong Kong.
The study also indicate that mass media is the main culprit of creating a biased image for PLHIV, thus leading to their stigmatization. Interventions to reduce HIV stigma should therefore extend beyond the individual level. Previous study has reported that exposure to multiple sources of HIV information from mass media was significantly related to HIV knowledge and less stigmatizing attitude towards PLHIV. 49  There are several limitations of the study that should be noted.
First, a convenience sampling was used. Therefore, results cannot be Interventions to reduce stigma of PLHIV are strongly warranted and should target not only the patients themselves, but also their family members, health-care professionals and the broader community.