Professional Documents
Culture Documents
MAJOR PAPER
BY
MUWAGA MUSA
190220093001
AUGUSTUS 2010
MAJOR PAPER
Background
In 1987, the late Jonathan Mann, then director of the WHO Global Programme on AIDS,
identified three phases of the HIV/AIDS epidemic: the epidemic of HIV, the epidemic of AIDS,
and the epidemic of stigma, discrimination, and denial. He noted that the third phase is “as
central to the global AIDS challenge as the disease itself” (Mann 1987). Despite international
efforts to tackle HIV/AIDS since then, stigma and discrimination remain among the most poorly
This poor understanding is due in part to the complexity and diversity of Stigma and
discrimination, but also in part to limitations in current thinking within the field and the
inadequacy of available theoretical and methodological tools. The purpose of this major paper is
to propose a new conceptual framework to help inform thinking about the processes of Stigma
and discrimination, about the way these processes are related to HIV/AIDs, and about potential
interventions to address Stigma and discrimination and minimize their impact to people living
with HIV/AIDs in general and the communities in particular in west java Bandung district.
According to the Government Communications, strategies that are directed towards the
pandemic included HIV/AIDs prevention and awareness programmes, care and support
medical care services available. The task of implementing these strategies lies with the
government departments to address the causes of stigma and its consequences to communities as
1 Muwaga musa
MAJOR PAPER
Problem identification
Despite government efforts to sensitize the public about HIV/AIDs, there seems to be
misconception about the understanding on how the disease is spread and not spread. I
became aware of the problems of stigma and discrimination after having stayed in Bandung
for two months. One could wonder how this happen, but it happened. In a hostel where the l
stayed for only 4 months students were not comfortable with my 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. I could wake up early for
prayers but still boys could contribute money to buy detergents to clean up the bathrooms
Objectives
Given the above background, this research is urgently needed to find out whether the
behaviors of those boys were out of ignorance, little knowledge about HIV/AIDs, ineffective
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. This study looks forward to find out the causes of stigma as a
concept that has always been ignored by those who counsel communities about HIV/AIDs.
Not only that but also to generate a foundation upon which recommendations will be got to
promote the well-being of people living with HI/AIDs and communities as well.
2 Muwaga musa
MAJOR PAPER
Data in this study was obtained through conducting in-depth interviews and observations.
However, given the sensitivity of the topic under study, demographic factors like age, gander,
level of education and others were not observed. The number of respondents was 10 and 1 health
provider (from counseling department) at the center of disease control at Hasan Sadikin hospital
From findings, all respondents acknowledged that they are HIV positive. Men and women
reported to have contracted the disease from injecting drugs. Some respondents attributed the
infection to be a result of their spouses’ misbehaviors, like prostitution for women and
They expressed the free environment where they meet with friends at the center and share
experiences about the disease and treatment in general. Some respondents said, initially they
used not to collect drugs. All this was due to fear being discriminated and stigmatized by friends
and relatives in case met in the hospital. However, with continuous guidance and counseling,
many have gained stamina due to social support from colleagues now they collect the drugs. Not
only that but also giving advice and encouragement to one another to collect and use ARVs
effectively.
Observation made at the center by the researcher varied from HIV/AIDs where patients are
counseled to where they ease themselves. It was observed that many patients have to wait if they
to be served. This is caused by the ever increasing numbers of patients that come for drug
collection, guidance and counseling services. Diagnosis and counseling takes place in the same
room. By the time the center was opened in 2004 it was to serve 24 patients a day, however, to
date more than 55 patients report to the center. To ensure confidentially of the patients,
3 Muwaga musa
MAJOR PAPER
counseling is always postponed. Closely related to the above, urinals for men, women and
children for people living with HIV/AIDs are insufficient. Men and women use one room to ease
themselves. To this point, men, women and children were observed lining up.
All respondents recommended government efforts towards people living with HIV/AIDs. This
ranged from provision of free ARVs, guidance and counseling services to sensitaisation of
communities about the pandemic. PLWHA among the things they recommended to happen in
communities included (a) communities should know more about HIV/AIDs; this come as a result
many of the respondents said they had limited knowledge about HIV/AIDs before getting
infected. (b) TV should not be the only source of information about HIV/AIDs (c) more
not only be remembered only on international AIDS organised on 01/December / of every year.
Most of the respondents acknowledged that they have never informed their family members
about the state of their lives due to fear of discrimination and stigma. They reported that many
university students, employees are HIV positive and that they are always sighted at the center
collecting ARVS with knowledge of their parents. Many respondents stressed that many
employees and Students fear to declare their HIV/AIDs status because they fear stigma and
In-depth interview with health provider, when asked about his experience, it was discovered
that he had the experience to handle HIV/AIDs patients. For the time he has been in service, the
communities about injection and drug abuse as they still the major causes of infection. Since the
center was established in 2004, its facilities have never been expanded. For example the number
counselors are very limited yet the number of patients is increasing every day. To ensure
4 Muwaga musa
MAJOR PAPER
efficiency, most patients are always scheduled to different days of counseling because of the
limited space available. He expressed his annoyance at most people with HIV/AIDs.
Most of these people have always refused to carry their biological parents or relatives for
counseling something that he said has made their work very difficult as these patients don’t take
recommended for people living with HIV/AIDs because this provide social support, motivation
through close monitoring like ( PMO) PENGAWAS MINUM OBAT. He acknowledged that
Confidentiality is still lacking among some health providers and this has scared away many
people from getting tasted. Furthermore, a special team of doctors have always moved to
schools, communities and many TV programs have been organised to get communities sensitized
on HIV/AIDs. However, most of these programs their efforts have been directed to how the
disease spreads and little has been said about the causes and effects of stigma. Since 2004 to
date, some health providers are reported to have contracted the disease and this is attributed to
limited understanding of the pandemic or negligence of some people while executing their
duties.
Although the concept is negative, stigma can have positive consequences. It has created a sense
of community among stigmatized individuals, motivating them to support each other and make
HIV/AIDS stigma affects issues related to HIV testing including delays in testing, the effect of
counseling and testing is an important strategy for HIV prevention entailing pretest to post-test
5 Muwaga musa
MAJOR PAPER
counseling for optimal impact. Failure to return for report and post-test counseling was reported
to be associated with lower levels of social support, delays in accessing hospitals services as
these people are not always given adequate attention by hospital administration and lack of
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 every day. Despite the
increase in number, the facilities like offices and manpower of 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.
Because these services are free and they fear being identified in case a protest is organised.
Data in this study was generated from people living with HIV/AIDs. These people are blamed
for contracting the disease through their risky behaviour by the communities’ .According to the
findings, ‘It’s people’s own fault if they get HIV/AIDs. Such responses disrupt an individual’s
social interactions and thereby leading to a feeling of isolation. Such talks are based on
community social norms like religion which preach against prostitution, drug use and injections,
upon which if people fellow victims of HIV/AIDs, they are held responsible for their
The social hierarchy and the differential power relations that exists in most communities, 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
6 Muwaga musa
MAJOR PAPER
and looking after their children 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. The method of
transmission does not affect 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. Women with HIV/AIDS are hesitant to access
health care for fear of breach of confidentiality, perceived stigma from health providers and are
reluctant to take medications that identify them as being victims. Women are afraid that
disclosing their HIV-positive status result in physical violence, expulsion from their home or
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 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
7 Muwaga musa
MAJOR PAPER
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 life 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.
Hospital
According to the Centers for Disease Control and Prevention, the number of patients with
HIV/AIDS continues to rise. Men, women and children with HIV/AIDs in Bandung are not rare
but hidden due to fear of being stigmatized and discriminated. But they are actively involving
themselves in commercial sex especially during the wee hours they are sighted in malls and other
entertainment centers.
Respondents reported that a high degree of stigma among individuals living with HIV infection
have greatly impacted on an individual’s decision to medical care regimens. Stigma shares a
relationship 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
8 Muwaga musa
MAJOR PAPER
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 Hasan
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.
Crowding of people living with HIV/AIDs right from where they register for medicine,
counseling up to where they ease themselves. Men, women and children were seen lining up for
toilet, above all, one room serving both sexes including children. From the psychological
perspective, privacy and confidentiality of those people is not observed. Not only that but even
their well-being hampered by the hospital administration which failed to provide enough
facilities to ensure that men and women are separated as these have different life experiences
about HIV/AIDs.
Looking at the field theory of crowding (schopler and stokols, 1976), psychologically this is a
syndrome of stress resulting from ecological, social and spatial factors. Subjecting people living
with HIV/AIDs to crowding is one way of stigmatizing and discriminating them which finally
increase their stress and finally fail to comeback for services due to fear of unbecoming
9 Muwaga musa
MAJOR PAPER
situations that subject them to torture. This crowding due to lack of space is a consequence of
perceived loss of control over the regulation of space including interpersonal distance. Like
noted in the findings, counseling and diagnosis are conducted in the same room so one of the
activity has to be postponed to later time or date this happens because these patients have no say
in the hospital administration after all, they receive free services. When individual experience
stress due to crowding, they tend to initiate coping skills to reduce on the stress, people respond
differently to the same stressor. So the best coping skills initiated by most patients is stop coming
for services something that aggravated the spread of the disease as these people are often sighted
Government:
All respondents reported that stigma exists because of increasing ignorance on how HIV is
transmitted, leading individuals and communities to fear casual contagion through such actions
as shaking hands, coughs and sharing eating and toilet facilities. Disease-related stigma can be
reduced by education which government through its agents for change has failed to achieve
respondents said. Communities who have little knowledge or are misinformed about HIV
transmission are much more likely to hold discriminatory attitudes than those who are well
informed.
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
10 Muwaga musa
MAJOR PAPER
aside stigma. Women reported that up to date, 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
9 out of 10 respondents hold that their relatives are not aware that they are HIV positive. This is
because they fear to be chased out of home, discriminated and stigmatized as the disease is
attributed to behaviors such as prostitution, injections of which these are abominable acts in
Islamic religion of which Muslims are the majority in Bandung. Closely related to the above,
most of these people are dependants for example students in case discovered with the disease
they are chassed out family and denied education there by affecting their well-being.
However, it should be noted that Indonesian government once more, is signatory to international
human rights observance but still people are being discriminated on grounds like acts that
contradicts social norms like prostitution, if the fight against stigma and discrimination is to gain
ground, people must be sensitized on the dangers of their behaviors against people living with
HIV/AIDs. Not only that but also working with them in programs that promote the well-being of
the community. All respondents reported that there is limited information about HIV/AIDs in
areas outside the city of Bandung and the main source of information about HIV/AIDs is TV and
papers. Though programs like WARGA PEDULI HIV/AIDS are in place, their effectiveness is
questionable.
11 Muwaga musa
MAJOR PAPER
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 student 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 status.
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.
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,
12 Muwaga musa
MAJOR PAPER
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) 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:
The main objective of this study was to generate solutions and recommendations related to
stigma and discrimination towards people living with HIV/AIDs. This recommendations range
from government policies, health providers training, educations as stated here under.
understanding of the varied forms of stigma taking place in the community and at the
level of service providers. More studies are needed to focus on the following:
different health care centers, service delivery settings and community settings.
of voluntary counseling and testing centers, talking about causes of stigma should
be the turning point if effective programs are to gain ground in the intended
communities.
13 Muwaga musa
MAJOR PAPER
1. 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
2. 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
3. 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.
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
14 Muwaga musa
MAJOR PAPER
5. Effective strategies should 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. Social support and
Care services have to be extended beyond caring for PLWHA. 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.
6. 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.
7. Many organisations that are providing services in communities need to extend their
services to other areas outside the city of Bandung as many respondents acknowledged
that there is limited sensitaisation of communities about the causes of stigma. Many
content delivery not only this but also to address the causes of stigma not merely talking
about the causes of HIV/AIDs. 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
15 Muwaga musa
MAJOR PAPER
experiences to the rest of the community members which nobody else can provide yet it’s
needed.
8. 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
of stigma and are, the harm they cause, and the benefits of -media, civil society,
16 Muwaga musa
MAJOR PAPER
Marginalized groups.
Fear of acquiring -Address fears and misconceptions about HIV Government and
everyday contact about how HIV is and is not transmitted using a media, civil society,
17 Muwaga musa
MAJOR PAPER
Information
Linking people -Discuss the ‘taboos’ – including gender organisations, faith based
with HIV with inequalities, religious and social norms visa vise organisations,
and
Change behaviour.
through:
18 Muwaga musa
MAJOR PAPER
assistance; and
Various settings.
References
19 Muwaga musa