A Study of Stigma Against People Living With Hiv/Aids

A study of stigma against people living with HIV/AIDs
Introduction
Stigma and discrimination refers to prejudice, negative attitudes, abuse and maltreatment
directed at people living with HIV and AIDS. They can result in being shunned by family, peers
and the wider community; poor treatment in healthcare and education settings; an erosion of
rights; psychological damage; and can negatively affect the success of testing and treatment.
AIDS is a pandemic that is posing major challenges in the world today. The Indonesian
government, however, strengthened HIV/AIDs intervention programmes and strategies to fight
the pandemic as indicated in the President’s Speech H.E. MR. SUSILO BAMBANG
YUDHOYONO during the opening of the 9th international congress on HIV/AIDs in ASIA and
the PACIFIC (ICAAP) 9 august 2009 AT DENPASAR, BALI.
“We gather here today to advance our common fight against one of the worlds most lethal and most successful
killers: the HIV virus. To this date, this virus has killed some 25 million people worldwide, and counting. Some
75,000 people are said to contract HIV each day. In some countries and communities, HIV has raised the specter
of a “lost generation”, a generation where the youth are doomed before reaching or completing their productive
age. And in the short and medium terms, HIV death rate will continue to climb because we still have not found a
vaccine or a cure for AIDS. Clearly, if we list the various global challenges that we need to sort out in the 21st
century – from climate change to food security, from terrorism to diseases – combating HIV/AIDS would rank
among the top of that list”.
According to the Government Communication, strategies that are directed towards the
pandemic included HIV/AIDs prevention and awareness programmes, care and support
programmes, involvement/ participation within HIVAIDs structures, and the prevention of
mother-to-child transmission of HIV/AIDS through intensified effort towards universal
access to medical care services available. The task of implementing these strategies lies with
the government departments.
Stigma and discrimination against people living with HIV/AIDs by (muwaga musa) Page 0
The researcher became aware of the problems from the experience he had after having stayed
in Bandung for two months. One could wonder how this could happen, but it happened. In a
hostel where the researcher stayed for only 4 months students were not comfortable with his
presence as they are quoted to have said, “Africans (blacks) have HIV/AIDs. As if that was
not enough, bathing time was yet another drama as boys used to wake up early to take bath
before a black man could contaminate the bathrooms. That was not the end of the story.
The researcher could wake up early for prayers but still boys could contribute money to buy
detergents to clean up the bathrooms before they could take bath. Given that experience, this
research is urgently needed to find out whether the boys of those boys were out of ignorance,
little knowledge about HIV/AIDs, ineffective interventions made on them as a way of
conscious rising, or it was group intended discrimination?. Regardless of how you answer the
above questions, this research is necessary because there are many people being stigmatized,
discriminated by those who are ignorant about the disease.
It should be born in one’s mind that one’s well-being is affected by the behaviors of those that
he/she interacts with, the communities well-being is affected by those that contract the disease
like HIV/AIDs which is regarded as a disease caused by unbecoming behaviors of the victims.
Organisational well-being is affected if there is mistrust, suspicion and many other vices that
hinder interaction, association and feelings of sense of belonging. The stakeholders involved in
this study included the following, families, work places, health care providers, government and
non government organisation that provide HIV/AIDs services in communities selected members
from general public, and people with HIV/AIDs.
SOCIAL ISSUES RELATED TO HIV/AIDS STIGMA AND DISCRIMINATION
Stigma against people living with HIV/AIDs Page 1

One of the major factors that play a role in the dynamics of HIV infection is the level of
empowerment. The low levels of education, especially in women and patriarchal system puts
women in a subservient position. Consequently, women have lesser control over their own
bodies and lack negotiating skills for their protection. Also, sex and sexual behaviour are tabooed
subjects for discussion between parents and children and even in a formal set-up between
teachers and college youth. Thus, children and youth have more misconceptions and
misinformed, and in the long run, pose risk for HIV/AIDs in their lives and in their communities
People living with HIV are stigmatized leading to severe social consequences related to denial of
their rights, health care services, freedom, self-identity and social interactions.
The stakeholders may include;
People living with HIV/AIDs
Infected people are blamed for causing the condition through their risky behaviour, observed as
early as in in-depth interviews with the communities’ .According to the findings, ‘It’s people’s
own fault if they get AIDs. Such responses disrupt an individual’s social interactions and thereby
lead to a feeling of isolation. Such talks are based on community social norms like religion, upon
which if people fellow victims of HIV/AIDs, they are held responsible for their misbehaviors.
These beliefs are likely to foster a vigilant style that can isolate HIV infected still further. In such
decision making the easiest or most readily available perceived solution is adopted without
considering its consequences In Indonesia, public health officials until recently hold that women
in prostitution, homosexuals, or intravenous drug users (IDUs) only could contract AIDS largely
ignoring a dramatic rise in new AIDS cases among monogamous, married women.

Schools;
Even diseases like tuberculosis (TB) carry stigma as children with TB are not permitted to return
to classes even after successful treatment due to misconceived notions, that they would still
spread the disease to others. The HIV/AIDS scenario appears to be even worse as this still
remains an incurable disease. The persons suffering from stigmatized diseases are assumed to
have violated certain social norms and taboos and thus responsible for it. Stigma and
discrimination take different forms for varied diseases indicating a need for focused prevention
and treatment strategy in schools where many victims have no answers to their HIV/AIDs. For
example Children contract the disease from their parents at birth due to poor medical services
provided to people living with HIV/AIDs and through breasting feeding which come as a result
of insufficient guidance and counseling by health providers during and after child birth.
Consequences of stigma and discrimination HIV/AIDs
The AIDS epidemic has often been associated with severe negative public reactions ranging
from infected individuals to isolating an individual in the family, deserting a pregnant wife on
knowing her HIV status in the hospital, or removing a person from his job, or even denying a
child admission in school. These negative reactions have shaped the behaviour of infected
individuals and have limited the effectiveness of prevention efforts. AIDS also evokes anxiety
because of its association with death. People with HIV/AIDs reported lower levels of social
support from their family members, friends and extreme discrimination from places of work,
health centers, and children in schools.

Women and traditional societies
The traditional societies put women at high risk of HIV infection but men’s behaviour is
tolerated even if it puts them to certain risky behaviours, their greatest risk being husband’s
behaviour ranging from 1 per cent in general population of antenatal cases to 14 per cent in
monogamous women attending STD clinics. The social hierarchy and the differential power
relations that exist, blame women for bringing the infection in the family, especially seen when
the woman has been tested for HIV before the husband, as happens in several antenatal clinics.
Coping with her HIV status and looking after her child is a double burden that she has to manage
along with her own health and social vulnerabilities.
When women are diagnosed with HIV/AIDS, the psychosocial implications, rather than the
physiological impact, become the focus. Though research indicates that method of transmission
affects the level of stigma, this is not true in women. Those infected by their husbands or blood
transfusions suffer much stigma as those who contracted the virus from a sexual encounter with
an unknown individual.
Though women are more likely to disclose their HIV/AIDS status to employers than men, they
are still hesitant to tell and often do not, unless it is necessary to adjust work demands to
accommodate their health status. Women with HIV/AIDS are hesitant to access health care for
fear of breach of confidentiality, perceive stigma from provider, and are reluctant to take
medications that identify them as being ill.
Women are afraid that disclosing their HIV-positive status may result in physical violence,
expulsion from their home or social ostracism, or their property being seized after their partner
died. The denial of these rights increases women and girls’ vulnerability to sexual exploitation,

abuse and HIV. The impact of epidemic on women and girls is especially marked as they face
heavy economic, legal, cultural and social disadvantages.
Government;
Indonesia is a signatory to numerous international agreements on the rights of the women and
has a constitution that prohibits discrimination and exploitation by gender, however, it has failed
to protect the human rights of women satisfactorily particularly those of sex workers. This
discrimination is manifested in high levels of violence in the sex industry, child sex workers, and
lack of access to healthcare and high levels of HIV infection which are steadily increasing long
aside stigma. Women reported that up to now many of their friends cannot access medical
services as they are limited by the existing situation where many of them in rural areas are not
aware of their constructional rights or the availability of social services where ARVS are
provided for free.
Intravenous drug users (IDUs):
The Intravenous drug users carry the double burden of stigma of addiction and HIV infection.
These increasing numbers are adding to the social problems. It is seen that stigma associated
with HIV/AIDS is known to have a negative impact.
Hospital
According to the Centers for Disease Control and Prevention, the number of women with
HIV/AIDS continues to increase. Men and women with HIV/AIDs in Bandung are not rare but
hidden due to fear of being stigmatized and discriminated. But they are active involving
themselves in commercial sex especially during the wee hours they are sighted in malls and other
entertainment centers.

Influence of stigma upon health decisions has been studied extensively. It has been suggested
that a high degree of stigma among individuals living with HIV infection could have the
potential to impact an individual’s decision to enter medical care regimens. Stigma shares a
relation with care, drop out and inconsistency in adhering to medical regimens. This was
supported by in-depth interviews conducted with health providers who hold that many HIV/AIDs
persons don’t need to be involved in health programs concerning communities simply because
they are already stigmatized by the communities and by themselves.
However, from psychological point of view, HIV/AIDs patients need to involve in programs
intended to promote health and the well-being of the communities. This is so because these
people always provide live life experiences to communities on how the disease affects the body
not only that but if empowered properly, they can lead to behavior change of the community
members.
The misconception about HIV/AIDs is not only limited to communities that lack sufficient
knowledge on how the disease is spread. But even the most qualified doctors in the center for
disease control have fallen victims of circumstances. From research conducted from Hassan
sadikin hospital, it was reported that since 2004 when the center was opened, a number of
doctors have contracted the disease from work. This incidence was attributed to insufficient
knowledge and reluctances of medical personals during blood transfusion and inadequate
professional courses to enable them have modern skills on how to protect them while at work.
HIV testing and counseling support:
HIV/AIDS stigma affects issues related to HIV testing including delays in testing, the effect of
delay on secondary transmission, and individuals’ responses to testing positive. Voluntary
counseling and testing is an important strategy for HIV prevention entailing pretest to post-test

counseling for optimal impact. Failure to return for report and post-test counseling has been
reported to be associated with lower levels of social support, delays in the hospitals as these
people are not always given adequate attention by hospital administration and lack of
confidentiality by most doctors or health providers.
Congestion was one of the problems reported by HIV/AIDS patients. In 2004 the center was
supposed to serve 20 patients a day. To date, the number has more than doubled and reported to
be 56 patients on average that seek counseling and testing services. Despite the increase in
number, the facilities like offices, medical personnel’s have remained static. Crowding takes its
course as men, women and children struggle to ease themselves using one urinal. But despite
such circumstances, these patients have always endured. However,
COMMUNITY-BASED RESPONSES
The eventual outcome of the AIDS epidemic is decided within the community. They are the
subjects of the response to AIDS, not merely the objects of outside interventions. Therefore,
responses to HIV/AIDs are in the first instance local: they imply the involvement of people
where they live—in their homes, their neighborhoods and their workplaces.
Community members are also indispensable for mobilizing local commitment and resources for
effective action. In particular, people living with HIV/AIDs must play a prominent role and bring
their unique experience and perspective into programmes, starting from the planning stages.
Community mobilization against HIV/AIDs is taking place successfully all over the Indonesia.
The activities carried out in community projects are as diverse as the peoples and cultures that
make up these communities. Some are entirely 'home-grown' and self-sufficient, while others
have benefited from external advice and funding. Some are based in religious centers, others in
medical institutions, and still others in neighborhood meeting places. Many concentrate on public
education, others on providing care, and still others on prevention and other goals.
This reminds of the comment made by one respondent (a health worker dealing with HIV/AIDs
patients) “those people don’t need to be involved in community health programs because they
are already victims” the simple interpretation made by the researcher was that the health provider
did know that these people will provide live experiences of the disease of which nobody else can
provide. Not only that, but also they will fell a sense of belong as they are being cared for,
guided and counseled not to involve in unhealthy behaviors as this will affect the well being of
the community.
Research priorities on HIV/AIDS related stigma
Research is required to enable a better understanding of the varied forms of stigma taking place
in the community and at the level of service providers. It is imperative that the lack of adequate
documentation be fulfilled. This would interfere with developing models to influence the much
desired policy changes for meaningful interventions to take place. More studies are needed to
focus on the following:
(i) Measuring stigma in health care and related service providers through development of
implicit and explicit scales appropriate for Indonesia conditions in different health care centers,
service delivery settings and community settings.
(ii) Developing models to reduce HIV/AIDs stigma for strengthening the role of voluntary
counseling and testing centres.
(iii) Improving patient care approaches through measuring changes in treatment seeking
behaviour of HIV infected individuals for opportunistic infections through improved patient care
approaches.

(iv) Development of strategies for greater involvement of PLHA (GIPA), especially to create an
ambience for women to access antenatal care services and avail prevention of mother-to-child
transmission (PMTCT) intervention.
Conclusions
AIDs related stigma poses a problem for all in the society thereby, imposing severe hardships on
the people who are its targets and it ultimately interferes with treatment and prevention of HIV
infection. Emphasis on the eradication of AIDs related stigma would enable in creating a social
climate conducive to a rational, effective and compassionate response to this epidemic. Public
health managers and the government need to address the following types of AIDs stigmatization:
(i) Theologically/morally based blame on those who are infected by family, work places and
schools.
(ii) The concern for the health of those not affected by disease.

RECOMMENDATIONS;
1. There is a need to bring an understanding between the rights of the individual, who is at
risk of exposure and condemnation because of stigma, and the rights of the rest of the
society for the effective development of large scale effective public health programme.
2. A human rights approach lies at the heart of any HIV/AIDs programme that seeks to
prevent HIV transmission and supports those already infected. In the long run of the third
phase of HIV pandemic centering on the human rights would emphasize on minimizing
the erosion of the social, economic, cultural and political impact this pandemic has
caused. The human rights approach would also reduce on stigma.
3. Two decades of action against stigma have generated important insights into an effective
response. While international political, financial and technical support is important,
lowering incidence and mitigating the epidemic’s impacts must be a nationally driven
agenda across all stake holders. To be effective and credible, national responses require
the persistent engagement of the highest levels of government in evaluating programs
geared toward combating the AIDs scourge. And to address the causes of stigma not
merely talking against it, it’s better to promote the well-being of both people living with
HIV/AIDs and the communities where they reside rather than restoring it.
4. Effective programmes are needed to make HIVAIDs visible and the factors leading to its
spread, discussible. Programmes need to make people aware of the existence of HIV and
how it is spread, without stigmatizing the behaviours that lead to its transmission.
5. There is also need to facilitate discussion about an individual or communities own
vulnerability, and how to reduce it. This involves dissipating fear and prejudice against
people who are already living with HIV/AIDs. Successful programmes impart

knowledge, counter stigma and discrimination, create social consensus on safer
behaviour, and boost AIDs prevention and care skills.
6. Programmes such as TASO (The Aids Support Organisation) in Uganda have
demonstrated the enormously positive impact of openness and honesty in facing HIV.
Ensuring that counseling and voluntary HIV testing services are available, so that an
individual can find out her or his HIV status is a further critical ingredient in
counteracting denial something that is urgently needed in Bandung.
7. Effective strategies would offer both prevention and care to people living with
HIV/AIDs. As illness mounts in the epidemic, so does the need for health care and social
support from family members, friends and the community as a whole. Care services have
benefits that extend beyond caring for sick individuals. They should aim at convincing
others that the threat of HIV is real and they therefore make prevention messages more
credible as many will take voluntary testing and counseling.
8. Messages and programmes that build compassion and skills in health care settings are
urgently needed to deal with misconceptions shown by some health workers as most of
those interviewed could not answer some questions related to HIV/AIDs. One wonders, if
one who provides health care services does not understand what the disease is all about,
then what about the communities that get information from ill informed care providers ,
communities and families are needed right from the start, and combined training for
prevention and care helps reduce the psychological costs of the victims.
9. The tragedy is that action sporadic rather than being comprehensive. Many organisations
are providing services in one or two communities, while large areas of the countryside
have nothing as many respondents acknowledged. Many programmes need to become

comprehensive in either geographical coverage or content not only this but also to
address the causes of stigma not merely to talking against it. Health providers must work
towards promoting well-being of the patients but not working towards restoring it. This
can be done through inclusive approach as against exclusive approach where HIV/AIDs
persons are deeply involved in the health promotion programs. This is done because they
provide live life experiences to the rest of the community members which nobody else
can provide yet it’s needed.
10. The national response has focused solely on sex workers and men who have sex with
men, yet elsewhere, efforts are needed to go into HIV/AIDs and life skills education
among the young in schools and out of schools. Though some efforts have been made, a
lot is still required to avert the risks and vulnerability of those ignored.
11. Compulsory professional seminars are urgently needed to rescue the situation. In-depth
interviews conducted revealed that many health care providers what they know about the
disease is insufficient there is need to readjust the curriculum where by special courses
about HIV/AIDs can be provided. This will reduce on stigma and discrimination. Not
only this but also it will reduce of the number of cases where doctors are getting infected
while at work.
This may sound strange, but if not done, the lives of those who seek medical services and
those who give services will be at great danger because one will infect the other simply
because of misconceptions or being reluctant.

ADDRESSING THE CAUSES OF STIGMA AND DISCRIMINATION INTERVENTION
STRATEGIES
ACTIONABLE WHAT TO DO? TARGET AUDIENCES
CAUSES
Lack of awareness -Create awareness of what stigma and Government and
and knowledge discrimination other officials,
of stigma and are, the harm they cause, and the benefits of media, civil society,
discrimination reducing institutions (e.g.
and their harmful them, using a combination of: hospitals, schools,
effects – Participatory education, which involves activities workplace),
that encourage dialogue, interaction and critical nongovernmental
thinking; organisations, faith based
– “Contact strategies”, which involve direct or organisations,
indirect interaction between people living with organisations of
HIV and key audiences to dispel myths about people living with HIV,
people affected by HIV; and general population
– Mass media campaigns.
-Foster motivation for change through advocacy
and
awareness campaigns engaging:
– Key opinion leaders (e.g. celebrities, political
leaders, religious leaders, sports stars); and
– People living with HIV, and members of

Marginalized groups.
Fear of acquiring -Address fears and misconceptions about HIV Government and
HIV through transmission by providing detailed information other officials,
everyday contact about how HIV is and is not transmitted using a media, civil society,
with infected combination of: institutions (e.g.
people because – Behaviour change communication strategies (e.g. hospitals, schools,
of lack of detailed mass media campaigns and “edutainment”); workplace),
knowledge and – Participatory education; and nongovernmental
ACTIONABLE WHAT TO DO? TARGET AUDIENCES
CAUSES
information -Discuss the ‘taboos’ – including gender organisations, faith based
inequalities, organisations,
Domestic violence, sexuality, and injecting drug organisations of

Linking people use – using a people living with HIV,
with HIV with combination of: General population.
behaviour that – Participatory education;
is considered – Contact strategies which involve direct or
improper and indirect interaction between people living with
immoral HIV and key audiences to dispel myths about
People affected by HIV/AIDs.
– Behavioral and social change communication;
and
– Equipping stigmatized individuals and groups
to challenge stigma and discrimination and to

Change behaviour.
- Mobilise action to challenge stigma and
discrimination at the national and community levels
through:
– Advocacy and awareness campaigns;
– Community involvement in planning for stigma
and discrimination reduction;
– Know your rights campaigns supported by legal
assistance; and
– Strategic mitigation against discrimination in
Various settings.
END


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A study of stigma against people living with HIV/AIDs

government, however, strengthened HIV/AIDs intervention programmes and strategies to fight

the PACIFIC (ICAAP) 9 august 2009 AT DENPASAR, BALI.

programmes, involvement/ participation within HIVAIDs structures, and the prevention of

mother-to-child transmission of HIV/AIDS through intensified effort towards universal

the government departments.

little knowledge about HIV/AIDs, ineffective interventions made on them as a way of

discriminated by those who are ignorant about the disease.

from general public, and people with HIV/AIDs.

SOCIAL ISSUES RELATED TO HIV/AIDS STIGMA AND DISCRIMINATION

Stigma against people living with HIV/AIDs Page 1

The stakeholders may include;

People living with HIV/AIDs

Stigma against people living with HIV/AIDs Page 2

Consequences of stigma and discrimination HIV/AIDs

health centers, and children in schools.

Stigma against people living with HIV/AIDs Page 3

Women and traditional societies

along with her own health and social vulnerabilities.

medications that identify them as being ill.

Stigma against people living with HIV/AIDs Page 4

heavy economic, legal, cultural and social disadvantages.

provided for free.

Intravenous drug users (IDUs):

with HIV/AIDS is known to have a negative impact.

Stigma against people living with HIV/AIDs Page 5

they are already stigmatized by the communities and by themselves.

HIV testing and counseling support:

delay on secondary transmission, and individuals’ responses to testing positive. Voluntary

Stigma against people living with HIV/AIDs Page 6

confidentiality by most doctors or health providers.

such circumstances, these patients have always endured. However,

Research priorities on HIV/AIDS related stigma

focus on the following:

service delivery settings and community settings.

counseling and testing centres.

Stigma against people living with HIV/AIDs Page 8

transmission (PMTCT) intervention.

Stigma against people living with HIV/AIDs Page 9

caused. The human rights approach would also reduce on stigma.

response. While international political, financial and technical support is important,

the persistent engagement of the highest levels of government in evaluating programs

5. There is also need to facilitate discussion about an individual or communities own

Stigma against people living with HIV/AIDs Page 10

knowledge, counter stigma and discrimination, create social consensus on safer

behaviour, and boost AIDs prevention and care skills.

6. Programmes such as TASO (The Aids Support Organisation) in Uganda have

counteracting denial something that is urgently needed in Bandung.

credible as many will take voluntary testing and counseling.

have nothing as many respondents acknowledged. Many programmes need to become

Stigma against people living with HIV/AIDs Page 11

can provide yet it’s needed.

because of misconceptions or being reluctant.

Stigma against people living with HIV/AIDs Page 12

ADDRESSING THE CAUSES OF STIGMA AND DISCRIMINATION INTERVENTION

ACTIONABLE WHAT TO DO? TARGET AUDIENCES

and knowledge discrimination other officials,

discrimination reducing institutions (e.g.

and their harmful them, using a combination of: hospitals, schools,

effects – Participatory education, which involves activities workplace),

that encourage dialogue, interaction and critical nongovernmental

thinking; organisations, faith based

– “Contact strategies”, which involve direct or organisations,