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Stigma and
Management of stigma and disclosure of
disclosure of HIV/AIDS status HIV/AIDS status
in healthcare settings
95
Victor Wong
Department of Social Work, Hong Kong Baptist University, Kowloon,
Hong Kong, People’s Republic of China, and
Loretta Wong
AIDS Concern, Chai wan, Hong Kong, People’s Republic of China

Abstract
Purpose – This paper aims to examine the management strategies adopted by older people living
with HIV/AIDS (PHAs) to conceal their positive status in healthcare settings, and their responses
taken and means used to cope with the stigmatizing and exclusionary effects as a result of the
disclosure of their status by/to healthcare workers.
Design/methodology/approach – Under the auspices of a local NGO in Hong Kong, a total of
seven male older PHAs aged 55 or above from pre-existing HIV/AIDS self-help groups were recruited
for two separate focus groups. A thematic approach was adopted for data analysis and specific themes
identification.
Findings – An analysis of the data revealed that older PHAs did exercise their own agency in
preventing against and managing stigma in their access to and use of health care services. Two more
specific themes around “sign of disapproval” and “discriminatory practice” as barriers to access were
also identified.
Research limitations/implications – Because of the small sample size, the pattern of
stigmatization experiences and coping strategies cannot claim to be representative of the complete
picture of the stigma associated with HIV/AIDS.
Originality/value – This is the first exploratory study of the stigmatization and devaluation
suffered by older PHAs in healthcare settings in the context of Hong Kong. It also explored in details
the pros and cons of the stigma management strategies employed by this vulnerable group of patients.
The implications for practice both on the side of healthcare workers and policy makers and that of
PHAs were discussed.
Keywords Disclosure, Acquired immune deficiency syndrome, Elderly people, Focus groups
Paper type Research paper

Introduction
Hong Kong has its first AIDS case reported in 1985. On 31 March 2005, the number of
reported HIV/AIDS cases was 2,577, of which 1,854 cases were infected with HIV, with
the remaining 723 cases developing into full-blown AIDS (Department of Health, 2005).
In the course of a press briefing on 24 February 2004, Lee, the Spokesperson of the
Department of Health, Hong Kong, alerted the public to the fact that infection in old
people aged 55 or above was now a cause for concern. In fact, between 1994 and 2003, Journal of Health Organization and
the cumulative figures for infected men aged 55 or above were 150, some 13 per cent Management
Vol. 20 No. 2, 2006
pp. 95-114
q Emerald Group Publishing Limited
The authors wish to thank Professors Robert Harris and Eric Blyth for their comments on an 1477-7266
earlier version of this paper. DOI 10.1108/14777260610661501
JHOM (13.1 per cent) of all male cases within these ten years in Hong Kong (Department of
20,2 Health, 2004).
Parallel with the growing number of infected cases, negative attitudes about
HIV/AIDS have also created an atmosphere in which people living with HIV/AIDS
(PHAs) become more afraid of the stigma associated with or caused by the disease than
of the disease itself (Brown et al., 2001; Committee on Promoting Acceptance of People
96 Living with HIV/AIDS, Hong Kong Advisory Council on AIDS, 2002).
HIV/AIDS-related stigma can be described as a process of stigmatization and
devaluation of PHAs. This process can result in the discriminatory and exclusionary
treatment of individuals based on their real or perceived positive status (UNAIDS,
2003; Carlisle, 2002). Health care workers are supposed to play a role in monitoring the
interaction between PHAs and their family and the community at large. Their attitude
and behaviour directly influence the rights, welfare and acceptance of PHAs, and
indirectly set an example for others regarding non-discriminatory and
anti-discriminatory practices.
The paper examines the management strategies adopted by older PHAs to conceal
their positive status in healthcare settings, and their responses taken and means used
to cope with the stigmatizing and exclusionary effects as a result of the disclosure of
their status by/to healthcare workers. It is through critical discussion substantiated by
first-hand research data that the healthcare workers, from doctors to allied health
workers, can be reminded of the importance of being more sensitive and supportive to
the growing numbers of older PHAs in Hong Kong or elsewhere.

Stigma and stigmatization

Goffman (1963) in his classic study argued that stigma is a “moral taint” adhering to a
person, who is in consequence discredited and viewed as less than fully human because
of it. Ainlay et al.(1986) also observed that stigma involves the same sense of moral
disapproval, denigration, and avoidance to which Goffman referred. Falk (2001)
emphasizes that modern usage of the words “stigma” and “stigmatization” refers to an
invisible sign of disapproval which permits the community, so-called insiders, to draw
a line around “outsiders” in order to isolate or exclude any group judged to deviate
from accepted norms and morality. Stigma is created as a result of the attribution of
negative labels toward some individuals or groups who share certain distinctive
characteristics that are subjected to prejudice (affect) and discrimination (behaviour)
(Wendell, 1990; Fiske, 1993).
HIV/AIDS-related stigma is often layered on top of many other stigmas associated
with specific groups such as homosexuals, sex workers, drug users, people involved in
casual sex. PHAs may, therefore, suffer from double stigma as a result of the stigma
attached to the disease, and the stigma duly attached to them because of their devalued
identity or “deviant” behaviour. Sometimes, stigma may be further complicated as a
result of racism, sexual orientation, and income level. To assert that some people are
systematically disadvantaged is to claim that their problems are both persistent and
predictable, their origins and explanation lying within the social structure rather than
being simply reflections of rough justice in the distribution of rewards, or the random
allocation of bad luck. Many PHAs are disproportionately vulnerable to a majority of
these other forms of stigma (Sontag, 1990; Rushing, 1995) particularly in view of the
undesirable structural conditions perpetuated by increasing polarization between rich
and poor in an era emphasizing globalization together with a radical restructuring of Stigma and
the world economy (Castells, 1998). disclosure of
Stigma can be divided into felt or perceived stigma and enacted stigma (Malcolm
et al., 1998). Perceived stigma refers to real or imagined fear of prejudice and potential HIV/AIDS status
discrimination arising from a particular undesirable attribute or disease, or association
with a particular group, such as PHAs. For example, PHAs may become outsiders and
refuse to disclose their positive status for fear of the possible negative reactions of the 97
insiders (sometimes they may be significant others like family members). Enacted
stigma, on the other hand, refers to the real experience of discrimination. For example,
the breach of confidentiality and the disclosure of an individual’s HIV-positive status
could lead to the loss of tangibles, like jobs and access to healthcare facilities, and
intangibles like discrimination and social exclusion (Brown et al., 2001).
Equally there is a role played by societal mechanisms in the production and
maintenance of stigma and discrimination. Beyond the domain of social interaction,
stigma is experienced through structural imbalances characterized by an asymmetrical
relationship of power between the insiders and outsiders in diverse spheres of life,
social, economic and political (Link and Phelan, 2001). Pursuing a similar line of
thought, Parker and Aggleton (2003) argue that an individualistic focus of research on
stigma has obstructed our view of more pervasive, socially shaped forms of stigma
that can hardly be understood without referring to social processes situated within a
broader picture of power and domination justifying and perpetuating a very wide
range of social inequalities.

Individual strategies to cope with stigma

How would people who are stigmatized (enacted stigma) or regard themselves as
stigmatized (perceived stigma) react to or cope with stigma? Becker and Arnold (1986)
observed that stigmatized individuals find themselves in a continual struggle with
negative attitudes and with the devalued status that accompanies them, and in the case
of older PHAs, the struggle may last until death. The degree to which the individual
feels stigmatized, the degree to which the stigma is shared with outsiders in society,
and the degree to which the stigma can be “normalized” will, as noted by Becker and
Arnold (1986), all affect the process of adaptation that the individual undergoes in
dealing with the stigma. Some, usually a minority, may resist the stigmatic label,
acting normally, sharing with or seeking support from others, undertaking personal
advocacy, joining collective advocacy, and so on. In some cases, perceived stigma can
be seen as a coping strategy to limit the occurrence of enacted stigma. That is, the
production of perceived stigma is taken as a warning signal to prepare the individuals
to be well on guard. For example, older PHAs may continue not to tell their positive
status to strangers and to others who are outside their intimacy circle.
Whether people successfully manage the stigma has to depend on factors such as its
perceived alterability, controllability and concealability (Lee, 2002; Carlisle, 2002). For
most people these conditions are unlikely to be uniformly favourable, and for them the
experience of stigma is likely to involve a feeling of personal responsibility for the
stigma which may lead them further to internalize the stigma to the point where it
becomes a permanent negative self image. Currently, a growing number of
contributors regard the internalization of stigma as self-stigma, which is taken as a
negative response by a person towards himself or herself (HDN Moderation Team,
JHOM 2004). It is not uncommon that self-stigma incorporates feelings of shame, guilt,
20,2 self-doubt and self blame. Some people exercise self-exclusion from participating in
normal social activities because of their decreasing sense of self-worth. Consequences
of self-stigma can be viewed along a continuum from mild reactions like silence and
denial, to self-isolation, self-exclusion, and even to self-harm. By accepting the stigma,
the stigmatization process looks reasonable and thus a vicious spiral is perpetuated.
98 In a recent research study by a regional PHA network on AIDS-related
discrimination in Asia, the major area of discrimination was found to be within the
healthcare sector itself (Asia Pacific Network of People Living with HIV/AIDS, 2003).
The external review team for the Advisory Council on AIDS in Hong Kong did show
their serious concerns about the use of a two-tier system of care in medical settings, in
which PHAs are differentially treated in spite of strong recommendations for universal
precautions against infectious and contagious diseases (External Review Team for the
Advisory Council on AIDS, 1998). There are many ways that stigmatizing
discriminatory measures can be taken against the PHAs, for example, refusal to
treat them or offer them differential treatment on the ground of their positive status,
testing without knowledge or consent, segregation in clinics or hospitals and breaching
of confidentiality principle (UNAIDS, 2000). As far as the context of Hong Kong is
concerned, there is yet no in-depth study of the stigmatization and exclusion suffered
by older PHAs as a result of the disclosure of their positive status by/to healthcare
professionals or workers, let alone examining the management strategies adopted by
older PHAs aged 55 or above to conceal their positive status in healthcare settings.

Research methodology
Adopting a focus group approach to the study
The assumption that HIV/AIDS constitutes a sensitive research topic is not surprising.
It seems that the best way to ensure the safety and anonymity of research participants
is to conduct interviews on an individual basis. However, in a one-to-one or an
interviewer-respondent setting, individual respondents may not be willing to share
their views and experiences for fear of appearing too defensive or even radical in the
eyes of the interviewer (Stewart and Shamdasani, 1990). Focus group research has
shown that people may be more, rather than less, likely to share personal experiences
in group rather than dyadic settings particularly when they perceive that other
participants look like themselves in some way or another (Morgan and Krueger, 1993;
Kitzinger, 1995; Carey, 1994; Morgan, 2004). The group discussion dynamics can also
encourage respondents to become more actively involved, and in some cases, other
respondents may resonate with or echo the stories or viewpoints of the focal person
concerned, which can help sharpen the focus of sharing and develop emerging and yet
relevant theme(s) for discussion (Fern, 2001).

Sample recruitment strategy

There is evidence that group size of focus groups is diminishing to as few as two group
members (Fern, 2001). Smaller focus groups are becoming increasingly popular
because they are easier to recruit and host, and they provide more time and comfort for
the participants to share their views and experiences (Krueger and Casey, 2000). The
authors prefer to use smaller groups as we anticipated that the participants would have
a great deal to share about the research topic.
 Focus group methods require participants not only to identify themselves to the Stigma and
interviewer or moderator, but also to identity themselves to other group members. As disclosure of
the research topic is characterized by sensitivity and stigmatization, there is a need to
provide reassurance concerning anonymity and confidentiality to each participant, HIV/AIDS status
which is central to the design of focus groups for data collection. In view of the fact that
participants can feel supported in a group situation surrounded by their friends rather
than strangers (Fuller et al., 1993; Hoppe et al., 1995; Farquhar, 1999), we decided to 99
work with pre-existing self-help groups aimed at promoting social support and
reducing societal isolation among the PHAs.
The study was conducted under the auspices of a local NGO providing HIV/AIDS
prevention and care to the infected and affected communities. It is through long years
of service in that NGO that one of the authors of the paper has established a
relationship of trust with quite a number of older PHAs. This relationship has
significantly facilitated the sample recruitment. Seven male participants from the
author’s employing agency were invited on an individual basis to join in a group
interview. All these participants are not only regarded by the organization as service
users, but also as working partners who take an active role to serve as volunteers,
extend peer support, provide consultation, or share with university students and AIDS
volunteers their own experiences.
Two interested participants who knew each other prior to their HIV infection agreed
to be interviewed as part of a two-member focus group so as to avoid the risk of
disclosing confidential personal information within a larger group. Another focus
group comprised of five participants. The fact is that the five-member group did not
know that these two participants were invited for another group interview, and vice
versa. The decision to conduct two separate focus group interviews rested not only on
the sensitivity of the research topic, but also on the importance of protecting individual
participants’ identity other than their HIV positive status.

Research design and procedures

Before the implementation of the study, its ethical aspects were scrutinized and
approved by the ethics committee of a university in London, where one of the authors
was taking postgraduate study. To facilitate a focused and in-depth interview, the
interviewer prepared a schedule containing pre-set but open-ended questions. The
main advantage of this approach is that, while it allows the interviewer to keep the
interview process focused, it also works within a sufficiently flexible framework to
enable participants to express their personal feelings and experiences relatively freely.
The scope of questions not only covers healthcare, but also family and community
settings. But this paper is limited to discussing the respondents’ experience and
consequences of stigma as a result of disclosure by/to healthcare professionals, and the
stigma management strategy adopted by older PHAs particularly with respect to the
non-disclosure or concealment of their positive status.
Before the interview, the two focus groups were briefed separately about the
purpose of the study, and their rights of confidentiality and withdrawal. In all cases a
consent form was signed. With the consent of the participants, the interviews were
audio taped to facilitate verbatim transcription and subsequent data analysis. In order
to strengthen confidentiality, disguised names in the form of assigned numbers were
used instead.
JHOM Interview moderation and data analysis
20,2 Two separate focus group interviews were undertaken in March and April 2004,
respectively, each lasting about 1.5 h. The first group interview was conducted in a
self-help center familiar to all its five participants. The second was held in the home of
one of the two participants, a location which both had identified as both “convenient”
and “relaxed”. When compared with the five-member focus group, the two-member
100 group had a disadvantage of restricting the total range of ideas and experiences
stimulated, shared and responded to during the interview. Nevertheless, such an
arrangement was justifiable as HIV/AIDS self-help groups are not homogenous in
nature, and decisions about suitability must also take account of ethical considerations.
The interviewer found that each participant required sometime to warm up. At the
beginning, participants listened to others and waited patiently for their turn. It was
after 15 min of the interview that participants became more responsive to each other.
They became more talkative and expressive, replying to one another. They made
suggestions on how to cope with stigma and discriminatory incidents. The interviewer
also found that the participants compared the degree of stigma experienced and
supported each other. While the pre-set questions facilitated participants’ engagement
with the interview process, as the interviews progressed the interviewer chose to follow
the participants’ discussion flow and occasionally raised a few questions to facilitate
the process, which were pertinent to the research objectives. In this way, the dynamics
within the group decreased the influence of the interviewer over the interview process
and hence gave a more prominent role to the participants, which can help stimulate
their thinking and discussions (Madriz, 2000).
There were also times when participants disagreed with each other. For example,
one participant queried that people had different perceptions on stigma. He raised an
important point on self-stigma. He further encouraged other people to examine whether
they were over-sensitive. The synergistic effect of the group setting resulted in the
production of data that might not have been uncovered in an interviewer-respondent
setting (Stewart and Shamdasani, 1990).
After the first-hand data collection phase, the interviewer transcribed the audio
tapes from Cantonese into English on her own. This could help improve the quality of
the transcription and the analysis, as the interviewer was familiar with the voices of
the participants. The authors reviewed the research aims and focus group interviewing
guide before looking through transcripts. A thematic analysis was adopted, and each
author looked for patterns on an individual basis and compared the preliminary coding
results before further coding was made. The authors finally determined the themes and
sub-themes for the topics discussed by the groups, and selected representative
verbatim quotes regarding these topics and further developed interpretation, analysis
and other emerging themes.

Methodological limitations
Though this research approach permits a number of valuable insights, methodological
limitations clearly exist, and mean that a number of cautionary statements need to be
made. The interviewees participating in the study were all from the same NGO, and the
view of those from other HIV/AIDS self-help groups, NGOs or AIDS clinics, and those
currently in an acute illness phase or in long-term residential care may well differ from
that of members of the sample. Recruiting participants from the same NGO was not so
amenable to the purpose of developing insight into the research topic by means of Stigma and
recruiting extreme, typical, sensitive or critical cases from different areas, agencies or disclosure of
settings (Patton, 1990). For example, drug users might be recruited for a focus group on
the research topic. Moreover, due to the small sample size, the pattern of stigmatization HIV/AIDS status
experiences and coping strategies cannot claim to be representative of the complete
picture of the stigma associated with HIV/AIDS. However, because of the relationship
of trust built up between the interviewer and the respondents, the interview could help 101
to generate fruitful and in-depth discussion and it is essential, therefore, that the results
reported below are considered in that light. In short, they are insightful and significant
for professionals, but they do not claim to be typical or representative of the
experiences of PHAs as a totality. As such their significance for healthcare
professionals and policy makers is circumscribed – though not, we believe, negligible.

Discussion of research findings

For better illustration and illumination of scenarios and situations pertinent to the aims
of the research study, three major themes are developed, namely, enacted stigma in
healthcare settings, non-discriminatory and supportive practice, and finally coping
strategies on the side of older PHAs. After a sophisticated processing and analysis of
verbatim data, several sub-themes are identified under each major theme for
discussing the different aspects of experiences of older PHAs in healthcare settings.
Naturally the healthcare settings have all been anonymised.

Profile of interviewees
All the interviewees were male aged 55 or above at the time of interview, and the age
range was 56-76. All participants received anti-retroviral treatment (abbreviated as
ARV treatment or cocktail therapy) as a result of their full-blown AIDS. Three of them
were married, and the remaining four were single. Four lived alone and three lived with
a friend or family. Three were in receipt of social assistance benefits; two were in paid
employment; two were financially supported by family or others. So of the seven cases
five were economically dependent; and of the two who were not, the income of one was
insufficient for his needs. Hence, only one interviewee was entirely financially
self-sufficient (Table I).

Enacted stigma in healthcare settings

Breach of confidentiality. The stigmatization experience of interviewee 2 was especially
stark, as the doctor in charge announced his positive status, without his consent, to
almost everyone visiting him during his hospitalization.

Interviewee Age Living condition Source of income Marital status

1 66 Live alone Family Single

2 76 Live with a friend Social assistance Married
3 65 Live alone Others Single
4 66 Live alone Social assistance Single
5 64 Live alone Social assistance Single Table I.
6 56 Live with family Employment Married Brief background
7 58 Live with family Employment Married of interviewees
JHOM At the beginning, when I was in the hospital, the doctor said that I couldn’t continue (referring
to death). My status was announced [by the doctor]. All visitors . . . everyone . . . was told that
20,2 I have AIDS and this and that. They all knew. My niece, who is a nurse, she read my file
(medical record) and she never (referring to refuse) sees me again. My wife, my son and
daughter did the same [thing]. I didn’t die and slowly recovered; I was discharged from the
hospital. Then I wasn’t allowed to step into the house and I was sent to an elderly home
(Interviewee 2).
102
Even worse, after a few months, his wife and his children signed a document with the
Social Welfare Department refusing to take care of him any more, and as a
consequence he was forced to live on benefits with his godson. Clearly the doctor in
question had overlooked the possible negative consequences of his unauthorized
disclosure, perhaps on the ground that the patient had not long to live. However, in
Hong Kong as elsewhere, healthcare workers should implement the practice of
protecting the clients’ confidentiality throughout the processes of treatment,
information handling, record keeping, and decision-making. Interviewee 2 also felt
very depressed with his niece’s exclusionary response. In theory there are hospital
regulations in place that restrict access to medical files to healthcare professionals
directly involved in treating the patient, but it seems that such regulations can be
easily breached by those like the niece of interviewee 2 who know the system.
Demanding “voluntary” disclosure. Interviewee 6 informed the researcher that he
heard a lot about discrimination from healthcare professionals from other patients
and self-help group members and how they were treated differently when they
informed their doctors that they were HIV positive. As a result, his strategy was not
to disclose to the doctors or nurses his positive status even when they asked. From
the verbatim transcript below, we can see that interviewee 6 could really feel the
discrimination because the clinic put him into the last appointment even though he
was not the last one going in, and this impression was confirmed by the doctor
during consultation.
When I went into the ENT (ear, nose and throat) clinic, the nurse asked me a few times if I had
infectious disease. Actually I could feel the discrimination because when I was in the clinic, I
wasn’t the last one going in. But they put me into the last appointment . . . Then the doctor
started to ask me why I didn’t inform them about this disease [HIV]. The doctor said what if
he injured himself during the operation and I infected him with HIV, then I would ruin his
family. He said he has wife and children and he is the family support. At that time, I felt very
unhappy because of what he said, but what can I do? (Interviewee 6).
Whether the perceived stigma and anticipated discrimination would still be realized or
not as a result of self-disclosure of the positive status was something uncertain, but
what was certain is that the patient had suffered from being bombarded with a morally
loaded message: destroy the doctor’s future and his whole family if there was any
accidental infection during the surgery. But the fact is that the medical team was
already in possession of the medical history of the patient, and was well informed of his
positive status. So, the key issue is to demand the patient’s disclosure on a voluntary
basis first; if not, the medical team would take the non-disclosure as a kind of moral
irresponsibility that the patient should then become the one to blame.
He (the doctor) actually beautified his action. He said he is the only stupid guy [in the clinic]
who agreed to perform the surgery for me. No other people want to do it. A few nurses were
also present when he lectured me. He also said that none of the nurses were willing to assist
 him with the surgery. The three nurses showed up in the clinic because they drew the bad Stigma and
straw. Such a big discrimination experience for me, so how would l tell other people that I
have HIV? . . . [After that], I dare not to tell the non-AIDS specialists (Interviewee 6). disclosure of
Interviewee 6 is right that the medical team should always exercise universal
HIV/AIDS status
precautions regardless of whether he disclosed his status or not. Insistence on
disclosure followed by moral condemnation for his failure to meet the demand is
something that is too heavy for the patient to bear and inevitably strengthens the 103
patient’s inclination not to disclose his condition to non-AIDS specialists for fear of
experiencing discrimination again. His decision not to consult the ENT clinic again had
resulted in another tangible loss of benefit to the patient, as he had still left one ear deaf
without going through another needed and already appointed surgery!
Exercising stigmatizing precaution. Interviewee 7’s experience of enacted stigma is
implicit, yet still identifiable by him. The doctor did not demand that he disclosed
his positive status. Because he had not previously been hospitalized, the doctor was
not aware of his positive status. That means the doctor did not know his status
before the medical consultation. But he still decided to tell the doctor, who was a
specialist in ENT, about his status, with the consequence that the doctor wrote
“HIV” in large letters on the medical record, thereby alerting others to take extra
precaution.
Interviewee 7: Yes, I told him. He wrote a big HIV on it [medical record]. I asked him why he
wrote such a big word. He said nothing but to remind the healthcare workers cautious
enough. But the word was really big. . .
Interviewer: So after this incident, did you go to other doctors/specialists?
Interviewee 7: No more. I didn’t go to private doctors.
Difficulties regarding the use of dental care. Two interviewees, namely 4 and 5,
highlighted difficulties encountered in the use of dental care, from denial of service to
very poor attitude, which is indeed a great concern to the PHA and the healthcare
workers.
Another big problem comes from the dentists. You tell them [your HIV status], they won’t
accept. It may be related to the sterilization process. . . that’s why they cannot accept. So,
dental service is a problem (Interviewee 4).
The service is even worse than that provided in developing countries . . . I saw the dentist, it
was so quick. I felt like I was in the zoo’. So, the problem is not only about inaccessibility to
dental care, but also about the poor, if not dehumanizing, attitude shown to the patient during
the service consumption process (Interviewee 5).
Double stigma. Of course by no means every non-AIDS specialist behaves in a
discriminatory manner, and there are many examples of good practice as detailed in
the next section. Nonetheless, the experience of interviewee 5 below can alert us of the
fact that sometime double stigma at the hands of health workers on the ground that
AIDS constitutes not only a terminal illness but also a consequence of an immoral
lifestyle, justifying moral condemnation:
Let me give you an example. . . In Hospital A, the ward that I stayed, the nurses and doctors
are very kind and nice, as if you had no disease [AIDS]. But when I was referred to the
physiotherapists at the opposite door, they would say bad words . . . that I am “sui yan”
JHOM (meaning bad guy). I messed around and that’s why I was infected by HIV (laughter
spreading in the group). We had sex, and therefore, we have AIDS. At that time, I really want
20,2 to hit them. They are doctors (referring to physiotherapists) (Interviewee 5).

Non-discriminatory and supportive practice

Not all HIV cases or disclosure results in negative responses, social exclusion or
104 discrimination. It is important to give an account of positive responses in order to give
a balanced picture and to demonstrate the very real possibility of social acceptance and
support for PHAs in Hong Kong.

Sticking to the principle of confidentiality

Various interviewees recalled positive reactions or, at least, a non-discriminatory
attitude from service providers. For example, an AIDS hospice care center offered
interviewee 2 a very different experience.
I have a cousin. He has a university degree, rich. He gave me money. He is kind. He contacted
people from [the hospice care center] and tried to investigate why I was there. No one from the
agency told him a thing. His sister told me that my cousin made some enquiries but found no
clue about my disease. The people (staff) didn’t say anything. It was the hospital [that the
interviewee was hospitalized before] who told others [about my disease]. They informed
every single visitor (Interviewee 2).
Whether the interviewee’s cousin knew from the patient’s family his positive status is
not known. But the contrast between the staff of the AIDS hospice care centre and the
hospital is that that the former maintained the principle of confidentiality even in the
face of personal enquiries from the patient’s relative. This could make the interviewee
feel at ease during his stay in the hospice care centre, and provide him a solid
background upon which he could share his grievances against the hospital staff in a
group that he trusted. This may in the long run, provided with further counseling
support, help release some of his anger and disappointment and prevent further
self-stigmatizing from taking place.
Some AIDS-specialist doctors did advise their patients not to tell ordinary friends
their positive status, and acknowledged their right to disclose their positive status or
not to the non-AIDS-specialist doctors. Hence, the problems following disclosure being
so great, a non-disclosure policy on the part of patients carries the support of some
AIDS specialists.
I didn’t tell my ordinary friends. My doctor told me not to tell them (Interviewee 4).
I had an appointment with hospital B for the ear problem. Before I went to the clinic,
I consulted my AIDS doctor and asked him if I need to inform the ENT clinic about my HIV.
The AIDS doctor gave me the option to disclose or not. So I preferred not to disclose because
of the discrimination stories that I heard of (Interviewee 6).

Referral to the right practitioner

Interviewee 4 had difficulty in finding a dentist, and could not get his dental needs
met until he asked his AIDS specialist doctor to write him a referral letter, and he
shared with the group that “the service is good, very good. I am so lucky”.
As mentioned before, interviewee 5 was not that “lucky”. On the one hand, the
never-giving-up attitude of interviewee 4 should be well appreciated since he could Stigma and
make personal advocacy to appeal to his AIDS specialist doctor for support. On disclosure of
the other hand, the referral was made to the right dentist, who could provide
non-discriminatory and quality dental service to the patient. However, we cannot HIV/AIDS status
underestimate other tangible factors, like patients’ ability to pay for private dental
care. Interviewee 5 was referred to a public dentist. According to his knowledge,
there are only two public dental service centers, and the service was only provided 105
twice weekly. However, we should not conclude that interviewee 5’s inability to
secure access to quality dental services derived simply from bad luck or his
unassertive nature. Rather, because of the deprivation of power and resources
suffered by the patient, he was unable to exercise his formal rights to healthcare.
If structural conditions were more favorable in the sense of thoroughly addressing
the issues of power and resources distribution, there would be less likely to be the
need for patients like interviewees 4 and 5 to go through unnecessary
inconvenience or experience stigmatization.

Towards normalization practice

After his hospitalization experience, interviewee 2 never used the service provided
by that hospital again. During his stay in the AIDS hospice care centre, he
sometimes was transported to seek medical consultation from the AIDS clinic
located in hospital B.
On the way to hospital B, the driver, the [ambulance] staff, they wore uniform, gloves and
masks. It happened. Now the [clinic] has been extended and partitioned. That means privacy.
They don’t make you feel bad (Interviewee 2).
Again, the interviewee can compare and contrast the experience of perceived stigma
generated inside the ambulance and on its way to the clinic with the provision of a
more comfortable physical environment in the AIDS clinic. In listening to the
experiences of interviewee 2, interviewee 3 echoed his comments thus:
. . . [the clinic has] partitions nowadays. They didn’t have this extension in the old days. [We]
went straight into the doctor’s room. Hospital B is my second home (laugh). I went back
yesterday for consultation.
The fact is that there is not any “AIDS” notice right on the door of each of the
consultation rooms of the AIDS clinic. That is also the same practice in the AIDS clinic
C, which is a newly established one when compared with the one in hospital B, in order
that the privacy and confidentiality can be safeguarded.

Coping strategies
Non-disclosure strategy. Interviewees 1, 3, and 6 admitted that they take
non-disclosure as their primal coping strategy so as to avoid different treatment
and probable stigmatization and discrimination. As discussed in the case of
interviewee 6 before, the use of non-disclosure as a coping strategy might not prove
fruitful when the healthcare workers had already got hold of the medical record of
the patients. But if the private doctors, in particular, do not have any access to this
medical record, the use of denial or a non-disclosure strategy can work to conceal
their positive status.
JHOM Who has the courage to tell others? I don’t [have the courage]. And I am not sure if other
patients informed others. It is better not to tell, right? This thing (referring to HIV/AIDS) . . .
20,2 we’ll be discriminated. We all know that (Interviewee 1).
There’s no use to tell other people. If you tell other people, people will put on a pair of color
glasses to see you (meaning see you in a different way). I’d rather have a happy life. I treat
myself as if I have no disease [HIV] and let myself live happily (Interviewee 3).
106
Whenever I have minor illnesses, I don’t go back to AIDS clinic C, say cold or flu. I simply go
to private doctor near where I live. Basically I dare not to tell the doctor about it [HIV]. The
doctor asked me if I have other diseases or infectious disease, I deny . . . If I told the doctor, I
know I will be discriminated against (Interviewee 6).
As far as the use of health care service is concerned, a non-disclosure strategy carries a
potential medical risk, and that is drug interaction particularly if the patient is on ARV
treatment. The experience of interviewee 2 clearly illustrates this point.
When I went to hospital D, I was asked what illness [do I have]? I just told them just
ordinary illnesses. Then a doctor opened my file [from the computer] . . . and turned to
my godson and said to him “he has this disease [HIV]”. My godson said he knew about
this. . . The doctor said that he didn’t mind, but [the patient] will have problems [of drug
interaction] with the medications if he didn’t tell us (Interviewee 2).
But again, just like the case of interviewee 6, there is no need to ask the patient his
positive status, as the doctor could get access to his medical record. But unlike the
discrimination experienced by interviewee 6, the patient was not subjected to moral
bombarding in the healthcare setting.
To interviewee 5, sometimes he could not use the non-disclosure strategy without
experiencing a psychological struggle deep inside. He was afraid that he might infect
others if the sterilization procedures of the dental clinic did not go properly.
I didn’t [tell the dentist]. I should be able to do it myself . . . see my tooth (asking the researcher
to see his tooth) . . . but I need his pain-killer. . . but I was so worried that I might infect other
people . . . what if the dentist didn’t sterilize the needle and I infect others . . . I don’t want to
give my good heart a sin (Interviewee 5).
Normalization strategy. Some of the interviewees informed the researcher that the
policy of integrating the AIDS specialist clinic with the general outpatient clinic and
other specialist clinics is a good practice, as people and patients around could not so
easily identify them as PHA. Thus, they could go into the clinic as normally as
possible.
It is good that there is a general outpatient clinic (referring to AIDS clinic C). If it is completely
isolated, then people will know (referring to one’s HIV status) (Interviewee 1).
I thought . . . [sigh] . . . say in AIDS clinic C. I could take a rest at the sitting out area before I
went up . . . to avoid . . . If there was no outpatient clinic on the first floor, it would be
problematic. Those who go into the building can be easily identified: sunken cheeks . . . like
how we identify the drug users (Interviewee 5).
In the case of interviewee 5, it can be seen that the patient did make an extra effort by
taking a strategic break at the outpatient clinic in order that the normalization strategy
can work out effectively to prevent any possible attack of stigmatization from the
non-PHA patients.
 When compared with interviewee 5, interviewee 6 made much more effort and even Stigma and
at a cost in terms of physical pain for the normalization strategy he acted out. The disclosure of
background is that the residents nearby staged a protest against the availability of
HIV/AIDS service for fear that the PHA seeking care there would spread the disease to HIV/AIDS status
the community. The protest lasted for a few years and did not die down until a few of
the resident leaders were sued by the Equal Opportunities Commission because of their
discrimination against the PHAs (Chan, 2002). 107
I dared not get off the minibus in front of the clinic. At that time, I was very fragile.
I looked tired and pale. If I asked the driver to stop in front of the clinic, the passengers
would naturally turn around and check out who get off in front of the clinic and wonder
who the person was. If you looked awful, the people would think she/he must be
HIV þ . Since, I experienced that twice and the feelings were bad, instead of getting off
in front of the clinic, I got off at the terminal and I walked back to the clinic
(Interviewee 6).
The perceived stigmatization suffered twice by interviewee 6 was unrelated to the
treatment and response of healthcare professionals but related to the location of the
healthcare facility, which is near to a residential community. Unlike AIDS clinic C, the
AIDS clinic of hospital B was established apart from any residential community.
Interviewee 6 preferred the physical pain of walking to the psychological pain of
stigma. To appear normal, he preferred to get off at the minibus terminal and walked
quite a long way back to the clinic even though at that time he was very ill. That kind
of normalization strategy was adopted for almost a year until he felt mentally and
physically a lot better. In his words, “People can’t feel that I am ill. Therefore, now I can
say the clinic name loudly in the minibus.” So, to interviewee 6, the state of his health
and, particularly, appearance determines whether the normalization strategy should be
taken.
Avoidance strategy: seeking AIDS-specialist care only. To avoid any stigmatization,
some of the interviewees, even in the case of minor illness, prefer to seek medical
consultations from AIDS-specialists than from private practitioners.
Ever since I am HIV positive, I didn’t go to private practitioners. If I felt ill, then I go back to
AIDS clinic C. So I never mention [HIV] to others (Interviewee 7).
Interviewee 6 also went for the avoidance strategy taken by interviewee 7, as it is
perceived to be effective to avoid stigmatizing attitude.
So you know some patients . . . they rather go back to the AIDS clinic and not going to clinics
near their home. It is not a matter of money, but to avoid such embarrassing and
discriminating attitude. They tried all their best to go back to the [specialist] clinic. It is only
there that they do not face discrimination (Interviewee 6).
In response to the above remarks, interviewee 7 immediately added that:
. . . [i]n other places, if people said there was no discrimination that must be a lie . . . In reality,
they didn’t say it out, but they act discriminatorily . . . .
In his eyes, only the AIDS-specialists could gain his trust. The avoidance strategy
taken has more disadvantages than advantages, however. The cost that the patients
have to pay includes inconvenience and waiting time, as there is a booking system for
specialist services. Therefore, they cannot get access to immediate treatment, as they
JHOM could do so if private consultation is sought. Another kind of cost is the traveling time
20,2 and traveling cost involved.

Emerging themes
The main aim of the study was to explore subjective views of stigma deriving from the
concrete experiences of older PHAs in their everyday life. Probably because of the
108 atmosphere of mutual trust created by the structure, location and size of the interviews
it was possible to deconstruct at least some aspects of the nature of an epidemic with
which respondents are struggling on a daily basis. In addition to generating a typology
of stigma experiences from verbal statements as discussed above, however, two more
specific themes have emerged which can help illustrate the discriminating behaviours
and structures that affect the lives of the “recipients” of stigma.
Sign of disapproval. In the eyes of the respondents, stigma sometimes represents a
visible instead of an invisible sign of disapproval which permits the “insiders” to
exclude or punish them as “outsiders” or “deviants” who are against accepted norms
and morality (Ainlay et al., 1986; Falk, 2001). The sign can be in the form of words,
stares, embarrassing questions, unnecessary precautions, or even the creation and
sustenance of a hostile atmosphere. To interviewee 7, the letters of HIV put down by
the doctor in his medical file were too large to bear; to interviewee 6, having him moved
to the last appointment was totally unfair; to interviewee 2, putting up unnecessary
precautions was but a humiliating service; to interviewee 6, the hostile community
atmosphere against those seeking treatment in AIDS clinic was but a bias against his
rights to healthcare; to interviewee 5, the poor, if not dehumanizing, service
experienced by him in the dental clinic was a clear sign of disapproval. Sometimes, the
signs are also expanded into moral lessons, either condemning sexual immorality as a
sufficient explanation for the infection, or insisting that patients disclose their positive
status in order to fulfill a moral responsibility not to infect others. Some, though not all,
healthcare workers were reported by respondents as resorting to power and moral
hegemony to maintain effective control in the course of service delivery, an approach
which increased their experience of stigmatization and discrimination.
Power occurs in various forms, such as force, manipulation and persuasion (Wrong,
1988). From this small-scale study, the latter two forms, though seemingly more subtle
and implicit, appear to be quite a common practice. Because of the moral taint adhering
to the respondents, the power gap between the “insiders” and “outsiders” is not only
reproduced but extended into the realm of morality. Stigma reduction programmes
cannot simply be about information dissemination; it is clear from the comments of the
interviewees that much of the stigma comes from the personal value judgments of
healthcare professionals particularly on the moral calibre of the PHAs. Unless the
power dimension is thoroughly addressed, and unless the rights of PHAs to freedom
from discrimination and stigmatization are respected, signs of disapproval or
denigration shown or visualized in different forms will be perpetuated (World Bank,
1997).
Discriminatory practice. Interviewees 2, 6 and 7 discontinued some form of
treatment because of the discriminatory behaviour exercised by healthcare
practitioners. This included breaching confidentiality, demanding patients’
disclosure of their positive status or showing a visible sign of disapproval upon
such disclosure. The case of interviewee 2 is especially striking, as it is clearly a case of
malpractice on the side of practitioner. Neither old age nor terminal situation of the Stigma and
patients should be taken as an excuse to justify the announcement of their positive disclosure of
status. Overall, it can reasonably be claimed that, so far as the small sample of PHAs
involved in this study were concerned, the discriminatory practice of the practitioners HIV/AIDS status
not only caused them very unpleasant stigmatizing feelings, but, even more seriously,
actually came to constitute a barrier to their practical access to healthcare, as a result of
a generalized withdrawal of trust from non-AIDS specialists. 109
The practitioners’ fears of infection which led them to insist on PHAs’ differential
treatment and disclosure were not justifiable. Negative disclosure experiences
inevitably discourage further disclosures both by individual patients and by their
associates resulting in further mistrust between practitioners and patients. Experts in
the AIDS field have warned that stigma and discrimination can prevent those who are
infected from accessing care and support, driving those at risk of HIV infection
underground. Stigma and discrimination can also lead to violations of human rights –
the right to healthcare in the cases of interviewees 2, 6 and 7, for example. Gostin and
Lazzarini (1997) stated that “human rights protect the rights of individuals, and public
health protects the collective good”. Therefore, respecting minorities and their freedom
from stigma and discrimination is for the benefit of both PHAs and the public. In the
words of Mann (1987) “the epidemic of stigma, discrimination and denial. . . is as
central to the global AIDS challenge as the disease itself”.

Implications for practice

On the side of healthcare providers and policy makers
Those who work in the healthcare setting need to address the dilemma of disclosure
versus non-disclosure, and that of approach versus avoidance experienced by the older
PHAs under different circumstances. They also need to acknowledge the wise practice
or strategy of the older PHAs, particularly if they have to confront unreasonable
attitudes and treatment, like breach of confidentiality and the privacy principle,
non-accessibility to non-AIDS generalist and specialist care, unnecessary two-tier
precaution measures, and demanding so-called voluntary disclosure. There is in fact a
big power gap between the providers, the professionals, in particular, and the PHAs.
There are already many manuals on HIV/AIDS largely published by the Department of
Health or the Hong Kong Advisory Council on AIDS, which can be easily made
available to the healthcare workers (Department of Health, 1995, 1997, 1999, 2001;
Hong Kong Advisory Council on AIDS, 1995). What is necessary is for them to read
those published work, relevant to their professional or occupational background, with
a cold mind and a warm heart. Perhaps, the AIDS specialists and medical practitioners
with good practice, who are recognized by older PHAs as being non-discriminatory
and user-friendly during the simultaneous processes of provision and consumption,
could hold up sharing sessions and workshop with the outpatients’ doctors and
non-AIDS specialists across all different sectors, public, private and NGO. To catch the
sympathy and attention of those healthcare workers who are less aware of the
strengths of the PHAs or even hostile to them, these occasions should be practical,
experiential and down-to-earth. Establishing and putting into practice a better
mentoring and supervisory system in helping the non-AIDS professionals and workers
acquire better skills and knowledge, and equally important, attitude and mentality,
may help provided that there is enough support from the concerned medical and
JHOM health authority, i.e. Welfare, Health and Food Bureau, the Hospital Authority, and
20,2 Department of Health in the Hong Kong context.
Apart from measures and policy taken to address the distorted or even alienated
relationship between the providers and users, the provision of tangible services and
support to the PHAs, and the older PHAs in this case, cannot be underestimated. At
present, there are only two AIDS clinics available for PHAs’ specialist consultation,
110 which are all located in Kowloon. PHAs living on Hong Kong Island, or in the New
Territories, need to travel a longer distance and pay a higher cost in terms of forgone
time, physical energy and traveling expenditure spent. Provision of an extra traveling
allowance for those who live a distance from the two clinics can serve as an effective
means to alleviate the problems encountered as far as accessibility to AIDS care is
concerned.
These two clinics are also the strategic points for AIDS specialists to make referrals
to other specialties, and even provide non-specialist care that can be better met by the
outpatient doctors, public or private. The medical and health authorities need to build
up a list of good-practice doctors for internal reference at least so that the referral
system can look more transparent to the AIDS specialists. If the referral is made to
private doctors, the less well-off patients, who constitute the majority of the sample of
the study, and probably the majority of the PHA population as a whole, may find it
very difficult to enjoy any privileged access to private medical and dental care simply
because of their ineffective purchasing power. Financially speaking, it may be a
considerable burden on the AIDS clinics to provide all sorts of care. But the referral
system cannot be made effective unless there exists quite a sizeable number of
non-AIDS doctors, general or specialist practitioners, who can understand and
implement the culture of non-stigmatizing and non-discriminatory practice. If not, any
non-strategic referral out may prove to be a disaster to the PHAs.

On the side of PHAs

Although we can take older PHAs as a whole as a disadvantaged group largely as a
result of AIDS-related stigma, their diverse background should not be overlooked. A
minority of them may be more resourceful in terms of networking and money, and
could, therefore, be able to locate good-practice practitioners and afford more expensive
private health care. Care professionals, including healthcare and social care ones, can
consider better cementing the relationship and network between the resourceful
minority and much more deprived majority, and even the AIDS professionals and
volunteers, and unite them together as an advocacy group to lobby for more support to
the older PHAs, or even the PHA population at large. Of course, there is no excuse for
the care professionals to forsake the principle of confidentiality and privacy in order to
achieve the task goal of external or policy advocacy.
At the end, it is not only about the achievement of task goals, but also about the
process goals which may sometimes be deemed more important, as the task goals like
policy advocacy cannot be achieved within a short term. In addition to individual
counseling services, the self-help group is an effective vehicle to facilitate positive
changes. Within a small group setting, the older PHAs can be encouraged to share not
only their joys and sorrows, their resilience and withdrawal, but also look into the
details of each and every coping tactic and strategy, and weigh its pros and cons,
so that the individuals and the small group as a whole can reflect throughout the
processes of ventilation, sharing and discussion. PHAs could be invited to attend Stigma and
training days or workshops for non-AIDS specific healthcare professionals as one disclosure of
strategy to address stigma in the healthcare sector. Such speakers would add value to
events of this kind by demonstrating sufficient empowerment both to share their HIV/AIDS status
positive living experiences and to critique the personal and structural difficulties they
experienced in negative interactions with professional practitioners (Asia Pacific
Network of People Living with HIV/AIDS, 2004). 111
Naturally, unleashing the power of resistance and participation on the part of
stigmatized PHAs needs to be handled cautiously as well as sensitively, particularly
in view of the fact that they can be so easily subjected to moral blame and social
exclusion. But their involvement and participation are important, as it is all too
clear from the results of the present study that not only can we not assume that the
health professionals and specialists know the reality that the PHAs have to face on
a daily basis, but we can be clear that in at least some cases they do not. The
experiences reported in this study may or may not be typical – our methodology
does not permit us to conclude that they are. Even if they are not, however, it can
reasonably be claimed that even one instance of the kind of bad practice identified
in our research is one too many. There is, therefore, a considerable need for
improved training of medical personnel and for the involvement of patients in that
training. Equally there is a need for the training to focus not only on practitioners’
acquisition of knowledge and information but on locating social skills within a
broader sociological understanding of the consequences of professional power for
the disadvantaged, and on training practitioners in the acquisition and deployment
of strategies designed to minimize the negative, and maximize the positive,
attributes of professional power itself. Only when some such goal is achieved will
PHAs like those in the present study be able to exercise their full political and
social rights to appropriate healthcare, and hence to experience themselves as fully
realized human beings in this vital sphere of existence.

Concluding remarks
The practice of the various coping strategies discussed so far – namely,
non-disclosure, normalization, and avoidance strategy – by the interviewees did not
and will not take place in a social vacuum. If the healthcare setting and the society at
large were free of any stigmatization and discrimination; and if all healthcare
professionals, allied-health auxiliaries, and support workers, whether they are public,
non-governmental, or private ones, were open and non-discriminatory, there would be
no need for the PHA community to use any of these strategies, as far as the access to
and use of health service is concerned. Disclosure would be the best strategy under the
perfect circumstances. Unfortunately, we are still not there.
It does not mean that the PHA group, who are mostly disadvantaged by the
AIDS-stigma, double-stigma or even multi-layers of stigma mediated by sexuality,
racism, classism and so on, does not need to pay any price for exercising these three
specific coping strategies. They most often do pay a price, monetarily (e.g. traveling
cost), physically, mentally, and/or psychologically. The discussion made above has
already illustrated the point that the relationship established between the PHAs and
the healthcare professionals or workers would end up being distorted if there exists no
critical awareness and sensitivity.
JHOM The pressure is not only from the virus itself, but fear from being stigmatized and
20,2 discriminated, perceived or enacted; and exclusion from social relations and networks,
resources, and effective measures that can cope well with the stigmatization and
discrimination processes and structures. The triple hopes of the older PHAs are first of
all, to ask the society not to impose stigma and discrimination upon them; second, to
promote activism or active and meaningful participation among the PHAs and, last but
112 not least, to engage in partnership with the care professionals and the society at large,
so that both tangible and intangible support and resources can be further mobilized.
Stigmatization, devaluation and discrimination of every kind are not unbeatable if the
triple values and wishes stated here can be realized in the face of the many challenges
that lie ahead.

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Further reading
Barbour, R.S. and Kitzinger, J. (Eds) (1999), Developing Focus Group Research: Politics, Theory
and Practice, Sage, London.

Corresponding author
Victor Wong can be contacted at: vicwong@hkbu.edu.hk

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