ArticlePDF Available

Common at its Core: HIV-stigma Across Contexts

Authors:
Common at Its Core:
Jessica Ogden
Laura Nyblade
Across Contexts
Copyright
©
2005 International Center for Research on Women (ICRW). All rights reserved. Sections of this document may be reproduced without
express permission of but with acknowledgement to the International Center for Research on Women.
Design: Manu Badlani
Common at Its Core:
Across Contexts
Jessica Ogden
Laura Nyblade
HIV-RELATED STIGMA
Preface
This report is a synthesis of the collective work of multiple partner institutions and individuals in
Ethiopia, Tanzania, Vietnam, and Zambia, as listed below in the citations for the individual country
reports and the Africa-study synthesis. All quotes presented in this report are taken from the data
presented in these reports.
Hailom Banteyerga, Aklilu Kidanu, Laura Nyblade, Kerry MacQuarrie, and Rohini Pande. 2004.
Yichalaliko (It Can Be Done)! Exploring HIV and AIDS Stigma and Related Discrimination in
Ethiopia: Causes, Manifestations, Consequences and Coping Mechanisms.” Miz Hasab Research
Center, Addis Ababa, Ethiopia.
Virginia Bond, Levy Chilikwela, Sue Clay, Titus Kafuma, Laura Nyblade, and Nadia Bettega. 2003.
Kanayaka The Light Is On: Understanding HIV and AIDS-related Stigma in Urban and Rural
Zambia.” Zambart Project and Kara Counselling and Training Trust, Lusaka, Zambia.
Sue Clay, Virginia Bond, and Laura Nyblade. 2003.
We Can Tell Them: AIDS Doesn’t Come Through Being Together. Childrens Experiences of HIV and
AIDS-related Stigma in Zambia.” Zambart Project and Kara Counselling and Training Trust, Lusaka,
Zambia.
Khuat Thu Hong, Nguyen Thi Van Anh, and Jessica Ogden. 2004.
“Because it is the Disease of the Century: Understanding HIV and AIDS-related Stigma and
Discrimination in Vietnam.” Institute for Social Development Studies, Hanoi, Vietnam and
International Center for Research on Women, Washington, D.C., U.S.A.
Jessie Mbwambo, Gad Paul Kilonzo, Peter Kopoka, and Laura Nyblade. 2004.
“Understanding HIV and AIDS-related Stigma and Resulting Discrimination in Tanzania.” Muhimbili
University College of the Health Sciences, Dar-es-Salaam, Tanzania.
Laura Nyblade, Rohini Pande, Sanyukta Mathur, Kerry MacQuarrie, Ross Kidd, Hailom Banteyerga, Aklilu
Kidanu, Gad Kilonzo, Jessie Mbwambo, and Virginia Bond. 2003.
“Disentangling HIV and AIDS Stigma in Ethiopia, Tanzania and Zambia.” International Center for
Research on Women, Washington, D.C., U.S.A.
We are grateful for the partnership of these exemplary colleagues whose insights and wisdom have
contributed significantly to our own understanding of the issues discussed herein.
Acknowledgments
This work is a synthesis of the collective work of our partners and would not be possible without
them. In Ethiopia: Hailom Banteyerga and Aklilu Kidanu of Miz Hasab Research Center; in Tanzania:
Jessie Mbwambo and Gad Kilonzo of Muhimbili University College of Health Sciences; in Vietnam:
Khuat Thu Hong and Nguyen Thi Van Anh of the Institute for Social Development Studies; in Zambia:
Virginia Bond, Levy Chilikwela, and Sue Clay; in Washington, D.C.: Kerry MacQuarrie, Sanyukta Mathur,
and Rohini Pande of the International Center for Research on Women (ICRW); and in Botswana, Ross
Kidd.
We give special thanks to all the respondents in the four countries who so willingly shared their time
and insights with us on such a sensitive topic. Without them, this work would not have been possible.
The project teams, responsible for field work, data entry, and administrative tasks in Ethiopia, Tanzania,
Vietnam, and Zambia require particular recognition. Their hard work, diligence, and dedication
ensured the success of this project.
Special thanks go to the following individuals for their ongoing support and critical input and feed-
back at various points in this project:
Melissa Adams, Sarah Kambou, Kerry MacQuarrie, Carole Mahoney, Jennifer Ramsey, and Margo
Young at ICRW;
Anton Schneider and Susan Zimicki of CHANGE/AED;
Clifton Cortez, Daniel Levitt, Ron MacInnis, and Billy Pick of USAID-Washington, D.C. and Vietnam;
Scott Purdon of Positive Action, GlaxoSmithKline; and
The Swedish International Agencys regional HIV and AIDS team.
We would also like to thank the artists whose work graces these pages and the Toolkits: Ly Thu Ha and
Petra Röhr-Rouendaal; and Manu Badlani for the cover design and layout.
Despite all this generous help and support, the views expressed here are the responsibility of the
authors, not of the sponsoring agencies or other participants.
1. Introduction ................................................................................................................. 7
1.1 What is HIV-related stigma? ..................................................................................................................................... 7
2. Background ................................................................................................................. 9
2.1 The studies: methods, sampling, analysis .......................................................................................................... 9
2.1.1 The Africa studies ............................................................................................................................................... 9
2.1.2 The Vietnam study ............................................................................................................................................ 10
2.1.3 The anti-stigma toolkit ................................................................................................................................... 11
2.2 Important elements of context ............................................................................................................................ 11
2.2.1 The HIV/AIDS pandemic ................................................................................................................................. 12
2.2.2 Economic situation: the relationship between poverty and stigma ......................................... 13
2.2.3 The importance of religion ........................................................................................................................... 14
3. Findings ...................................................................................................................... 15
3.1 The root causes of stigma: knowledge and morality ................................................................................ 15
3.1.1 The role of knowledge about HIV and AIDS and fear ....................................................................... 15
3.1.2 The role of values, norms, and moral judgment ................................................................................. 20
3.2 Expressions and forms of stigma ........................................................................................................................ 25
3.2.1 Physical stigma .................................................................................................................................................. 25
3.2.2 Social stigma....................................................................................................................................................... 28
3.2.3 Verbal stigma ...................................................................................................................................................... 29
3.2.4 Institutional stigma .......................................................................................................................................... 29
3.3. Consequences and impact of stigma ............................................................................................................... 30
3.3.1 Consequences of stigma for individuals living with HIV and AIDS ............................................. 30
3.3.2 Consequences of stigma for the families of people living with HIV and AIDS (secondary
stigma).............................................................................................................................................................................. 33
3.3.3 Consequences of stigma for HIV and AIDS treatment and prevention efforts ..................... 33
Table of Contents
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
6
4. Conclusions ................................................................................................................
37
5. Recommendations ..................................................................................................... 38
5.1 Individual and structural change ....................................................................................................................... 38
5.2 Knowledge and fear about HIV and AIDS....................................................................................................... 38
5.3 Values, norms, and moral judgments................................................................................................................ 40
5.4 Involve people with HIV and AIDS as integral members of all programs ..................................... 42
5.5 The way forward ........................................................................................................................................................... 42
References ...................................................................................................................... 43
Table 1: Comparing Statistics on the HIV/AIDS Pandemic ............................................................................. 12
Table 2: Comparative Statistics on Poverty .......................................................................................................... 13
Table 3: Expressions and Forms of Stigma ............................................................................................................ 26
Box 1: Defining Stigma ................................................................................................................................................. 7
Box 2: Basic Facts About HIV Transmission ........................................................................................................ 16
Box 3: Schematic of “Innocence-to-Guilt” Continuum ................................................................................... 23
Box 4: Understanding and Challenging HIV Stigma: Toolkit for Action ................................................ 41
Tables, Boxes and Figures
Common at Its Core: HIV-related Stigma Across Contexts
7
Introduction
1
In this report, we equate “forms and consequences of stigma with discrimination.“
2
Text for this section has been drawn from Hong et al. 2004 and Nyblade et al. 2003.
H
IV and AIDS-related stigma and discrimina-
tion together have long been recognized as
one of the main obstacles to the prevention,
care, and treatment of HIV and AIDS. Yet little has
been done on a large scale to combat them.
There are many reasons for this inaction, includ-
ing the belief of many policymakers that stigma
is hard to define and measure, making it difficult
to design and implement interventions. Stigma,
it is believed, is too cultural, too context-specific,
and too sensitive to be addressed meaningfully.
This report, a synthesis of findings from research
in four countries, presents evidence suggesting
that HIV and AIDS-related stigma is far less
varied and context-specific than may have been
imagined. In fact, there are many more similari-
ties than differences across these contexts in the
key causes of stigma, the forms stigma takes,
and the consequences of stigma.
1
This finding
opens a number of important avenues for
intervention. It is time to make a concerted
effort against stigma and discrimination in order
to progress in the fight against HIV and AIDS.
The report begins by defining stigma and in
Section 2 providing background about the
projects. Next, it discusses that, in spite of
different contexts, the four countries where the
studies took place share key features that shape
the nature and forms of HIV-related stigma.
Section 3 presents findings, focusing on the
similarities across the four different country
contexts, and is broken down into the following
sub-sections: (1) understanding the root causes
of HIV-related stigma; (2) an overview of the
main expressions or forms that stigma takes; and
(3) the consequences or impact of HIV-related
stigma. Section 4 concludes with a discussion of
the way forward and an overview of the two
anti-stigma toolkits that grew out of the
projects’ findings: one that is suitable to many
African settings; and one adapted from the first,
which is tailored for Vietnam but suitable for
adaptation elsewhere in the Asian region.
1.1 What is HIV-related stigma?
2
Stigma is a complex social phenomenon involv-
ing interplay between social and economic
factors in the environment and psychosocial
issues of affected individuals. Goffman (1963)
describes three types of stigma: (1) abomina-
tions of the body, or stigma related to physical
1
Box 1: Defining Stigma
In December 2003, UNAIDS posted a fact sheet on stigma and discrimination on its Web site (www.unaids.org), which
provides a useful summary definition of both stigma and discrimination. The following is an excerpt:
HIV/AIDS-related stigma can be described as a “process of devaluation” of people either living with or
associated with HIV and AIDS. This stigma often stems from the underlying stigmatization of sex and
intravenous drug use—two of the primary routes of HIV infection. Discrimination follows stigma and is the
unfair and unjust treatment of an individual based on his or her real or perceived HIV status. Discrimination
occurs when a distinction is made against a person that results in being treated unfairly and unjustly on the
basis of belonging, or being perceived to belong, to a particular group.
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
8
deformities; (2) stigma related to “blemishes of
individual character,” such as people who are
considered to be weak-willed, to have unnatural
passions, or to be dishonest; and (3) “tribal
stigma,” or stigma relating to race, nation or
religion, or membership of a despised social
group. Because one typically inherits member-
ship to this last group, tribal stigma can equally
adhere to and affect all members of a family.
While Goffman focuses on the individual aspects
of stigma, Parker and Aggleton (2003) offer a
framework that emphasizes stigma as a social
process that produces and reproduces relations
of power and control. They also examine how
stigma is used to turn difference into inequity—
based on gender, age, sexual orientation, class,
race, or ethnicity—allowing some groups to
devalue others based on these differences.
According to this analysis, stigma and discrimi-
nation are used by dominant groups to produce,
legitimize, and perpetuate social inequalities,
and exert social control through the exclusion of
stigmatized groups, limiting the ability of the
stigmatized groups or individuals to resist or
fight the stigma.
In addition to an exercise of power, stigma can
be a response to fear or risk or a threat of a
disease that is incurable and potentially fatal
(Gilmore and Somerville 1994). The more rapid
the spread of the disease and the greater the
uncertainty of how the disease is transmitted,
the more likely that stigma will result. Epidemics
that present an overt threat to the values of a
community are especially likely to evoke stigma
because stigma is used to enhance or secure
social structuring, safety and solidarity…or
reinforce societal or community values by
excluding divergent or deviant [individuals]”
(Gilmore and Somerville 1994). Stigma related to
medical conditions is greatest when the condi-
tion is associated with deviant behavior or when
the cause of the condition is viewed as the
individual’s responsibility. This becomes particu-
larly strong when the illness is associated with
religious beliefs and thought to be contracted
through morally sanctionable behavior (Alonzo
and Reynolds 1995). Stigma is also more evident
when the condition is unalterable, incurable,
severe, degenerative, and leads to readily
apparent physical disfigurement or an undesir-
able and unaesthetic death (Alonzo and
Reynolds 1995; Cogan and Herek 1998; de Bryun
1998).
HIV and AIDS have all of the characteristics
associated with heavily stigmatized medical
conditions. They are associated with socially
improper forms of sex and injection drug use,
socially censured behaviors that are viewed as
the responsibility of the individual. AIDS is
incurable, degenerative, often disfiguring, and
associated with an “undesirable death (Nzioka
2000). It is often incorrectly thought to be highly
contagious and a threat to the community at
large. The general population, and sometimes
medical personnel, are not well-informed and
lack a deep understanding of HIV and AIDS. HIV
and AIDS also correspond to all three of
Goffmans stigma types noted above.
Common at Its Core: HIV-related Stigma Across Contexts
9
2.1 The studies: methods, sampling,
analysis
Beginning in April 2001, USAID (through the
CHANGE Project/Academy for Educational
Development) and GlaxoSmithKline’s Positive
Action Program funded the International Center
for Research on Women (ICRW) and its partners
to undertake a program of research on HIV and
AIDS-related stigma and discrimination. The
objective of this research was to generate a
foundation of evidence, through rigorous
descriptive research, upon which to create tools
and build interventions that would directly
tackle the stigma and discrimination described.
This research initially was conducted in Ethiopia,
Tanzania, and Zambia—all sub-Saharan African
countries hard-hit by the epidemic. These
African studies ran from April 2001 through
September 2003. In 2002, this work was
extended to include a fourth country outside of
Africa, Vietnam. The Vietnam study was
conducted from August 2002 through February
2004. In all countries, the research was
conducted by national research organizations
with technical and managerial support from
ICRW. All four studies, their methods, and
analysis are described in detail elsewhere (see
Bond et al. 2003; Banteyerga et al. 2004; Hong et
al. 2004; Mbwambo et al. 2004). Additional
support for the Africa studies was provided by
USAID through the CORE Initiative, by the
Swedish International Development Agency, and
by the United Kingdom Department for
International Development (DFID). In this section,
we provide a brief overview of each study and
its main output, and we introduce a toolkit for
understanding and challenging HIV stigma.
2.1.1 The Africa studies
3
Partners
Each country study was led by a local research
institution. In Ethiopia, the research was led by
the Miz-Hasab Research Center (MHRC); in
Tanzania by the Department of Psychiatry,
Muhimbili University College of Health Sciences
(MUCHS); and in Zambia by ZAMBART (a collabo-
rative project between the University of
Zambias School of Medicine and the London
School of Hygiene & Tropical Medicine) and Kara
Counseling and Training Trust (KCTT).
Objectives
The objectives of the Africa studies were to:
(1) untangle the underlying factors that
perpetuate or mitigate stigma;
(2) document how stigma is influenced by the
context in which it occurs;
(3) analyze how stigma and discrimination is
experienced by people with HIV and others
who are affected by the disease;
(4) understand how stigma and discrimination
affects access to HIV prevention, testing,
disclosure, care, and support efforts; and
(5) recommend interventions.
Methods and sampling
An urban and a rural site in each of the three
countries were selected for the community-
based exploration of HIV and AIDS-related
stigma and discrimination. In all cases, the
communities selected are poor with high
population density in urban areas and limited
3
For an overview of all three studies and a synthesis of results, see Nyblade et al. 2003.
Background
2
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
10
access to services, especially in rural areas.
Employment is dominated by the informal sector
in urban areas and subsistence farming in rural
areas.
Data collection techniques were primarily
qualitative, with the exception of a quantitative
survey conducted in Ethiopia. Qualitative
research methods across the three countries
included key informant interviews, focus group
discussions (FGDs), diaries, content review, and
semi-structured interviews. At the onset of the
study, participatory techniques (such as transect
walks, community mapping, listing of health
problems, and timelines) were conducted in
each of the communities to build rapport and
gain insight into the general community layout
and structure. The combined data set in the
three countries included 730 qualitative tran-
scripts (650 interviews and 80 focus group
transcripts) and 400 survey respondents. Across
the countries and studies, respondents included
community members, people living with HIV and
AIDS, youth, religious leaders, health profession-
als, caregivers, educators, employers, and
nongovernmental organization (NGO) staff. The
researchers purposively sampled all interview
and focus group discussion respondents by sex
and socio-economic status. In Ethiopia, research-
ers administered a survey questionnaire on
knowledge, attitudes and behaviors around HIV
to 202 rural residents and 200 urban residents
who were systematically selected from existing
official household lists. More details are available
in Nyblade et al. (2003) and the country research
reports (Bond, Chilikwela et al. 2003; Banteyerga,
Kidanu et al. 2004; Mbwambo, Kilonzo et al.
2004).
In addition to the core, comparative community
studies, each country also chose additional
topics for sub-studies to reflect issues of imme-
diate concern in their communities. These are
outlined briefly below:
X Ethiopia: Men and women living with HIV
and AIDS who belong to a NGO offering
support to people with HIV and AIDS wrote
diaries for six months, documenting their
experiences of living with HIV, including
disclosure, interactions with family,
community, peers, and colleagues, and how
they coped with stigma.
X Tanzania: Voluntary counseling and testing
(VCT) clients who were HIV-positive were
enrolled in the study at the time of VCT and
interviewed over a period of 10 months to
learn about their experiences with stigma over
time. The language aspects of stigma were
explored at several levels: with linguists, HIV
and AIDS experts, historians, and theologians
on how to talk about stigma in the local
languages; through assessment of the extent to
which people at the community level used
similar or different words to understand and
describe stigma; and through an analysis of
print media. MUCHS researchers also explored
HIV and AIDS-related stigma and discrimination
within a health care training setting.
X Zambia: ZAMBART researchers followed a
selection of households with tuberculosis (TB)
patients over time to examine the interactions
between stigma surrounding TB and HIV and
AIDS in households. Additionally, ZAMBART and
KCTT explored the experiences of children
infected with and affected by HIV through
workshops and in-depth interviews.
Analysis
All interviews were recorded on tape, tran-
scribed, and translated into English. Manual
thematic analysis was conducted, and key
domains for analysis identified and data coded.
N4 software was then used to systematically
process and analyze the qualitative data. The
quantitative data was entered, cleaned, and
analyzed using SPSS and STATA statistical pack-
ages.
2.1.2 The Vietnam study
4
Partners
The Institute for Social Development Studies
(ISDS), based in Hanoi, conducted the research
with technical support from ICRW.
4
See Hong et al. 2004 for a full report on this study.
Common at Its Core: HIV-related Stigma Across Contexts
11
5
The Africa Toolkit can be found at: http://www.changeproject.org/technical/hivaids/stigma/StigmaToolkit.pdf.
Objectives
The objectives of the Vietnam study were to:
(1) document the experiences of people living
with HIV and AIDS;
(2) explore how HIV and AIDS-related stigma
interacts with other stigmas; and
(3) investigate the role of gender in the causes
and consequences of stigma.
Methods and sampling
The study was conducted in two Vietnamese
cities, both relatively badly affected by the
epidemic: Hai Phong in the north of the country,
and Can Tho in the south. One ward was se-
lected for each city. Due to the sensitivity of the
topic, a qualitative approach was deemed most
appropriate. The primary methods used to
collect data were in-depth interview and focus
group discussions. Other methods included
observation, photography, and the use of
participatory techniques such as matrix map-
ping and brainstorming. Secondary sources
were also consulted widely. Additional informa-
tion was obtained from key informants who
were members of the projects Leadership
Advisory Group.
In each research site, the study sample consisted
of people living with HIV and AIDS, their family
members, and people living in their communi-
ties. In selecting participants living with HIV and
AIDS, attention was given to whether they were
likely to have acquired their infection through
injection drug use, involvement in sex work, or
by other means. In each site, the research
sample included:
(1) Fifteen people living with HIV and AIDS who
participated in in-depth interviews;
(2) Fifteen male and female family members of
people living with HIV and AIDS who
participated in in-depth interviews;
(3) Sixty-four community members from each
ward who participated in FGDs; and
(4) Thirty-two local leaders from each ward who
participated in FGDs.
Local leaders in each ward also participated in
in-depth interviews. Additional key informant
interviews were conducted with local health
workers, teachers, and other members of the
community.
Data processing and analysis
Following data collection, all taped interviews
and FGDs were transcribed and around
20 percent translated into English for review by
ICRW. The ISDS team was trained in the use of
NVIVO 2.0 qualitative data management and
analysis software. Key domains for analysis were
identified, data was coded, and a codebook and
preliminary analytical framework developed.
Manual thematic analysis was also conducted.
2.1.3 The anti-stigma toolkit
5
During the course of the Africa stigma research,
it became clear that few tools are available to
assist NGOs and communities in tackling stigma.
Based on the research findings and the country
teams, ICRW and the AED/CHANGE Project, with
the active participation of more than 50 NGOs in
Ethiopia, Tanzania, and Zambia, designed a
toolkit to help people at all levels understand
stigma—what it means, why it is an important
issue, its root causes—and develop strategies to
challenge stigma and discrimination. Section 4.2
contains more detailed information on how the
toolkit was developed and highlights of the
content.
2.2 Important elements of context
This report synthesizes research across four
countries with different social, economic,
political, historical, and geographic contexts,
each with a different experience of the HIV/AIDS
epidemic. It finds that despite sometimes
dramatic variations, HIV and AIDS-related stigma
and discrimination is remarkably consistent.
What we find, looking across contexts, are
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
12
6
See Nyblade et al. 2003 for an exploration of these differences.
7
Interestingly, in their recent Epidemiological Update on Vietnam, UNAIDS reports that, despite the high prevalence of HIV among IDU, it is
likely that up to 80 percent or more of HIV infections are sexually transmitted (UNAIDS 2004b).
Table 1. Comparing Statistics on the HIV/AIDS Pandemic
*
Country Number of Adults (15-49) Prevalence Rate (%) Women (15-49)
Living with HIV (End 2003) (End 2003)
Vietnam 200,000 0.4 65,000
Ethiopia 1,200,000 4.4 770,000
Tanzania 1,400,000 8.8 840,000
Zambia 880,000 16.5 470,000
*
Data from UNAIDS 2004. Report on the Global AIDS Epidemic. Geneva, Switzerland.
commonalities in what causes stigma, the forms
in which stigma is expressed, and the conse-
quences of stigma—each of which will be
described in detail later in this document.
Variations that stem from differences in lan-
guage, culture, and epidemic history are largely
of nuance and degree rather than substance.
This section briefly highlights some of the
differences in context that influence HIV and
AIDS-related stigma and discrimination.
Although there are important differences among
the three African countries,
6
the emphasis will
be on comparing the African sites as a whole
with Vietnam.
2.2.1 The HIV/AIDS pandemic
The HIV/AIDS pandemic is increasingly thought
of as not one, but many different localized
epidemics. The most important differences
between the African and Vietnamese settings in
terms of HIV and AIDS-related stigma stem from
the different types of epidemic they are experi-
encing. Although there are differences among
the three African countries in terms of preva-
lence (see Table 1 below), all three countries are
experiencing a generalized HIV epidemic. HIV
and AIDS in these countries are no longer
confined to specific risk groups, but are being
experienced by the population as a whole. As a
consequence, transmission in all three countries
is primarily through heterosexual penetrative
intercourse. In addition, prevalence rates in all
three countries are high, although Zambia’s
overall prevalence rate of over 16 percent is
significantly higher than Tanzania’s at 8.8 percent
or Ethiopias at 4.4 percent. The impact on
households of the higher prevalence rate
combined with deep poverty is evident in the
Zambian data, where fatigue and poverty fuel
stigma.
Vietnam, on the other hand, is still experiencing
what is known as a concentrated” epidemic: HIV
infections occur primarily among a few select
population groups, the most important of which
is injection drug users (IDU), who bear nearly 60
percent of all HIV infections.
7
Sex workers (3.1
percent), TB patients (4.4 percent), and people
attending clinics for sexually transmitted
infections (1.8 percent) are also experiencing
relatively high prevalence rates, and youth are
heavily affected (10 percent of those living with
HIV and AIDS are between 10 and 19 years old,
and 55 percent are between 20 and 29 years
old). The overall prevalence rate in Vietnam,
however, remains relatively low at around 0.4
percent.
These differences result in important variations
in the number of infections found in women. In
sub-Saharan Africa generally, and in the three
countries studied, women experience more than
Common at Its Core: HIV-related Stigma Across Contexts
13
Table 2: Comparative Statistics on Poverty
2
Country % Pop. Below Survey % Pop. Below Survey Gini Survey
$1/day Year Nat’l Poverty Line Year Index* Year
Ethiopia 26.3 1999-2000 45.0 1999-2000 30.0 2000
Tanzania 19.9 1993 38.7 2000-2001 38.2 1993
Zambia 63.7 1998 83.1 1998 52.6 1998
Vietnam 17.7 1998 57.2 1993 36.1 1998
*The Gini Index is a measure of inequality. The closer the number is to 0, the more equally distributed income is among individuals or
households. The closer the number is to 100, the more unequal this distribution is.
2
Data from World Development Report 2005: A Better Investment Climate for Everyone. The World Bank, Washington, D.C.
50 percent of all HIV infections, whereas in
Vietnam women make up around one-third of
those living with HIV.
The presence of stigma is perhaps less surpris-
ing in a country like Vietnam where the epi-
demic is concentrated among those already
stigmatized and marginalized (injection drug
users and sex workers). Yet as these studies
clearly indicate, whether the epidemic is
contained within subgroups or has spread more
broadly to the general population, there is little
difference in the ways stigma is expressed. As
will be discussed in detail in the following
sections, differences in the type of epidemic
experienced in fact mask important underlying
commonalities that operate to ensure that
stigma and discrimination persists.
One key feature distinguishing the context in
Vietnam from the other three countries is the
way in which HIV and AIDS have so strongly been
linked, in policy and programs, with illegal drug
use and prostitution—both of which fall under
the general rubric of social evils.” In 2000, the
government of Vietnam merged its National
AIDS Committee with its committees on the
control of illicit drugs and prostitution to create
the National Committee for AIDS, Drugs and
Prostitution. This committee included members
from the National Drug Standing Bureau and the
Department for Social Evil Prevention. Although
this structure changed in 2003, the act of
combining these three social issues under one
program umbrella firmly established the link
between HIV and social evils in the public
imagination. Despite the absence of this very
specific policy and program link in the African
countries, however, the association between HIV
and AIDS and behaviors deemed socially deviant
is nevertheless strong, as discussed in Section
3.1.2.
A further important difference among all four
countries relates to variations in the duration of
the epidemic. In Ethiopia and Vietnam, for
example, where AIDS has only relatively recently
emerged as a problem, lack of in-depth knowl-
edge about HIV and its transmission was a
greater driver of stigma than in Zambia. How-
ever, lack of in-depth knowledge about HIV
transmission was nevertheless a central cause of
stigma in Zambia and Tanzania as well. (This is
discussed further in Section 3.1.1.)
2.2.2 Economic situation: the relationship
between poverty and stigma
Although comparison of the data in Table 2 is
imperfect due to the different years in which
data were collected, these figures still indicate
some degree of variation among all four re-
search countries in terms of poverty. All four
countries can be characterized as poor, with
Zambia clearly the poorest, where not surpris-
ingly, poverty emerged most clearly as a factor
precipitating and exacerbating stigma (Bond,
Chilikwela et al. 2003). Across all four country
settings, it was acknowledged that poverty
plays a role in driving people (especially women)
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
14
to engage in behaviors (such as sex work) that
make them vulnerable to infection. Generally,
the rich were more likely to be stigmatized than
the poor because it was felt that they deserved
their fate for indulging themselves in sinful and/
or pleasurable behaviors “just for fun.” However,
this tendency to stigmatize the rich was miti-
gated by the fact that the wealthy could more
easily hide their HIV-positive status from the
general public. In addition, the poor were more
likely to experience stigma at home due to the
greater strain that caring for someone with HIV
and AIDS imposes on a poor household economy
than on a rich one.
In Vietnam, poverty emerged less as a specific
driver of stigma than in the other three coun-
tries. This might be a reflection of the fact that
the HIV epidemic is less pervasive there as well
as of the countrys economic structure. In
Vietnam, families may have one or at most two
members living with HIV, whereas in the three
African countries many families will have mul-
tiple members affected—if not within their
immediate household, then within their ex-
tended families. The costs of caring for even one
person who is sick or dying with AIDS can be
devastating for any poor family, but when these
costs are multiplied, the weight of the cost
burden can become unbearable—driving some
families to stigmatize, even neglect, their
members living with HIV and AIDS.
2.2.3 The importance of religion
A further important distinction between the
three African countries and Vietnam relates to
the relative importance of religion. All three
African countries are characterized by a profu-
sion of religious orders and sects, most relating
either to Christianity or Islam, nearly all of which
are layered over pre-existing (traditional) belief
systems. Vietnam, on the other hand, is a pre-
dominantly secular society, grounded in Confu-
cianism in combination in recent decades with a
strong commitment to socialist doctrine. In all
four countries, the living retain a strong connec-
tion to the dead through the respect given to
ancestors. The forms which this ancestor venera-
tion takes vary substantially from one country to
the next (in some, such as Vietnam, it is much
more formalized than in others), but this continu-
ity also has implications for HIV and AIDS-related
stigma experienced by families of people living
with HIV, as will be discussed in Section 3.3.2.
This background section has briefly described
the four studies and discussed some of the
contextual differences among the four study
countries. It is clear that there are variations in
the nature of the epidemic, the response to it by
policymakers, and the socio-cultural environ-
ments in which stigma occurs. Clearly, any
response to HIV and AIDS-related stigma and
discrimination will have to account for the
specific contextual elements in each country.
However, despite these important variations in
context, the fundamentals of stigma are remark-
ably similar in all four countries. The differences
in context contribute to differences in expres-
sion and degree, rather than core substance. The
findings discussed in this document suggest
that it is possible to develop anti-stigma inter-
ventions that have a common core, but which
can be adapted fairly readily to different social,
economic and health services contexts. The
project teams have, in fact, taken a first step in
this endeavor with the development of the two
anti-stigma toolkits.
The following section will provide greater detail,
synthesizing the main findings of the four
country studies.
Common at Its Core: HIV-related Stigma Across Contexts
15
3
3.1 The root causes of stigma:
knowledge and morality
3.1.1 The role of knowledge about HIV and
AIDS and fear
This section explores the root causes of stigma
related to knowledge or understanding of HIV
and fear of HIV transmission through routine,
noninvasive daily interactions (casual contact)
with those living with HIV and AIDS, and how
these lead to stigma. The fundamental similari-
ties across the four countries in all aspects of
fear and knowledge and their relationship to
stigma are striking. Only nuanced differences
emerge, for example in the particular form of
casual transmission that is most commonly
feared, or the particular places where that fear
manifests itself.
What people fear
Across all four countries, fear that HIV could be
transmitted through ordinary, daily interactions
with people living with HIV and AIDS that involve
no exchange of body fluids was common.
Examples include contact with an HIV-positive
person through simple touch (shaking hands,
kiss on the cheek, sitting next to); eating food
prepared by or which may have come in contact
with those living with HIV and AIDS; breathing
infected air; or using objects that someone living
with HIV and AIDS had touched (e.g. clothing,
bedding, or eating utensils). These quotes from
Ethiopia, Zambia, and Vietnam are representative
of the fears expressed across all the countries.
It [HIV] might be transmitted through
breathing, we do not know. So being careful
is necessary: avoiding eating food coming
from the patient’s home, not sharing clothes
and not drinking with the glass that the
patient used. This is what I think. (man,
Ethiopia)
People are also afraid whenever he [the
person living with HIV] cooks or cleans the
rice…. During meals, they also fear sharing
things. The family is so fearful. Of course, the
family does love him, but... (wife of a person
living with HIV and AIDS [PLHA],
8
Vietnam)
Maybe when I eat with him, I will swallow a
virus and contract the HIV/AIDS. (man,
Zambia)
How fear causes stigma
Fear of and preoccupation with transmission
through everyday casual contact leads directly
to stigma in the form of isolation of persons
living with HIV and AIDS in all aspects of daily
life. It occurs everywhere, from within the home,
to social gathering places in the neighborhood,
to the market place, health facilities and even
sometimes in places of worship. These quotes
illustrate how fear of a wide range of casual
transmission situations leads directly to stigma.
At the market, if they find the fellow mar-
keter has HIV/AIDS, they start isolating
themselves from that person... if it is the
customer who is sick… even when this
person comes to buy, they fear [they] can
contract the disease, so they start hiding
when they see this person. (man, Zambia)
Some people in this community believe that
HIV/AIDS transmits through kissing, shaking
hands, sleeping together [in the same room],
8
Though we appreciate the importance of not referring to persons living with HIV and AIDS as acronyms, we do use PLHA when citing direct
quotes as a means to shorten the text and ease reading.
Findings
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
16
Box 2: Basic Facts About HIV Transmission
AIDS (Acquired Immune Deficiency Syndrome) is caused by a
virus, HIV (Human Immunodeficiency Virus). HIV is not
transmitted easily. In fact, HIV is a fragile organism that is easily
killed on contact with air and water. HIV can only be transmitted
directly by having sexual intercourse with an infected partner
without using a barrier, such as a condom; through the direct
exchange of blood or body fluids; or from an infected mother to
her child during pregnancy, delivery or breast milk
(www.who.int/hiv/abouthiv/en/). Unlike some bacteria and
fungi, HIV is unable to reproduce outside its living host.
Therefore, it does not spread or maintain infectiousness outside
its host (www.cdc.gov/hiv/pubs/facts/transmission.htm).
In this research, we found that the mode of transmission
described above as “through the direct exchange of blood or
body fluids”—commonly referred to in Vietnam as “through
blood”—is the most commonly misunderstood mode of
transmission in Vietnam. According to the U.S. Centers for
Disease Control and Prevention (CDC), what “through blood”
actually means is that HIV can be transmitted “by sharing
needles and/or syringes (primarily for drug injection) with
someone who is infected, or, less commonly (and now very
rarely in countries where blood is screened for HIV antibodies),
through transfusions of infected blood or blood clotting factors.”
CDC goes on to explain, “Some people fear that HIV might be
transmitted in other ways; however, no scientific evidence to
support any of these fears has been found. If HIV were being
transmitted through other routes (such as through air, water, or
insects), the pattern of reported AIDS cases would be much
different from what has been observed. For example, if
mosquitoes could transmit HIV infection, many more young
children and preadolescents would have been diagnosed with
AIDS” (see www.cdc.gov/hiv/pubs/facts/transmission.htm).
and eating together with an infected person.
Due to this they isolate the person from the
community. For example, if they see him
passing the same way they are passing, they
change their way not to kiss and shake
hands with him… because they are assum-
ing that it is transmitted through breath,
shaking hands, eating together with an
infected person. (woman, Ethiopia)
For self-prevention of the disease, I think I
should keep far from PLHA because those
persons [can infect me]. As we know for
prevention of disease, to keep away is best.
(woman, Vietnam)
Preoccupation with unlikely modes of
transmission
The common fear across all countries of modes
of casual transmission that carry extremely low, if
any risk, is striking. In particular, many fear even
the most peripheral contact with blood (e.g., left
on nail clippers or hair cutting scissors or
through mosquitoes), and other nonsexual body
fluid (saliva, sweat). Some of the most common
fears expressed across countries in relation to
this preoccupation are captured by the follow-
ing statements:
… [HIV] is transmitted through blood and
unsafe sexual relationships only… but in
case we are grazed, it can be transmitted
through blood—even if it is a small scratch
only…. Cutting hair may also cause the
disease. For example, if we hold the scissors
that makes our skin grazed, another person
who holds it later could be infected, too.
(woman, Vietnam)
I cook buns and fry fish and groundnuts for
sale; nobody will buy my fish if I am infected
with HIV. They will say: What if she bent and
the sweat dropped onto the frying
pan?”…People say: “She may have dropped
sweat there; she may have scratched herself
then touched the fish.” People will not buy
the fish... (woman with HIV, Tanzania)
I fear people living with HIV and AIDS
because AIDS might be transmitted through
clothes and shaking hands. ... We fear it
might be transmitted to us through touching
their clothes and through sweat. (man,
Ethiopia)
They know the virus lives in the blood.
Immediately they see blood, they think of the
virus…this is the type of contact they fear
most. (NGO manager, Zambia)
Common at Its Core: HIV-related Stigma Across Contexts
17
9
While we focus here specifically on the issue of knowledge related to HIV transmission, the data from the African countries show how a lack of
in-depth knowledge around living with HIV, for example the longevity of a person with HIV or the difference between HIV and AIDS, leads to the
belief that HIV equals immediate disability and death, and that people living with HIV and AIDS are not productive members of society, but a
burden. These attitudes are reflected in much of the language used to label and describe those living with HIV and AIDS.
Knowing, but still doubting
This fear of and preoccupation with contracting
HIV through impossible or highly unlikely routes
persists across all four countries despite high
levels of knowledge about how HIV is transmit-
ted. Data from all four countries (Bond,
Chilikwela et al. 2003; Banteyerga, Kidanu et al.
2004; Hong, Van Anh et al. 2004; Mbwambo,
Kilonzo et al. 2004) show that respondents know,
or at least can easily recite, the three correct
modes of HIV transmission (sex, blood, and
mother-to-child). However, correct knowledge
does sometimes coexist with incorrect beliefs
about transmission, and there is often a lack of
confidence about how HIV is not transmitted.
The doubts and concerns that exist despite
“knowing” that HIV is only transmitted in three
ways is described by a health worker in Vietnam
and an elder in Tanzania:
I am a health professional; I know that HIV is
transmitted only in three main ways. But
when I come into contact with them [people
living with HIV and AIDS] I still worry and feel
nervous. ... In my case it is my duty, my
responsibility to work with them, to go to
them. But in fact I am fearful.
(health provider, Vietnam)
Even though it is said that HIV is not trans-
mitted through eating, people will still avoid
you [if you are infected]. (Elder, Tanzania)
Persistent focus on casual transmission
The data suggests that the persistence of
doubts about how HIV is transmitted despite
knowing otherwise and the fixation on the least
likely modes of transmission could be the result
of several interacting factors.
Lack of specific, in-depth information about
HIV transmission
The first is the narrowness and lack of depth
9
and specificity in much HIV and AIDS information.
Standard HIV and AIDS messages often focus
solely on how HIV is transmitted, that it has no
cure, and that it kills. Such messages tend to
convey the incorrect impression that HIV is
highly infectious. Rarely do HIV and AIDS mes-
sages focus on explaining how HIV is not trans-
mitted, the relative infectiousness of HIV, and the
fact that HIV is not easily viable outside the
human body. These messages, therefore, allow
fears of casual transmission to go unchallenged
and to persist. By not specifically addressing the
risk of HIV transmission through routes that are
of common concern in people’s daily lives (e.g.,
noninvasive contact with blood, sweat, saliva,
and mosquitoes), the possibility is left open that
these are indeed risk situations to avoid. That
these fears do exist and lead directly to stigma
is amply demonstrated in the data from all four
countries.
Ambiguous or vague messages about transmis-
sion also can perpetuate the incorrect assump-
tion that daily interactions with people living
with HIV and AIDS pose a serious risk of infection.
This is particularly the case for the blood mode
of transmission (Bond, Chilikwela et al. 2003;
Hong, Van Anh et al. 2004; Mbwambo, Kilonzo
et al. 2004). Because of the lack of clarity in
standard messages about how much, and
through what means, blood poses a transmission
risk, people do not have the information they
need to accurately assess the transmission risk
of coming into contact with blood from an HIV-
positive person by touching an object or brush-
ing up against someone living with HIV or AIDS
(e.g., in a road accident), versus through a blood
transfusion or dirty needle. Lacking this clarity,
many people remain preoccupied with and
fearful about common situations where trans-
mission risk is minimal. The lack of specificity and
clarity in messages about HIV transmission, in
particular with relation to blood, and how this
fuels stigma is brought out clearly in all coun-
tries through discussions of hypothetical daily
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
18
interactions with people living with HIV and
AIDS. Typical concerns expressed by study
participants included the following:
What if I’m sitting on a bus next to someone
with HIV or AIDS and the bus crashes, that
person bleeds and I’m cut, and some of his or
her blood gets on my open wound?
What if an HIV-positive person cooking food
cuts themselves and blood drips into the
food, which I then eat?
What if an HIV-positive person drips sweat
into the food they are handling or I use a bed
sheet or article of clothing a person with HIV
and AIDS has sweated on?
What if a fingernail clipper was used by a
person with HIV and AIDS, they cut them-
selves with it, some dried blood remains and
then I use it and cut myself in the process?
What if the person has diarrhea and when
washing the messed clothes you have a cut
and are not wearing your gloves for protec-
tion, you may [contract HIV] as well.
The following quote captures how people’s
doubts about HIV transmission can have an
impact on daily life:
They say eggs transmit the infection. They say
do not eat eggs since they can be infected. ...
Hens are everywhere in town, hotel, bars,
restaurants. The people working there use
condom and throw it in the open field. Hens
eat this. If the condom has the virus the hens
get infected because they swallow it with this
thing [sperm]. The virus goes to the egg, and
if we eat raw eggs we get infected. So people
say do not eat raw eggs. (man, Ethiopia)
Given the narrow and often incomplete or
ambiguous knowledge about how HIV is, or is
not, transmitted, it is not surprising that the
common conclusion to a what if scenario is that it
could potentially pose a significant risk of
transmission and therefore should be avoided.
The data from all countries illustrates the highly
complex thinking process that occurs as indi-
viduals try to make sense of the information they
have received as applied to the reality of their
daily lives. It also shows how having only partial
information can lead to incorrect conclusions
about the risk posed by casual transmission. This,
in turn, may lead to actions that, while perceived
simply as preventive, in fact result in stigmatiz-
ing behaviors, such as minimizing or restricting
contact with people living with HIV and AIDS. For
example, many people refuse to sit next to
infected people on a bus, eat food they have
cooked, buy produce from them, or share
objects with them:
If you are sitting in the bus and sometimes
you are facing somebody [who] looks like
they have symptoms and she is coughing
profusely, you just find everybody will be
turning on the other side. (home-based care
coordinator, Zambia)
Adding to the confusion, doubt, and fear over
whether, and how much, daily activities pose a
risk for HIV transmission is the widespread and
well-established knowledge about how other
viral and bacterial diseases are transmitted,
particularly those commonly associated with HIV
(like tuberculosis and diarrhea), and other
diseases that have a transmission cycle that
includes blood and biting insects, in particular
malaria (Bond, Chilikwela et al. 2003; Hong, Van
Anh et al. 2004). Given this knowledge, doubt
and fear creeps in that HIV might be transmitted
this way too. Knowing that TB is airborne,
diarrhea contracted through infected water,
contaminated food, and infected body fluids or
objects, and malaria through mosquitoes, people
often reason that perhaps HIV could be transmit-
ted these ways too. Without a greater depth of
knowledge about how HIV is, and is not, trans-
mitted, and direct explanations from trustwor-
thy sources as to why HIV cannot be transmitted
in the same way as TB, diarrhea, or malaria, doubt
will remain that it can be. Given the conse-
quences of contracting HIV, as long as even the
slightest doubt remains about the possibility of
transmission through everyday contact, the
Common at Its Core: HIV-related Stigma Across Contexts
19
10
Fear-based messages were common early in the pandemic in Africa, and until very recently in Vietnam. See Hong et al. 2004 for more detail
on the content of fear-based messages in Vietnam.
11
See Section 3.1.2 for more on the moral dimensions and linking of HIV to “immoral behaviors.”
choice will be made to, where possible, avoid
contact with people with HIV.
Fear-based public messaging
Another factor that adds to the fear and desire
to avoid any situation that might pose a poten-
tial transmission risk is the legacy of fear and
panic created by fear-based messages about
HIV,
10
coupled with sensationalized reporting
around HIV. Fear-based messages in health
campaigns focused heavily not only on death as
the outcome of HIV, but also on the depiction of
a painful, disfiguring, and sometimes shameful
death (through linking HIV to socially unaccept-
able behaviors).
11
Hong et al. (2004) write about
the experience in Vietnam as follows: “Many
posters use highly emotive symbols such as
human skulls, bleeding syringes, and coffins, or
they contrast images of sick and dying drug
users with images of robust, healthy people.”
These kinds of messages heighten the anxiety
and magnify the fear of contracting HIV. As put
by a health worker in Zambia, “They just make
people scared.” This fear fuels stigma in the
form of isolation of people living with HIV and
AIDS, as explained by a female respondent in
Ethiopia:
The reason people isolate a person living
with HIV/AIDS is because they fear HIV/AIDS.
The reason they fear HIV/AIDS is because
they hear from different mass medias, i.e.
radio and TV, how horrible this disease is and
how it is widespread in the country.
The focus, both in public health campaigns and
the media, on negative images of sick, dying,
and disfigured persons; the sensationalization of
alleged cases of vindictive and purposeful
infection of others by people living with HIV and
AIDS (for example by injecting their blood into
others or having premeditated unprotected
sex); and lack of positive images of the more
prevalent reality of people with HIV and AIDS
who are productive and responsible members
of society ratchets up the fear and panic of
contracting HIV, hence creating stigma toward
those living with HIV and AIDS. As a woman in
Ethiopia explained:
When I watch TV and listen to the radio
HIV/AIDS program presented in the form of
drama, the message of the drama scares me
and makes me cry. ... In the drama they show
how the disease makes people suffer and
change their physical appearance and look.
It disfigures the face of the patient, changes
the color from dark to pale. This makes me
worry much.
In addition to perpetuating stigma, the creation
of this fear has public health impacts. For
example, people may avoid getting tested for
HIV. Mbwambo et al. (2004) describe the impact
on testing as follows: “Respondents also dis-
cussed how fear of testing is related to images
people have of a grossly disfiguring disease as
shown on billboards and that a positive finding
of a test implies a sentence of death.” People
may also believe that only sick-looking people
have HIV, and so deny their own potential risks
and any need for behavior change. A woman in
Ethiopia explained how images of thin, sick
people with HIV and AIDS create fear and
stigma, as well as feeding the misconception
that only sick-looking people have HIV.
As an example of fear-based messaging, the press
reported that this boy was deliberately injected with
blood contaminated with HIV by someone seeking
revenge against his father.
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
20
12
Karma can perhaps most simply be thought of as the law of cause and effect. The principle is similar to that expressed by the Christian
verse, As ye sow, so shall ye reap.” The word karma means “action“ and is used as shorthand for the idea that every action causes a reaction
in the future. Actions that are in harmony with moral precepts will bring positive results back to you, whereas actions that contravene these
precepts will bring you suffering.
Advertisements and dramas [that show only
thin people with AIDS] encourage people to
fear HIV and AIDS and people with HIV and
AIDS very much. Moreover, they make people
think that a healthy-looking person doesn’t
have HIV and they isolate thin people.
Evolving knowledge on HIV and AIDS
Adding additional doubt to the mix is the
relative newness of the HIV epidemic and the
constantly evolving, sometimes contradictory,
scientific and medical knowledge about HIV and
AIDS (Bond, Chilikwela et al. 2003). Because
knowledge continues to grow on all aspects of
HIV, including transmission, people begin (or
continue) to doubt the validity of existing
information, causing fear that current informa-
tion about transmission might be wrong.
The prevalence of “what if questions, the
preoccupation with impossible or highly unlikely
modes of transmission, and the continued fear of
casual transmission across all countries also
indicate that individuals are not receiving
information in an interactive format that allows
people to think through the information re-
ceived, discuss it, and then raise questions with
an informed, trusted moderator to provide
answers.
3.1.2 The role of values, norms, and moral
judgment
The moral dimensions of stigma are well known
and indeed can be traced back to the original
meaning of the word itself, which according to
Goffman relates to “bodily signs designated to
expose something unusual and bad about the
moral status of the signifier” (Goffman 1963).
Like the fears associated with HIV transmission
discussed in the previous section, assumptions
made about the moral integrity of people living
with AIDS were a central cause of stigma in all
four countries, and these assumptions underpin
the tendency to blame people for their HIV
infection—as well as the shame felt at some
stage almost universally by those living with HIV
and AIDS and those associated with them.
The tendency to link HIV and morality might be
related to the fact that affliction is often per-
ceived as an outward manifestation of a moral
transgression. In some Asian cultures, these
perceptions might be couched in terms of
karma.
12
In a number of African societies, specific
illnesses or sets of symptoms are associated
with having broken one or more social prohibi-
tions. Among the Tswana people, for example,
the term meila refers to transgression against
any of a number of taboos surrounding sexual
relations and childbirth (Staugard 1985), and
many sexually transmitted infections are attrib-
uted to meila. Elsewhere, including the Judeo-
Christian traditions of North America and Europe,
it is not uncommon for people to believe that
illness is a punishment for ones sins.
Whatever its roots, the tendency to associate
illness with moral impropriety is a central
contributing factor to HIV and AIDS-related
stigma. This stigma is exacerbated by the
seriousness of the illness, its mysterious nature,
and its association with behaviors that are either
illegal or socially sensitive (e.g., sex, prostitution,
and drug use). Also relevant is the perception
that HIV infection is the product of personal
choice: that one chooses to engage in “bad”
behaviors that put one at risk and so it is one’s
own fault” if HIV infection ensues. A woman in
Ethiopia, for example, explained:
Those who go out of God’s permission will be
infected. I always advise my children to be
loyal to God and respect his rules. Thus, I
Common at Its Core: HIV-related Stigma Across Contexts
21
won’t mind if they refuse to be loyal to God
and die [of AIDS].
All of these elements have strong resonance
with the moral dogmas of many religious texts
as well as with the form of socialism practiced in
Vietnam. In Zambia, for example, most respon-
dents identified “immorality as the main factor
influencing the spread of HIV and AIDS. As one
religious leader in Lusaka put it, Those patients
are promiscuous… careless with themselves.
God is punishing them for disobedience...
because the diseases are not traditional in
nature and those affected are examples of what
God can do to those who disobey His command-
ments….” Similarly, the following statement was
made in Tanzania: “…AIDS is like Sodom and
Gomorrah—an abomination of God… it is
chastisement. In the Bible it says that ‘I will not
destroy with water or fire.’ What a person sows
so shall he reap.” In Vietnam the same types of
sentiments were expressed, but couched in
different terms. Rather than the explicit religious
references, the Vietnamese refer to people with
HIV as having contracted the virus through a lack
of self-discipline—through “indulging in play
and engaging in social evils.” Lack of serious-
ness, discipline, and personal integrity contra-
venes many of the core tenets of Vietnamese
society, which stem ultimately from Confucian-
ism. Notably similar findings have been identi-
fied elsewhere, for example in Thailand
(Songwathana and Manderson 2001).
This section explores the intersection between
HIV and AIDS-related stigma and the values and
norms that frame any moral community, but in
particular those of our study sites. Three com-
mon elements are discussed: (1) the ways in
which HIV and AIDS-related stigma functions to
sharpen the boundaries of the moral commu-
nity—creating a clear division between us” (the
presumably uninfected), and “them (those
known or presumed to be living with HIV and
AIDS); (2) the tendency in all sites for members
of the wider community to assign degrees of
guilt” or “innocence to HIV-positive people
according to assumptions about how that
person acquired his or her infection; and (3) the
role of gender in these processes.
Creating a divide between “us and “them
Across all the sites, HIV and AIDS-related stigma
has become a mechanism for sharpening the
boundaries of the “moral community, whether
religious, as in all three African sites, or socialist/
Confucian as in Vietnam. In other words, stigma
reinforces previously defined boundaries
between us” (the normal/righteous/upstanding
citizens) and “them (the deviant/bad/”fallen
ones). The fact that one has become infected
with HIV is used to distance that person from the
mainstream community, to set him or her apart,
marked out as having transgressed or sinned
against god and/or society. This mark (or literally,
stigma”) is a cause for opprobrium in and of
itself—but all the more so because of the
perception that he or she has become infected
by choosing to do things (such as inject drugs or
have unsanctioned sex) that he or she knows are
wrong. Herek and Glunt (1988) discuss this
phenomenon in relation to an earlier phase of
the HIV epidemic in the United States and note
that the public health language serves to
underscore this boundary-making: “the general
public” is distinguished from “risk group”—
suggesting that gay men and IDU are not
members of the general public. It is important to
note that this type of distinction persists today,
where we are seeing the return to a focus on
core transmitters” and “high risk groups” in the
U.S. public health system. This boundary-making
serves at least two purposes: it enables the
(apparently) uninfected to reinforce their
notions of themselves as being morally right and
upstanding citizens, while also allowing this
group to deny its own level of risk, thereby
enabling them to believe they have no need to
contemplate any changes to their own behavior.
In Vietnam this separation can be quite explicit,
as the following quotes (both from Hong, Van
Anh et al. 2004) indicate. Many people disguise
their contempt for people living with HIV and
AIDS by expressing their sentiments as “legiti-
mate” concerns about prevention. This 65-year-
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
22
13
Bond et al. 2003:34 discuss this notion of disorderly sex, citing Mogenson 1995, 1997.
old father of an HIV-positive man believes the
government should put all those living with HIV
on an island to live and work together. He
explained further that:
The government should not let PLHA wander
in the community and in the society. They
should be split off. I say this not because I
hate them, but because I am thinking of the
protection of the community. (father of
PLHA, Vietnam)
In another city, Hai Phong, a 50-year-old woman
participating in a focus group discussion ex-
pressed a similar opinion:
… the government should create a separate
area in order to limit them [PLHA]…. If there
is no separate place and we let them
[intermingle] like now, people will be afraid.
The presence of HIV also enhances pre-existing
stigmas and serves to retrench social values and
norms about correct, normal, or appropriate
behavior. In Vietnam this takes the form of a
discourse of social evils. In the African settings it
tended to be couched in religious terms—
especially reinforcing the pre-existing stigma
against sex workers and youth. This issue is
discussed further below.
The continuum between “innocence
and guilt”
Because of the clear associations that exist in
peoples’ minds between HIV infection and
morally incorrect behaviors, and as a way to
distance oneself from any possibility of HIV risk,
the first question invariably in peoples’ minds
when they discover someone is living with HIV is:
How did he/she get it? Often the asker will answer
the question simply through assumptions made
about the persons character or known behav-
iors. Because of variations in the nature of the
epidemic among the four countries, the most
common answer to this question differed
somewhat across sites. In the three African
countries, for example, it was generally assumed
that the person in question became infected
with HIV through sex—more specifically through
inappropriate, “immoral” or “disorderly
13
sex. In
Vietnam, if the person in question was a man,
especially a young man, it was generally as-
sumed that he became infected through
injection drug use, sex with prostitutes, or
generally “indulging in play.” Clear distinctions
were made in all sites between those who
became (or were presumed to have become)
infected through such “improper behaviors, and
those who were deemed “innocent victims”—
such as sexually faithful married women (or men)
who became infected because of their spouses
philandering; health care workers or police
infected in the course of their work; or children
infected through vertical transmission. Thus, in
all sites there exists in people’s minds a kind of
continuum from presumed guilt to presumed
“innocence.” Although all people with HIV
experience some degree of stigmatization,
where one falls along this continuum will
determine, to a significant extent, the type and
degree of stigmatization received from ones
family and the wider community. The parallels
across the sites in how this continuum is ar-
ranged are striking with only a few important
differences being, for example, the prominence
of injection drug users in Vietnam and the
relative importance of youth as a guilty group
in Africa.
Box 3 depicts this continuum in schematic
form—combining impressions and data from the
African and Vietnamese sites. This schematic
broadly generalizes a complex picture into a few
categories plotted in a very simplistic and linear
way. In real life, the specific placement of any
individual in any single circumstance will vary
considerably, sometimes from one person to the
next. The category broadly labeled “women who
get HIV from their husbands” is a good example.
The extent to which such a woman is considered
more “guilty or “innocent” will depend on a
range of factors. For example, is she considered
by the community to be a “proper woman”? If so,
Common at Its Core: HIV-related Stigma Across Contexts
23
Children
Women who get
HIV from their
husbands
Health workers
infected on duty
Men
Unmarried
women
Sex
workers
Injection
drug users
Innocent
Guilty
Box 3: Schematic of “Innocence-to-Guilt” Continuum
she is likely to be deemed “innocent,” an unwit-
ting victim of her husbands bad behavior.
However, if such a woman has been in conflict
with any of her neighbors or if for some other
reason the community wants to cast her out,
then people will find reason to question her
moral integrity and guilt will be imputed.
These cognitive continua were illustrated in a
number of ways, as the following quotes
indicate:
In the case of women who unfortunately get
infected, we should give them support and
educate them so that they can avoid
transmitting to others. Regarding the case of
drug injectors, the damage is already done
and they cannot be educated. We should
definitely put them in a separate place
because we cannot educate those people.
The other group—they deserve our pity and
we should protect them (participant in FGD
of women over 50 years old, Vietnam).
The unfaithful, like in marriage, deserve it
while the faithful ones do not deserve it.
(TB patient, Zambia)
The continuum also indicates the ways in which
HIV and AIDS-related stigma interacts with pre-
existing stigmas; in addition to creating stigma
where none previously existed, HIV and AIDS
create double stigma—the pre-existing stigma
associated with an unapproved behavior (such
as injection drug use or “immoral” sex), in
combination with the stigma of living with HIV.
In Vietnam, injection drug use and prostitution
are widely regarded as social evils, an associa-
tion entrenched in the minds of the public as
well as in legislation and policy (see Hong, Van
Anh et al. 2004). Because HIV often is associated
with these pre-existing stigmatized groups, HIV
itself has started to be referred to as a social evil.
This linkage between HIV, drug use/sex work,
and social evils therefore not only affects those
who do engage in these behaviors, but all
people living with HIV, serving to magnify HIV
and AIDS-related stigma and the misery it
creates. A parallel example from the African
settings relates to the close association made
between HIV and AIDS and promiscuity, as can
be seen in the following remark of a woman in
Ethiopia:
The community believes that people get
infected [with HIV] due to their deviant
behaviors when they are having sexual
contact with different partners. They think
that a person who is infected is a
promiscuous person.
Given the close associations between HIV and
moral impropriety, the finding in all sites that the
harshest stigma is reserved for those expected
to uphold moral laws and the moral fabric of
society should not be surprising. In all sites, for
example, HIV-positive women tended to be
more highly stigmatized than men (this is
discussed further in the next section). In Africa,
those in the clergy who became infected with
HIV were the object of particular opprobrium,
while the equivalent in Vietnam was members of
the Communist Party. Because these are the
social roles specifically designated as moral and
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
24
social role models, their “fall from grace” is
particularly heavily stigmatized. The following
quotes illustrate this phenomenon:
If let’s say the pastor has HIV/AIDS, the
respect there goes away. Even the Bible he is
holding, people will say it’s also contami-
nated. Whatever he says, people won’t listen.
(traditional healer, Zambia)
If you are a Party member, for example, and
you go and do an indecent thing and you get
infected, the Party should definitely expel
you. (participant in FGD of grassroots
organizations, Vietnam)
In addition to serving as a mechanism for
inducing and enhancing stigma, the innocence
to guilt continuum, like the “us” and “them
boundary strengthening, also creates the
possibility of absolving people from guilt if they
do become HIV-positive. As reported from
Zambia, for example, if a health worker can claim
that she or he was infected through work and
not sexual behavior, and that he or she is there-
fore “innocent,” he or she can retain a reputation
for being morally upstanding—though even in
this case, doubts will likely linger: “Other people
will still speculate about how the health worker
got infected and make judgments about sexual
behavior” (Bond, Chilikwela et al. 2003).
Shame, blame, and the role of gender
A key similarity across all research sites was the
role that gender plays in the nexus between
HIV-related stigma, moral judgment, shame, and
blame. Although this interface was complex, it is
clear that women generally bear the strongest
brunt of this type of stigma. The reason underly-
ing this seems to be that women in all of these
settings are expected to uphold the moral
traditions of their societies. HIV is regarded as
evidence that they have failed to fulfill this
important social function. To phrase the problem
otherwise:
Women living with HIV and AIDS (or more
often, suspected to be living with HIV and
AIDS) are regarded as everything they
should not be—sick and slim when they
should be healthy; being cared for when
they should be caring for others; sexually
deviant when they should be sexually
righteous. To be HIV-positive is not to be a
proper woman (Bond, Chilikwela et al.
2003).
A fundamental double-standard exists in all
study settings, whereby men are generally
expected to be reckless, adventuresome and
more likely exposed to a whole host of sexually
transmitted infections (STIs) (including HIV), and
women are expected to be sexually faithful,
chaste, and morally upstanding. Again, the
specific ways in which these values are ex-
pressed may differ from one setting to the next,
but the core underlying issues remain startlingly
consistent.
In Vietnam, the family is at the center of society.
Women, more than men, are expected to put
their families first, to support and reinforce the
family in all their actions and deeds. Although
the socialist ideology of the country promotes
and supports equal rights for women in all
aspects of social life, both government and
society in general continue to embrace tradi-
tional Confucian values, including those that
apply to gender (Go et al. 2002; JVnet 2004). So,
while Vietnamese women are on the one hand
encouraged to participate fully in employment,
politics, and social life, they are nevertheless
expected to prioritize their roles as wives and
mothers (Hong 1999; JVnet 2004). A woman
engaging in social evils” such as drug use (which
undermines both the reputation and economic
well-being of families) or sex work (said to
“break the family’s happiness”), therefore, is
strongly judged and simply not tolerated; and
HIV infection is considered de facto evidence of
such involvement. This sentiment is expressed in
the following quotes:
People do not hate a drug-addicted man
nearly as much as a drug-addicted woman.
(participant in FGD of women 18-24 years
old, Vietnam)
Common at Its Core: HIV-related Stigma Across Contexts
25
14
Commonly referred to as secondary or courtesy stigma.
To say frankly, if men are still young and they
indulge in play and get [HIV] infected, that’s
the general story of society. If a girl gets this
disease, no one would like to get close to her,
because it is a problem of her conduct and
her morality. It is not tolerated in females
compared to males. (female community
counselor, Vietnam)
Although HIV-positive women in general may be
more reviled than HIV-positive men in Vietnam,
as a whole they are not generally blamed
directly for bringing HIV into a family (although
they may be in specific instances), as this is often
known to have happened through the husband’s
injection practices.
In Tanzania, Zambia, and Ethiopia, more women
than men are living with HIV (UNAIDS 2004a).
Findings in all three of these country studies
show that women tend to be both more heavily
stigmatized than men for having “failed as
proper woman and blamed more often for
“bringing” HIV into a family or marriage. In
Ethiopia, for example, although some people are
sympathetic to women exposed to HIV for
reasons beyond their control, women are
nevertheless more likely to be viewed as the
source of HIV and blamed (Banteyerga, Kidanu et
al. 2004). As a woman explained, “[Women]
would be blamed more than men for being
promiscuous and contracting the virus.” Similarly,
a man (also in Ethiopia) made the following
comment:
A man would receive more respect than a
woman because he is a man. And if a man
gets infected, it will be said, “He got infected
accidentally.” But if the woman gets infected,
the gossip about her will be more exagger-
ated. People say she brought the disease by
going out with different men.
A very similar remark was made by an HIV-
positive woman in Zambia, who observed that
“the word disgrace’ is used more on women…
People say women are the ones who bring
sickness most of the time. They are the ones who
start [the illness].”
Whether or not an individual woman is blamed
for “bringing” HIV into a home, the impact of HIV
and AIDS-related stigma in all study sites was
most profound for women, as will be discussed
further below.
3.2 Expressions and forms of stigma
The forms of stigma documented in each
country can be categorized into four broad,
loosely defined groups: physical, social, verbal
and institutional (see Table 3). While the specific
expressions of stigma were numerous and
varied within settings, the most frequently
experienced forms were similar across countries
no matter whether one was in a town in Vietnam,
or a rural village in Ethiopia. We focus in this
section on the forms of stigma that are directly
experienced by people living with HIV them-
selves, noting where there are particular gender
differentials. However, many of the forms of
stigma described below are also experienced by
people closely associated with those living with
HIV and AIDS, like family (including children) and
other caregivers.
14
The forms and degree of
stigma also change over the course of an
infected person’s experience with HIV and AIDS.
For a detailed discussion of this issue, see Bond
et al. (2003).
3.2.1 Physical stigma
The forms of physical stigma can be grouped
into isolation and violence, with the former
being widespread and the latter less common.
Physical isolation of people living with HIV and
AIDS occurs in all locations, from the home to
community gathering or public spaces (like tea
shops, markets, sports grounds, buses, places of
worship), to within workplaces, schools and
hospitals. Common expressions within the home
include marking and separating out typically
shared objects like eating utensils, clothes, and
bed linens and making those with HIV and AIDS
sleep in separate quarters and eat alone, highly
unusual actions in all these countries where
space is limited and eating together is the norm.
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
26
Table 3. Expressions and Forms of Stigma
Physical
Isolation
X Separating sleeping
quarters
X Marking and separating
eating utensils
X Separating clothing and
bed linens
X No longer allowing
person to eat meals with
family
X Confinement to certain
rooms of house
X No longer allowing
person to participate in
housework (e.g. cooking
food)
X Public rejection (refuse to
sit next to person on bus,
bench, at church, tea
shops or in bars)
X Separation from children
X Abandonment by family
Violence
X Beatings
X Being kicked
X Throwing stones
X Arrests
Social
Isolation
X Reduction of daily
interactions with family
and community
X Exclusion from and
shunning at family and
community events
X Loss of social networks
X Decreased visits from
neighbors
Voyeurism
X Increased visits from
neighbors, not out of
concern but to mock
individual or report back
to community
Loss of identity/role
X Viewed and treated by
community as having no
future
X No longer considered
productive member of
society
X Automatically
associated with social
evils” (e.g., drug use, sex
work)
X Expected to adopt new
role of teaching others
about HIV and disclosing
status
X Loss of power, respect,
and standing in
community
X Loss of right to make
decisions about own life
X Loss of marriage and
childbearing
opportunities
Language/Verbal
Gossip
X Speculation on how
person acquired virus
X Spreading rumors
X Whispering behind
back
Taunting
X Insults
X Mocking
X Finger-pointing
X Threats
Expressions of blame and
shame
X Scolding (e.g., blamed
for not listening to
elders)
X Blamed for bringing
“bad luck” to whole
family
Labeling and use of
derogatory words to
describe people living with
HIV or AIDS
X In Africa: “moving
skeleton,” “walking
corpse, “keys to the
mortuary”
X In Vietnam: “they are
social evils,” “scum of
society,”deserves to
die”
Institutional
Loss of livelihood/future
X Loss of employment
X Loss of customers/business
X Denial of loans, scholarships, visas
Loss of housing
X Denied housing
X Eviction by landlord
Differential treatment in schools
X Teachers supporting the idea of
separating children of HIV+
people to “protect other
students
Differential treatment in health
care settings
X Excessive and unnecessary
precautions by health care staff
X Shuffled between providers to
avoid caring for HIV+ patient
X Denial of health services
X Provision of substandard
treatment
X Use of separate medical tools for
people with HIV or AIDS
X Place patients with HIV in
separate rooms
Differential treatment in public
spaces
X Refusal of services (e.g., will not
be served food by vendors, or not
served in shared containers)
Media and public health messages
and campaigns
X Posters and news stories
emphasizing negative images of
people with HIV and AIDS and
employing fear tactics to warn
about HIV and AIDS
X Posters and news stories
presenting factual information
about HIV and AIDS with a moral
and judgmental tone
X Inflammatory news stories about
HIV-positive individuals
purposefully infecting others
Common at Its Core: HIV-related Stigma Across Contexts
27
When they found out that he was HIV-
positive, they started giving him his own
spoon, water container, plate, cup, and
everything by himself. (woman, Tanzania)
Expressions in public spaces include not sitting
next to or moving away from a person with HIV
in public transport, in places of worship, while
waiting in a queue or on a bench, or at a tea
shop or bar. As a woman in Zambia explained,
“No one would sit next to you [on the
bus]…maybe you cough and everybody [has]
their eyes on you.” In places where eating
together from a shared platter, sharing a com-
munal drinking container (e.g., in Zambia,
passing around a communal cup of locally
brewed beer), or even sharing washed cups
(e.g., tea shops in Vietnam) is common, people
living with HIV and AIDS may be publicly ex-
cluded, or the usual customs visibly altered
when an infected person is present. For ex-
ample, suddenly individual plates or spoons and
forks appear, where eating with hands from a
common platter is the norm. Some actions may
be very subtle, but clearly recognizable to all as
being out of the ordinary. As recounted by a man
living with HIV and the mother of a person with
HIV and AIDS, both in Vietnam:
I asked, “Please give me a cup of sugar cane
drink” and the vendor said: “If you drink in
the cup, other persons will see you drink from
that cup and they won’t dare to use it. So take
the drink in a [plastic] bag. (man living with
HIV, Vietnam)
When we watched TV with them they put
mosquito-killing incense beside them. Do
you see? Nothing happened when others
were sitting there but when we came they
took the incense and put it beside them. This
made us feel ashamed. (mother of PLHA,
Vietnam)
Less common, but still present, are more
extreme manifestations of physical isolation
including complete abandonment by family,
divorce, or separation from children. Women are
more likely to experience, and therefore fear,
this kind of stigma. Women’s lack of access to
resources and dependence on husbands and
families leaves them particularly vulnerable to
abandonment, divorce, and separation from
their children, and with little recourse to
challenge these actions. This father of a woman
with HIV in Vietnam explained that her son was
taken from her in order to protect him from
contracting the virus:
The child is living here to avoid being
infected. I let him live with us because I am
frightened [that he may become infected]. It
is better to make disease prevention.
Supposing a mosquito stings his mother?
That mosquito will continue to sting my
grandchild [and so infect him]. What if there
are some marks or traces of scabies and
itches on my grandchild’s body and his
mother scratches for him? He can be infected
when the place bleeds.
In the African urban settings, abandonment
often took the form of sending a person with
AIDS back to the village to die,”
15
thereby often
transferring the responsibility of care to usually
poorer, rural relatives with less access to health
care and other support services.
I have been chased away by my husband. I
have gone to our own [natal] home; even
there they chased me away. I beg for assis-
tance. You see…this illness is associated with
sexual promiscuity. When I tell them at home
they feel ashamed. (woman living with HIV,
Tanzania)
While physical violence against those living with
HIV and AIDS, or self-inflicted violence (such as
suicide), was a less frequently described form of
stigma, it was one that had a deep impact when
it did occur and that generated much fear and,
as will be discussed later, impedes disclosure of
HIV status. A woman living with HIV in Tanzania
explained to an interviewer that she “felt very
15
With the tradition of burying the deceased in their home village, part of this practice may be due to the fact that transporting a live person
is substantially cheaper than moving a dead body.
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
28
bad to inform my partner because “he might
commit suicide or kill me, saying, ‘woman you
[are] the one who brought this illness to me.’”
3.2.2 Social stigma
The manifestations of social stigma can be
grouped into social isolation, loss of identity and
role, and voyeurism. Isolation comes in various
forms both in relation to important family and
community events, as well as in daily life. It takes
the very visible form of the disappearance of
invitations to significant family and community
events such as weddings, or outright orders to
stay away. This woman living with HIV in Ethiopia
described her experience: “I have a problem
with my family, especially my father. He does not
want me to participate in any kind of social life.
… He always tells me, ‘Please do not show your
face to others and do not be close to our
relatives.’ I think he says this for the sake of his
family reputation.” Perhaps a less blatant, but
equally damaging expression of social stigma is
no longer being asked to participate in the
planning or hosting of events. In the diaries kept
by people living with HIV in Ethiopia, women
were more likely than men to document experi-
encing this type of stigma. According to this
woman living with HIV in Ethiopia:
Last time a ceremony was conducted in the
neighboring home and I went to help the
women who were peeling and chopping
onions and doing other things. However,
they did not want me to participate and one
of them told that I should get rest and the
onion would burn my eyes.
In the realm of daily life, the most common forms
of social stigma were the waning or disappear-
ance of existing friendships and the reluctance
of neighbors, friends, and relatives to visit or
lend or borrow common household implements
and food items, important actions for survival in
poor communities. A woman in Vietnam ex-
plained that she terminated all contact with a
childhood friend because “people told me I
should stop spending time with her. They said
things like, ‘I know you have been close with her
from childhood, but now she goes on that track
[sex work] so don’t play with her.’” People living
with HIV and AIDS reported, and community
members noted, that visits by family, friends, and
neighbors tapered off, as did requests for
assistance with daily needs (e.g., borrowing
some salt, cooking oil, a hoe, money to get a sick
child to a hospital). A man in Ethiopia explained:
They try to avoid the person by not shaking
hands, turning [their] face, and showing their
back and even do not exchange verbal greet-
ings and would not sit with him in places where
they go for relaxing. They will not share knives,
cooking utensils, and other tools like sickle, axe.”
Another form of stigma is voyeurism. This is most
frequently described in the African countries as
an increase in visits to people living with HIV,
particularly once AIDS has set in, where the
specific intent is to see how the person is
progressing in their illness and report back to
the community. As a female respondent in
Ethiopia explained: “When I was ill, my neighbors
came and visited me, but from behind they were
[talking about] me.” This voyeurism, and the fear
of it by people living with HIV and AIDS and their
families, can lead to increased physical and
social isolation of the person, as the protective
or coping reaction becomes to keep all visitors
away. A woman in Tanzania explained this way:
“[People go] to see someone [with AIDS] for the
purpose of making amazement of him. … Others
are going there to make a mockery. They are just
coming to glare at you.”
In addition to isolation, social stigma is also
expressed through the taking away or diminish-
ing of the roles, responsibilities, and social
standing of those living with HIV and AIDS within
the family and larger community. As a result, HIV-
positive people lose power, respect, and iden-
tity. This expression of stigma is a result of both
how people living with HIV and AIDS are as-
sumed to have contracted HIV, as well as the
belief that HIV means immediate disability and
death. As discussed in the previous section on
the causes of stigma, people with HIV are often
assumed and judged to have transgressed some
social norm of appropriate behavior and are
automatically associated with social evils” (IDU
Common at Its Core: HIV-related Stigma Across Contexts
29
and sex work) in the case of Vietnam, or promis-
cuity and sin in the African countries. As such,
they are frequently viewed as irresponsible and
immoral and therefore not fit to command
respect, participate in decision making, or hold
positions of authority. This view is strengthened
by the widespread belief that contracting HIV
means immediate disability and death, so
people with HIV and AIDS have no future and can
no longer be productive members of society. Put
bluntly by a Tanzanian man, When they see that
someone has HIV, they see him as already dead.”
3.2.3 Verbal stigma
A third form of stigma is verbal. This can be
direct (pointing fingers, insulting, taunting, or
blaming), or more indirect (gossip and rumors).
Gossip and rumors focus on speculation about
whether a person has HIV, usually because of
visible signs, illness, behavior, or association with
groups seen as “high risk.” Once a person is
assumed to be HIV-positive, people often
speculate about how he or she contracted HIV.
Gossip was reported to be one the most signifi-
cant forms of stigma, particularly for women. As
this woman living with HIV in Ethiopia noted:
Let me tell you from my experience. In our
village I am the only woman who is sus-
pected for having the virus. However, many
men are suspected and known for having
the virus. But nobody seems concerned and
talks about the men. They spread gossip
about me.
More direct forms of verbal stigma were ex-
pressed through insulting, mocking, taunting,
cursing, and threatening those living with HIV
and AIDS. They also included the expression of
blame and shame, often through scolding or
judgmental statements indicating people with
HIV and AIDS got what they deserved.” People
living with HIV and AIDS are blamed
16
for becom-
ing infected with HIV through their “irrespon-
sible” and “selfish behavior, and for bringing
shame to themselves, their families and the
community as well as becoming a burden to the
family.
An integral and hurtful expression of the verbal
stigma is the use of derogatory, demeaning and
pessimistic or despairing language to talk about
or label people with HIV and AIDS. In the African
countries, where the epidemic is more general-
ized and has been present longer, terms com-
monly used to describe HIV and AIDS assume the
outcome is death (makizi yaku mochari, or “keys
to the mortuary” in Zambia); the physical appear-
ance of a person with advanced AIDS (maiti
inayotembea, or “walking corpse” in Tanzania);
and the behaviors associated with infection and
judgment of the person (anawila posa gwila, or
“laid your hands where you shouldn’t,” in Zam-
bia). In Vietnam, where the epidemic has been
concentrated among injection drug users and
sex workers, the language used focuses less on
describing the physical attributes of people with
AIDS and the outcome of death, and more on the
behavioral aspects of HIV and judgment, using
phrases like “he got his just desserts.” A fuller
discussion of the stigmatizing terms docu-
mented in the data can be found in the country
reports (Hong 1999; Bond, Chilikwela et al. 2003;
Banteyerga, Kidanu et al. 2004; Mbwambo,
Kilonzo et al. 2004).
3.2.4 Institutional stigma
Institutional stigma refers here to differential
treatment within any broadly defined institu-
tional setting that leads to a negative outcome
for the person living with HIV. The main areas
documented in the study had to do with loss of
or inability to secure livelihoods, housing, health
care, and education. It also includes losing
access to new or future opportunities because
an HIV test is required to qualify for a job, loan,
scholarship, or visa for travel; differential treat-
ment within an institution that leads to poorer
outcomes (for example having to wait longer for
health services); and the way those with HIV are
depicted in the media. Not only do all of these
forms of stigma lead to reduced life chances for
people living with HIV and AIDS, but they also
often serve to visibly mark a person as having
HIV, exposing him or her to all the other forms of
stigma discussed above.
16
For more in-depth discussions on blame and shame and stigma, see Bond et al. 2003, Banteyerga et al. 2004, Mbwambo et al. 2004, and Hong
et al. 2004.
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
30
3.3 Consequences and impact of
stigma
This section explores both the impact of stigma
and its consequences for individuals living with
HIV and AIDS, their family members and HIV/AIDS
programs. Like the causes and forms of stigma,
there are differences in impact from one context
to the next. These differences relate to individual
personality and circumstance (everyone’s
experience of stigma is somewhat different,
even within a given social setting); the nature
and duration of the epidemic; and social, health
care, and cultural contexts. The specific conse-
quences and impact of stigma for each country
setting is described in more detail in the country
reports. This section focuses on the similarities
across the research sites, and concludes with a
brief consideration of what these consequences
can and likely do mean for the epidemic more
generally.
3.3.1 Consequences of stigma for individuals
living with HIV and AIDS
HIV and AIDS-related stigma has a wide range of
consequences for people most directly affected:
those living with the condition. Across all of the
research sites, we found a remarkable degree of
consistency in the nature of these conse-
quences. Given the tremendous impact a
disclosed HIV diagnosis can have on the life of a
person living with HIV because of stigma, it is
not surprising that so few people choose to be
tested for HIV, and that so many of those who do
test, and do test positive, try by any means to
prevent their HIV status from becoming known
to people around them. This section provides an
overview of some of the more important conse-
quences of stigma for people living with HIV and
AIDS in our study sites.
Loss of livelihood
People living with HIV and AIDS in all research
sites reported one of the most profound conse-
quences of stigma was the impact it had on their
ability to earn a living. People in formal employ-
ment found themselves being dismissed upon
disclosure (whether voluntary or not) of their HIV
status, and those selling goods or cooked food
found their client base dropping off—particu-
larly once they began to show symptoms of HIV-
related diseases. Participants in a number of the
African sites reported that domestic workers
with HIV were almost always dismissed. The
following quotes from across the research areas
are illustrative:
…if the person is looking to be sick and she is
selling at the market, people will not buy her
goods—especially if she is selling cooked
food. (woman, Zambia)
…I was working as a department head in a
private transport corporation. Many drivers
got HIV in that organization…and when
they got sick they were fired. (man, Ethiopia)
Now they are afraid of me so they do not hire
me [to wash clothes]. People like me cannot
ask for any job. Now I do only some
agricultural laboring—that is all I am doing
for my living now. (woman living with HIV,
Vietnam)
Loss of marriage and childbearing as life
options
Another disturbingly common consequence of
HIV and AIDS-related stigma relates to marriage
and childbearing. Spouses—particularly wives—
were frequently deserted upon disclosure of
their HIV status. Often this desertion was
accompanied by blaming—the first person to
become tested in the relationship being
considered as the one who brought the disease
into the home (by being unfaithful or “indulging
in play”).
Unmarried HIV-positive people may find mar-
riage no longer is an option available to them. As
one woman living with HIV in Vietnam said,
“Everyone dreams of having a happy marriage …
[but] because I’ve got it [HIV], I do not want to
marry, because if I get married I would make my
spouse unhappy, and I don’t want that.”
Similarly, people living with HIV may find that
they are strongly discouraged from having
Common at Its Core: HIV-related Stigma Across Contexts
31
children. In Tanzania, for example, a man in a
focus group stated, Women who are HIV-
positive should not bear children.” Also in
Tanzania, it was reported that sanction may be
taken against those living with HIV by relatives if
they bear children against their advice
(Mbwambo, Kilonzo et al. 2004).
Poor care within health sector
The forms that stigma takes in the health sector
were noted in Section 3.2. There are a number of
commonly reported consequences of this
stigma. One such consequence is that HIV-
positive people receive inferior care or are
denied care altogether. For example, a nurse in
Ethiopia explained:
The wards don’t have gloves, so how would
you expect a nurse to go and attend to a
HIV/AIDS patient? That’s why you can find a
patient lying in a pool of diarrhea for many
hours.
And a health worker in Vietnam admitted:
We absolutely never inject [HIV] infected
persons. We just give them medicines.... We
also treat small children here, so we give
[HIV] infected people no injections at all.
A person living with HIV in Ethiopia recounted
the following experience:
I went to a dentist… [and] told him I am HIV-
positive. When he heard this he told me that
he cannot help me and asked me to leave his
clinic.
Withdrawal of caregiving in the home
Health care provision in all four of the research
countries suffers from serious constraints, and
little can be done within the formal health sector
for people living with HIV and AIDS. As a result,
the bulk of the care is given within the context
of the household, generally by family members
and most often by a woman (see Hong, Van Anh
et al. 2004). However, HIV and AIDS-related
stigma can result in the refusal of family mem-
bers to provide this care—whether out of fear of
transmission, out of anger, judgment and moral
condemnation, fear of experiencing the stigma
of others, or a combination of these factors.
Intertwined with this is the impact of poverty
and resource constraints, which can significantly
limit the amount of care any given family is
able—or willing—to provide to someone who is
anyway believed to be a hopeless case.” A
further factor is the burn-out often experienced
by caregivers, particularly as HIV-disease ad-
vances and the burden of care becomes increas-
ingly demanding. The following quotes illustrate
this trend:
She was seriously ill and asked her brother to
take her to hospital. He refused by telling her
that she was hopeless. He told her not to
bother people and he does not want to
waste money on her. (woman, Ethiopia)
There is a case of a patient of ours. He was
ailing at his home where people avoided
and even closed the footpath that led to his
house to make sure he does not ever come to
their houses, saying, “He has gotten AIDS and
does not deserve to step on our land.”
(home-based care provider, Tanzania)
Many families, although they love the child,
still keep away, they are so afraid. They hire
[others living with HIV] to provide care for
him at the last stage, but they do not dare to
provide care directly themselves. (woman
FGD participant, Vietnam).
Household members… say it is a burden and
... some are killing their own children very
fast. They leave them to die slowly,
painfully…they stop buying medicine.
(caregiver, Zambia)
Despite these types of reactions, however, and
despite the prevailing stigma, it was found in all
sites the vast majority of people living with HIV
and AIDS did in fact receive loving care in the
context of their families (for more details on this
issue see the country reports).
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
32
17
The launching contribution to this discussion, submitted on December 1, 2003 (http://archives.hst.org.za/stigma-aids/msg00045.html)
includes a useful review of the topic and a fairly extensive bibliography.
Internalized stigma
Perhaps one of the most profound conse-
quences of HIV and AIDS-related stigma for
people living with the condition is the phenom-
enon sometimes referred to as “self-stigma or
“internalized stigma,” which occurs when a
person living with HIV and AIDS imposes stigma-
tizing beliefs and actions on themselves. It
should not be surprising that this occurs: people
living with HIV are, after all, members of the
same cultural, social, and moral communities as
many of their stigmatizers.” They will largely
ascribe to the same values and norms, and so
have the same ideas about the nature of HIV and
what it means about people living with it.
However, they additionally have to deal with
being the object of the cruel, thoughtless, and
hurtful actions of others. The near universality of
this phenomenon is indicated in our research
findings across these diverse settings, but also
by the myriad contributions worldwide to a
recent listserve discussion on the issue (see
http://archives.hst.org.za/stigma-aids).
17
It is clear that many people living with HIV and
AIDS go through a process, from the initial
feelings of shock, despair, shame, and grief—
sometimes accompanied by denial—to (particu-
larly if well supported) an eventual acceptance
and understanding that there remains much to
live for. The internalization of the stigmatizing
attitudes of ones own moral community, often at
their worst during the early stages, can remain
with one throughout life. While there are a great
many expressions of internalized stigma, those
observed commonly across our research sites
included:
X Loss of hope: I am in such a state—how
could I get married? If I could begin my life
again, nothing would make me happier. As it
is, I cannot marry a wife, my economic
situation cannot be regained, and my body is
not healthy. So, as far as I can afford to, I just
play [i.e. inject drugs]. (young man living
with HIV, Vietnam)
X Feelings of worthlessness (even suicidal
feelings) and inferiority: He will think
maybe if he dies fast it is to be better for him
and he doesn’t deserve to live here on earth.
(young man, Zambia)
X Believing oneself to be a person with no
future: So thereafter I decided it is not worth
going for studies. Why go study when I am
already infected with HIV? (woman living
with HIV, Tanzania)
As the above quotes suggest, a consequence of
internalized stigma can be profound depression.
Upon receipt of a positive test result, and often
before any symptoms appear, people may drop
out of school or discontinue employment, and/or
may choose to isolate themselves from their
families and communities. This self-imposed
isolation can be a product of the shame they are
feeling, and/or out of fear of further spreading
the virus through casual contact. As one woman
in Ethiopia explained:
I do not want to have close contact with
people because I know that I have HIV.… I
am the one who should isolate myself from
others. Some people who know me well
want to have a good relationship with me,
but I do not want to be close to them.
A woman living with HIV in Vietnam said:
I am afraid of giving my disease to my family
members—especially my youngest brother
who is so small. It would be so pitiful if he got
the disease. I am aware that I have the
disease so I do not touch him—I talk with
him only. I don’t hold him in my arms now.
Ultimately, HIV and AIDS-related stigma results in
a loss to families and society of the unique and
valuable contributions of people living with HIV
and AIDS. Self-stigma thus exacerbates the
serious human resource drain caused by HIV-
related morbidity and mortality in highly
Common at Its Core: HIV-related Stigma Across Contexts
33
affected countries, where there are dramatic
reductions in the number of essential workers
such as teachers and nurses.
3.3.2 Consequences of stigma for the families
of people living with HIV and AIDS (secondary
stigma)
The consequences of HIV and AIDS-related
stigma do not begin and end with the HIV-
positive person, but extend to include their
families, children, and even friends and
caregivers. This phenomenon is generally
referred to as “secondary stigma,” or stigma by
association. Across all the research sites, the
parents of the person with HIV were often held
responsible for the “bad” behavior, which led to
the HIV infection of their children. The following
quotes illustrate this point:
Some people say that the father never
taught him good manners so he has ended
up getting the disease. (woman, Zambia)
People tend to think that children get this
disease when they become spoiled. It’s clear
that the family does not know how to
educate their children. People say that the
family is to blame, not the infected one. (man
living with HIV, Vietnam)
Because of this attribution of blame, as well as
the close shared physical proximity, family
members of people living with HIV and AIDS
experience many of the same expressions of
stigma as do the those living with HIV and AIDS
themselves, including being the subject of
gossip, being socially ostracized and isolated,
and even losing income, employment, or hous-
ing. The children of people living with HIV and
AIDS may bear the worst impact of stigma,
sometimes being denied a place in school or
being taunted, teased, and rejected by peers.
Some of the consequences of HIV and AIDS-
related stigma for family members observed
across all research sites include:
X Loss of livelihood: The mother of a
woman living with HIV in Vietnam used to
take in neighborhood children as a day
care provider. Once the news of her
daughters HIV status became the subject
of gossip, all the children were withdrawn
from her care, and she had to seek
alternative (and far less lucrative)
employment selling lottery tickets in the
city center.
X Loss of reputation: As indicated by the
quotes above, the reputation of the family
can be closely tied to the behavior of its
children. Thus, when someone becomes
HIV-positive, it can reflect poorly on the
family, who can lose respect of the
community as a result.
… an infected person is seen as a promiscu-
ous person, a prostitute. So when an elder
wants to be praised for bringing up his family
well, the praise he receives should not be that
he brought up prostitutes. (woman living
with HIV, Tanzania)
A consequence of losing one’s reputation in the
community can be the withdrawal of key forms
of social and economic support, thus further
expediting a familys potential descent into
poverty and/or destitution.
3.3.3 Consequences of stigma for HIV and
AIDS treatment and prevention efforts
The epidemic of fear, stigmatization and
discrimination has undermined the ability of
individuals, families and societies to protect
themselves and provide support and
reassurance to those affected. This hinders, in
no small way, efforts at stemming the
epidemic. It complicates decisions about
testing, disclosure of status, and ability to
negotiate prevention behaviors, including
use of family planning services. (Mbwambo,
Kilonzo et al. 2004)
Impact of stigma on treatment
People living with HIV and AIDS witness, experi-
ence, and fear the seemingly limitless expres-
sions of stigma that surround them in their
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
34
communities. Indeed, HIV and AIDS-related
stigma is a phenomenon that almost all respon-
dents, whether or not they knew their HIV sero-
status, were aware of. It is clear in all sites that
the presence of stigma and the fear of experi-
encing its effects has a profound impact on the
ability and willingness of people to access and
utilize the services that are available for control-
ling the further development of the epidemic. In
all sites, for example, we found that HIV and
AIDS-related stigma inhibits people from
seeking treatment for infections that are closely
associated with HIV, such as TB, skin rashes, and
certain types of diarrhea, whether or not they
have tested positive for HIV (see Bond,
Chilikwela et al. 2003). As one peer educator in
Zambia explained:
It is TB, skin rashes and cancer [that are most
associated with HIV]. Most people who have
these diseases are shy to talk about their
diseases, which makes them stay away from
the clinic or the hospital to receive treatment.
Perhaps even more worrying, however, is the
impact stigma has on the willingness of people
to implement prevention measures and come
forward for testing. These two issues are dis-
cussed in more detail below.
Impact of stigma on prevention
Sections 3.1.1 and 3.1.2 discussed the ways in
which fear of casual transmission and the moral
dimensions of stigma served to distance the
(presumably) noninfected from people living
with HIV. Fear of casual transmission has the
effect of shifting the focus on to mechanisms of
transmission that are largely impossible and/or
those modes that are the least risky, but over
which people have the least perceived control.
The moral judgment aspect of stigma allows the
(presumably) noninfected to deny their risk
because “I am not like that”—as an upstanding
member of the moral community,” I could never
get an infection like HIV, which only “bad” people
get. If someone perceives him or herself to be at
the greatest risk through means over which he
or she has no control, or if a person perceives no
risk, then he or she probably will not take the
measures necessary to protect against acquiring
HIV. Stigma, therefore, operates in a number of
ways to distance people from a sense of risk.
From that vantage point, stigma creates an
obstacle to prevention.
Stigma gets in the way of prevention in other
ways as well. Even where there is a fairly high
sense of vulnerability to HIV, stigma seems to
interfere with the ability of individuals or
couples to discuss condom use and use
condoms regularly and correctly. Condoms
themselves have acquired a strong stigma
through their close association with HIV in the
press and health promotion campaigns. Thus, the
mere suggestion of using a condom in any given
sexual encounter can be interpreted as tanta-
mount to admitting one’s own infidelity, or that
one suspects one’s partner has not been faithful.
As one young man in Tanzania said:
… in the beginning a couple might use
condoms. After that most couples feel that
they can trust each other [and ask], Why
should we use condoms?”
Impact of stigma on testing
HIV and AIDS-related stigma also prevents
people from coming forward for testing, or
when they do get tested, from returning for
their test results. This relates in part to the way
services are designed. For example, many
people will avoid going to clinics known as HIV
testing sites for fear of being seen there by
others and thus suspected as having HIV.
Another fear is that test results will not be kept
confidential. As a man in Zambia put it:
Most people, they think if they go to the
clinic, say for instance for a test, they think
that the results will be exposed to other
patients.
Common at Its Core: HIV-related Stigma Across Contexts
35
People also avoid testing out of fear of getting a
positive result—with the stigma and other
repercussions that would ensue. As one man in
Ethiopia explained:
People fear to take the blood test because if
their results [are] positive, they think that
people will isolate and segregate them.
Similar feelings were expressed by a man in
Tanzania:
If you see someone being mistreated
because they are HIV-infected, it is obvious
that the same will happen to you when it is
known you are HIV-positive.
Impact of stigma on disclosure
A related and extremely important consequence
of stigma is its effect on people’s ability and
willingness to disclose a positive test result to
others. Across all sites, people living with HIV
struggled with the issue of disclosure. In some
cases, as with one woman in Vietnam, people live
with the knowledge that they have HIV for years
without telling even their most intimate part-
ners for fear of stigma and its consequences,
which can include physical violence and/or
abandonment. As was the case for one woman,
who continued to have sexual relations with her
husband without condoms, and who had
another child without availing herself of mother-
to-child transmission prevention services, this
can mean that the necessary measures are not
taken to prevent the further transmission of the
virus. This is echoed in the views of one respon-
dent in Tanzania who said (in somewhat stigma-
tizing language): “He will go on with what he has
been doing in the past. He will go on having sex
with other people, and people with HIV do not
show any signs that they are victims.” In Vietnam,
one man living with HIV observed that “Because
our community does not have good feelings
toward infected persons, they keep away from
them. This makes me feel inferior. That’s why I
would like to hide [my HIV status].”
In some cases, people with HIV avoid making use
of available support services out of fear that
using those services would result in public
disclosure of their status. As one woman living
with HIV in Vietnam reported:
The ward invited me [for counseling] several
times but I did not go because I am reluctant
to meet people there.… It is normal for a
drug addicted person to be infected. But for
me, people tell each other, “Look, such a girl
but yet infected.” So I feel reluctant. I do not
want to go [to the ward’s activities for those
living with HIV].
It is interesting to note that across all sites, the
wider community seemed to feel that people
testing positive with HIV should disclose their
status publicly. As a newspaper in Tanzania
reported: When a person suffers from AIDS it is
better to disclose. So himself or his relatives
should disclose the truth to the community so
the disease does not spread to others.” In
Vietnam, the general sentiment was that if a
persons status was not known, the community
would not be able to provide the support to that
person and his or her family, as is encouraged by
the government. However, in all sites it was well
understood by the community that disclosure
was difficult and even dangerous due to HIV-
related stigma.
This section has reviewed a number of the main
consequences of HIV and AIDS-related stigma
identified in our four studies for people living
with HIV, for their families and close friends, and
for HIV and AIDS programming. The study
findings indicate that HIV and AIDS-related
stigma is an important obstacle for prevention,
impeding people from getting tested for HIV or
from disclosing their HIV status to others.
Although anti-retroviral treatment (ARV) was not
widely available in any of the research sites at
the time these studies were conducted, evi-
dence is now emerging from a number of ARV
pilot sites indicating that there, too, stigma is an
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
36
obstacle. It was certainly an issue for the use of
prevention in mother-to-child treatment pro-
grams in Botswana and Zambia (Nyblade and
Field 2000). Clearly, therefore, HIV and AIDS-
related stigma is having an important impact on
the epidemic as a whole—operating as a key
driver of the epidemic. Thus, combating stigma is
a matter of utmost urgency for all HIV programs
to address.
Common at Its Core: HIV-related Stigma Across Contexts
37
4
30
Conclusions
T
his report has compared research findings
from four countries with different social,
economic, political, historical, and geographic
contexts, each with a different experience of the
HIV/AIDS epidemic. A key finding is that HIV and
AIDS-related stigma and discrimination are
remarkably consistent across contexts. Although
there are some notable variations in stigma that
stem from differences in language, culture, and
epidemic history, these differences are largely of
nuance and degree rather than substance.
Instead, we find commonalities in what causes
stigma, the forms in which stigma is expressed,
and the consequences of stigma. Therefore,
attention is given here to the implications of this
finding for the development of interventions
intended to reduce stigma and/or mitigate its
impact.
To date, efforts to reduce HIV and AIDS-related
stigma and discrimination have not adequately
matched the magnitude and apparent universal-
ity of the problem. Parker and Aggleton quote
an unpublished USAID document that contains a
suggested reason: The problem [HIV and AIDS-
related stigma] is a difficult one, because
underlying the apparent universality of the
problem … there appears to be a diversity and
complexity that makes it difficult to grasp in a
programmatically useful way” (USAID 2000, in
Parker & Aggleton 2003:14). Our research
findings indicate that differences are largely
superficial and need not stand in the way of
developing programs and interventions.
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
38 31
T
wo basic approaches to tackling stigma have
thus far been offered in the literature: either
individual change or structural change. Our data
and experience indicate that an effective
response to stigma needs to include both. In
fact, one way to accomplish structural change is
through the individual. Using such a combined
approach, programs and policy should address
the two key underlying causes of HIV and AIDS-
related stigma described in this report:
(1) knowledge and fear; and (2) values, norms,
and moral judgments. People living with HIV also
should be involved in the development and
implementation of all stigma-reduction pro-
grams. The following is a discussion of four broad
recommendations that can be applied to all
stigma-reduction programs and policy.
5.1 Individual and structural change
Some researchers have criticized stigma inter-
ventions that focus only on the individual (e.g.,
Parker and Aggleton 2003). The primary thrust of
this critique is that stigma is about marking of
significant differences between categories of
people,” which has its foundations in “systems or
structures of power” and must be understood as
central to the constitution of the social order”
(Parker and Aggleton 2003). These critiques call
for an approach that considers the structural
relations that produce and reproduce stigma
and social exclusion. A myriad of other structural
issues also contribute to stigma and discrimina-
tion and perpetuate social inequalities, not the
least of which is poverty.
While we fully agree that addressing structural
issues is fundamental to mitigating stigma, this
and other research and results emerging from
ongoing pilot interventions indicate that it is not
sufficient to intervene only at the structural
levels. While power relations that foster inequal-
ity are structural, they are perpetuated by
individuals, individuals who are well placed to
institute change if motivated to do so and given
a supportive environment. We thus call for an
approach to intervention that starts with the
conviction that individual attitudes can and do
make a difference, and that long-term and far-
reaching stigma reduction can start with
individuals. Depending on the context, it may be
necessary to intervene with people in positions
of power and influence; people who determine
to a large extent what messages are delivered
and how; people who have the power to insti-
tute anti-discrimination laws and policies; and
people who are charged to carry out these laws
and policies. In all contexts, it will be appropri-
ate and necessary to intervene at the commu-
nity level with community members, including
health care workers, people working with faith-
based and community-based organizations, and
people living with HIV and AIDS and their
families.
5.2 Knowledge and fear about HIV and
AIDS
The persistence across diverse settings of the
“knowing, but not quite believing” that HIV can
only be transmitted through three specific
routes indicates that overcoming these doubts
and fears is one of the key steps for any program
working to reduce HIV-related stigma. The
continuation of stigma driven by these fears,
despite years of information, education, and
communication (IEC) and more recently behavior
change communication (BCC) efforts, indicates
that current strategies for imparting an under-
standing of HIV transmission, and AIDS more
generally, are not completely effective, and in
some cases may be contributing to fear and
stigma. More specifically, the findings suggest
that programs need to focus on the substantive
5
Recommendations
Common at Its Core: HIV-related Stigma Across Contexts
3932
18
See Nyblade et al. 2003 for a more detailed discussion of this point.
content of messages pertaining to HIV as well as
the style and method of delivery, paying atten-
tion to the following:
Substantive content of messages
Persistent fears about HIV transmission through
improbable means, and the what if scenarios
people create in the face of these fears, indicate
that many people dwell on and worry about HIV
transmission through casual encounters in daily
life. These unfounded fears clearly suggest that
partial or ambiguous (and often negative)
information contained in HIV and AIDS-related
messaging can have unintended, and undesir-
able, consequences. Thus, programs and policies
need to broaden, deepen, and sharpen HIV
messages by:
X Providing information not only on how HIV is
transmitted, but also how it is not
transmitted. This includes identifying the
most commonly feared casual” contact
situations in a community (e.g., contact with
blood, sweat, and saliva where no fluids are
exchanged, or mosquitoes) and explaining
why HIV transmission is highly unlikely or
impossible through these situations.
X Ensuring that people have a deep enough
understanding of what HIV is and how it is
transmitted so that they are equipped to
make correct assessments of actual HIV risk in
any given life situation they encounter. For
example, understanding that HIV is unable to
survive for long outside the body will help
reassure people that HIV cannot be
transmitted through various modes of casual
contact experienced on a routine basis, such
as sitting next to a person with HIV on a bus
or sharing utensils with a person with HIV.
This is an especially important message to
get across because people in all four studies
expressed fear of transmission through casual
contact, and many forms of stigma are
directly related to that fear.
X Delivering clear and unambiguous
information by explaining exactly how HIV is
transmitted through blood and sex, or from
mother-to-child, to ensure a clear
understanding of risky exposures and the
relative risks of different exposures. The ways
in which HIV can be transmitted are often
presented in ambiguous terms (sex, blood,
mother-to-child), with little distinction made
between the relative risks of the three modes
or of the relative risks of different kinds of
contact within a given mode (e.g., blood
exposure through injection or transfusion
versus blood left on a nail clipper).
X Broadening the content of HIV messages to
include information on HIV and AIDS beyond
transmission, in particular, what it means to
live with HIV; the skills needed to help
individuals prevent its transmission; and if
infected, how to live healthy and productive
lives. For example, messages could inform
about the longevity of a person living with
HIV or that opportunistic infections are
treatable in HIV-positive persons. Messages
also could offer practical tips on different
strategies for bringing up the issue of HIV
and condom use with sexual partners, both in
steady partnerships and casual relationships.
X Creating recognition and understanding of
HIV stigma, including what it is; how it is
harmful to ourselves, our families, and our
communities; and the role each individual has
to play in reducing it. While not dealt with in-
depth in this report,
18
the data from all
countries shows a gap between people’s
stated intentions not to stigmatize and their
actions, which are stigmatizing. This indicates
a lack of recognition of what stigma actually
is. Creation of improved awareness of what
stigma is and fostering an understanding of
how stigma is harmful would help stop this
inadvertent stigma from occurring. At the
same time, addressing each individual’s role
in creating or reducing stigma would
generate the necessary will to do something
about it.
Style and delivery of messages
In addition to the content of HIV and AIDS
information, the style and delivery of messages
also potentially creates and perpetuates stigma.
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
40 33
In this respect, the findings suggest the follow-
ing critical areas to address in working toward
reducing HIV-related stigma:
X Provide HIV and AIDS information in an
interactive format, moderated by a
knowledgeable and trusted facilitator. This
will encourage discussion, questions, and
feedback on the hypothetical scenarios that
people worry about. Such a format allows the
facilitator to address all individual concerns
and unambiguously dispel the notion that HIV
can be transmitted through casual contact.
Once people truly understand and believe
this, they will be less likely to stigmatize
people with HIV through avoidance and
isolation. Messages delivered in a uni-
directional mode (e.g., through billboards,
fliers, posters, radio, etc.) are important but
need to be complemented by opportunities
to ask questions about the information to
dispel any misunderstandings the
information creates about casual
transmission.
X Gather data on how people understand the
messages they receive, whether from specific
IEC or BCC campaigns or from the growing
global flow of information through the
Internet and other communication outlets. A
regular process of collecting this kind of
information is critical so that misconceptions
can be dealt with quickly, before harm is
done.
X Use more positive images of people living
with HIV, rather than fear-based messages
and negative images. The findings confirm
that the use of fear-based messages that
equate HIV infection with disfigurement,
suffering, and death, and images of sick and
dying people with AIDS only serve to increase
the fear of HIV and people with HIV.
Eliminating fear-based and negative imagery
will increase positive images of persons living
with HIV and combat the fear that drives
stigma, as well as the stigmatizing beliefs
that HIV equals immediate disability and
death, and that persons with HIV are
nonproductive members of society.
5.3 Values, norms, and moral
judgments
To effectively address stigma, programs and
policy also must attempt to disassociate HIV
from the sensitive and often taboo social issues
that are associated with its transmission, in
particular sex and injection drug use. This can be
done without sacrificing effective communica-
tion of information about prevention. For
example:
X Explain how HIV is (and is not) transmitted in
a fact-based, neutral and nonvalue-laden
format.
X Messages, programs and policies need to
discuss the behaviors that can lead to HIV
transmission without direct reference to
particular individuals or groups to ensure that
specific groups (e.g., young girls, gay men,
sex workers, injection drug users) are not
singled out as vectors of transmission.
Messages about HIV that include implicit
value judgments about a behavior legitimize
stigma by implying that HIV is a matter of
personal choice.
X Create safe, facilitated spaces to discuss the
values and beliefs that underlie stigma. The
values, norms, and moral judgments that
create and justify stigma are ingrained and
often unconscious. Tackling stigma requires
facing these issues, including reflecting on:
z Why we hold these judgments and their
negative effects;
z How judgments keep us from accepting
and caring for people with HIV, even those
close to us;
z The fact that the nature of HIV puts us all
at risk, and that making morality-based
Common at Its Core: HIV-related Stigma Across Contexts
4134
Box 4: Understanding and Challenging HIV Stigma: Toolkit for Action
The lack of tools to guide responses to stigma has hampered and delayed past action. To address this need, a
set of practical tools was developed, contained within the Anti-Stigma Toolkit: Understanding and
Challenging HIV Stigma: Toolkit for Action. These tools are based on findings from the four country studies
and provide sound, evidence-based guidance for launching stigma-reduction activities with key groups,
including religious and political leaders, people living with HIV and AIDS, and community members.
Participatory exercises address the knowledge and value issues that underlie stigma and create the
necessary awareness of stigma to motivate action. The intent is to motivate people in positions of power and
household and community members to use these methods to address the stigma around them.
The toolkit’s central themes address the causes of stigma:
The toolkit emerged from the Africa research project and is designed to address key research findings about
the causes of stigma. In particular, it assists efforts to:
z Make stigma visible and assist in resolving contradictions such as those between intentions and
behavior;
z Enhance practical knowledge to reduce fear of casual transmission;
z Provide a safe forum to discuss sensitive topics (sex, death, drug use, inequity);
z Find a common language to talk about stigma;
z Strengthen the capacity of people living with HIV and AIDS to challenge stigma in their lives;
z Provide a process to determine appropriate and feasible individual and community responses to
stigma; and
z Provide comprehensive, flexible tools for organizations to strengthen staff skills and develop or
strengthen interventions to reduce HIV-related stigma.
The toolkit works by raising the issue of stigma among participants and challenging them to confront it. It
tackles stigma from the perspective of both the “stigmatizer” and the “stigmatized, encouraging people to
reflect on their stigmatizing attitudes and behaviors and providing people with HIV and AIDS and their
families space to examine stigma and develop skills and strategies to deal with it.
The toolkit was developed through interactive, participatory workshops in all three African countries, with a
total of 75 participants from 50 NGOs. Led by Ross Kidd and Sue Clay, CHANGE/AED, ICRW, Miz Hasab, MUCHS,
ZAMBART, and KCTT coordinated the effort. The toolkit since has been adapted for use in Vietnam by the
Institute for Social Development Studies, with the support of ICRW and Ross Kidd. The first edition was
developed in Africa and is available in English and Kiswahili. An adaptation of the first edition for the Asian
context has been completed and is available in both English and Vietnamese.
The entire Toolkit can be found at: www.changeproject.org.
distinctions of us” versus “them does not
protect us, but instead puts us at greater
risk by creating a false sense of distance;
and
z How the position of women in society,
particularly the double standards for men
and women, lead to increased stigma (and
vulnerability) for women.
X Key institutions and opinion leaders shaping
and reinforcing societies’ values must take
the lead in reducing stigma. They can do this
by:
z Promoting nonstigmatizing principles like
compassion and nondiscriminatory and
equal treatment for all;
z Carefully examining content and style of
INTERNATIONAL CENTER FOR RESEARCH ON WOMEN
42
messages (as described above) to ensure
they are nonstigmatizing; and
z Training leaders to improve their
understanding of HIV and overcome fears
of casual transmission, recognize stigma,
and become motivated to tackle it, and
begin the process of self-reflection on
values, morals, and judgment.
5.4 Involve people with HIV and AIDS as
integral members of all programs
People with HIV and AIDS have a central role in
stigma reduction at any level of intervention and
provide a strong basis on which to build suc-
cessful programs. Bearing the brunt of stigma,
those living with HIV have the life experience
and knowledge needed to design and imple-
ment appropriate stigma-reduction responses.
Where appropriate,
19
with training (where
needed) and support, and as paid staff members
or consultants, people with HIV should form the
core of stigma-reduction programs. As detailed
in a recent review (Brown et al. 2003), interven-
tions which involved direct interaction between
people with HIV and AIDS and stigmatizers
indicate some success in lowering stigma.
Several of the underlying causes of stigma
identified in this report point to the critical role
people living with HIV have in dispelling the
myths that allow stigma to persist. In particular,
they can help combat the fear of casual trans-
mission of HIV, the belief that HIV means immedi-
ate disability and death, and that people living
with HIV are somehow different from everyone
else. In addition, working to fight HIV and stigma
is an empowering activity that gives hope to
people with HIV, which also helps people
overcome internalized stigma.
5.5 The way forward
The research evidence presented in this report
indicates that it is time to stop making excuses
for not addressing HIV and AIDS-related stigma
and discrimination. Stigma is certainly complex
and affected by context. However, as these
studies show, there are more commonalities
than differences in the causes, forms, and
consequences of HIV and AIDS-related stigma
across countries and continents. Taking the
opportunity to design and implement interven-
tions that address these common issues and
understandings is the first step in reversing the
devastating impact that stigma is having on
those infected with and affected by HIV and
AIDS. The time to act is now.
19
Involvement of people with HIV in stigma-related efforts needs to be done in a manner that is respectful, safe, voluntary, and contextually
appropriate. The presence of stigma means that public participation comes with potential harmful consequences, and programs need to
recognize this and be prepared to respond and support their employees living with HIV should negative outcomes occur. Programs also need
to ensure that people with HIV are not coerced in any manner into disclosure or participation, including recognizing that in the context of
poverty, the need for a job and benefits may force open disclosure before it is safe and appropriate.
Common at Its Core: HIV-related Stigma Across Contexts
43
Alonzo, AA and NR Reynolds. 1995
“Stigma, HIV and AIDS: An Exploration and Elaboration
of a Stigma Trajectory.” Social Science and Medicine
41(3): 303-315.
Banteyerga, H, A Kidanu, et al. 2004
Yichalaliko! Exploring HIV and AIDS Stigma and Related
Discrimination in Ethiopia: Causes, Manifestations,
Consequences, and Coping Mechanisms. Addis Ababa:
Miz-Hasab Research Center.
Bond, V, L Chilikwela, et al. 2003
Kanayaka—”The Light is On”: Understanding HIV and
AIDS- related Stigma in Urban and Rural Zambia. Lusaka:
Zambart Project and KCTT.
Brown, L, K Macintyre, et al. 2003
“Interventions to Reduce HIV/AIDS Stigma: What Have
We Learned?” AIDS Education and Prevention 15(1):
49-69.
Clay, S, V Bond, and L Nyblade. 2003
“We Can Tell Them: AIDS Doesn’t Come Through Being
Together.” Childrens Experiences of HIV and AIDS-related
Stigma in Zambia. Lusaka: Zambart Project and KCTT.
Cogan, J and G Herek. 1998
“Stigma.” The Encyclopedia of AIDS: A Social, Political,
Cultural, and Scientific Record of the HIV Epidemic.
Smith, RA, ed. Chicago: Fitzroy Dearborn.
de Bryun, T. 1998
HIV/AIDS and Discrimination: A Discussion Paper.
Montreal: Canadian HIV/AIDS Legal Network and
Canadian AIDS Society.
Gilmore, N and MA Somerville. 1994
“Stigmatization, Scapegoating and Discrimination in
Sexually Transmitted Diseases: Overcoming Them and
‘Us.’” Social Science and Medicine 39(9): 1339-1358.
Go, V, V Quan, et al. 2002
“Gender Gaps, Gender Traps: Sexual Identity and
Vulnerability to Sexually Transmitted Diseases Among
Women in Vietnam.” Social Science & Medicine 55(3):
467-481.
Goffman, E. 1963
Stigma: Notes on the Management of Spoiled Identity.
New York: Simon & Schuster Inc.
Herek, G and E Glunt. 1988
An Epidemic of Stigma: Public Reaction to AIDS.”
American Psychologist 43(11): 886-891.
Hong, KT. 1999
Study on Sexuality in Vietnam: The Known and
Unknown Issues. Vietnam: Population Council.
References
Hong, KT, NT Van Anh, et al. 2004
“Because This is the Disease of the Century”:
Understanding HIV and AIDS-related Stigma and
Discrimination. Washington, D.C.: International Center
for Research on Women.
JVnet. 2004
Gender Norms, Gender Roles and HIV/AIDS in Vietnam.
Mbwambo, J, G Kilonzo, et al. 2004
Understanding HIV and AIDS-related Stigma in Tanzania.
Dar es Salaam: MUCHS.
Nyblade, L, R Pande, et al. 2003
Disentangling HIV and AIDS Stigma in Ethiopia,
Tanzania and Zambia. Washington, D.C.: International
Center for Research on Women
Nyblade, LC and ML Field. 2000
“Community Involvement in Prevention of Mother-to-
Child Transmission (PMTCT) Initiatives.” Women,
Communities and the Prevention of Mother-to-Child
Transmission of HIV: Issues and Findings from Community
Research in Botswana and Zambia. Washington, D.C.:
International Center for Research on Women.
Nzioka, C. 2000
The Social Meanings of Death from HIV/AIDS: An
African Interpretive View.” Culture, Health & Sexuality:
1-14.
Parker, R and P Aggleton. 2003
“HIV and AIDS-related Stigma and Discrimination:
A Conceptual Framework and Implications for Action.”
Social Science & Medicine 57(1): 15-24.
Songwathana, P and L Manderson. 2001
“Stigma and Rejection: Living with AIDS in Villages in
Southern Thailand.” Medical Anthropology 20: 1-23.
Staugard, F. 1985
Traditional Medicine in Botswana: Traditional Healers.
Gaborone: Ipelegeng Publishers.
UNAIDS. 2004a
Report on the Global AIDS Epidemic: 4th Global
Report. Geneva: UNAIDS.
UNAIDS. 2004b
Viet Nam Update 2004. Epidemiological Fact Sheets on
HIV/AIDS and Sexually Transmitted Infections. Geneva:
UNAIDS, UNICEF & WHO.
USAID. 2000
USAID Concept Paper: Combating HIV/AIDS Stigma,
Discrimination and Denial: What Way Forward.
Washington, D.C.: USAID.
International Center for Research on Women
1717 Massachusetts Avenue, NW
Suite 302
Washington, DC 20036, U.S.A.
Tel: (202) 797-0007
Fax: (202) 797-0020
e-mail: info@icrw.org
www.icrw.org
This publication was made possible by funding from USAID, through the CHANGE Project (AED/The Manoff Group)
under the terms of the USAID Cooperative Agreement HRN-A-00-98-00044-00.
The opinions expressed herein are those of the authors and do not necessarily reflect the views of USAID.
... Research has shown that negative attitudes in HCW towards PLHIV manifested through practices, including: denial of care to a PLHIV [5], verbal abuse to a PLHIV [6,7], lower standards of care to a PLHIV [8,9], placement of a PLHIV at the end of a queue [5], disclosure of a patient's HIV status to colleagues/ family members without consent, irrespective of when PLHIV arrived at the facility and gossiping about the patient [6]. Very often, attitudes are generally associated with the level of knowledge and those who hold negative attitudes are often those with lower levels of knowledge regarding HIV. ...
... Research has shown that negative attitudes in HCW towards PLHIV manifested through practices, including: denial of care to a PLHIV [5], verbal abuse to a PLHIV [6,7], lower standards of care to a PLHIV [8,9], placement of a PLHIV at the end of a queue [5], disclosure of a patient's HIV status to colleagues/ family members without consent, irrespective of when PLHIV arrived at the facility and gossiping about the patient [6]. Very often, attitudes are generally associated with the level of knowledge and those who hold negative attitudes are often those with lower levels of knowledge regarding HIV. ...
Article
Full-text available
Background: Caring for human immunodeficiency virus and acquired immunodeficiency syndrome (HIV/AIDS) requires healthcare workers (HCW) to have good knowledge of the issues. Cultural differences in HCW, combined with professional ethics and personal beliefs, could also result in conflicting attitudes, leading to challenges related to caring for people living with HIV (PLHIV).
... Our data demonstrate how participants connect previous anti-HIV stigma with their understanding of themselves and their own HIV status-often highlighting how these experiences made them feel badly about themselves and worry about being stigmatized in the future. Therefore, anti-HIV stigma interventions remain a critical component of successful long-term HIV care for children and adolescents living with HIV 49,50 . Our results suggest that anti-stigma interventions meant to target the sources of perceived stigma should begin with primary school-aged children and not be delayed until adolescence. ...
Article
Full-text available
Introduction. Adolescents (10-19 years) living with HIV (ALWH) face unique challenges in controlling HIV long-term, including stigma and perception of stigma within their communities. Methods. We conducted a qualitative investigation of the sources of perceived HIV-related stigma with ALWH in western Kenya. Forty-six ALWH on ART, aware of their status, and engaged in care were enrolled. Interviews explored perceived stigma by probing the individuals and experiences that adolescents identify as causing or perpetuating their ongoing fears. Results. Participants (54% male, mean age 17.4) reported ongoing fears of stigmatization related to friends and peers not living with HIV. They described previous enacted and first-hand observations of stigma, most often occurring in pre-adolescence, by age mates or peers at school as the most common cause for their ongoing fears. Conclusions. Perceived stigma is prevalent among ALWH and develops from experiences in pre-adolescence. Anti-HIV stigma interventions addressing educators and children in school settings to combat perceived stigma at its source should be investigated.
... HIV-related stigma has long been regarded as culturally and contextually specific and too sensitive to be addressed in a meaningful way. Ogden and Nyblade (2005) suggest that HIV-related stigma shares common traits across diverse contexts and cultures presenting viable avenues for addressing HIV-related stigma through the development of appropriate interventions and programmes. Varying understandings of HIV-related stigma and the lack of an appropriate framework outlining the manner in which individuals are affected by their experiences of HIV-related stigma forms a significant barrier to understanding and adequately addressing HIV-related stigma to produce better outcomes for orphaned children (Campbell & Gibbs, 2016;Genberg et al., 2009). ...
Article
Full-text available
HIV-related stigma has negatively impacted the psychosocial well-being of children who have been orphaned by AIDS-related causes. Response to reducing stigma and ensuring child well-being is hindered by the limited understanding of HIV-related stigma and how it affects the psychosocial well-being of children. Due to the call for a comprehensive understanding of HIV-related stigma, this study aimed to develop a model to understand the manner in which HIV-related stigma affects the psychosocial well-being of children orphaned by AIDS. The study implemented a mixed method, exploratory, sequential design within a theory generative approach that included concept development, statement development, model description, and model evaluation. The developed model indicated that HIV-related stigma is embedded in social interaction and mediated by children orphaned by AIDS response to stigma. HIV-related stigma and maladaptive coping strategies collectively affect several domains of child psychosocial well-being and elevate psychosocial distress. This is the first model to provide a child-centred understanding of HIV-related stigma and its consequences for psychosocial well-being. The model may be used to guide future research and inform the development of appropriate interventions.
... HIV stigmatizing attitudes are expressed in two ways: through blame and moral judgment; and through social distancing from people who are known or suspected to be living with HIV. Both expressions of HIV stigmatizing attitudes have common roots: (1) the early metaphors of the HIV epidemic (e.g., HIV is equal to death), (2) individual and community knowledge on HIV transmission (e.g., the misconception that HIV can be transmitted via casual contacts), and (3) societal beliefs and religious practices (e.g., believing HIV is punishment for bad behavior) [11][12][13]. Among individuals and communities where stigmatizing attitudes are prominent, people living with HIV more likely to face discrimination, social rejection, abandonment, and even violence [6,14]. ...
Article
Full-text available
This mixed-method study aimed to describe HIV stigmatizing attitudes, identify factors associated with stigmatizing attitudes, and explore the broader context of HIV stigma among men accompanying their pregnant female partners to antenatal care in Tanzania. The study recruited 480 men who were attending a first antenatal care appointment with their pregnant female partners. Participants completed a structured survey; a subset of 16 men completed in-depth interviews. The majority of participants endorsed at least one of the stigmatizing attitudes; the most common attitude endorsed was the perception that HIV is a punishment for bad behaviour. In a multivariable logistic analysis, men were more likely to endorse stigmatizing attitudes if they were younger, less educated, Muslim, did not know anyone with HIV, or reported less social support. In the qualitative interviews, men discussed how HIV was antithetical to masculine identities related to respect, strength, independence, and emotional control. Future studies should develop and test interventions to address HIV stigmatizing attitudes among men, taking advantage of settings of routine HIV testing. These programs should be tailored to reflect masculine ideals that perpetuate stigma.
... 2,9,23,24 Women are traditionally expected to uphold the moral fabric of society. 25 Social rejection (personalized stigma), negative self-image (internalized stigma) and total stigma were reported to be higher in women. 24 Our findings indicated that women had a higher level of disclosure stigma than men. ...
Article
Full-text available
Background: HIV/AIDS is among the most devastating diseases, having multiple effects on the health and well-being of people living with HIV/AIDS (PLWHA). There is a paucity of studies that examined the gender differences in perceived stigma among PLWHA and the different coping strategies that they use in Ethiopia. Objective: To assess the gender differences in perceived stigma and coping strategies among PLWHA. Methods: A comparative cross-sectional study was conducted at Jugal Hospital, Harar, eastern Ethiopia from May 01 to July 30, 2018. A total of 412 (206 females and 206 males) PLWHA were included. Face-to-face interviewer-administered data were collected. Perceived HIV stigma was assessed using the Berger HIV stigma scale. Similarly, the coping strategies were assessed using the Brief Coping Orientation to Problems Experienced (Brief COPE) scale. The data were analyzed using STATA version 13. Results: The mean Berger stigma scale score was 65.3±11.3. The overall perceived stigma mean score was not statistically different between males and females (64.8±10.8 vs 65.8±11.7, p=0.407). Among the four subscales, women reported a higher level of disclosure stigma than men (21.1±5.5 vs 20.3±5.5; p=0.006). Regarding maladaptive coping strategies, men often used substances compared to women (2.8±1.5 vs 2.1±0.4; p<0.001). However, women use behavioral disengagement (4.6±1.1 vs 4.2±1.1; p=0.002) and self-distraction (5.9±1.5 vs 5.5±1.7; p=0.019) more often than men. Females used a higher level of adaptive coping strategies compared to males (42.5±4.9 vs 40.9±6.3, p=0.005). Furthermore, females were found to use more emotional-focused coping than males (27.6±3.2 vs 26.4±4.0; p<0.001). Conclusion: Women reported a higher level of disclosure stigma than men and the types of coping strategies used vary between male and female. Thus, interventions to support PLWHA must take into account the gender differences in terms of perceived stigma.
... While knowledge about HIV, including modes of transmission, has increased over time [43], this may not translate into behavior change. A study of HIV stigma across contexts found that individuals were often fearful of casual interactions with PLWH because of "preoccupation with unlikely modes of transmission" [44]. To impact behaviors that isolate PLWH, future iterations of the Maisha interventions should provide clear and direct messaging about how HIV is transmitted and how it is not transmitted. ...
Article
Full-text available
HIV stigma is a persistent barrier to curbing the spread of HIV and improving quality of life for people living with HIV. We developed and pilot tested Maisha, an HIV stigma reduction intervention in antenatal care (ANC) with two objectives: 1) among individuals living with HIV, reduce internalized and anticipated HIV stigma, with subsequent improvements in HIV care engagement, and 2) among individuals who are HIV-seronegative, reduce HIV stigmatizing attitudes. We enrolled and baselined 1039 women and 492 male partners presenting to a first ANC appointment and randomized them to standard of care or the Maisha intervention. All women living with HIV (WLHIV) and a subset of HIV-negative participants completed a 3-month follow-up assessment. Participation in the three Maisha sessions was high (99.6%, 92.8%, 89.3%), and nearly all participants noted satisfaction with the intervention content (99.8%) and counselor (99.8%). Among 55 WLHIV, care engagement outcomes did not differ by condition. Among 293 HIV-negative participants, Maisha participants had significantly greater reductions in the moral judgment sub-scale of the stigma attitudes measure (p < .001), but not the social distancing subscale. The ANC setting, where women and their partners are routinely tested for HIV, is an ideal venue for addressing HIV stigma. The Maisha intervention was feasible and acceptable, and had an impact on HIV stigma attitudes. A full trial is needed to examine impacts on HIV outcomes; modifications to the intervention should be considered to reduce social alienation of PLWH.
Article
Full-text available
Background: Trauma faced by women infected with HIV and AIDS poses great challenge to the coordinated fight against HIV and AIDS. Traumatising events impacting people living with HIV and AIDS, most notably women, impede diagnosis, prevention and treatment efforts. Methods: The study set out to investigate the life threatening experiences of thirty-eight women living with HIV and AIDS in the Lower Manya Krobo District of the Eastern Region, Ghana. The study used focus-groups as method of data collection. The data was analysed through theme identification and grouping, along with selection of relevant quotes. Results: The study revealed five major life threatening experiences of the women: disclosure, mental ill-health, isolation, stigmatisation and financial challenges. The study concluded that women living with HIV and AIDS suffer enormous psychological burden of the pandemic in addition to physical challenges. However, it is the social burden of the pandemic that contributes significantly to the eventual death of the victims rather than the disease itself. Conclusion: Consequently, HIV and AIDS education campaign should be intensified using a variety of media, targeting those social issues identified in this research as part of the efforts to fight the disease.
Article
Ending the AIDS epidemic by 2030 will require addressing stigma more systematically and at a larger scale than current efforts. Existing global evidence shows that stigma is a barrier to achieving each of the 90–90–90 targets; it undermines HIV testing, linkage to care, treatment adherence, and viral load suppression. However, findings from both research studies and programmatic experience have helped to inform the growing body of knowledge regarding how to reduce stigma, leading to key principles for HIV stigma reduction. These principles include immediately addressing actionable drivers of stigma, centring groups affected by stigma at the core of the response, and engaging opinion leaders and building partnerships between affected groups and opinion leaders. Although there is still room to strengthen research on stigma measurement and reduction, in particular for intersectional stigma, the proliferation of evidence over the past several decades on how to measure and address stigma provides a solid foundation for immediate and comprehensive action.
Preprint
La preocupación ambiental se conceptualiza a partir de una estructura de cuatro dimensiones: apatía hacia el medio ambiente; antropocentrismo; conectividad con la naturaleza y afinidad emocional hacia la naturaleza. Por su parte, las competencias socioemocionales representan un conjunto de conocimientos, capacidades, y actitudes necesarias para comprender, expresar y regular de forma apropiada los fenómenos emocionales. Este trabajo se propuso evaluar la preocupación ambiental y las competencias socio-emocionales en adultos mayores que participaban de un taller en el Centro Cultural Rector Ricardo Rojas, en la Ciudad Autónoma de Buenos Aires, al inicio y final del mismo; en el marco de un programa de extensión universitaria. La muestra estuvo conformada por 32 Adultos Mayores, 98 % mujeres, de 61 a 83 años (M = 73; SD = 5). Se administraron la Escala de Preocupación Ambiental (Amérigo, Aragonés & García, 2012; Adaptación Argentina: Cassullo, 2015) y el Inventario de Competencias Socio-emocionales (ICSE; Mikulic, 2013). Se encontró que los Adultos mayores expresaron mayor Afinidad Emocional y Conectividad, luego de haber participado del taller; así como también, mayor optimismo, asertividad y Comunicación Expresiva. Los resultados encontrados son promisorios respecto de la conformación de espacios significativos positivos en nuestro contexto, que permiten trabajar con adultos mayores desde la integración de la Psicología Ambiental y Positiva.
Poster
La Psicología Ambiental analiza la interacción entre las personas y el ambiente entendiéndolo como todo lo que las rodea desde un carácter sociofísico, tanto natural como construido (Aragonés y Amérigo, 2010). La preocupación ambiental se entiende como el interés que los sujetos presentan por el cuidado ambiental (Amérigo, 2006). Se conoce que habitar en lugares vulnerables genera un impacto negativo en la salud (Prüss-Üstün y Corvalán, 2006). A consecuencia resulta relevante conocer cómo se manifiesta la preocupación ambiental en los estudiantes universitarios, futuros profesionales en ejercicio. La orientación de la formación se vincula con los intereses. Los estudiantes de Psicología centran su formación en la salud mental de las personas, mientras que los de Arquitectura en la construcción y acondicionamiento de espacios que las personas habitan. El objetivo de la presente es comparar la preocupación ambiental entre estudiantes de Psicología (n=50) y de Arquitectura (n=50).Se administró la escala de Preocupación Ambiental (Amérigo, Aragonés y García, 2012; Adaptación Argentina: Cassullo, Caballero, Favara, Colombo y Rusca, 2015) en ambas poblaciones. Los resultados hallados se relacionan con los obtenidos en estudiantes de Psicología (Cassullo et al., 2015), importante para la planificación de intervenciones basadas en datos empíricos.
Article
Full-text available
The problems that face HIV/AIDS patients are now fairly well documented. These include experiences of guilt, anger, grief, fear of abandonment, and potential economic hardship and marginalization due to others' fear of infection and associated stigma. However, limited attention has been paid to the effects of AIDS-related stigma on access to, and the provision of, health services. Understanding how the stigma of AIDS affects the processes and experiences of diagnosis, treatment, prevention, and care is critical to effective public health policy and the delivery of health care programs and medical services. In this article, we examine stigma as experienced by people with HIV and AIDS, and by their families, in village Thailand. We also identify areas for improvement pertaining to people with HIV/AIDS and other stigmatizing diseases.
Article
Death from HIV/AIDS is increasingly common in Kenya. However, the ways in which people diagnosed with HIV/AIDS and society more generally make sense of this kind of death has been little investigated. By analysing accounts from a sample of fourteen heterosexual people diagnosed HIV positive and presented for treatment in four specialized clinics in Nairobi, and other accounts elicited from members of the clergy and lay persons, this paper examines how people make sense of death from HIV/AIDS. To be infected by HIV equates to death, and because AIDS acts as a metaphor for moral and physical contamination, HIV infection confers on the individual a spoilt image and identity. This image and identity is projected into life beyond physical death, and is reinforced, popularized and legitimized by Christian and African religious schema in such a way that death from HIV/AIDS is now constructed and experienced as 'permanent'. This kind of death has implications for the way in which people living with HIV/AIDS seek treatment and manage an HIV seropositive status. It is also relevant to an understanding of the ways in which funerals and burials for people dying of HIV/AIDS are now being organized in Kenya.
Book
Report on AIDS spreading done by the UN
Article
Este informe contiene información estadística de las infecciones en VIH - SIDA y enfermedades de transmisión sexual en el Perú. Los datos han sido recabados gracias al Programa Conjunto de las Naciones Unidas sobre el VIH/SIDA (ONUSIDA). El objetivo principal de este informe es compilar información estadística que sirva para mejorar la toma de decisiones y los programas a nivel nacional y regional.
Article
Internationally, there has been a recent resurgence of interest in HIV and AIDS-related stigma and discrimination, triggered at least in part by growing recognition that negative social responses to the epidemic remain pervasive even in seriously affected communities. Yet, rarely are existing notions of stigma and discrimination interrogated for their conceptual adequacy and their usefulness in leading to the design of effective programmes and interventions. Taking as its starting point, the classic formulation of stigma as a 'significantly discrediting' attribute, but moving beyond this to conceptualize stigma and stigmatization as intimately linked to the reproduction of social difference, this paper offers a new framework by which to understand HIV and AIDS-related stigma and its effects. It so doing, it highlights the manner in which stigma feeds upon, strengthens and reproduces existing inequalities of class, race, gender and sexuality. It highlights the limitations of individualistic modes of stigma alleviation and calls instead for new programmatic approaches in which the resistance of stigmatized individuals and communities is utilized as a resource for social change.
Understanding HIV and AIDS-related Stigma in Tanzania
  • J Mbwambo
  • Kilonzo
Mbwambo, J, G Kilonzo, et al. 2004 Understanding HIV and AIDS-related Stigma in Tanzania. Dar es Salaam: MUCHS
Because This is the Disease of the Century " : Understanding HIV and AIDS-related Stigma and Discrimination
  • Kt Hong
  • Van Anh
Hong, KT, NT Van Anh, et al. 2004 " Because This is the Disease of the Century " : Understanding HIV and AIDS-related Stigma and Discrimination. Washington, D.C.: International Center for Research on Women.
Gender Norms, Gender Roles and HIV
  • Jvnet
JVnet. 2004 Gender Norms, Gender Roles and HIV/AIDS in Vietnam.