A STUDY OF STIGMA AND DISCRIMINATION TOWARDS PEOPLE

LIVING WITH HIV/AIDS

MAJOR PAPER

Matakuliah : Seminar Psikologi Komunitas

BY

MUWAGA MUSA

190220093001

MAJOR PAPER SUBMITTED TO THE FACULTY OF PSYCHOLOGY GRADUATE

MASTERS OF SOCIAL PSYCHOLOGY

AUGUSTUS 2010
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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

understood aspects of the epidemic.

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

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 to address the causes of stigma and its consequences to communities as

this is the central part in the fight against the pandemics.

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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

before they could take bath.

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

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. 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.

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Research (data collection)

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

homosexuality for men.

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,

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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

comprehensive socialisation is urgently needed in most communities.(d) that HIV/AIDs should

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

discrimination which might befall them in case they open up.

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

number of PLWHA is on the increase. He attributed this to government failure to sensitise

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

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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

advice as recommended by psychologists, physicians and friends. He added family counseling is

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.

Data analysis based on the services and a few stakeholders

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

changes that have improved their well-being.

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 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

professionalism to ensure confidentiality when diagnosis are made.

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.

People living with HIV/AIDs

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

misbehaviors against the well established social norms of society.

Women and traditional societies:

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

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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

their property being seized after their partner died.

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

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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

they are already stigmatized by the communities and by themselves.

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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

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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

during late hours in the night transacting sex.

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

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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

provided for free.

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.

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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 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.

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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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.

1. A more comprehensive research (study) is urgently needed to enable a better

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:

A. 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.

B. Developing models to reduce HIV/AIDs stigma for strengthening the role

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.

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C. Improving patient care approaches through measuring changes in

treatment seeking behaviour changes of HIV infected individuals for

opportunistic infections through improving and creating a better understanding of

key concepts like confidentiality, inclusive approaches and collaboration.

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

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

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

they reside rather than restoring it.

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.

4. 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.

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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

programmes need to become more comprehensive in either geographical coverage or in

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

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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

infect the other simply because of misconceptions or being reluctant.

INTERVENTION STRATEGIES STIGMA AND DISCRIMINATION

ACTIONABLE WHAT TO DO? TARGET AUDIENCES

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

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people affected by HIV; and

– Mass media campaigns. people living with HIV,

-Foster motivation for change through advocacy general population

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

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Information

Linking people -Discuss the ‘taboos’ – including gender organisations, faith based

with HIV with inequalities, religious and social norms visa vise organisations,

behaviour that -Domestic violence, sexuality, and injecting drug organisations of

is considered use – using a people living with HIV,

improper and combination of: General population.

immoral – Participatory education;

– Contact strategies which involve direct or

indirect interaction between people living with

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

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assistance; and

– Strategic mitigation against discrimination in

Various settings.

References

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