SIMT 96, Master’s Thesis (One Year)
in Development Studies
Spring Term 2011
Supervisor: Sune Sunesson
Examiner: Max Koch
Graduate School
HIV/AIDS and
Stigma in Vietnam
Author: Thi Minh Thu Tran
“HIV-positive people can also be healthy and attractive, so why not convey this
image too?”
“Many of the women living with HIV have only had one partner their whole lives,
so why are they stigmatised and discriminated against?”
“If society stigmatises PLHIV, and they in turn stigmatise themselves, how do we
break the cycle?”
Health and Development Networks (2006, pp.63-71)
"We can fight stigma. Enlightened laws and policies are key. But it begins with
openness, the courage to speak out. Schools should teach respect and
understanding. Religious leaders should preach tolerance. The media should
condemn prejudice and use its influence to advance social change, from securing
legal protections to ensuring access to health care."
Ban Ki-moon, Secretary-General of the United Nations
“The stigma factor”, The Washington Times (2008, 6th August)
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ABSTRACT
HIV/AIDS puts people in many disadvantages such as losing health, losing
income and reducing life expectancy. However, another grave problem of people
living with HIV/AIDS (PLHAs) is HIV-related stigma. Stigma makes their lives
worse in many aspects materially, physically and mentally. This serious matter,
unfortunately, exists and requires great efforts to deal with.
This essay aims at providing better understanding of the stigma that PLHAs in
Vietnam face in everyday life. The study used a qualitative approach with
empirical field studies, interviews and reviews of existing scientific research.
The study carried out interviews with 35 PLHAs who live in Hanoi and engaged
in self-help networks. Through their sharing and reflections over their situations
and experiences, I try to construct empirical evidences to better understand the
problems of HIV-related stigma and what social work and awareness can be part
solutions to deal with the problems and help to these vulnerable groups of people.
The main findings suggest that despite different social and economic status,
ethnical backgrounds and living circumstances, the PLHAs have experienced with
stigma in relations to their communities, families, hospitals as well as
discrimination against their economic benefits and job access. It is a problem that
requires efforts to address stigma because of the negative attitudes against
HIV/AIDS victims are rooted in people in societies that old customs and
prejudices exist like in Vietnam. It needs efforts of all parties in the society to get
good understanding, knowledge and awareness about HIV/AIDS and to fight
against stigma.
Key words: HIV/AIDS, stigma, Vietnam.
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ACKNOWLEDGEMENTS
In my effort to complete writing this thesis, I have fortunately got a great deal of
support and guidance from a number of people, to whom I am deeply indebted.
Firstly, I feel proud and privileged to be part of the Master Programme of
Development Studies at Lund University. A huge thank to Franz-Michael
Rundquist, Anne Jerneck and Glen Helmstad for your wonderful lectures and
guidance. You taught me to see things critically and systematically. I thank my
talented course-mates, group-mates and opponents for their positive support in
group-works and paper peer-reviews. I also would like to acknowledge Jenny
Hedström, Lina Mann and Ina Knobblock for their kindly administrative help.
My special thanks to Sune Sunesson - my supervisor who has made this work
from the beginning a much more joyful and meaningful process. You helped me
to improve my writing skills to let my thinking and expression become clearer.
You always discussed carefully with me whether your language editing is
appropriate to what I meant. You empower my knowledge through your guidance
and kindness. I heartily thank you!
I am indebted to my former lecturer at Thang Long University in Hanoi – Tran
Thu Trang and her friend – Nguyen Thi Hong Thu for connecting me with the
self-help groups; Oanh, Hien, Ly and Chinh for accompanying me and the selfhelps’ leaders for providing me useful materials and interview arrangements. My
special acknowledgements go to my interview respondents, whose stories and
experiences have enriched my thesis and proven that better understanding and
studies of stigmatism is truly needed. Your expression sharing in this sensitive
topic like “I appreciate who I am now and feel more confident because I can
speak out all the things I did not have any opportunity to do before. The fact that I
can share my own story and experiences with someone who truly and attentively
listens to me and looks at me without any stigma is what I need.” My dear
interview participants, this work is dedicated to you!
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Växjö, Österleden 68B where I have lived for the past two years is among the best
and peaceful places in my life. Thank you, Ulla-Britt Lange and Thomas
Jonasson! You bring a home and a family to me in Sweden. You are special for
me and my family.
I send my warm thankfulness to Le Thanh Forsberg who has energetic influence
on my graduate education and this paper.
To my parents, no word can show you my love and gratitude to you! You have
been loving and raising me in 26 years, giving me spirits and support to a good
and well-educated girl. My brother Lang, thank you for being always strongly
patient and helpful to me even when I am very impatient!
May 2011
tranthiminhthu.vn@gmail.com
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Contents
1. INTRODUCTION ............................................................................................... 1
1.1 Aim of the study ............................................................................................. 2
1.2 Methods and materials ................................................................................... 3
1.2.1 Research design ....................................................................................... 3
Selection of interviews and interviewees ......................................................... 3
Methods of interviews and data collection ....................................................... 5
1.2.2 Materials .................................................................................................. 6
1.3 Structure of the study ..................................................................................... 7
2. LITERATURE REVIEW .................................................................................... 7
2.1 HIV-related stigma ......................................................................................... 7
2.2 HIV/AIDS and stigma in Vietnam ................................................................. 8
3. THEORETICAL FRAMEWORK.....................................................................10
3.1 Theories on stigma and attachment ................................................................ 9
3.2 Social Work as science and in practice with HIV/AIDS and Stigma .......... 14
4. ANALYTICAL FRAMEWORK: HIV/AIDS AND STIGMA IN VIETNAM 16
4.1 HIV/AIDS and global public health ............................................................. 16
4.2 HIV/AIDS and its development in Vietnam .............................................. 177
4.3 HIV-related stigma in Vietnam .................................................................... 19
4.4 Social Work with HIV-related stigma in Vietnam ..................................... 211
5. FINDINGS ....................................................................................................... 222
5.1 Summary of findings .................................................................................. 272
5.2 Discussion and Implications of the findings .............................................. 325
6. CONCLUSIONS ............................................................................................. 365
REFERENCES .................................................................................................... 388
APPENDIX .......................................................................................................... 443
1. INTRODUCTION
It is believed that of those people infected and dead from HIV/AIDS all over the
world, more than 95% are in developing countries. Most of them are 15-49 years
old - the most productive and reproductive age (AIDS and Community Magazine
2005). Many more are affected as part of families with HIV/AIDS patients. The
infection is “devastating the lives of children, bringing to breaking point already
overburdened health care and educations systems, and serious losses in
agricultural and industrial production” (ibid, p.87). Within the context of national
strategies dealing with HIV/AIDS Prevention and Control, the Vietnamese
government has concerned that “HIV/AIDS is a dangerous epidemic, threatening
people’s health and life and the future generations of the nation. HIV/AIDS
directly affects the country’s economic and cultural development, social order and
safety” (ibid, p.70).
The impacts and consequences of HIV/AIDS on health, culture, economy,
education and social aspects are visible and well-understood. However, two
important and related phenomenon for PHLAs are stigma and disclosure of status
(Emlet 2006, p.350). These issues need to be addressed. Some questions have
been raised such as why PLHAs have lost income and sunk into poverty
economically and socially? Why PLHAs are hesitant in seeking care, fail to reveal
their HIV-positive status, fear isolation or rejection and refuse to go after medical
advice? Why health and HIV transmission as well as access to care and support
are affected? (Genberg et al. 2008, Busza 1999). Others have paid attention to
why PLHAs are having “various interpersonal and psychological issues such as
feelings of shame, guilt, fear and anger, mental strain, and feelings of self
loathing… clinical symptoms of antiretroviral therapy”? (Emlet 2006, p.351). All
these questions have related issues to stigma in one way or another. Stigma has
surrounded HIV/AIDS with different levels and manifestations shaped by
regional, national and cultural differences (Busza 1999).
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It is our hypothesis, that HIV-related stigma makes the problems of HIV/AIDS
even worse. HIV-related stigma is well-known, but still more or less invisible in
society, in terms of lack of awareness, knowledge and understanding about
HIV/AIDS and proper actions and behaviour from communities dealing with
stigma and improving the problem.
The Joint United Nations Programme on HIVAIDS (UNAIDS) suggests that
stigma is “universal, occurring in every county and region of the world” (Emlet
2006, p.350). Evidently, PLHAs in Vietnam are facing problems related to
stigmatism. In hope of seeking better understanding, experiences shared by
empirical evidences in Vietnam in this study can contribute to better research and
raise awareness of various problems that PLHAs may face. It also seeks better
understanding for social work to be better designed in dealing with HIV/AIDS,
PLHAs as well as HIV stigma.
1.1 Aim of the study
The main aim of this research is to provide better understanding of the stigma that
PLHAs in Vietnam face, using the interviews as a main qualitative approach to
the issues related to stigmatism. Through the participants of HIV/AIDS patients
and their family members sharing their own stories and experiences, I constructed
empirical evidences of stigma and PLHAs in Vietnam. The study also targets at
analysis of HIV stigma and its implications for design of social work with
PLHAs.
This problem opens to the issues of:
1. How PLHAs experience/live with stigma?
2. What are the most challenging conditions related to stigma that PLHAs in
Vietnam have experienced?
3. Who/which groups can play an important role in supporting them coping
with stigma?
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1.2 Methods and materials
1.2.1 Research design
This study uses qualitative approach to research a social phenomenon. Qualitative
methodology is recommended when the investigator has “(special) interest in how
ordinary people observe and describe their lives” (Silverman 1993:170, cited in
Payne & Payne 2004, p.175). This method makes it possible to link biography and
life histories in a case study. It rarely states hypotheses at the outset of the
research, neither does it use measurable indicators like quantitative methods do,
instead, it makes use of open-ended and cumulative questions and scope (ibid).
Qualitative data are believed to be “rich”, “full” and “real” in narratives, accounts
and other collections of words even if it “requires” clear thinking on the part of
the analyst … to process information in a meaningful and useful manner” (Robson
2002, pp.455-459).
I used a combination of in-depth interviews and reviews of available literature
including scholarly research, official reports as well as articles published in media
in Vietnam. Focusing on the sociological perspectives of the HIV-related stigma
in Vietnam, I aim at raising awareness and better understanding of the stigmatism
against PLHAs, and draw out ways for social work to design better interventions
in working with HIV/AIDS and against stigma. Hence, interviews resulted from
viewpoints directly reflected and shared by the PLHAs through their own stories
and experiences form the primary source of this study.
Selection of interviews and interviewees
The interviews were carried out in Hanoi, the capital city and main cultural,
political, socioeconomic and educational center of Vietnam. About 6.5 million
inhabitants are living in Hanoi 2009 (Wikipedia). According to official reports by
the Ministry of Health, the city has 22,078 registered PLHAs at the end of 2010
including 8,409 AIDS patients and 3,591 cases died of AIDS (VTV6/ 2011). Due
to this fact and awareness of the need to establish self-help group, so far there
have been 10 out of 102 self-help groups in Vietnam (SPNPLUS). These self-help
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groups were my main channels of contacts to the PLHAs who are members of
these self-help groups, and they therefore need a special address for making part
of my study methods.
Participants in the study were 35 PLHAs (10 males and 25 females) from three
self-help groups (one group was Christianity and met weekly in a church for
religious practice or HIV/AIDS-related activities). Of those interviewees, three
have stayed at rehabilitation centers and actively joined activities on HIV/AIDS
intervention or peer education in the centers. Two respondents appeared
voluntarily on public televisions for their HIV-disclosure. The participants were
living and working in Hanoi but many of them were immigrants to Hanoi. The
interviewees were born in the period of 1970-1986 and all were literate with
education from primary school to university. The participants have taken part in
one self-help group or more as they would like to get most support. Regarding
their occupation, 12 of them were official volunteers employed in projects on
HIV/AIDS cooperated between their self-help groups and (international) nongovernmental organisations in communities, one worked as a nurse, one was an
accountant, one worked as a cook, six were workers and the rest were seasonemployees.
For the scope of this study focusing on how PLHAs in Vietnam experience/live
with stigma, and who/which groups play an important role in supporting them
coping with stigma of PLHAs aged 25-41, I chose to approach PLHAs who are
participants of different self-help groups. The purpose is to find a way to groups
who are willing to share and expose to questions to their situations because
circumstances in the country revealed that it is not always easy to approach
PLHAs due to the lack of systematic public health care and information that
prevents the public from getting access to know them.
Accordingly, there are limitations to the selection of interviewees that focus on
mainly on PLHAs as participants of the self-help groups. The participants have all
taken part in activities of self-help groups, therefore, they have got advantages or
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support mentally to some extent. This means that this study could not reach to the
more disadvantaged groups of PLHAs such as those who are living in remote and
poor rural areas far from the self-help groups and perhaps suffer more from
poverty and isolation. Hence, results and suggestions made from these informants
and observations can be incomplete to any conclusions that go beyond the scope
of this study. For a comprehensive study of HIV-related stigma in Vietnam, it
requires inclusions of PLHAs from different social groups, backgrounds, ethnics,
the economic better-off and the more disadvantaged. It also requires major
interdisciplinary research that look into medical science, sociological as well as
psychological challenges to the HIV-related stigma problems.
Methods of interviews and data collection
Since HIV/AIDS in general and HIV-related stigma in particular is a sensitive
matter, ethical consideration has been carefully taken into account with the moral
implications of formal or informal consent, confidentiality and consequences.
From personal relationship and the list of self-help groups in a leaflet, the leaders
of the self-help groups were approached. They then helped arrange the interviews
between me and their members. All the participants decided themselves to answer
the questionnaire and gave me a permission to use the information provided by
them for my thesis only. Therefore, to protect them, no name or interview record
is revealed or published. Instead, they have been safe stored meaning that no one
else besides me can access the data. At the same time, both the interviewer and
interviewees signed on the consent form and each party kept one copy as a base of
rights and responsibilities to each other legally. However, members of one group
did not need this legal form. They said to me: “I trust you. Moreover, no one
before you has asked me such questions that I wanted to be asked and shared. WePLHAs want our voice and stories to be heard”. Accordingly, we kept informal
consents by spoken contract.
The method of interviews was semi-structured, tape-recorded and note-taken.
Before starting the interview, the informants were provided appropriate and
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essential information about the study as well as their rights to withdrawal. They
also had a chance to ask me questions related to the research until they were
satisfied with the answers. Totally, the study got 35 interviews whose length
varied from less than 11 minutes to 48 minutes for 20 questions. The interviews
were conducted face-to-face and one-by-one in the private space of offices or the
living room of the respondents, and in a church. In one evening I did interviews
with 10 participants, another evening with 6 respondents, one afternoon with one
woman and the rest in their homes.
Interviewing 35 people was time- and money1 consuming. Problems of arranging
time or rescheduling interviews took a lot of time. On the other hand, it had the
benefit of a high response rate and good quality of response from the informants
in a mutual respect and interpersonal character. Recording and note-taking during
interviews contribute interviewees’ exact information for analysis and discussion.
1.2.2 Materials
Primary and secondary data were used, including available scholarly research on
HIV/AIDS in relations to global public health and studies of stigmatism and HIV-related
stigma. Research and official reports on HIV/AIDS and its related stigma in Vietnam
were consulted and collected. The materials covering this problem in Vietnam included
previous research in both qualitative and quantitative studies, sociological as well as
medical disciplines. Apart from scholarly and official reports, publications on social
media such as internet and television were also used to cover the public debate on
HIV/AIDS and its related socio-economic problems to community and to PLHAs.
1
Little money-financial support for the participants is a common tradition of doing research in
Vietnam.
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1.3 Structure of the study
Apart from the Introduction part, the following chapters continue beginning with
Chapter 2 that provides an overview of research on HIV/AIDS-related stigma in
general and in Vietnam in particular. This chapter also highlights what and how
social work as science and in practice works with stigma. Chapter 3 discussed
theoretical considerations on stigma as foundation for the analysis of the empirical
evidences on the nature of stigma and what can help against stigma. Chapter 4
analyses the situation of HIV/AIDS and the stigmatism in Vietnam. It begins with
discussion of the HIV/AIDS in relation to global public health and public
awareness. Following is the discussion of the HIV/AIDS and its related stigma
problems in Vietnam, and what the role of social work in dealing with the
problem stigma and PLHAs in Vietnam has been. Major findings are presented
and discussed in Chapter 5. Finally, conclusions are drawn in Chapter 6 with a
summary and reflections on the methods and findings of the study.
2. LITERATURE REVIEW
2.1 HIV-related stigma
Numerous research efforts on HIV-related stigma in various fields have been done
to examine impacts of stigma on PLHAs in order to make interventions reducing
the problem. According to Busza (1999), stigma is a defining characteristic and
tangibly and/or intangibly understood. Stigma separates the affected people or
groups from the normalised social order. This separation is considered a
devaluation.
Geographically, research has been done in developing countries, in China, in
Africa, in the United States of America and elsewhere to access HIV/AIDS stigma
and discrimination (see Busza 1999, Genberg et al. 2008, Galvan et al. 2008, Leah
and Stephen 2007). These research have attempted to measure HIV-related stigma
among health professionals, to challenge stigma by association and to access
knowledge on HIV-related stigma – its prevalence and trends. In addition,
7
scholars have written about theory and method used to analyse the layering of
HIV-related stigma and discrimination in health care (see Reidpath and Chan
2005, Rintamaki et al. 2006, Emlet 2006, Liz 2007).
Psychologically and sociologically, it is also a contribution of research on the role
of stigma in reasons for HIV disclosure and non-disclosure to children, a
comparison of HIV stigma and disclosure patterns between older and younger
adults living with HIV/AIDS, impact of stigma on health behaviour and
psychological adjustment, or felt and enacted stigma and challenges to the
sociology of chronic and disabling conditions (Emlet 2006, Vanable et al. 2006,
Ostrom et al. 2006). Furthermore, researchers have tried to relate social stigma
concerns and HIV medication adherence to conditions of social support among
African Americans, which are results that very topical for my Hanoi study (see
Galvan et al. 2008, Rintamaki et al. 2006).
2.2 HIV/AIDS and stigma in Vietnam
Vietnam belongs to the Southeast Asian region where HIV/AIDS infected level is
relatively high. Nevertheless, research available PLHAs in Vietnam are limited
although international aid given by governmental and international donors and
International NGOS to fight against HIV/AIDs are resourceful. The majority of
research on HIV/AIDs in Vietnam exists in forms of country study reports or
policy interventions by international organizations such as UNICEF, UNFPA and
WHO on public health. USAID and American NGOs are also active donors to
HIV/AIDs as part of supporting public health in Vietnam. The main data on
HIV/AIDS are case reporting based on a national HIV/AIDS surveillance system
spreading among 40 provinces, out of 64 provinces. The government has begun to
report HIV/AIDs cases in all provinces. Nevertheless, many reports are stopped at
numbers of people infected and what it means to the society in terms of socioeconomic losses and burdens, and how to treat them medically. Even so it is also
difficult to disclose HIV/AIDS infected people as modern and systematic testings
are not available in all provinces. Hence, the actual figures of HIV/AIDS infected
8
are believed much higher than the government official reports. Furthermore, there
is no single centralized or harmonized system of demographic and public health
statistical surveillance system in the country. Therefore, there are cases that
PLHAs exist in small social groups and in remote parts of the country that are
never evident in any official statistics or reports.
The main official research on the HIV/AIDs is done by the Ministry of Health
called AIDS and Community Magazine that publishes case reporting and
analyzing of solutions to treatments. However, it is often focused on medical
treatments and disclosure of new patients. Government official policy reports and
research often focus on the impacts and consequences of HIV/AIDS on health,
culture, economy, education and social aspects in order to develop strategies for
HIV/AIDS prevention and control. There is still a lack of attention in research and
policy interventions to what are the problems in terms of cultural, social and
economic factors that oppose to the already problematic situations faced by
PLHAs in Vietnam. Stigmatism exists, but it is not entirely evident in research or
public awareness.
The Vietnamese government has paid special attention to HIV/AIDS as a
dangerous epidemic, threatening people’s health and life and the future
generations of the nation. HIV/AIDS directly affects the country’s economic and
cultural development, social order and safety (AIDS and Community Magazine
2005, p.70). Hence, government official reports and research rather focus on the
medical science or economic resources imposed to and by HIV/AIDS. Resources
are allocated accordingly to this direction rather than curing and improving the
situation of those who are PLHAs. This view reflects the tendency of official
perceptions and policy viewpoints when dealing with HIV/AIDS. Existing
research pays attention on investigation of medical factors to epidemic of
HIV/AIDS and prevention measures to this public health problem such as Quan et
al. (2000) and Tram et al. (2008). There are comparative studies on the risk
factors and disease infection between groups of people and regions in Vietnam.
9
Nguyen et al. (2008) focused on risk factors and how HIV/AIDS transmits among
women in Vietnam.
What seems still missing is a two-way communication and perceptions on
HIV/AIDS and PLHAs, as well as stigmatism against them. Addressing problems
the infected and PLHAs have been facing in their social and economic life is still
very limited. This problem also highlights a fact that there is a lack of available
research on existing problems to PLHAs, especially from social factors that
influence the situation of PLHAs, and their own viewpoints.
The best available research on HIV/AIDS and stigma against PLHAs in Vietnam
are perhaps Oanh et al (2008), Hong et al. (2004), Nyblade et al. 2008 and Brickly
et al. 2009. Oanh et al (2008) addressed HIV-related stigma and discrimination,
and improve the quality of care in the health care setting in VN using baseline and
endline surveys and qualitative interviews with staff from the different study
hospitals, observations of hospital practices and monthly reports. Hong et al.
(2004) provided a broad and comprehensive study of causes and effects of stigma
to PLHAs through sociological and anthropological approaches to interview
various social groups such as PLHAs and their family members and neighbours,
local health officials, the most vulnerable groups to HIV/AIDS such as prostitutes.
Nyblade et al. (2008) focused on how community support and interventions can
help reduce HIV stigma through provincial case studies. Brickly et al. (2009)
carried out a qualitative study to explore discrimination experienced by HIVpositive pregnant and postpartum women in Ho Chi Minh City at home and in the
community using results from 20 in-depth interviews and two focus group
discussions
3. THEORETICAL FRAMEWORK
3.1 Theories on stigma and attachment
Theories are considered pillars to help arguments become stronger by the
explanations to the phenomenon. They together with practical evidence and
10
discussion make the phenomenon comprehensive as a whole. Theory on stigma by
Goffman (1990) is well-know and applicable to many stigma-related cases,
including HIV/AIDS. When people are stigmatised, they have to find a way to be
better in the situation. The most common way is to attach themselves to someone
or something. The Attachment theory developed by John Bowlby can shed light
on explaining stigma and how stigmatized people feel and can get help.
The term stigma originated in ancient Greek times long before Christian times,
and referred to bodily signs cut or burnt on the skin of a slave, a traitor or a
criminal. With the sign, the person was considered ritually polluted leading to
being fully unaccepted and avoided. Then the Christian added the metaphor of
holy grace connected to bodily signs (eruptive blossoms) and also a medical
allusion of physical disability.
According to Goffman (1990) Stigma categorises people and relates to a negative
stereotype. It leads to a discrepancy between virtual social identity and actual
identity. Hence, stigma is not a quality in itself, instead, a relational property. The
stigmatised individual can be discredited (stigma visible), potentially discredited
(stigma hidden). There are three types of stigma namely physical deformities
(handicapped), blemishes of character (mental illness) that can be disclosed and
tribal stigma (ethnicity, race, religion, nationality) that can be open or hidden.
Some types of stigma are inherited and encompass the whole family. Sometimes,
stigma can be diminished or disappeared.
Goffman (1990) demonstrated that relations (meeting) between the normals and
the stigmatised shows that a certain stigmatised trait imposes itself, and thereby
dominates all other (normal) traits. When the confrontation ends up in rejection is
the time of discrimination. With regard to meeting face-to-face, stigma makes
interaction tense and uncertain. Stigma is a kind of shadow (over-shadowing, for
example one member of family is a criminal, this results a criminal shadow over
the whole family). The stigmatised will oscillate between being humble (grateful)
and being hostile, arrogant (rejecting). The stigmatised people mostly contact with
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their own group/category for backing (support) and learning how to live/handle
with stigma. Often, the group or representatives for the category organise openly
stand up for their rights in society and thereby give new meaning of their
category.
According to Goffman (1990), the possible ways to deal with a stigma problem
are two: in-group alignment or out-group alignment. The in-group alignment
requires a person to be with people who are like him/her, be loyal to people like
himself/herself with the same stigma. That is their real group – tendency to reject
the normal, authentic, militant emphasising on difference (how to be proud and
independent). The out-group alignment tells people to see themselves from the
standpoint of normal people that they are fully human, not a type or category, they
should train themselves, and try to be normal. Identity and self-conscience of the
people being affected by stigma and the general identity-values in the society are
very important factors to stigmatism as they can entrench or cast shadow over the
group of people living with stigma due to their diseases or differences (p. 153).
Scambler (2004, p.36-38) considers that the principle conceptual innovation
associated with the hidden distress model of epilepsy was the demarcation of
deviance and stigma. It remains important to distinguish socio-culturally between
“doing wrong” and “being wrong”, between immorality and imperfection. The
sick role itself generates opportunities for further deviant behaviour, notably
around its entrances and exits. Illness tarred with the brush of stigma provides yet
another dimension of negativity. It does not only constitute and afford
opportunities for deviance but it is also an evidence of a deep inadequacy or
imperfection in its bearer. According to Scambler (2004), norms of identity or
being are the products of many different causes. Relations of class and command
may be highly and increasingly pertinent as generative mechanisms, but there are
numerous others. Relations of gender, ethnicity and age furnish obvious
examples. Sociology acknowledgement is required too of a logic of shame that
requires/orders/establishes the parameters for relations of stigma that might be
studied in figurations ranging from the micro-world of the individual household or
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office to the macro-worlds of global exchange. Such a logic of shame might in
different figurations issue in relations of stigma which are (1) categorical (2)
derivative, (3) circumstantial, and their interrelations across numerous and various
figurations (p. 40).
Vanable et al. (2006, p.473) argued that stigma was associated with depressive
symptoms, receiving recent psychiatric care, and greater HIV-related symptoms.
Stigma was also associated with poorer adherence and more frequent serostatus
disclosure to people other than sexual partners, but showed no association to
sexual risk behaviour. In a multivariate analysis that controlled for all correlates,
depression, poor adherence, and serostatus disclosure remained as independent
correlates of stigma-related experiences. Findings confirm that stigma is
associated with psychological adjustment and adherence difficulties and is
experienced more commonly among people who disclose their HIV status to a
broad range of social contacts. Stigma should be addressed in stress management,
health promotion, and medication adherence interventions for HIV-positive
people.
In the 1950s, John Bowlby - a British psychoanalyst, was the first one to develop
attachment theory and saw it “as an explanation of social and personality
development through the life span” (Sonia and Toni 2008, p.365). Following this
theory, from the beginning to the end of life the role of relationships and
attachment behaviour in human development is very essential. Interestingly, the
term “mother” for Bowlby meant a caregiver rather than a biological mother, and
it forms the mother-child bond or an intimate relationship of safety and security.
Moreover, attachment figures closely go hand in hand with initial relationships to
feed mental health, especially in terms of emotional support and protection. Two
assumptions of this theory have been proved correct during the last two decades
that in early life the attachment patterns are set up and keep stable in all
developmental phases; and pair-bond relationships represent attachment in
adulthood. This representation of adult attachment can be seen when a person
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looks for getting comfort and safety from their partner and wishes to be with the
partner, essentially in case of stress (ibid).
Over time, the theory was evolved and influenced by psychology, biology,
cognitive theory and evolutionary theory. Increasingly, many scholars have got
interested in the attachment theory’s ideas and developed it. All in all,
fundamental components of attachment are seeking security or comfort from a
relationship. Open communication, physical accessibility, responsiveness,
emotional engagement also play a key role for an individual to unite the
attachment figures and make attachment figures remain available. Different
attachment styles reflect the experiences of a person. By experience, the person
can learn strategies to organise emotion and deal with negative sentiments. In this
respect, there are three styles of attachment adaptation, namely protected by
mothering, insecure and preoccupied. People that more been “mothered” and thus
protected constructively acknowledge sorrow and seek support from others. While
the insecure confines acknowledgement and expressions of bad feelings. The
preoccupied would maintain the contact with others by demonstrating sensitive
awareness and expression of negative feelings. Hence, attachment styles, the
environmental and biological factors have an influence on a person’s personal and
professional life as well as their development.
3.2 Social Work as science and in practice with HIV/AIDS and Stigma
Richard (2007) argues that social work theories and social work practice go hand
in hand. There are two main perspectives on social work theory – the technicalrational and the generative which show different point of views on social work
practice. The social worker by understanding these different approaches can know
how to apply theories to practice, or in other words, how to help their clients.
Highlighted in the argument is that “The primary mission of the social work
profession is to enhance human well-being and help meet the basic human needs
of all people, with particular attention to the needs and empowerment of people
who are vulnerable, oppressed, and living in poverty” (ibid, p.68). Thus, social
14
work is seen as “one form of human activity” in which it works with
empowerment, oppression, individual well-being, and so on (ibid, p.84).
“Social work research has been applied in various contexts and specialised fields”
and one of these has been tackled the rising incidence of HIV/AIDS (Vishanthie
and Tanusha 2005, p.264). Working with HIV/AIDS would mean that working
with stigma. “Stigma could be seen as an emotional response to danger that helps
people to feel safer – [that] it is not a rational or even conscious process” (Liz
2007, p.92). Hence, confronting HIV-related stigma is fighting with fear and
prejudice. By now, social work has found ways to deal with it, of those is the
effective educational interventions that centred local context and meaning
associated with HIV/AIDS linking community-based with skills-building,
counseling and social interaction programmes (ibid). At the same time, educators
teach that stigma is a social problem. It needs to be linked clearly and discussed
openly in line with social prejudice, social exclusion and disease. Therefore,
social work stresses the need to challenge oppression and injustice, seeking to
alleviate suffering and hardship. In sum, social work takes a responsibility for
social change and social justice. Confronting HIV-related stigma is challenging
but encouraging (ibid).
HIV-related stigma is one of social problems that Social Work has been dealing
with. Social Work has its own ethics, theories, practices as well as missions.
Nothing is easy to reach, especially in the social areas namely HIV-related stigma.
There is a heavy task for social work to make the vulnerable more well-being,
more empowered by changing societies and gaining social justice for the
disadvantaged. This mission can be fulfilled if cooperation between and among
people and fields is implemented.
According to Liz (2007), it is problematic to suggest that stigma will always foster
social inequality. Understanding HIV-related stigma (and stigma by association)
thus requires an analysis that integrates individual and social levels of
explanation. Disease stigma is a process whereby people use splitting of the good
15
and the bad to forge protected identities by projecting risk and deviance onto outgroups. Community mobilisation, advocacy and social change, where the voices
of stigmatised populations and communities are central, need to be part of multiagency programmes of intervention aimed at resisting HIV/AIDS-related stigma
(p.81).
4. ANALYTICAL
VIETNAM
FRAMEWORK:
HIV/AIDS
AND
STIGMA
IN
Following a provided overview and problem of HIV/AIDS in Vietnam, this
section presents in more detailed how and how much HIV/AIDS has been
developed in Vietnam, how and why people stigmatise PLHAs and what the
Government, organisations and self-help groups have given a hand to PLHAs in
fighting with HIV/AIDS and stigma.
4.1 HIV/AIDS and global public health
Even if effective intervention and prevention strategies have been applied in all
parts of the world, the first highlighting point in the “2004 report on the global
AIDS epidemic” is the increase of HIV-infected cases, especially among women.
In 1997, women were 41% of PLHAs, then the figure climbed up to nearly 50%
by 2002 (UNAIDS 2004, p.22). This global increase shows global inequality in
the sense that although it is hard to compare the causes between or among regions,
it is obvious that gender inequalities particularly of the sexual relationship’s rules
for men and women have a great importance.
An illustration of the vulnerable groups at greatest risks regionally is that in many
countries in Sub-Saharan Africa – “the hardest-hit region” (UNAIDS 2004, p.26)
a tremendously high proportion of the HIV-infected population are pregnant
women at the age of 15-24. Africa hosts 10% of the world’s population and 70%
of the HIV-infected. This has caused life expectancy at birth drop from “59 years
in the early 1990s” to “45 years between 2005 and 2010” (Leah and Stephen
2007, p.331). In Asia, the pandemic largely extends to injecting drug users
16
(IDUs), sex workers (SWs), clients of sex workers and their direct sexual partners,
and men who have sex with men (MSM). Nevertheless, there is no adequate
effective prevention programmes for these groups. In accordance with the case of
Asia, injecting drug users are the main victims of diverse epidemics in Eastern
Europe and Central Asia. Similarly, sex between men and drug injecting are the
most common reasons for infection in high-income countries in Western Europe
and North America. Lastly, it is deemed that 11 countries in Latin America and
the Caribbean have a HIV prevalence accounting for 1% or more of the
population in each country (ibid).
According to UNAIDS (2004), the picture of the HIV epidemic worldwide
expresses the rise of risk behaviour, such as unsafe or unprotected sex between
client and sex worker and unclean needle used by drug users. Again, women
(stressing on African women) increasingly face greater danger. Furthermore,
human mobility is a main driving force in this problem.
It is considered that the AIDS epidemic is extremely active, and has great and
changing consequences, and there are new chances for the virus to develop the
spread. As a result, no part of the world is unaffected. Therefore, finances, donors
and funding have been actively making a difference in controlling HIV
transmission and bringing back quality of life to PLHAs and their families
(UNAIDS, 2004).
4.2 HIV/AIDS and its development in Vietnam
The first reported case of HIV infection in Vietnam was known in December 1990
in Ho Chi Minh city (Nguyen et al., 2008 and Colby et al., 2004). In 1992, 11
cases were reported. By the end of 2002, the growing number of infections got
59,200 totally. The situation went worse by 31st December 2004 with 90,380
cases of HIV including 14,428 AIDS patients and 8,398 deaths (IPU, UNAIDS
and UNDP 2007). In December 2005, all 64 provinces of the country had HIVinfected people accounting for 104,111 totally with 13,731 new infections, 17,289
AIDS patients and 10,071 deaths (Nguyen et al., 2008). The development of the
17
pandemic is apprehensive with the estimation of
310,975 HIV patients in
Vietnam in 2010 (Tram et al. 2008).
It is important to note that these figures imply that the number of infected people
is rising rapidly, and these figures are relative because there are testings and
disclosure method problems. The Vietnamese health statistics have also problems
in terms of validity and accuracy.
According to the AIDs and Community Magazine (2005) there are increasing
HIV/AIDs infected among young people, aged 15-19. The HIV pandemic
intensifies among Vietnamese IDUs, SWs and increases among MSM.
Additionally, Vietnamese women who are at increasing-risk of HIV transmission
but under-reported and under-recognised may affect the spread of infection among
the general population (Nguyen et al. 2008). Both Oanh et al. (2008) and Nguyen
et al. (2008) find that HIV/AIDS is a concentrated pandemic in Vietnam. This
epidemic presents 23% occurrence rates among IDUs, 9% in the group of MSM
and 4.2% among SWs as well as an increase in HIV prevalence in all other
population groups, in 2007, on average, 0.53% of the Vietnamese infected with
HIV (Oanh et al., 2008).
According to Nguyen et al. (2008), the pandemic targets youngster mostly male
aged under 29 years. HIV infection may give under-protected or unprepared risks
to other population, particularly women; in 2005, 33% of the 263,000 PLHAs
were Vietnamese women. The number of HIV-IDUs differs from region to region
in the country (Quan et al. 2000). In the big cities, the HIV prevalence among
IDUs has been increasing sharply because of risk behaviour like “sharing needles,
syringes and drug solutions from the same drug pot in shooting galleries” (Hien et
al. 2000, p.483). HIV prevalence among SWs also has been growing rapidly in
periods, like from 0% to 13.2% during 1996-1999 (Quan et al. 2000, p.360).
MSM, including male SWs in urban areas, “are increasing in number and
visibility” (Colby et al. 2004, p.45).
18
According to Colby et al. (2004) MSM have a mistaken belief or low perception
of high risk, inadequate knowledge of HIV transmission, and lack of attention
from the media and public health programmes, causing MSM to inactively protect
themselves from HIV infection. It is necessary to address the social context of
HIV risk behaviour in drug injectors or men who have sex with men to understand
a hidden HIV epidemic among Vietnamese women and their experiences of
community, family and partner-related stigma. Awareness about heavy stigma
towards PLHAs in hospitals and communities is not always reflected well in
research on HIV-related stigma in Vietnam.
4.3 HIV-related stigma in Vietnam
The majority of people living with HIV/AIDS in Vietnam are at the age of 15-49
years, according to AIDS Community Magazine (2005). This implies that it hit
people at the most fertile and productive phases of a person’s life. In Vietnam,
HIV/AIDS goes together with stigma that has many roots, most commonly in
association with marginalised people such as sex workers and injecting drug
users. HIV-related stigma is manifested in various forms and prevalent settings.
Nyblade et al. (2008) notify three drivers of stigma in Vietnam namely fear-driven
stigma that includes lack of awareness and understanding of stigma and fear of
HIV contamination through casual contact, and value-driven stigma (value linking
with HIV with immoral behaviours). At the same time, Hong et al. (2004)
conclude reason of this situation HIV-related stigma is fear of HIV
transmission/infection and making moral judgments against people with HIV due
to the association of the disease with the “social evil” of drug use and sex work.
Moreover, there has been insufficient mass media and misperceptions in public
debates on HIV/AIDS, such as confusing HIV/AIDS with social evils, using
stigmatising vocabulary,
associating HIV/AIDS
with
death,
associating
HIV/AIDS with unnecessary fears and incorrect use or interpretation of
HIV/AIDS data (AIDS and Community Magazine 2005, pp.130-132).
19
All these contribute to problems that PLHAs have been refused from employment
and sacked from work; children have been refused schooling; families and
communities have shunned people; health care workers have refused to treat
people. At the same time, PLHAs do not want to reveal their status to outsiders or
even their family’s members. This problem leads to worsen their living conditions
as they cannot reach social support or health-care from authorities and public
organizations (Hong et al 2004, Brickly et al. 2009, Oanh et al. 2008).
Hong et al. (2004) focused on causes and effects of HIV stigma on PLHAs and
found that the causes behind stigma in communities, hospitals and even in
PLHAs’ families are the results of lack of knowledge, moral empathy and
awareness as well as fears of HIV transmission through usual contacts. It is also
part of the social customs and misperceptions of HIV. Some even consider
infected HIV people as “social evils”, isolating them from having equal rights to
access to education, hospital care and renewals of their jobs. Oanh et al. (2008)
found that high levels of fear-based stigma and value-based stigma were evident
among hospital workers against HIV infected people despite their sympathy and
mercy for patients with HIV. It is also highlighted that there is absence of a
positive hospital policy and hospital practices towards PLHAs (p.45).
Nyblade et al. (2008) demonstrate that a combination of community-led activities,
developed using participatory methodologies in Quang Ninh and Can Tho
provinces, significantly reduced stigma by shifting three specific and immediately
actionable divers of stigma: lack of awareness and understanding of stigma, fear
of HIV-infection through casual contact, and value linking HIV with moral
behaviours. Their findings suggest that the challenges that the health communities
face are in changing deeply rooted attitudes and beliefs towards HIV/AIDs and
PLHAs (pp.25-26). Blickly et al. (2009) studied community, family and partnerrelated stigma experienced by pregnant women with HIV in Ho Chi Minh City.
Their findings highlight the need for targeted interventions to support pregnant
women and post-partum women with HIV, particularly during the period when
they are connected to the healthcare system and that counseling is missing.
20
4.4 Social Work with HIV-related stigma in Vietnam
Social work and community support to HIV/AIDS and PLHAs have begun to
pick up thanks to major contribution by international organisations and NGOS in
Vietnam. Generous funds are allocated to community-based organisations such as
self-help groups at various local levels. Vietnamese NGOs are many, but still lack
of full political support from the government and social work is a new area of
support as well as a profession in the country.
According to Vuong et al. (2010), activities are progressively needed to
accommodate the various needs of PLHAs and their families. The concentration
has insofar paid on health care and income support to enhance their health, to
promote healthy life-styles to thousands of PLHAs, to advocate for PLHAs’ rights
and to tackle stigma and discrimination. 32 out of 58 international organisations
working on HIV/AIDS prevention in Vietnam focus on drug users and there are
nine organizations working on sex workers and men who have sex with men.
Other support programmes focus on raising awareness and sentinel surveillance
(Nguyen et al., 2008).
Furthermore, socio-political organisations such as the Women’s Union, the
Federation of Trade Union, the Youth Union, the Fatherland Front and the
Vietnam Red Cross in combination with religious organisations have contributed
significantly to PLHAs and community on health education, information,
consultancy, training, communication, care and support (AIDS and Community
Magazine 2005).
Networks of self-help group such as Bright Future Network (BFN) and Vietnam
Network of People Living with HIV/AIDS (VNP+) present a great practical
contribution to PLHAs. BFN founded in January 2003 is believed the first and
strongest self-help group of PLHAs in Vietnam. Nowadays, BFN hosts 26 groups
in 16 provinces with 4000 members (Vuong et al. 2010). VNP+ established in
August 2008 gathers 70 self-help groups, unions, and provincial networks of
PLHAs nationwide (VNPPLUS). These two networks in cooperation with the
21
organisations advance its membership in strengthening PLHAs’ participation in
HIV/AIDS
intervention
and
prevention,
capacity
building,
information
sharing/providing, anti-stigma and discrimination by policy/community advocacy
and so on.
So far, the Government, organisations and networks have made progress in
reducing stigma by raising awareness in society, providing more care to PLHAs
mentally and materially and helping them meet basic human needs and shrink
oppression and poverty. PLHAs, thus, have become more well-being, confident
and integrated into society.
5. FINDINGS
5.1 Summary of findings
This study investigates mainly personal HIV-history of the respondents from
when/how they got HIV-positive confirmation to their experience living with
HIV-related stigma happenings afterwards. The findings are based on discussions
and results of 35 interviews with PLHAs, who are member of self-help groups in
the networks of the BFN and the VNP+. Compared to some existing research on
HIV stigma in Vietnam, my study has small limited scope of research in terms of
selections of interviewees, and variety of PLHAs groups. Some research covered
interviews with various social groups related to PLHAs and included more
variations of PLHAs such as sex works, drug addicted persons and their partners,
and sociological studies and analysis of hospital monthly reports (Hong et al.
2004). Others chose to focus on pregnant women living with HIV/AIDS (Brickly
et al. 2009). Hence, my study draws major findings and conclusions based mainly
on this group of PLHAs, who are considered having better networks of support
from self-help groups and funds from NGOs. In this aspect, my study can draw
closer conclusions and make observations to a certain group of PLHAs that may
help the generalization and comparison of what PLHAs experienced with stigma
in Vietnam differently from other existing research. By choosing this focus on
PLHAs from self-help groups, I can make specific observations from their mental
22
and physical experiences with stigma and what self-help groups have made a
difference to their situation.
The groups of PLHAs interviewed consist of 25 women and 10 men. All were
born between 1970 and 1986. Only 3 men are single, and the rest are married and
27 of all interviewees have children.
The main findings are:
1. Of 35 interviewees, only one male respondent has no experience any
forms of stigma. All the rest have experiences with stigma in different
ways in relations to their community, families and hospitals, and even selfimposed stigmatism. 33 of 35 interviewees consider that they have
stigmatized themselves after discovering their HIV situation by isolation
and avoid social integration. The majority see the lack of sympathy,
misperceptions and knowledge about HIV/AIDs by their families and
communities, resulting in wrong attitude and beliefs towards PLHAs, are
the most difficult parts of stigma. Many of the respondents also impose
self-stigma towards themselves, because seeing the revelation of their
HIV/AIDS to others is seriously challenged due to community and
family’s wrong perceptions and attitude.
2. 50% of the interviewees experienced stigma and discrimination in
hospitals. Even if they come early, they are often left in waiting room
behind other non HIV patients. This is considered hard experiences for
them.
3. All of the interviewees consider that they have been limited to social life
and communication, and even lost their jobs as consequences of their
HIV/AIDS status. All those interviewees who have children experience
that their children were discriminated and they often have to live with
fears that schools can force their children to be removed from their
schools.
23
4. Hence, the majority of the interviewees do not want to reveal their HIV
situation to avoid stigma and discrimination.
5. Of 25 women participated in the study, most of them experienced stigma
and discrimination from their in-law families, even though most of them
are infected and transmitted through their husbands. 30% of the women
living with HIV/AIDS in the interviews are widowers and have more
burdens to raise children and generate incomes for their families.
6. A number of male interviewees are eldest child so they have experienced
with their families denying their equal rights to access to family assets
after they are discovered HIV-positive. Their parents want to shift assets to
other healthy children in hope they can continue generate incomes and
profits. Hence, they feel economically stigmatized.
7. Finally, all interviewees and PLHAs experience that they have become
more positive and taken better care of themselves when having better
knowledge on HIV. They all see access to self-help groups are positive.
Self-help groups have decisive roles in changing their own awareness and
better preparedness to cope with stigma. Counseling centers on HIV/AIDs
have played a positive role for them in improving their medical, mental
and physical strength, as well as social integration.
All these stories and experiences give some certain answers to HIV stigma and
offer implications and directions to what social work and community support can
be designed. They all highlight problems, causes and consequences behind
HIV/AIDS and HIV stigma. Firstly, PLHAs had experienced self-stigma and feltstigma for months/years until they have joined self-help groups. Secondly, PLHAs
have found it good and helpful to be in self-help groups. Thirdly, their close ones
such as children, parents, or lovers play an important role in their lives and in
helping them overcome stigma. This is to confirm that Attachment theory is true
in explaining “mothering” for PLHAs. Fourthly, people are different. PLHAs
themselves are not either positive or negative. Not all of them actively find
sufficient adjustment/adaptation for their situation, while many PLHAs are still
24
optimistic and dynamic. In the community, beside people who stigmatise
HIV/AIDS, many persons begin to show their sympathy and empathy to the
PLHAs. Fifthly, most PLHAs experienced a common feeling when they got to
know about their HIV-positive status: fear and hopelessness. The biggest hurdle
was feeling fear when they have to reveal HIV and disclose their status to the
families or friends, especially to their outsiders. It is hard work for each individual
PLHA to get used to their situation and facing stigma. Sixthly, PLHAs demand
that HIV/AIDS should be seen as a disease like cancer, not a “social evil” like in
the context of Vietnamese society. Seventhly, strong, effective and adequate
communication organised in small groups to each ward/commune, school, office
and hospital with participation of specialists and PLHAs are considered useful and
meaningful to PLHAs. Eighthly, they also demand that more HIV/AIDS
specialised hospital-departments and better attention from health care workers to
PLHAs to be set-up to provide them access to treatments and counseling. Ninthly,
PLHAs perceive that understanding and awareness about HIV/AIDS is the most
important thing to successfully prevent the transmission; providing concrete
information and explanation helps to educate people about the issue and tackle
HIV-related stigma. Tenthly, the PLHAs consider that to live a good, optimistic,
confident and useful life as well as being responsible to others make their spirit
light up while they try to take good care of their health and not be selfstigmatising, and try to defeat difficulties; taking part in self-help group. That is
attachments they need. Finally, no one can fight stigma alone so uniting
everyone, groups and organisations to tackle HIV-related stigma with care,
sympathy and knowledge increases power in this fight.
5.2 Discussions and Implications of the findings
When, how were PLHAs confirmed HIV-positive and did they reveal their status?
Blood test before military recruits or taken after being forced by the parents or bloodtest in the rehabilitations were usual way for male PLHAs to get to know their HIV
positive results in the period of 1998-2005. The female PLHAs got to know that they
were HIV positive in 1999-2010, mostly by health check-up before delivering a baby or
25
after the death of their new-born baby and young husband (two women in this case
were drug users/injectors). The HIV-positive confirmation made them cry at night and
gave them mental problem such as stress, depression and headache leading to
sleeplessness, wanting to die or hating themselves. Because to the best of their
knowledge and belief, HIV/AIDS means finish and dead. However, some of them did
not experience such things or did not acknowledge their stress related problem or
mental illness as they were drug injectors and awared of the consequences.
HIV/AIDS was believed to be a dangerous transmitted disease causing stigma.
Therefore, of course, many PLHAs hid their status from the public except their
families. Nevertheless, the community had suspicions about their status as their
husbands who were drug users died early. Additionally, the HIV-positive result
was passed from the hospital (where the PLHAs had blood test) to the local clinic.
There was a reason for unrevealing the status to the community that no one in their
place (village) had got HIV-positive before them. Hence, the PLHAs were afraid for
themselves but at the same time they had to protect their family from stigma so that the
family’s life could keep on the right track, such as their sister could get married.
Moreover, stigma would put them to disadvantage in their own life like losing job or
other opportunities or affecting their children’s schooling, they did not reveal their
situation. It would not help them to tell either because they are still living with HIV and
the other ones (neighbours, for instance) are not very involved directly in their lives. On
the other hand, a few of the PLHAs thought that there was no need to hide it or they
could not bear to suffer alone. If they wanted to share the experience, they did not keep
being HIV a secret. It was also two cases of providing awareness of HIV/AIDS to
public by showing themselves on TV to bulid up a good image of PLHAs in order to
reduce the heavily existing stigma in the community.
Whether or not their situation was disclosed, they were all aware of HIV
prevention not only to their family but also the community.
What did the PLHAs think of themselves and their situation?
26
The PLHAs experienced complex emotions and thinkings since they got HIV.
They saw themselves as very unlucky, disadvantaged and hopeless as they lost
many things, firstly, health and had to take ARV. Without the medicine they will
die but eating the medicine for a long time causes side-effects, also life
threatening and at the same time several of the drugs lose their effect after some
years. However, they have to live to take care of their family (often children and
mother-in-law). As a result, they continued to contribute to family and society
with a meaningful role. Less than a handful of the male HIV-positive, however,
thought that they were a burden of family and society.
PLHAs define Stigma
Each PLHA had their own opinion about stigma based on their experience.
Nonetheless, generally, aloofness and unfriendly, unrespectful behaviour and
attitude or non verbal language is the form of stigma in interaction. The feeling of
being looked down upon added to the experiences of the PLHAs that they were
seen as abnormal and unlike others. Accordingly, the worst thing for the PLHAs
to live with stigma was, of course, aloofness itself, a scornful look and attitude
and being isolated or potentially discredited by the other ones.
In such a situation, how could the PLHAs overcome stigma?
5.2.1 Positive support to empower the PLHAs in the situation
Accepting the situation and being self-motivated.
“I am fine with my life. This thinking makes it easier to live.”
(Female, 19782)
“Even if people around were cold, watchful, unrespectful or explorative or said bad words
about me, I kept distance from them and ignored all the things to make my life balanced.”
(Female, 1973)
2
Birth year of the respondents.
27
“I think about myself as a PLHA twice a day when I eat ARV, otherwise, I would be a
person without HIV. Most of the time, I find myself ordinary and have nothing different
from other ordinary people. I love, I work and I take care of my family.”
(Male, 1975)
“I myself must do something so that society looks at us-PLHAs as useful persons
and not “social evil”.”
(Male, 1978)
Being positive themselves and taking the problem of HIV and HIV-stigma light
is a key factor for PLHAs’ good life mentally. This is obviously proved by their
deep understanding and awareness of their situation. They think good about
themselves, do good things, live a healthy useful life and try their hardest to fulfil
a role of family member and citizenship.
Family – The most energetic power.
“I appeared on TV voluntarily for HIV-disclosure. My parents and even relatives were willing
with any interview invitations from the TV programme for a case of family of HIV persons.”
(Male, 1975)
“My cousin-in-law persuasively discussed with her mother: “If A3 (my name) has
HIV or got HIV from her husband, we must love her more and sympathise her.”It
was indeed touching for me.”
(Female, 1978)
“My daughter is everything to me. I live for her. She has no HIV, fortunately, so I
am okay completely.”
(Female, 1978)
3
“A” is not her real name.
28
Undoubtedly, family is often the best place to be where parents love and take
care of children and vice versa. Family relationship is extended to larger family in
which relatives are the close ones, supportive and sympathised. To many PLHAs,
without their family, they might not be able to survive with HIV/AIDS and stigma
as that long. Family also a motivation for them to be stronger, more positive and
active.
Self-help groups – the second family.
“The leader of the group saved me from misfortune. I regenerated from complete
hopelessness. Now I get ARV and support. Every time coming to the group, I cry
as I meet “like” people who open to me, love me and support me.”
(Female, 1978)
“There – in the self-help group, I find myself again, I laugh, I learn, I share, and
I am happy with my peers – my brothers and sisters. My life is beautiful.”
(Male, 1979)
Self-help groups act as peer, family member, listener, speaker, trainer and
advocator. Those groups always stand by PLHAs side, speak for PLHAs and help
PLHAs basic HIV-knowledge, care and many other helpful support. If there was
no self-help group at all, predictably, PLHAs have been in worse life.
Organisations’ support – various meanings.
“After trainings, I got knowledge on HIV/AIDS and mini books and leaflets. I
brought them home to my family and neighbours. They read and changed their
mind about HIV/AIDS and clearly, HIV stigma reduced and disappeared in
them.”
(Female, 1979)
29
“I became a nurse of my family. Because I have been provided knowledge about
medicine and taking care of ill people from trainings. Whenever my family’s
members get a common sickness, they ask me what medicine they should eat.”
(Female, 1979)
“I got to know about the self-help group from the voluntary counselling and
testing office in the hospital. The office was very helpful to us.”
(Male, 1982)
This support has come from combination and cooperation between and among
(public and private) organisations. Organisations have been providing PLHAs
significant support materially (training, free ARV), spiritually (religion
organisations) and mentally.
Attentive care from society.
“Due to stigma, I left my family and was homeless with lots of HIV-open wounds
and seriously sick in a park. A group of students/volunteers, I think, brought me
some food, money, a folding bed, mat, pillow and bedding in a very chilling cold
night. They kept in touch with me afterwards. I became an energetic person.”
(Female, 1980)
Feeling the meaning of helping out society and other PLHAs.
“When I was confirmed HIV-positive in 2005, no one disclosed their status, no
one did propaganda on HIV intervention and prevention. I wanted to get
understanding to the community, it is for the community, not for me. Therefore, I
revealed myself publicly and worked with HIV.”
(Female, 1980)
“My family and community are happy for me that I am supporting and caring for
PLHAs in the community. They encourage me. Even someone who stigmatised me
before talks good about me. I feel good as I am getting knowledge to people and
caring for peers.”
30
(Female, 1979)
“In my first visits to PLHAs, they were upset and hopeless. Time by time, they
have become more integrated, started to talk and laugh and even telephoned me.
My job is just a little contribution but it is meaningful. To me, it is a success even
when only one person is helped out.”
(Male, 1978)
It can be said that no one want to be useless. When one has been in “poor
condition” of having a disease, one understands the situation and certainly wants
to improve it for oneself and to some extent, for the “like”. Helping oneself means
helping others, helping others also means helping oneself.
Religious practice – more health given.
“Whenever I am sick. My peers come to care for me. We pray and I become
better.”
(Female 1973)
Belief in someone/something powerful such as God that PLHAs have applied for
themselves is an understandable perception. The spiritually strong belief and
practice actually benefit them in many senses including good health and good
mental life.
Overall, being good and having support from others have kept PLHAs living
their continuous meaningful life.
According to Attachment theory, the case is vividly demonstrated. PLHAs feel
comfort and safe with the ones who support and protect them. The intimate
relationship of safety and security feed their mental health. This is also an
emotional engagement from the open communication, physical accessibility and
responsiveness. PLHAs clearly have turned into more protected by mothering. It
could mean that the preoccupied and insecure PLHAs can meet helpful benefits
31
when joining such activities and thoughts. Additionally, being proud and
independent in in-group alignment and trying to be normal in out-group alignment
(Goffman’s theory) in the PLHAs are undoubtedly shown up.
5.2.2 Challenges and problems: What lies ahead?
Stigma still exists in families of PLHAs.
“My family said that I am spoilt so I got HIV. But they did not know that they may
be also at HIV/AIDS-risk at anytime.”
(Female, 1981)
“I got very sick. I wanted to stand up, no one came to help me. I wanted to go out,
I myself stood up and nearly fell down, my cousin and brother-in-law were afraid
that I would fell to them so they evaded and stood away from me. ”
(Female, 1981)
Stigma is heavily present in health care settings.
“I was about to deliver a baby. I was asked to refer myself with referral letters
from hospital to hospital in severe pain two times.”
(Female, 1980)
“I am a nurse with HIV. My colleagues have asked me to stick my name on a chair. I am
not allowed to use shared-computer or shared-chair and so on. In parties, they have
given me separate bowl, chopsticks and even a small bowl of fish sauce.”
(Female, 1978)
Stigma even lives in propagandist trainings.
“It was in a propagandist training, in my turn of practice, my arm (with ulcerate
scars) raised up showing a picture and immediately one propagandist said:
“Next time do not let her stand up because her arm looks terrible”. After three
months working for that community-based project of HIV/AIDS prevention, I was
sacked because they said I am not physically healthy enough. Before that, I have
32
ever thought that I could support and devote to the community but then I was, in
fact, refused by people working in the field.”
(Female, 1981)
Working with HIV/AIDS but HIV/AIDS-related volunteers have to use another “title”.
“Talking with my neighbours - ordinary people about HIV/AIDS and stigma, I
have to say that I am a member of Women’s Union. Otherwise, I do not dare to
reveal myself in front of them.”
(Female, 1978)
Stigma results in losing income and unemployment.
“I had a mini restaurant with very good consumption. After my husband’s death,
I lost 90% customers. I had to struggle myself to gain their belief again within
two years by proving that I am still healthy and nothing different showed in my
appearance.”
(Female, 1978)
“I was introduced to a factory. For the first time meeting a person in charge, I
was welcome and asked to bring her documents on the next day and surely she
will give me a job. Also I was taken around to visit the factory. I met some of my
neighbours working there. The day after I came, my employer changed her
attitude very negatively and asked me to submit blood test result as well. I was
stunned mute and went home in tears and hopelessness.”
(Female, 1977)
Stigma is put on innocent/sinless children.
“In our neighbourhood, other children said to my children: “You are children of
HIV-parents, you have HIV as well. We do not play with you.””
(Female, 1981 and 1982)
33
“A child visited me at my home. She wanted an apple. I gave her. Going out of
my door, her mother at once took the apple from her hand and threw it away
saying to the child that: “You are not allowed to eat that apple. That apple
transmits illness to you causing death.””
(Female, 1979)
“I do not have anyone to share with. Sometimes, in stress, I beat my little son
when he is “spoilt”. Then I cry for doing a wrong thing.”
(Female, 1979)
Women are victims of HIV/AIDS and stigma.
“I transmitted HIV to my girlfriend without awareness of my HIV-positive. It is
my sin. But people do not categorise reasons resulting in getting HIV, they just
think that because of sex work or drug use.”
(Male, 1976)
“I felt cold and cheerless a bit and indifferent when I got to know that I was
infected. I did not understand the reason why I got HIV, why HIV got into my
body, I just had sex with my boyfriend.”
(Female, 1981)
Thus, PLHAs desire a “trouble-free” thing for them:
Dreams of a normal life like the life of other ordinary people.
“I have had some dreams, in which I get up in the morning and I no longer live
with HIV.”
(Female, 1978)
“I wish I were without HIV so that I can join my friends (more) in our classmatemeeting party.”
(Female, 1981)
34
Stigma makes PLHAs’ identity spoiled and “mentally disabled”. Stigma
experienced by the PLHAs presents Goffman’s idea that the PLHAs were
unaccepted and avoided because they were thought as “polluted” ones. Both
stigma visible (discredited) and stigma hidden (potential discredited) were put on
the PLHAs. These types of stigma are also kind of shadow that inherited and
encompassed the whole family, and gave discrepancy virtual social identity and
actual identity of the PLHAs. Still the PLHAs even could not show up all
themselves like going further to intimate relationship with ordinary girls or even
telling their old parents that they live with HIV/AIDS because it would affect the
parents’ well-being.
An ordinary child whose identity is normal but his mother is considered
“abnormal” by the others causing him spoilt identity. Spoiled identity simply
means that a person cannot be fully himself/herself and has to change
himself/herself to fit in situation(s). Aloofness/distance, social prejudice and
social exclusion nourish stigma. Consequently, when the normals meet the
stigmatised, the interaction grows to be tense and uncertain. However, sometimes
and in some cases, stigma could be diminished or disappeared.
The Vietnam Law on HIV/AIDS intervention and prevention and the strong
effort of the Government have been improving in tackling HIV/AIDS and stigma
in Vietnam. However, “lack of hospital policies fosters stigma and discrimination,
which affects the quality of care” (Oanh et al. 2008, p.3). Certainly, policies and
social welfare in general could not cover the whole HIV/AIDS-population and
stigma but the suggestions of Nyblade et al. (2008) seem to be feasible that
building “commitment to and ownership of the stigma-reduction process among
community leaders”, building “leaders’ understanding of stigma and capacity for
reducing it”, addressing “stigma through combined approaches”, strengthening
PLHAs “and their support networks” and providing “written materials with
detailed information that is appropriate to the local context” (pp.28-29).
35
6. CONCLUSIONS
This study has attempted to raise better understanding of stigma and how PLHAs
experienced with stigma in Vietnam. Through empirical case study using
qualitative approach with interviews as a primary source, I have explained the
situation of HIV/AIDS and PLHAS in Vietnam, problems and stigmatism they
have experienced. The findings have helped expose the reasons why PLHAs
reveal/unreveal their status, the active and effective role of PLHAs in self-help
groups and integrating in social networks with community support in order to
educate people about their situation and actively changed their own situation and
the ways people view HIV/AIDS and PLHAs. By showing the stories and
experiences by PLHAs themselves with stigmatism, the study has revealed how
stigma can negatively influenced the PLHAs and how society and social work can
be designed to work against stigma.
The findings of the study show many similar results from existing research in HIV
stigma in Vietnam. What can be a contribution of this study is that it targeted a
smaller group of PLHAs who live in Hanoi, a city that is exposed to multicultural, social and economic phenomena of an emerging economy, and who have
a network of social self-help to assist their situation. Results from interviews with
this group of PLHAs bring closer knowledge and awareness to what they have
experienced with stigma and what they have benefited from self-help network and
community support. It may not reveal a comprehensive picture of PLHAs and
HIV stigma, or any comparative situation in comparison with other more
vulnerable and disadvantaged PLHAs who live in rural poor and remote areas or
those who expose to extreme life hardship like sex workers. However, it may have
shown a show case for society and social work how to approach the PLHAs and
what might be consider most helpful to the PLHAs with self-help networks or
other forms of community help.
The results show that PLHAs have been dealt with stigma both with in-group and
out-group strategies. By now, although HIV/AIDS has not been cured yet, many
PLHAs still live on and wish to have their useful lives for many years to come.
36
That reflects a really big effort from themselves and from others. From their own
stories, the difficulties of changing people’s negative mind about the problem
became evident. Enlightened by sympathy and respect is perhaps the most
important factors that the PLHAs wish to have in order to help them overcome
stigma. No one likes being isolated, but everyone likes to receive support and
their families and communities to stand by so that they can help themselves to
stand up. This is an important reminder to policy makers and social workers.
37
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42
APPENDIX
Questionnaire
HIV/AIDS and Stigma in Vietnam
In order to provide society more and better knowledge and understanding
about HIV/AIDS and stigma in Vietnam aiming at improving the problem, please
spend your time on answering the questionnaire. Your participation is completely
voluntary. Your personal information is kept confidential.
Sincerely thanks for your kind help!
1. Do you reveal your HIV-positive status?
- Why?
2. What was the attitude of your family to you?
3. What was the attitude of your relatives to you?
4. What was the attitude of your neighbours to you?
5. What was the attitude of your friends/colleagues to you?
6. What did you feel about the relationship between you and people around you?
7. How did the relationship influence your daily life?
8. What did you behave in the relationship?
9. What did you think of yourself and your situation?
10. What did you think and feel about your role in the family, friendship,
workplace, community and society?
11. What did other people (your family, friends, relatives, etc) say about your role
in the family, friendship, workplace, community and society?
43
12. After revealing your status, did you get mental problem?
13. Did you recieve any mental support?
14. What was the meaning of the support to you?
15. Who/What play an inportant role in your life? Why?
16. What is stigma, in your oppinion?
17. In your opinion, what is the worst thing in living with stigma? Why?
18. Who/What play an important role in supporting you to live with and overcome
stigma? Why?
19. Your wishes and recommendations to improve the problem?
20. Additional information, emotion and experiences? (if any)
21. Your personal information:
A. Age:
B. Sex:
Male 
Female 
C. Education:
Secondary school 
College 
High school 
Undergraduate 
Vocational college 
Graduate/Post graduate
D. Address (name of district):
E. Occupation:
Sincerely thanks for your sharing and cooperation!
44

45