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.

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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

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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.

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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.

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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,

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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.

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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

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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.
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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.

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(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.

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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

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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

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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.

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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

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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

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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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