CHAPTER ONE
INTRODUCTION
1.1 Background to the Thesis
Many people avoid having anything to do with people living with the Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS).
As a
result, some infected persons conceal their HIV-positive condition because of the stigma
associated with the virus. Some of them continue to have unprotected sex, thereby
infecting more people with the dangerous virus (Ohene-Sakyi, Adoo-Adeku, Aggor,;
Benneh, Anibra, & Obeng, 2010).
HIV / AIDS is the most widespread and devastating epidemic of the 21st century.
Globally, HIV has virtually spread to all the regions of the world and has affected
different people of diverse status and background. Indeed, men, women, and youth are all
at risk. As soon as the HIV/AIDS was discovered in 1981, it was perceived as a disease
that defied science and associated wrongly with immoral behaviour. Scientists first
looked for the agent responsible by focusing on the biological mechanisms of the action
of the virus, the natural history of the disease and the epidemic, the means of prevention,
care and treatment. People Living with HIV/AIDS (PLWHA) face not only medical
problems but also social problems associated with the disease. Because of the
misconception that ‘bad people’ acquire the disease and the fear associated with it, many
people have put some stigma and discrimination on those who have been infected and
affected by HIV / AIDS. PLWHA were and still are suffering from great ordeals of
rejection, ostracism, moral judgments, in addition to the daily traumatizing burden of
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their physical and psychological experience. This situation has intensified their feelings
of isolation and despair.
Discrimination against PLWHA in the areas of employment, education, individual
liberties, access to healthcare, social security, access to bank loan, insurance is observed
in various settings (Herek & Glunt, 1988). The respect of the rights of the HIV-infected
person is one of the fundamental rights of every individual, which nearly all countries in
Africa and the world have enshrined in their constitutions. These include socio-economic
rights, educational rights, cultural rights and practices. These rights are infringed with
impunity. Pregnant women go through mandatory testing as part of the prenatal care.
Employers demand HIV testing before recruitment or communication of the results of
HIV diagnosis or test. In their daily life, PLWHA are often indexed and in some
countries, they go into hiding and avoid revealing their status and getting involved in
AIDS control activities (WHO, 2004).
Chijioke, Preko, Baidoo, Bayard, Ehiri, Jolly & Jolly, 2005) in their book -‘HIV/AIDSrelated Stigma in Kumasi, [Ghana], state that, in Ghana and many countries in subSaharan Africa, HIV transmission occurs primarily through heterosexual intercourse. In
these countries, HIV/AIDS is widely seen as a consequence of sexual immorality or
immoral behaviours, thus, infected individuals are considered responsible for acquiring
the virus. In some cases, the infection is perceived as a punishment given by God to
perpetuators of sins like prostitution, promiscuity, drug use or homosexuality (Ayranci,
2005). Most Ghanaians are perceived and perceive themselves as very religious and
moral people and have a strong value system. As part of the value system, they believe
that an individual should abstain from sex until marriage and that those who acquire
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HIV/AIDS through sexual activity or promiscuity bring disgrace to their families. They,
therefore, point the finger towards PLWHA. The least moral people sometimes are the
first to point fingers at PLWHA. The stigma starts from that angle (Chijioke, et al, 2005).
In the particular case of Ghana, HIV prevention and treatment programmes have been
established to combat the AIDS epidemic. For example, the trend in the national median
HIV prevalence since 2003 shows three peaks: 2003 (3.6 %), 2006 (3.2 %) and 2009 (2.9
%) (Draft NSP, 2011-2015). However, reports from the United Nations Integrated
Regional Information Networks (IRIN) on Africa indicate that the Ghanaian
government’s AIDS programme is in danger of failure due primarily to stigma and a
failing health system (IRIN.2005). Since the beginning of the epidemic, much progress
has been made preventing new HIV infections and in delaying progression of the disease.
However, very little has been done to halt the effects of stigma and discrimination (Pilot,
2006).
In 1988, a panel convened by the Institute of Medicine concluded “The fear of
discrimination is a major constraint to the wide acceptance of many potentially effective
public health measures” (Herek & Glunt, 1988). Now, more than twenty five years after
the start of the epidemic, the stigma and discrimination of AIDS is still a hindrance in the
fight against the disease. The stigma and discrimination of HIV/AIDS hampers the
effective AIDS response, deters people from knowing their status, prevents high risk
individuals from receiving needed services, prevents condom use and creates noncompliance with breastfeeding recommendations for HIV positive mothers (WHO/
UNAIDS, 2004). In respect of preventing the condom use, PLWHA who decide to buy
condom to prevent reinfection perceive people will identify them as having HIV and that
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is why they want to use the condom. Halting the epidemic will involve changing the
perceptions of individuals in the community toward HIV and PLWHA. Although there
are homosexuals in Ghana (known MSM sites, 2008), the only form of sexual
transmission of HIV that working documents of Ghana on HIV/AIDS recognise is
heterosexual transmission (Ghana AIDS Commission, 2000). International documents
reports nothing on HIV transmission by homosexual or bisexual groups in Ghana
(UNAIDS, 2002). The criminal code of 1960 (Act 29) of Ghana makes “sexual
intercourse with a person in an unnatural manner” a crime (Attipoe, 2008). However,
HIV is transmitted through both homosexual and heterosexual relationships but much has
not been done by government agencies and other organizations to educate homosexuals
on how to prevent HIV. They cannot even be identified. This is a draw back to the
programme on HIV prevention.
At the community level, the fear of stigma and discrimination can lead to the refusal of
Voluntary Counselling and Testing (VCT) for HIV, increased gender-based violence and
marginalization of high risk individuals (Heyward, Batter, Malulu, Mbuyi, Mbu, St
Luois, Kamenya & Ryder, 1993). Community members may not seek VCT because of
the fear of discovering that they are HIV positive and fearing of the resulting stigma and
discrimination. Thus HIV/AIDS- related stigma and discrimination may have a profound
impact on the disclosure of HIV status and the subsequent care, support or treatment that
HIV positive persons receive by society at large (Mill, 2003).
In Ghana, HIV positive persons hide their HIV-seropositive status to reduce HIV/AIDSrelated stigma and discrimination and to retain the care and support of family members
(Mill, 2003). People who feel stigmatized or discriminated against are more likely to
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have poor health outcomes, socio-psychological problems and suicidal thoughts (Katz &
Nevid, 2005). Tackling HIV stigma and discrimination will involve tackling perceptions
and values towards sexuality and HIV/AIDS.
According to Yeboah-Afari (1988) and Decosas (1995), individuals who engaged or
solicited commercial sex workers (prostitutes) from Cote d’Ivoire are believed to be the
pioneers who have contracted HIV/AIDS in Ghana. So, those who later went to that
country and returned chronically sick were already stigmatized and discriminated even
before it was recognized that they had HIV. Foreigners, gay men and the devil are also
blamed for the disease (Prince, 2004). Thus, those who have HIV/AIDS are blamed for
the disease. The stigma and discrimination related to sexual immorality are due to
cultural values against prostitution, promiscuity and homosexuality. For example,
commercial sex workers have been stigmatized and frequently harassed and humiliated
by law enforcement agents (WiLDAF, 2006). The fear of HIV/AIDS (due to
misconception and fatality of AIDS) may be the source of HIV/AIDS in Ghana
(Ankomah, 1998; Mill, 2003; Prince, 2004).
Again, family members are considered ultimately responsible for the behaviour of each
household member and the family is blamed or praised for the behaviour of its members
(Hintz, 1997). An individual is linked to a long chain of living and deceased members in
his or her family and in his or her town or village (Hintz, 1987). Thus, family members of
a person who dies from or lives with HIV/AIDS are also stigmatized. Family members
may encourage relatives with HIV/AIDS to remain silent about their HIV status to
prevent gossip, social rejection and HIV-related stigma. In some cases, family members
isolate relatives with HIV to minimize social contact and/or prevent infection (Hintz,
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1987). The stigma continues from there. The researcher investigated the kinds of stigma
they faced, how they felt and what strategies People Living With HIV/AIDS (PLWHA)
employed to cope with the stigma against them
1.2 Statement Of The Problem
Article 1 of the Universal Declaration of Human Rights states that, “All human beings
are born free and equal in dignity and rights. They are endowed with reason and
consonance and should act towards one another in a spirit of brotherhood”. The preamble
of the declaration asserts
Whereas recognition of the inherent dignity and of the
equal and inalienable rights of all members of the human
family is the foundation of freedom, justice and peace in the
world, whereas disregard and contempt for human rights
have resulted in barbarous acts which have outraged the
conscience of mankind
This has culminated in the formation of the United Nations’ declaration. Article 7 of the
same declaration notes “All are equal before the law and are entitled without any
discrimination to equal protection of the law”. Unfortunately, by shear ignorance of the
law or non-adherence of the law, People Living With HIV/AIDS are stigmatized and
discriminated against in society by people.
During television news bulletin on the screen of one of the media houses in Accra (TV
Africa) on World AIDS Day on 1st December, 2010, all the PLWHA had their faces
covered. It was clear they feared if people identified them as having HIV/AIDS, they
(PLWHA) would be rejected and isolated by their friends, family and former well
wishers. This was evident when one of the interviewees said she has not been open
because her husband died of the disease and her family as well as her husband’s family
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do not want to have anything to do with her. This shows that the stigma and
discrimination against this category of people is rampant and massive and that they are
excluded from society. Others have their right to education curtailed even though article
26 of the declaration protects it.
The African Charter of Human and People’s Rights (1981) has article 2 claiming that
“Every individual shall be entitled to the enjoyment of the rights and freedoms
recognized and guaranteed in the present charter without distinction of any kind such as
race, ethnic , social origin, fortune, birth or order or status.” Article 28 of the same
charter saying that “every individual shall have the duty to respect and consider his
fellow beings without discrimination and to maintain relation aimed at promoting,
safeguarding and reinforcing mutual respect and tolerance”. The status in the document
includes socio-economic status, has HIV elements as part of the social status.
The 1992 Constitution of Ghana guarantees Fundamental Freedoms and Human Rights.
Article 17 prohibits discrimination on the grounds of gender, race, colour, ethnic origin,
religion, creed or social or economic status. The gender here includes both male and
female PLWHA as well as those without HIV. PLWHA are not allowed to mingle in
society proper: the moment their status is known by others and are not allowed to enjoy
their basic rights and freedoms such as healthcare, education, work, and movement in the
community among others. Some institutions and organizations compel their potential
employees and subjects to undergo compulsory HIV/AIDS test. Consequently, they
stigmatize and discriminate against them when they test positive. We see PLWHA as
victims of the virus and the subsequent stigma and discrimination. However, we are not
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aware of the depth of PLWHA perspectives of the kinds and sources of stigma and
discrimination. The researcher found out more on them.
Article 23 of the declaration postulates that everyone has the right to work or free choice
of employment, without any discrimination, has the right to equal pay for equal work,
remuneration and join trade unions; but according to Ohene-Sakyi et al (2010), many of
the PLWHA, are either sacked from their jobs or have their job description changed by
their employers and superiors after their status has been known. The employers action
imply that, their continuous stay at the job places, where they mingle with people, would
contribute to the infection of others at those places. Due to this mistreatment, PLWHA
cope/deal with their conditions differently.
Some use constructive means and others use destructive means. Some PLWHA conceal
their status and infect others as vengeance on the society that infected them.
Constructively, other PLWHA engage in more positive or productive ways of educating
other people on the virus. The researcher found out more on their coping strategies, how
they respond, how they feel with the stigma and how they seek for redress when society
discriminates against them.
1.3 Purpose of the Thesis
The research aimed at providing evidence about the daily sources of stigma against
PLWHA. This is in the area of sexuality, gender, race and ethnicity, class, fear of
contagion of the disease and witchcraft. The work also presented the personal views and
experiences of how People Living With HIV/AIDS experience the stigma and
discrimination in the area of employment and workplace, policy and legal contexts
8
healthcare systems, HIV/AIDS programmes and policies, religious institutions,
community contexts, traditional healers and family contexts. It also discussed how
PLWHA feel about the kinds of stigma and discrimination and how they cope (respond)
with the stigma and discrimination against them in the study area. I focused more on
telling their stories.
1.4 Objectives Of The Thesis
The research was designed to:
1) describe the kinds and sources of stigma and discrimination PLWHA experience.
2) explore how PLWHA feel about the stigma and discrimination against them.
3) highlight how PLWHA cope and respond to such stigma and discrimination including
where they seek redress.
1.5 Research Questions
1) What is the nature of the stigma and discrimination PLWHA experience?
2). What are the sources of stigmatization and discrimination against PLWHA?
3) How do PLWHA feel about the stigma and discrimination against them?
4) How do PLWHA cope with the stigma and discrimination against them?
5) How and where do PLWHA in Accra go for redress when abused by people because of
their status?
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1.6 Significance of the Thesis
This research work is significant because it will enrich existing literature on HIV/AIDS
related stigma in the communities PLWHA live so that those who are ignorant or naïve
about their actions that cause stigma would advise themselves accordingly. There is
perceived stigma and discrimination against PLWHA, but people do not talk about it
openly and publicly. With the kind of research work conducted, it adds to the intellectual
debate on HIV/AIDS related stigma and discrimination by adding to the voices to those at
the centre of HIV/AIDS issues.
A human face is added to the whole HIV/AIDS issue and its stigmatization and
discrimination. Since the research is about stigma and discrimination against PLWHA,
investigation into the nature and sources of the stigma against PLWHA is done using the
interview schedule to make PLWHA talk in depth into how they feel and cope with the
stigma and their experiences. These coping strategies at the long run help other people
who find themselves in similar situations.
In the end, findings into the coping strategies PLWHA employ is presented and the
recommendations that is provided is the basis for which further research work would be
conducted into the research problem and other related problem on HIV/AIDS related
stigma and discrimination by students, regulatory body on HIV/AIDS (Ghana AIDS
Commission) and other advocacy and activism groups on HIV/AIDS. They will find this
research useful for their literature. Their activities on HIV/AIDS related stigma and
discrimination would be greatly enhanced using this research work as a guide. This will
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also inform civil right activists of how PLWHA are viewed in society so that these
activists’ work would be enhanced greatly.
The research will also be published on the internet to enable other individuals and
organizations which will see this research useful. They will have access to parts or all of
the research work by the click of their button. This includes the recommendation and
other parts.
1.7 Operational definitions of terms
Human rights: basic entitlement due to human persons or basic standards that relate to
dignity of a human being usually recognised by law in a state, including politics,
economic, cultural, children’s, women’s individual and group rights.
Categories of human rights based on activities involved in the exercise of the rights
and nature of individuals and groups that are predominantly target beneficiaries or the
rights as:
Political rights
Economic rights
Educational rights
Cultural rights
Women’s rights
Children rights
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Human rights abuse: denial and /or disrespect for one’s rights whether political,
economic, or cultural or environment.
Stigmatization. Isolating someone due to his/ her infection of HIV
Discrimination. Treating someone differently due to his/ her HIV condition
Ashawo. A local name for prostitute
Kakokoolo. A Ugandan local name for walking corpse
Kamuyoola. A Ugandan local meaning to be caught in the trap.
Babaso wirenfo. A Ghanaian local name for HIV/AIDS
1.8 Delimitation and scope of the Thesis
PLWHA in Accra are the subjects of the research. This study was conducted in
particular areas such as McCarthy Hill, Weija, Teshie, Nungua, La and Osu. Besides,
given the limited time that was available to do the field work, it was necessary to
focus on only few PLWHA so as to be able to get an in-depth understanding of their
lives. Therefore, the conclusions made are based on the findings of the indepth
interviews made with 6 PLWHA who lived and work in selected areas. I recognised
the fact that it could be problematic to generalize the findings to all PLWHA in
general. Diligence was taken while selecting the sample respondents to make sure
that it covered range of experiences of the study population as much as possible but
there is no claim that this sample is statistically representative.
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1.9 Organisation of the Thesis
This study is put into five chapters. The first chapter is the introductory chapter and has
eight sub-headings made up of the background to the study, statement of the problem,
purpose of the study, objectives of the study, research questions, significance, limitations
and ethical considerations of the study.
Chapter 2 is mainly devoted to the review of relevant literature on the research problem.
The sub-titles include the definition of stigma, origin and context of stigma, forms of
stigma, definition of discrimination, HIV/AIDS related stigma and discrimination, causes
and sources of HIV/AIDS –related stigma and discrimination, nature and kinds of
HIV/AIDS-related stigma and discrimination, how people living with HIV/AIDS feel
about the stigma and discrimination against them, coping strategies people living with
HIV/AIDS employ and where and how people living with HIV/AIDS in Accra can seek
redress when abused.
The third chapter deals with methodology of the study. In it, the researcher discusses the
research method used, the study area, population of the study, sampling and sampling
technique and data collection procedures.
Chapters four and five are about the data presentation and analysis and summary,
conclusion and recommendations respectively.
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CHAPTER TWO
LITERATURE REVIEW
2.0 Introduction
This chapter focuses on the literature review. The review starts with what is stigma. The
review explores the background information about the origin, context and forms of
stigma, and discrimination and HIV/AIDS-related stigma and discrimination. The causes
and sources of HIV/AIDS-related stigma and discrimination are also discussed. In
addition, the nature and kinds of HIV/AIDS-related stigma and discrimination are also
explained. The chapter also examined how PLWHA feel about the stigma and
discrimination against them, the coping strategies PLWHA employ, as well as where and
how PLWHA in Accra can seek redress when abused.
2.1 What Is Stigma And Discrimination?
According to Goffman (1963), stigma is an interactive social process that marginalizes
and labels those who are different. It is “an attribute that is deeply ‘discrediting’ and
results in the reduction of a person or group” from a whole and usual person to a tainted,
discounted one. It carries blame which lies on the person carrying the stigma.
Discrimination is the end result of the process of stigma. It is the negative acts that result
from stigma and that serve to devalue and reduce the life chances of the stigmatized in
society (Campbell, 2005). Discrimination occurs when distinction is made against a
person that results in being treated unfairly and unjustly on the basis of being infected
with the HIV virus (Campbell (2005).
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2.1.1 Origin and content of stigma
The word stigma referred originally to a tattoo mark or brand on Greek slaves, clearly
separating them from free men. It is also a mark of disgrace, discredit, or infamy
(Goffman, 1963).
Today, the term “stigma” is applied more to social disgrace than to any bodily sign.
Stigma includes prejudice and can lead to active discrimination directed towards persons
with whom they are associated and this separation implies devaluation.
2.1.2 HIV/AIDS - related stigma and discrimination
According to Gregory, (2010), HIV/AIDS related stigma is defined as prejudice,
discounting, discrediting, and discrimination directed at people perceived to have HIV or
AIDS, and the individuals, groups, and communities with which they are associated.
AIDS stigma has been manifested in discrimination, violence and personal rejection of
People with AIDS (PLWHAs), whereas the characteristics of AIDS as an illness probably
make some degree of stigma inevitable. This is because it is seen as a deadly disease.
AIDS has also been used as a symbol for expressing negative attitudes toward groups
disproportionately affected by the epidemic, especially gay men and injecting drug users.
AIDS stigma is a social construct which affects the well-being of PLWHAs, loved ones
and their caregivers, both volunteers and professionals and influences their personal
choices about disclosing their sero-positive status to others.
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2.1.3
Causes and sources of HIV/AIDS-related stigma and discrimination
Herek and Glunt (1991) pointed out that the sources of stigma and discrimination
attached to HIV/AIDS as an illness is layered and overlap upon pre-existing stigma and
discrimination. It is associated with race, class, sexuality, gender and poverty. HIV/AIDS
related stigma and discrimination also interact with pre-existing fears about contagion
and disease. Early AIDS metaphors as death, as horror, as punishment, as guilt, as shame,
as otherness have exacerbated these fears, reinforcing and legitimizing stigmatization and
discrimination.
2.1.3.1 Sexuality
Sexuality talks about someone’s ability to experience or express his or her sexual
feelings. HIV/AIDS related stigmatization and discrimination are most closely related to
sexual stigma. This is because HIV is mainly sexually transmitted and in most areas of
the world, the epidemic initially affected populations whose sexual practices or identities
are different from the ‘norm’. HIV/AIDS related stigmatization and discrimination has
therefore appropriate and reinforced pre-existing sexual stigma associated with sexually
transmitted diseases, homosexuality, promiscuity, prostitution and sexual ‘deviance’
(Gagnon & Simon, 1973: Plummer, 1975; Weeks, 1981).
The belief that homosexuals are to blame for the epidemic or that homosexuals are the
only group at risk of HIV is still common. Promiscuous sexual behavior by women is
also commonly believed to be responsible for the heterosexual epidemic, regardless, of
the epidemiological reality. In Brazil, for example, where surveillance data have shown
high rates of HIV infection among monogamous married women, HIV-positive women
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are still widely perceived to be sexually promiscuous. (Parker Galvao, 1996). In sub
Saharan Africa what happens to one person concerns the whole community. The
communal life in itself poses a dilemma because, on one hand, it can bring about
discrimination when PLWHA are not able to interact owing to fear of being exposed of
their promiscuity, but, on the other hand, communal life also ensures help and care for
sick people. It is important to understand how stigma is used by individuals and
communities, in cultures where communal life is common, to produce and reproduce
inequality (Weeks, 1981).
2.1.3.2 Gender
Gender is the physical and social condition of being male or female. HIV/AIDS-related
stigmatization and discrimination are linked to gender-related stigma. The impact of
HIV/AIDS-related stigmatization and discrimination on women reinforces pre-existing
economic, educational, cultural, and social disadvantages and unequal access to
information and services (Aggleton and Warwick, 1999). In settings where heterosexual
transmission is significant the spread of HIV infection has been associated with female
sexual behavior that is not consistent with gender norms. For example, prostitution is
widely perceived as non-normative female behavior, and female sex workers are often
identified as “vectors” of infection who put at risk their clients and their client’s sexual
partners. Equally, in many settings, men are blamed for heterosexual transmission,
because of assumptions about male sexual behavior, such as men’s preference or need for
multiple sexual partners.
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2.1.3.3 Ethnicity
Ethnic stigmatization and discrimination
also interact
with HIVAIDS-related
stigmatization and discrimination, and the epidemic has been characterized both by racist
assumptions about “African Sexuality” and by perceptions in the developing world of the
West’s “immoral behavior”. Ethnic stigmatization and discrimination contribute to the
marginalization of minority population groups, increasing their vulnerability to
HIV/AIDS, which in turn exacerbates stigmatization and discrimination. According to
Treicher (in policy report, 2003) language is crucial to stigma. Since the beginning of the
pandemic, a series of powerful metaphors in language have been mobilized around
HIV/AIDS, which have served to reinforced and legitimized stigmatization. These have
included describing HIV/AIDS as death, horror, shame, punishment, crime, war and
otherness. For example in the Akan language in Ghana, it is called “babaso wirenfo”
meaning “killer gonorrhea”. People would not want to associate themselves with
something that kills. Hence the stigma and discrimination.
AIDS-related stigma is complicated by the epidemic’s association with already
marginalized ethnic groups. Consequently, most individuals do not respond to AIDS as a
transmissible disease rather they respond to it as transmissible disease of gay men and
other minorities. However, Weeks (1977), in Aggleton and Homans (1988), argues that
AIDS is not a disease of a particular type of person and it has affected and killed
heterosexuals and homosexuals, women and men, black and white, young and old, rich
and poor, the promiscuous and the inexperienced. AIDS thus provides many people with
a metaphor for prejudice and it is a convenient hook on which to hang people’s hostility
toward out groups. It is misleading to talk about risk categories as it leads to a belief that
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it is always someone else’s disease. It is further claimed that identification of AIDS as a
gay plague has potentially disastrous effects (Aggleton and Homans, 1988).
2.1.3.4 Class and financial difficulties
The HIV/AIDS epidemic has developed during a period of rapid globalization and
growing polarization between rich and poor (Castels, 1996, 1997, 1998). New forms of
social exclusion associated with these global changes have reinforced pre-existing social
inequalities and stigmatization of the poor, homeless, landless, and jobless. As a result,
poverty increases vulnerability to HIV/AIDS, and HIV/AIDS exacerbates poverty
(Parker, Easton, & Klein, 2000). HIV/AIDS–related stigmatization and discrimination
interacts with pre-existing stigmatization and discrimination associated with economic
marginalization. To some extent, the epidemic has been characterized by assumptions
about the rich, and HIV/AIDS has been associated with affluent lifestyles. This is so
because when people become rich they try to spend their money ostentatiously. One of
these ostentatious deeds is to spend it on women (in some cases commercial sex workers)
on the part of the men without protection when it comes to having sex with them. They
contract the virus from such lifestyles (Parker, Easton, & Klein, 2000).
According to Perkel (1992), because in the early days of the AIDS pandemic the disease
was associated with the male gay community in the United States, stereotyped
attributions of blame and the guilt for the disease were placed on their shoulders. Herek
and Glunt (1988) argued that HIV/AIDS is highly stigmatized because it is a disease that
is perceived as the bearer’s responsibility and the primary modes of transmission of
infection are behaviors that are considered to be of choice.
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Sexual relations
HIV/AIDS-
AIDS is a “gay plague”
and divisions
related stigma
AIDS is “spread by sex
and
workers”
discrimination
AIDS is a “woman’s disease
Gender relations
and divisions
AIDS is “caused by men”
Race
AIDS is a disease brought by
relations
“white men”
and divisions
AIDS is an “African disease”
Class
AIDS is a “disease of the
relations
rich”
and divisions
AIDS is a “disease of the
poor”sex workers
Figure 1: The link between HIV/AIDS and pre-existing sources of stigmatization and
discrimination.
The table shows the sources of stigma and discrimination. In the sexual relations, AIDS is
a gay disease and also spread by sex workers. Those who are assumed as gays and have
contracted the epidemic are stigmatized and discriminated against. Commercial sex
workers are also isolated because they spread HIV. In the gender relations, HIV is
assumed as a woman’s disease. Women who contract the virus are isolated, divorced,and
shunned. It is also a disease caused by men through multiple sexual preferences. In this
case, men who contract the disease are isolated, divorced, shunned, separated and
discriminated by their wives.
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Race relations have HIV/AIDS being brought by white men into the world through
intravenous drug usage and homosexuality. These make other race to stigmatize and
discriminate against them because the latter perceive themselves as not engaged in those
activities. HIV/AIDS is also assumed as an African disease through some chimpanzees in
central Africa. Africans who contract HIV/AIDS are stigmatized and discriminated
against. Class relations see HIV/AIDS as a disease for the rich through affluent lifestyles.
Those who do not benefit from the rich people stigmatized and discriminate against those
who contract it. The disease is also assumed as a disease of the poor. Due to its incurable
nature the poor cannot afford treatment that can enable them to manage it well. Hence,
they are stigmatized and discriminated against (Herek and Glunt, 1988). In conclusion,
there are other sources of stigma and discrimination but the pre-existing sources of HIV
stigma and discrimination cut across society norms and continents. The sources are
actually the reason for the stigma and discrimination.
2.1.3.5 Fear of contagion of the disease
HIV/AIDS is stigmatizing because it carries many symbolic associations with danger
(UNAIDS, 2000: Malcolm 1998: Daniel and Parker 1993). Attribution of contagion,
incurability, immorality and punishment for sinful acts is common in many societies. Any
person diagnosed with HIV is perceived as immoral. Quarm (1996) argues that beliefs
about AIDS as a ‘polluted disease’ reflects people’s negative evaluations of the routes
through which HIV enters the body. Sexually Transmitted Infections (STIs) are
considered to be agents of contamination or pollution in a study about HIV/AIDS
prevention among African traditional healers (Quarm, 1996). This polluting quality of
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AIDS and fear of the disease are translated into stigmatization responses such as
avoidance and isolation.
According to Haijun, C,.; Na, H.,; Qingwu, J.,; Meixia, Y.,; Zhenyao, L.,; Meiyang, G.,;
Pengli, D.,; Li, C.,; & Rojer D.,; (2010), in a study conducted on stigma against HIVinfected persons among migrant women living in Shangai, Chinese rural- urban migrants’
attitudes toward HIV infected individuals take forms of denial, indifference, labeling,
separation, rejection, status loss, shame, hopelessness and fear. These stigmatizing
attitudes were mainly derived from fears of AIDS contagion and its negative
consequences, fears of being associated with the disease, and culturally relevant moral
judgments. Kelly and Wood (1990), as cited in Herek and Glunt (1991) stated that,
HIV/AIDS is a fatal disease and this causes fear of infection. Secondly, it is perceived as
a condition that is unalterable although the effectiveness of highly active antiretroviral
therapy (HAART) has begun to change the perception of HIV to one of a chronic illness.
Stigma is most common with diseases that are seen as incurable and disfiguring. It is also
seen in diseases associated with transgression of social norms such as socially
unsanctioned sexual activity (Herek & Glunt, 2002).
In Africa, Dutch Antillean, and Surinamese Diaspora communities, there is belief that
HIV is highly contagious and that casual social contact can pose a risk for HIV infected
persons despite adequate knowledge regarding HIV transmission (Ogdon & Nyblade,
2005). Research conducted by Pryor, Reeder & Landau (1999), has shown that when
people are unsure about the fine details of HIV transmission, they tend to err on the side
of caution and avoid PLWHA.
22
Again the belief contributing to HIV-related stigmatization and discrimination in African
and African-Caribbean communities is the belief that HIV is a very severe disease. It is
frequently associated with death and wasting. PLWHA will surely die so no need to have
treatment (Bos, Schaalma, & Pryor, 2008). Attributions of blame are common in African,
Antillean, and Surinamese diaspora communities, and that HIV is frequently considered
due justice for immoral or irresponsible behavior from God, thus yielding less
compassion for PLWHA than for people with other medical conditions, and in others, it
comes from ancestors as punishment for disobedience on morality (Bos, Schaalam, &
Pryor, 2008).
There is belief that PLWHA have acquired HIV because they engaged in apparently
norm-violating behavior like promiscuity, commercial sex work, infidelity and
homosexuality. HIV-related stigma reduction interventions can seek to provide
stereotype-inconsistent information about HIV and PLWHA, and offer a safe
environment in which community members discuss their HIV stigma-related values and
beliefs (Bos, Schaalam, & Pryor, 2008), but more is needed.
The perpetrators fear certain outcomes directly related to HIV (Herek & Glunt, 1998).
This arises as a result of the fact that AIDS is regarded as a fatal condition; it is
transmissible, hence the affected person is seen as repellent, ugly or upsetting. Any
disease that is, ugly and repellent and disfiguring is stigmatized. HIV/AIDS stigma and
discrimination results from social meanings attached to AIDS. It represents the use of
disease to express attitudes toward the groups associated with it and the behaviors that
transmit it (Herek & Glunt, 1998).
23
2.1.3.6 Witchcraft
Witchcraft is the activity of performing magic to help or harm other people. It takes place
in the supernatural. There have been reports of it contributing to stigma and
discrimination. Self diagnosis and self-treatment remain widespread owing to
stigmatization. The pursuit of different therapeutic options is sometimes a result of the
problematic social complexity linked to AIDS. Witches and witchcraft remain an option
for self diagnosis of illness as well as for diagnosis by traditional healers. Commonly,
people say that HIV/AIDs hides behind witchcrafts since it is more culturally acceptable
and it avoids personal shame. People prefer to claim that they are bewitched or have
tuberculosis rather than accept that they have AIDS. Those who are afraid of witchcraft
shun those who have been bewitched (Herek & Glunt, 1998).
2.1.3.7 Vengeance
Mostly, PLWHA who feel hurt by comments and actions by other individuals of the
opposite sex try infecting them as well as others through sexual intercourse. Other people
also stigmatize and discriminate against PLWHA to settle personal vendetta (Herek &
Glunt, 1998).
2.2 Nature And Kinds Of HIV/AIDS-Related Stigma And Discrimination
HIV/AIDS-related stigmatization and discrimination take different forms and are
manifested at different societal, community and individual level and in different contexts
(UNAIDS, 2000; Malcolm, 1998). The following examples highlight where HIV/AIDSrelated stigmatization and discrimination have been most frequently documented. All the
following contexts may have social stigma which takes the form of mockery, physical
24
stigma which takes the form of isolation, shunning and abandonment, verbal stigma
which takes the form of gossip, institutional stigma which takes the form of denial of
services and loss of rights and decision making power (Campbell, 2005). Stigma can also
be internal or external. External stigma refers to the actual experience of discrimination.
Internal stigma (felt or imagined) is the shame associated with HIV/AIDS and PLWHAs
fear of being discriminated against. Internal stigma is a powerful survival mechanism
aimed at protecting oneself from external stigma and often results in behavior such as the
refusal or reluctance to disclose a positive HIV status, denial of HIV/AIDS and
willingness to accept help (Campbell, 2005).
People with HIV/AIDS may develop chronic psychotic illness that may have physical
signs of their illness, such as poor hygiene, unkempt appearances and abnormal facial
movements that will decrease their social acceptability. Even those who are completely
well of the chronic psychotic illness, behaving normally and have no mark of illness are
still treated differently. They include.
2.2.1 Institutional Stigma And Discrimination
2.2.1.1 Policy and legal stigma and discrimination
The laws, policies and administrative procedures that protect the “general population”
end up becoming discriminatory and stigmatizing (Kirp, 1992: Manuel, 1990). These
include compulsory screening and testing, compulsory notification of AIDS, restrictions
of the right to anonymity, prohibition of PLWHA from certain occupations, medical
examination, isolation, detention and compulsory treatment of infected persons.
25
In travel and migration, discriminatory practices include mandatory HIV testing for
individuals seeking work permits, individuals seeking tourist visas, declaring their HIV
sero-positive status and denial of entry to countries (Tomasevski, 1992; Gostin &
Lazzarini, 1997). Foreigners have been deported from many countries after the
authorities discovered that they are HIV-positive. Due to this, some governments have
introduced legislation to protect the rights of PLWHA to education, employment,
confidentiality, information and treatment. These legislation have been described as a
form of discrimination by neglect since it has failed to provide effective prevention,
treatment and care for those most vulnerable to HIV/AIDS and for PLWHA ( Sabatier,
1998).
2.2.1.2 Employment and workplace stigma and discrimination
The workplace is a building where people perform their jobs or work to earn salary.
There have been reports of termination and refusal of employment (Panos, 1990). Such
discriminatory practices as pre-employment screening, denial of employment to
individuals who test positive, termination of employment of PLWHA, and stigmatization
of PLWHA who are open about their sero-positive status have been reported in
developed and developing countries (Gostin & Lazzarini, 1997; Panos, 1990; Barragan,
1992; Panos, 1992; Shisam, 1993; Omanyi, 1997). There have been reports of workers
refusing to work next to those with HIV or AIDS or those perceived to be PLWHA
(Williams & Ray, 1993; Whiteside, 1993). In Zambia workplaces, people with
HIV/AIDS were ostracized, isolated and gossiped about. Affected individuals are
subjected to mental abuse. Some institutions and organizations compel their would be
employees and subjects to undergo compulsory HIV/AIDS test. Consequently, they
26
stigmatize and discriminate against them when they test positive. Dismissal from work on
grounds of sero-positive status has been noted in some countries namely Thailand,
Singapore, Malaysia and Indonesia. Hira, (1998) reported in India that most businesses
had no policy on AIDS and management has adopted the wait and see attitude-waiting to
see how many workers became infected and whether this had an impact on productivity.
Individual evidence of job loss, emotional isolation, and denial of employment on the
basis of HIV status have been reported in the media but again these are cached in
anonymity because of the need to protect the persons involved (Rosen, 1998). The
validity of these experiences becomes difficult to measure. In Nigeria, a high court judge
refused to entertain a case brought to her by an HIV-positive woman for fear of
‘spreading’ the disease in her court. In another case, a young man who tested positive in
Ibadan city of Nigeria committed suicide because he was not ready to bear the shame’.
Few companies have developed strategies to combat stigmatization and discrimination or
defend their responsibilities toward employees with HIV (Jackson & Pitts, 1996;
Bezmanlinovic, 1996).
2.2.1.3 Healthcare systems
The health care system provides medical care to all categories of people including
PLWHA. There have been many reports from healthcare settings of HIV testing without
consent, breaches of confidentiality, and denial of treatment and care (Ogola, 1990;
Masini & Mwampeta, 1993). Failure to respect confidentiality by clearly identifying
patients with HIV/AIDS, revealing sero-positive status to relatives without prior consent,
or releasing information to the media or police appear to be problems on some health
services (Panos, 1990: Bharat et al, 2001; Singh, 1991). Factors contributing to these
27
stigmatization and discriminatory response include lack of knowledge, moral attitudes,
and perception that caring for PLWHA is pointless because HIV /AIDS is incurable
(Daniel & Parker, 1993; Herek & Capitanio, 1993).
The right to health is part of the social rights that states are supposed to promote and
protect; it implies the right to receive care and to have access to adequate health services.
In this regard, the right to have access to the hospital required by the patient should be
applied without discrimination but treatment of PLWHA in the health centers does not
fully guarantee their rights. This is because they are powerless in the face of the
authorities and care providers (Daniel & Parker 1993; Herek & Capitanio 1993).
Concerning violation of professional secrecy, some care providers take pleasure in
revealing information from medical records of PLWHA. Some doctors working in
enterprise also accept, at the request of employers, to show the medical records of
patients. This generally results in the dismissal of PLWHA.
With regard to HIV testing, whatever the nature of the disease, doctors would
systematically subject patients to HIV testing. The results were either not communicated
to the person concerned or they were announced without pre or post test counseling. In
some cases the first test was not followed by confirmation tests, due to lack of money,
lack of information or simply because they did not exist (Daniel and Parker 1993; Herek
and Capitanio 1993). In Rwanda for example, there have been reports of continuous
denial of medical services and lack of care and support as manifestations of stigma from
and discrimination by healthcare providers against PLWHA (UNAIDS, 2007). Evidence
suggests that negative attitudes, beliefs, and practices of healthcare workers toward
individuals
who
are
HIV-positive,
perpetuate
28
HIV/AIDS-related
stigma
and
discrimination towards PLWHA (Blendon, 1988). Results of a study of providers in
Tamative, Madagascar, not only reported negative attitudes toward PLWHA, but also the
belief that such patients should be quarantined. This relationship between negative
attitudes and beliefs about persons infected or suspected of being infected with HIV,
when combined with fear and perceived risks of becoming HIV infected in the
workplace, could explain at least some of the overt and covert discriminatory behaviors
within the health sector (Eastham, 1991).
In a survey conducted in four Nigerian states in 2002 among some 1000 physicians,
nurses and midwives, one in ten doctors and nurses admitted to have refused to care for
or admit to a hospital, HIV/AIDS patients . Such responses are fuelled by ignorance, lack
of knowledge about HIV transmission and fear about HIV/AIDS. Research has also
shown that stigma and discrimination in hospital settings go beyond delays in treatment
and denial of care to include unwarranted referral to other facilities, segregation onwards,
labeling of patients’ beds and files, HIV testing without consent to family members,
employers, non-treating health workers, and other patients.
In 2001, the Red Cross Red Crescent (RCRC) International Conference recommended a
scaling up of all HIV/AIDS actions and launched a global campaign to fight HIV/AIDS
related stigma and discrimination. Some African leaders demonstrated their commitment
and represented their views at the Bangkok conference. For example, Former Zambian
President, Dr Kenneth Kaunda, appeared at a leadership session to discuss the issues
around VCT and the need to de-stigmatize the disease. At the end of the fifteen
International HIV and AIDS Conference held in Bangkok in 2004, Sonia Gandhi and the
29
former South African President Nelson Mandela both urged political leaders to make
stronger efforts to reduce the stigma that surrounds HIV/AIDS.
The declaration of commitment adopted by the United Nations General Special Session
on HIV/AIDS in June, 2001 states that confronting stigma and discrimination is a
prerequisite for effective prevention and care, and reaffirms that discrimination on the
grounds of one’s HIV status is a violation of human rights. These include the right to
health care, the right to freedom of speech and movement, the right to services like
education and employment, the right to confidentiality and dignity. Liberty and security
and ultimately the right to life, are real ethical issues to individuals and communities, this
is because they are linked to complex issues like sex, death, prolonged illness,
promiscuity and homosexuality. There have been reports of withheld treatment
(Panebianco, et al, 1994), non-attendance of hospital staff to patients left lying in their
beds (Ogola, 1990), HIV testing without consent, breaches of confidentiality, and denial
of hospital facilities and medications (Daniel and Parker, 1990). Many health workers are
reported to have expressed negative attitudes to PLWHA and would demonstrate a
preference not to treat them. Contributing to the above responses are ignorance and lack
of knowledge about HIV/AIDS transmission (Herek et al, 1998) and the perceived
incurability of the disease (UNAIDS, 2000). The existence of AIDS-related stigma and
discrimination in health care settings is a serious threat to HIV/AIDS prevention and care
and treatment efforts.
In summary, HIV testing without consent, denial of hospital facilities and medications,
breaches of confidentiality, refusal to treatment and care by health personnel are the main
stigmatizing and discriminatory elements in the healthcare systems. Lack of knowledge,
30
moral attitudes and perceptions that caring for PLWHA is pointless because HIV/AIDS is
incurable are the main reasons for that. Any breach of the professional and legal
obligation should be sanctioned at both the administrative and penal levels. In conclusion,
the health care facility is a place where people go to seek for improved health status. The
identification of stigma and discrimination practices at that place will help to tell the story
of PLWHA most.
2.2.1.4 HIV/AIDS programs and policies
HIV/AIDS programs and policies are designed to protect PLWHA and to help them
manage their condition better. HIV/AIDS policies and programs may inadvertently
contribute to stigmatization and discrimination by differentiating between the “general
population”, prioritizing actions to prevent HIV spreading to the former from the latter.
This approach is often justified in terms of avoiding stigmatization of “high risk
population”, since targeting such populations is believed to reinforce the association of
HIV/AIDS with marginalized groups.
However, focusing on programs for the “general population” may also reinforce the
perception that is less important to protect populations that practice “high risk” behaviors
than the “innocent and unsuspecting” general population. It may also result in
discrimination against marginalized groups, since those at greatest risk do not receive the
resources they need (Daniel & Parker, 1990).
2.2.1.5 Religious institutions
Religion is the belief in and worship of a god or gods, or any such system of belief and
worship. In Ghana, there are three main religions: Christianity, Islam and Traditional. In
31
some context, HIV/AIDS- related stigmatization and discrimination has been reinforced
by religious leaders and organizations, which have used their power and maintain the
status quo rather than to challenge negative attitudes toward marginalized groups and
PLWHA. For example, at the international Symposium Religious Health Organization
Break the Silence on HIV /AIDS, organized by the African Regional Forum of Religious
Health Organizations during the 13th International AIDS Conference in July 2000 (Singh
2001), it was noted that religious doctrines, moral and ethical positions regarding sexual
behavior, sexism and homophobia, and denial of realities of HIV/AIDS helped create the
perception that those infected have sinned and deserve their “punishment” increasing the
stigma associated with HIV/AIDS.
One of the strategies used by some churches to regain their lost moral authority is
vigorously linking sexual transgressions and AIDs with sin and immorality (Campbell,
2005). AIDS has been targeted by some religious groups in order to enhance their own
beliefs, morality and ideology. This is because sexual activity is both biological and
socially-constructed behavior which reflects and can challenge strong public and private
religious, cultural and political values. The religious approach warrants stigmatizing
people as ‘saved’ or ‘sinners’, ‘impure’ or ‘us’ or ‘them’ and it strengthens the broader
social stratifications within which stigma flourishes (Rankin; Breman; Schell; Laviwa;
Rankin, 2005) . In Nigeria, the failings of religious leaders (Christians and Muslims) to
date center around the ostracization and marginalization of PLWHA and the refusal of
the leaders to turn inward and confront their own attitudes toward the epidemic and the
social behaviors associated with the spread of HIV. The leadership interprets the
32
pandemic to be a punishment from God for the sin of the infected (Rankin; Breman;
Schell; Laviwa; Rankin, 2005).
2.2.2 Community stigma and discrimination
The community is made up of people living in one particular area who are considered as
a unit because of their common interests, background or nationality. The stigma attached
to the AIDS virus obviously has many far –reaching effects. The surrounding community
attacks or ostracizing them and the government balks at the prospect of enacting
legislation, but even if enacted, implementation becomes difficult. The mass media
unabashedly publishes incendiary lies about the disease, and the medical community does
little to combat the lies with their action. All of these create an environment extremely
unfriendly to the victims of the epidemic (Panos, 1990; Warwick, 1998).
In societies with cultural systems that place greater emphasis on individualism,
HIV/AIDS maybe perceived as the result of personal irresponsibility, and thus
individuals are blamed for contracting the infection (Warwick, 1998). In contrast, in
societies where cultural system place greater emphasis on collectivism, HIV/AIDS may
be perceived as bringing shame on the family and community (Panos 1990; Warwick
1998). The type of cultural system and where it fits along the continuum of individualism
and collectivism will therefore influence the ways in which communities respond to
HIV/AIDS and the ways in which stigmatization and discrimination are manifested.
Local cultural beliefs and explanations about disease and the causes of diseases may also
contribute to HIV/AIDS-related stigmatization and discrimination. For example, where
illness is believed to be the result of “immoral” or “improper” behavior, HIV/AIDS may
33
reinforce preexisting
stigma of those whose behavior is considered to be
‘deviant’(Warwick, 1998).
HIV/AIDS-related stigmatization and discrimination in communities is commonly
manifested in the form of blame, scapegoating, and punishment. Communities often shun
or gossip about those perceived to have HIV or AIDS. In more extreme cases, it has taken
the form of violence (Nardi & Bolton, 1991). For example, there have been reports from
many countries of attacks on men who are assumed to be gay (Public Media
Center,1995), of violence toward sex workers and street children in Brazil (Daniel &
Parker,1993; Peterson, 1990; Byrne, 1992), and of HIV/AIDS-related murders in
Columbia, India, Ethiopia, South Africa, and Thailand (Panos, 1990; AFAO, 1997). In
Sub Saharan Africa because PLWHA are labeled as the “other” by the community,
people try to secure the social structure, safety and solidarity by casting out offenders or
reaffirming societal development. For example, some studies (Panos, 1990; AFAO, 1997)
show that women will not disclose their HIV status to avoid being isolated from
participating in the sociocultural aspect of food preparation since food is regarded as an
expression to support and acceptance, or refuse to buy food from PLWHA. Other studies
(Panos, 1990; Warwick, 1998) show that family members of a person who died of
HIV/AIDS or family members who lived with PLWHA are stigmatized; therefore family
members encourage PLWHA to remain silent to avoid social restriction. In some
instances, receiving food assistance from the government also enhances a perception of
differences from other members of the community since it is assumed that only PLWHA
are offered such support in a community where almost everyone is poor and needs
support. People from highly collectivist communities are more likely to be concerned
34
with harmony and equality in the group. Stigma is more or less likely to manifest itself in
cultures with an extensive communal life stigma finds its origins in sub cultural beliefs,
religions or individually conceived causal processes.
Stigmatization in sub Saharan Africa is a stereotyping response to negative perceived
characteristics of a person or group. The stereotyped individuals, in the context of this
paper, are PLWHA, they often look, or act differently and do not fit into the societal
norms. As regards the identification of PLWHA, linking HIV/AIDS to immoral behavior,
the different languages used to describe PLWHA send clear messages. Examples are ‘he
is a walking corpse’ or ‘kakokoolo’ (scarecrow), or ‘Kamuyoola’ (was caught in a trap)
in Uganda and ‘ashawo’ (prostitute) in Nigeria (Campbell, 2005). An individual’s past
social history may also be recalled to justify why they have AIDS. PLWHA are seen as a
reflection of evil and sin, leading to powerful stigma on those who have contracted the
disease. Fear of stigma limits the efficacy of HIV-testing programs across sub Saharan
Africa because in most communities everyone knows sooner or later who visits tests
centers. For some individuals not knowing one’s sero-positive status is far preferable for
being tested. For example, a study carried out in Botswana on attitudes, practices and
human right concerns of routine VCT showed that 33% of the respondents did not go for
VCT because a positive HIV test result will force them to stop some of their sexual
practices. The belief is that it is better to suffer the disease quietly and hidden than to find
out through HIV testing, because of the stigma associated with receiving a positive test
result, in addition to the feeling that “What you don’t know can’t harm you.”
Although access to antiretroviral therapy (ART) has increased in low-and middle-income
countries, reaching potential beneficiaries has been difficult, as the PLWHA do not
35
identify themselves to the medical professionals. Individuals who were not tested for HIV
demonstrated significantly greater AIDS-related stigma ascribing greater shame, guilt and
social disapproval to PLWHA (Campbell, 2005). Campbell, 2005 has shown that many
sub Saharan Africans are reluctant to disclose their HIV status even when they have
already gone for VCT; moreover, those who do disclose it are selective in choosing their
audience due to the stigma. Campbell, 2005, reports that in a study carried out in the
Niger Delta, Nigeria, 23% of the PLWHA respondents had not disclose their status to
anyone, while 77% had not disclosed their status to their families, 22.3% disclosed it to
parents, 9.7% to siblings, 27.8 % to pastors, 6.3 % to friends, 10.4 % to family members
and 23.6 % to sexual partners (Campbell, 2005).
Fears of stigmatization, of victimization, of confidants spreading the word, of accusation,
of infidelity, and of abandonment were all noted to be barriers to disclosure. Similar
findings resulted from a study carried out in Cape Town, South Africa, by Campbell,
2005 showed that, nearly one in four participants never talked with a friend about their
HIV status. Yet a different study showed that respondents who personally knew someone
infected with HIV or AIDS tended to report less stereotypical and less discriminatory
attitudes, fewer feelings of discomfort and less intolerant attitudes. Attempts to discuss
HIV make many people withdraw or feel that the discussion should be discontinued.
Some of them come up with questions about the very existence of HIV. Evidence also
shows that people intentionally distance themselves from PLWHA (Campbell, 2005).
A study conducted in Ghana by J. E. Mills (2003), showed that PLWHA still face
psychological isolation and condemnation from their family, friends and society because
people around them are aware of their HIV status. HIV-negative community members
36
also acknowledge the avoidance, rejection, abandonment and exclusion of PLWHA.
Again, increases in social distance might result from perceptions that HIV is very severe.
Stigmatization through physical distance PLWHA reported increased physical distance in
social interactions. In a study conducted by Stutterheim (2001), some reported that if they
were to encounter a PLWHA, they would indeed maintain physical distance and actually
avoid physical contact with them. PLWHA reported stigmatizing manifestations like
blaming, negative comments and disdain occur within their communities. Gossip was the
most frequently cited manifestation among many PLWHA. PLWHA were also warned to
maintain a distance else they had themselves to blame. This occurred in the communities
during social gatherings.
In summary, government enacts legislation to protect PLWHA but the implementation of
it becomes difficult. The mass media publishes lies about HIV/AIDS but the medical
community does little to counter the lies. Family, friends, neighbors and society often
alienate, warn, avoid, reject, abandon, and exclude HIV-positive people. Due to cultural
values, HIV/AIDS is perceived as the result of personal irresponsibility and are blamed
for contracting it. HIV/ AIDS is seen as sinful, evil and shame on the family and
community. The disease is also seen as “immoral” or “improper” behavior. Communities
shun gossip and attack PLWHA. They do not even eat food prepared by them. Due to
this, members of the communities who are HIV positive remain silent to avoid social
restriction. Language plays a role in the stigmatization and discrimination of PLWHA.
Community members do not even want to know their own status for fear of the stigma
and discrimination. They are those who demonstrate significant stigma to PLWHA.
37
In conclusion, if elements in the community bring about things that are stigmatizing and
discriminatory to PLWHA, there is the need for society to have a rethink of how certain
people in the community are viewed. This is significant because the research would want
to identify how they cope with this kind of stigmatization and discrimination in their
communities.
2.2.3 Family stigma and discrimination
The family is a group of people who are related to each other by blood, marriage or
adoption. The family is the main source of care and support for PLWHA in most
developing countries (Warwick 1998; 1999; Aggleton and Work Bank, 1997). However,
negative family responses are common. Infected individuals often experience
stigmatization and discrimination in the home, and women are often more likely to be
home, and women are often more likely to be badly treated than men or children (Bharat
& Aggleton, 1999). Negative community and family responses to women with
HIV/AIDS include blame, rejection, and loss of children and home (Parker & Gilvoa
1996; Bharat & Aggleton, 1999; Hebry, 1990). Since HIV/AIDS related stigmatization
and discrimination reinforce and interact with pre-existing stigmatization and
discrimination, families may reject PLWHA not only because of their HIV status but also
because HIV/AIDS is associated with promiscuity, homosexuality, and drug use (Panos
1990; Misra 1999; Mpundu 1999; Mujeeb, 1999).
Family responses to infected individuals are heavily influenced by community
perceptions of the disease. Those families with PLWHA may fear isolation and ostracism
within the community. Consequently they may try to conceal an HIV diagnosis, which in
38
turn may cause considerable stress and depression within the family (Bharat & Aggleton,
1999). Despite the fact that the family plays an important role in providing support and
care for PLWHA, infected members may still be stigmatized and discriminated against
within the home. In this case women are reported to be more badly treated than children
and men (World Bank, 1997; Bharat & Aggleton, 1999). Management of stigmatization
within the wider community by family members may affect healthcare utilization and
even the quality of care. Families might shield affected members from the community by
keeping them within the house or by protecting them from questioning. Also fear of
rejection and stigmatization as well as discrimination within the home and local
community may prevent people living with HIV/AIDS revealing their sero-positive status
to family members (Panos, 1990). In Indonesia, Horizon reported that families in Bali
have been found to separate the household items, clothing and personal belongings of
PLWHA. Sometimes the entire family experience rejection by the wider community
(Sarana, 1999)
In many cases, HIV/AIDS-related stigma and discrimination has been extended to
families, neighbors and friends of PLWHA. This “secondary” stigmatization and
discrimination has played an important role in creating and reinforcing social isolation of
those affected by the epidemic such as the children and partners of PLWHA. PLWHA
extensively reported manifestations of HIV-related stigma and discrimination that reflect
an increase in social distance (avoidance, rejection, abandonment and social exclusion).
Many reported experiencing greater social distance in specific settings. One such setting
was the family, “I used to go to my family’s home. They would invite me, you know. I
don’t get invited anymore. It’s like I’ve been forgotten (HIV-positive Surinamese man in
39
Stutterheim, 2001). Understanding HIV-related stigma: social and psychological
process).
Yet another very relevant and important setting for many PLWHA was romantic partners.
Some PLWHA reported abandonments by their partners they were with at the time of
diagnosis (HIV-positive Antillean woman in Stutterheim, 2001). Many PLWHA also
reported stigma and discrimination through silence. Their families never mentioned or
discussed their HIV infection.
2.2.4 Individual and personal stigma and discrimination
The way in which HIV/AIDS-related stigmatization and discrimination are manifested
depends on family and social support and the degree to which people are able to be open
about such issues as their sexuality as well as their sero-positive status. In contexts where
HIV/AIDS is highly stigmatized, fear of HIV/AIDS related stigmatization and
discrimination may cause individuals to isolate themselves to the extent that they no
longer feel part of civil society and are unable to gain access to the services and support
they need (Daniel & Parker, 1993). This has been called internalized stigma. In extreme
cases, this has led to premature death through suicide (Gilmore & Sommerville, 1994;
Hasan, Farag & Elkerdawu, 1994)
Even when laws exist to protect PLWHA rights and confidentiality, few individuals are
willing to litigate for fear that this will result in disclosure of the identity and HIV status.
Given widespread negative community and family responses, many people choose not to
know or reveal their sero-positive status. Individuals who are already marginalized may
be fearful of negative or hostile reaction from others, regardless of their sero-positive
40
status, reflecting the interaction between HIV/AIDs-related and pre-existing sources of
stigma and discrimination. Fear of telling the family about their homosexuality has been
cited by HIV-related men in Mexico and Brazil as equal to the fear of revealing their
sero-positive status. Similar fears have been reported from a range of countries by sex
workers and injecting drug users (Castro ,1998a-b; Terto, 1999) even when the family
response is positive, fear of stigmatization and discrimination by the community may
mean that an individual’s sero-positive status is not revealed outside the home.
2.2.5 Traditional healers are accessible, affordable and culturally acceptable. They are
at the grass-roots level with sufferers and can provide psychological support (Campbell,
2005). As a result of this unscrupulous herbalist take advantage to deceive the
unsuspecting public that are infected and affected by the virus. Some prepare concoctions
for PLWHA under the guise of healing them. PLWHA take them into their system and it
brings other health problems to them. When people find out they are HIV positive, it
triggers the stigma and discrimination against them (Campbell, 2005).
2.3 How PLWHA Feel About The Stigma And Discrimination Against Them
Experience of discrimination and stigma often originate from the fear and perceptions of
PLWHA as immoral or living dead. They feel rejection at home, work, school, and at the
health care centers. PLWHA feel shameful, guilty, hopeless and useless. This internalized
stigma leads to withdrawal, depression, not to disclose the HIV status and prevent people
from testing, for HIV and also affect health-seeking behaviour (Stutterheim, 2011).
According to Bond, Chase and Aggleton (2002), their research conducted in Zambia
showed that in the household and the family setting stigma was manifested in the forms
41
of verbal abuse, rejection, eviction and imposed restrictions on the person. In addition,
people with AIDS were subjected to blame, bitterness, anger, denial and withdrawal of
treatment and care, sometimes leading to blatant neglect. The antithesis to this
symbolization is that of innocent person with HIV/AIDS, infants and young children,
who are commonly positioned as devoid of any blame or guilt with respect to their
infection The distinction between innocent and guilty PLWHA is underpinned by the
strong emphasis upon the association between lifestyle choices and health states that has
emerged in medical and public health discourses over the past few years.
It is further argued by Bond, Chase and Aggleton (2002), that in southeast Asia, the
AIDS discourse comprises a clear continuum of guilt and innocence with sex workers or
intravenous drug users seen as most guilty, followed by clients of sex workers, and
monogamous wives infected by their partners seen as most innocent, followed by HIVpositive children infected during pregnancy, childbirth or breast feeding.
According to the 2000 report of the Department Health in South Africa, it appears that
women who are infected are stigmatized more than men (in Policy report, 2003). Ms N.,
Personal Communication, a facilitator of an HIV/AIDS support group in Khayelitsha,
reported that they encounter problems where women are violated or rejected by
husbands, family members and friends after disclosing their HIV/AIDS status (Ms. N.
Personal Communication, 2001). She mentioned that it might seem wise not to confide in
anyone rather than risk a fearful or hostile reaction. This is supported by Evian (1991)
who reports PLWHA are often rejected by their family and friends and lose the very
people whom they need most.
42
According to Lee, Kalichman and Sikkema (2002), stigmatizing individuals are
vulnerable to feelings of self-hatred frustrated, shocked and felt guilty which can result
when they internalized society’s negative views of them. Moreover, internalized stigma
makes an individual more sensitive to both actual and anticipated rejection and
stigmatization by others, which negatively affects disclosure.
UNAIDS (2002), echoed that another effect of stigmatization is that regardless of HIV
status, employees working in HIV/AIDS programs are seen by community as HIV
positive, and discriminated against. According to people working in the field of
HIV/AIDs, it is said that the biggest hurdle to treatment of PLWHA in South Africa is
not lack of expensive medications, but fear and denial. Ms L. coordinator of the
HIV/AIDS campaign in Khayelitsha living with HIV says that fear of being stigmatized,
fear of rejection by the family and friends, and fear of discrimination from communities
is an enormous problem (McGrath, Ankrah, Schumann, Luberga and Nkumbi, 1989;
personal communication, 2003). She claims that she does not feel any physical pain but
the most pain she feels is rejection, which is going to accelerate her condition because she
is lonely and empty inside. It has been shown that the denial, stigma and discrimination
play an important role in preventing people from testing (AIDS, Bulletin, 2000).
According to Kalichman and Simbaya (2003), AIDS-related stigmas and discrimination
are another factor that probably influences seeking VCT in South Africa. Similarly,
(Chesney and Smith, 1999, in Lee, Kalichman and Sikkenna, 2002) postulated that the
stigma associated with HIV/AIDS negatively impacts people’s decisions regarding
whether and when to be testing for the virus. Furthermore, HIV-related stigma and
discrimination deters many HIV-positive people from seeking medical care and from
43
disclosing their sero-positive status to others because doing so can lead to rejection,
discrimination, hostility and physical violence (Bond, Chase & Aggleton, 2002: Herek &
Glunt, 1988).
Most of the PLWHA in Khayelitsha battle with the issue of how to handle and control the
process of disclosure (Ms L. personal communication, 2003). Lee, Kalichman &
Sikkenna (2002) echoed that the choice not to disclose one’s sero-positive status can lead
to an increased sense of isolation and psychological distress among HIV-positive people
and an increased livelihood of engaging in unsafe sexual practices.
Lee et al, (2002) conducted a study looking at the internalized stigma and discrimination
among PLWHA in Milwaukee and Madison, Wisconsin and New York City. They found
out that the majority of the sample experienced internalized stigma related to their HIV
status. They mentioned that individuals who experienced high internalized HIV stigma
were less accepting of the illness by their families and they were less likely to ever have
attended an HIV support group. They knew fewer people with HIV, and worry more
about spreading their infection to others, and HIV stigma contributed significantly to
levels of depression, anxiety and hopelessness.
In summary, PLWHA feel rejection at home, work, school and in the health centers. They
feel blamed, bitterness, anger, denial and withdrawal of treatment and care, guilty,
hopeless and useless which leads to withdrawal, depression, not to disclose their HIV
status and prevent people from testing for HIV. They feel frustrated and hate themselves
due to the stigma and discrimination. Women are the hardest hit in stigmatization and
discrimination more than men and children.
44
In conclusion, how PLWHA feel about the stigmatization and discrimination at home,
work, school and the health facility is very important to identify whether they would want
to end their lives or they do not care about the stigma and discrimination. This will help
to give appropriate recommendations.
2.3.1 Psychological feelings PLWHA go through
PLWHA feel avoided, excluded, rejected, isolated, socially ostracized, blamed, violence
on them, service denied, physically distanced, indifference, awkward social interaction,
and always being advised to conceal their status. These take place with families, in
communities, among friends and acquaintances, with sexual partners, in healthcare
settings, with respect to housing, in the financial service sector, within religious
institutions, at work, while traveling or migrating, and in educational settings (Shamos,
Hartwig, & Zindela, 2009).
HIV-related stigma and discrimination can also be felt indirectly when, for example,
PLWHA hear others talk negatively about HIV. In such cases, PLWHA are not the
targets of active discrimination but are exposed to the endorsement or acceptance of
discrimination (Black & Miles, 2002).
What determines whether one discloses or conceals one’s HIV status? Previous research
has contended that HIV status disclosure is a reasoned process whereby the perceived
costs and benefits to oneself and to others are weighed. When PLWHA consider the costs
to outweigh the benefits, concealment is more likely due to the stigma and discrimination
(Blacks & Miles, 2002). In some cases, disclosure is not a choice and PLWHA are not in
a position to as Goffman (1963) would say, ‘Pass’ as ‘normal’. Some research on the
45
psychological implications of concealment versus visible stigmas and discrimination has
demonstrated that people with concealable stigmas and discrimination experience more
anxiety, depression, and negative effect as well as lower self esteem, than people with
visible stigmas and discrimination (Frable, Platts, & Hoey, 1998), thus suggesting that
PLWHA with visible symptoms are likely better off.
On the contrary, research specific to HIV has also demonstrated a significant relationship
between visible symptoms and psychological distress (Reynolds, Neidig, Wu, Gifford, &
Holmes, 2006). It is possible that this relationship is due to the fact that PLWHA with
visible symptoms experience higher levels of stigma and discrimination than PLWHA
who can conceal their status, or because they have less control over how disclosure takes
place. Bos, Dijker & Koomen, (2007), have previously shown that the way in which
disclosures occur can impact on how target of disclosure respond to the disclosure.
Many of the HIV patients struggle with numerous social problems such as stigma,
substance abuse and depression not only from the physical health aspect, but also from
mental and social health point of view and cause numerous problems in useful activities
and interests of the patients. These problems include maintaining cohesion in friendship
and inability to concentrate. PLWHA feel withdrawn. They experience social isolation
and conflictive social interactions. That is, they are unsure whether their HIV negative
friends accept them inwardly or not. They have been shown to increase stress, resulting in
poorer overall social functioning. Comorbid psychiatric illnesses, including depression,
are common with HIV-infected patients (Kelly, Raphael, Judd, Perdices, Kernutt,
Burnett, 1998).
46
The prevalence of depression in HIV-infected clinic populations has ranged from 22% to
38%. Unemployment, lack of health insurance, HIV-related symptoms, not having a
partner, poor quality of social support, and use of non injection drugs were significant
predictors of depression in one study. Bogart L. M, Catz, Kelly J.A.(2000) reports that
patients with infection who are older than 35 years are more likely to suffer from
depression, anxiety, confusion, and fatigue, insomnia, pain , and emotional control
correlated with depression.
Adults with HIV infection and AIDS often struggle with vocational dilemmas. Unlike
acute medical conditions in which patients may return to pre disease levels of functioning
after treatment, patients with HIV infection most frequently adapt to an unpredictable
illness course. Even when physical health is stable, fear and uncertainty about how HIV
disease will affect economic, occupational, and healthcare security complicate vocational
decision making. While some leave the workforce because of the stigma and
discrimination and receive disability benefits, others remain employed to varying degrees
(Aro, Jallinoja, Henrikson, Lonnquist, 1994). Those who do not work often find their
occupational functioning limited by HIV-specific factors such as episodic illness ,fatigue,
physical and cognitive limitations, medication schedules and side effects, and frequent
medical appointment.
In summary, PLWHA feel avoided by friends and well wishers, excluded from social
gatherings, rejected and isolated from society, socially ostracized from their
communities, withdrawn from achieving self determination, social isolation from
acquaintances, blamed for contracting the virus, violence on them to prevent them from
mingling with people, service denied especially in the healthcare settings and
47
accommodation, physically distanced, indifference, awkward social interaction and
always being advised to conceal their status. These increase stress, resulting in poorer
overall social functioning, psychiatric illness (including depression). These also take
place with families, with sexual partners, in the financial service sector, within religious
institutions, at work, while traveling or migrating and in educational settings. When
others talk, PLWHA feel the stigma and discrimination indirectly by thinking the
conversation is about them. PLWHA weigh the cost of concealment before revealing
their status to people. Many of the PLWHA struggle with numerous social problems like
stigma, poverty, substance abuse and depression. While some leave the workforce
because of the stigma and discrimination and receive disability benefits, others remain
employed to varying degrees. The unemployed face HIV-specific factors such as episodic
illness, fatigue, physical and cognitive limitations, medication schedules and side effects,
and frequent medical appointment
In conclusion, psychology is the scientific study of the way the human mind works and
how it influences behaviour, or the influence of a particular person’s character on their
behavior. If the brain is free from any bad feeling, the behavior will be positive but if it is
negative the behavior will be negative. This will be significant to identify how PLWHA
cope with those psychological conditions.
2.3.2 Feeling of suicide by PLWHA
In fact stigmatization is dehumanizing and should not be allowed to take root in the
society. Discrimination can create mental agony and even result in suicide. It occurs
when an unjust distinction is made between two people resulting in unfair treatment of an
48
individual or group of people as a result of their belonging to a particular group. In
Panaji, India, a 38 year old woman from Pernem jumped to her death from the first floor
of Goa Medical College and hospital after being told that she was HIV positive. She was
afraid of the stigma (www.timesofindia.com)
Research has demonstrated that unemployed individuals generally report more
depression, anxiety, social isolation, and low self-esteem than employed individuals.
Kelly et al, (1998) found that unemployment because of stigma and discrimination was
one of the several factors associated with suicidal ideation in HIV-sero positive patients.
In a study of psychosocial vulnerability in HIV-sero positive gay men, Dickey et al
reported that younger men who lacked full-time employment were at greater risk of
psychiatric symptoms and syndrome depression. Suicide, attempted suicide, and suicidal
ideas are complex clinical issues associated with life-threatening conditions such as HIV
infection. Suicide in persons with HIV /AIDS infection has been reported in most cases
to be associated with a concomitant psychiatric disorder.
Aro et al, (1994) have it that the risk of suicide may extend to those fearful of contracting
HIV infection as well as the family and partners of those infected. Patterns of attempted
suicide and suicidal thought may differ throughout the progression of HIV infection.
There are at least two high-risk periods. That is the initial 6 months after diagnosis of
infection with HIV and the onset of physical complications of AIDS as well as the stigma
and discrimination.
According to Demi, Bakeman, Richard, Linda, Brenda, (1998), postulates that suicide is
a complex bio psychosocial outcome of depression, hopelessness, isolation and lack of
49
support. HIV infection with all its negative connotations and discrimination can be a
harbinger of future suicidal ideas or completed suicide. Several factors have been
associated with suicidal ideas among persons infected with HIV. Homosexual
orientations, partner’s HIV status, loss of an infected partner, past history of deliberate
self harm, and presence of physical symptoms have been reported as risk factors. Some of
the psychiatric variables predicting contemplated suicide include concurrent substance
abuse, past history of depression and presence of hopelessness.
Stigma and discrimination has been considered as an important variable in predicting
suicide and has important implications for India. There is sparse literature on suicide and
HIV infection in India, through Indian newspapers have often carried reports of HIV
infected persons attempting suicide either due to discrimination or a fear of it. One study
assessed suicidal ideas and history of attempted suicides in addition to depression among
51 HIV infected persons. The findings revealed persistent suicidal ideas in 14 per cent,
death wishes in 20 per cent and suicidal attempts in 8 per cent (Chandra, Ravi, Desai,
1998).
In summary, discrimination creates mental agony and can result in suicide. Due to the
stigma and discrimination, PLWHA may become unemployed which cause depression,
hopelessness, lack of support, social isolation, and lower self esteem than employed
individuals. Suicide in persons with HIV/AIDS infection has been reported in most cases
to be associated with a concomitant psychiatric disorder. Suicide takes place with family,
friends, partners and PLWHA themselves. Patterns of attempted suicide and suicidal
thoughts may differ throughout the progression of HIV infection. Homosexual
orientations, partners in HIV status, loss of an infected partner, past history of deliberate
50
self harm, and presence of physical symptoms have also be reported as risk factors to
suicidal ideation. Some of the psychiatric variables predicting suicidal ideas include
concurrent substance abuse, past history of depression and presence of hopelessness. In
conclusion, psychiatry is the part of medicine which studies mental illness and since
discrimination has been identified as creating mental agony and result in suicide, it is
important to see how PLWHA cope with feelings of suicide.
51
2.4 Coping Strategies People Living With HIV/AIDS Employ
PLWHA can attempt to mitigate the negative psychological and social impact of HIVrelated stigma and discrimination by employing coping strategies. Some coping strategies
are geared to altering the relationship between PLWHA and their environment. These
strategies are called problem-focused coping strategies. Other strategies seek to regulate
negative emotions and are called emotion-focused coping strategies.
Problem- focused coping strategies can target the self, the situation, or others, and include
strategies such as selective disclosure, compensating for the stigma and discrimination
during social interactions, avoid situations where stigmatization and discrimination is
likely (i.e. disengagement), affiliating oneself with similar others, seeking social support,
and activism. Emotion-focus strategies include downward social comparison, external
attributions, denial or prejudice minimization, distract position reappraisal, and
misidentification with the stigmatized identity (Crocker, Major, & Steele, 1999).
Understanding which coping strategies mitigate the negative consequences of HIVrelated stigmatization and discrimination better than others do would help to adopt the
right approaches to use to maintain a normal life. For example, coping strategies such as
support seeking and positive reappraisal have been found to be positively related to
psychological well-being while stigma avoidance has been found to yield greater
psychological distress (Gonzalez, Solomon, Zvalensky & Miller, 2009).
Even if one can cope adequately with stigmatizing reactions from others, it would still be
wiser to keep one’s status a secret. The greatest secret of disclosure leads to social
support. Support not only enables PLWHA to cope better with health concerns (Smiths,
52
Rossetto, & Peterson, 2008) but also buffers stress, anxiety, and depression (Lam, Naarking, & Wright, 2007). However, it is clear that the very disclosure that can generate
social support can also yield stigmatization. PLWHA must therefore take the risk of
being met with stigmatizing and discriminating reactions. Some research suggests that
PLWHA can access and employ important coping strategies that are not as readily
available to PLWHA who hide their status (Quinn, 2006). For example, people with
visible stigmas and discrimination are often in a better position to find and compare
themselves to in-group members, and they might more readily attribute negative
treatment to prejudice (Crocker, Major, & Steele, 1998).
Positive reactions of disclosure can be promoted by selecting the optimal setting, person,
and time, and that is something that PLWHA with visible symptoms are often unable to
do. Their disclosure is less likely to be voluntary (Joachin & Acora, 2000) and may
therefore be met with less understandings and support. To avoid stigmatization,
discrimination and possible losses, sero-positive individuals attempt to conceal their
status, and this causes them to be cut off from social support and needed medical social
services. They may also delay in obtaining medical care or fail to adhere adequately to
medical treatment regime once they enter care. AIDS-stigma and discrimination can also
interfere with PLWHA coping and adjustment. The psychological distress experience
may be exacerbated by self-imposed isolation and experiences with ostracism, hostility
and discrimination (Herek et al, 1998).
In their model, Miller and Kaiser (2001) contend that responses to stigma can be
voluntary or involuntary. In the sections below, focus is exclusively put on voluntary
coping responses, and, in particular, on two forms of coping, namely engagement and
53
disengagement coping. The various voluntary coping responses posited by Miller and
Kaiser (2001) has engagement coping.
2.4.1 Engagement coping
This is characterized by efforts to actively alleviate stressful circumstances, in this case,
stigmatizing reactions to PLWHA. According to Miller and Kaiser (2001), engagement
coping is geared to either increasing primary or secondary control over stressful
circumstances.
2.4.2 Primary control coping
In primary control coping, the stigmatized person seeks to change the situation in order to
increase personal control. This can be done through individual or collective problem
solving or through the regulation of emotions and the expression of those emotions.
Problem solving can be engaged in by the individual or be conducted collectively. An
individual that engages in problem solving to gain primary control over stigmatization
would likely seek to change the perceptions held by stigmatizing individuals through, for
instance, social skillfulness or by displaying stereotype disconfirming behaviors (Miller
& Kaiser, 2001). An example of this kind of coping would be when an HIV positive
person shows that not only irresponsible, promiscuous or homosexual people get HIV. It
is observed that this kind of coping is rarely used. In fact, very few participants in a study
conducted by Sutterheim (2008) are even inclined to confront people who stigmatize
them. Collective action as a form of coping was also rarely observed. Another form of
primary control coping is emotional regulation and expression. By regulating one’s
emotions and the degree to which one expresses those emotions, PLWHA are expected to
54
more easily overcome stigmatizing reactions from others and change others perceptions
of PLWHA by demonstrating stereotype disconfirming behaviors (Steele &
Aronson,1995). Very little regulation of emotions and their expressions are demonstrated.
According to Sutterheim (2008), clearly primary control coping is not commonly used by
the African, Antillean and Surinamese PLWHA in many researches.
2.4.3 Secondary control coping
Secondary Control Coping mechanisms are actively used by the HIV positive participants
in many studies. While primary control coping seeks to change the situation, secondary
control coping involves adapting to the situation. Miller and Kaiser (2001) outlines
different forms of secondary control coping. The first is distraction. Distraction involves
“engaging in cognitions or behaviors that draw attention away from the stressor” (Miller
& Kaiser, 2001, p.8), in this case stigmatizing reactions to one’s HIV status. According to
Sarah Stutterheim, Arjan, Bos, Herman, Schaalma (2008), PLWHA frequently speak of
focusing on others rather than on their own negative experiences. Some PLWHA indicate
that they seek comfort in their faith. This kind of religious coping may also be considered
a distraction in which stress-related thoughts are justified by a focus on God. One
PLWHA said, “In my loneliness, I found hope. I’ve experienced a lot and I often think I
need the strength of God to persevere- not people.” Specific portions of the Bible and the
Quran as well as other religious books help PLWHA cope very well with the
stigmatization and discrimination. Psalm 27:10 say’s, “for my father and my mother have
forsaken me, but the Lord will take me up”. Micah 7: 5-8 forbids man to put trust in
anybody but God”(Revised Standard Version,1952; 1964; 1971). The religious songs
55
sang in the various churches and at various places help PLWHA to cope with the stigma
and discrimination against them.
Another form of secondary coping described by Miller and Kaiser (2001) is cognitive
restructuring. In cognitive restructuring, the stigmatized individual changes the way he or
she thinks about stigma and discrimination and those who stigmatized. This coping
response is also very present in Sutterheim’s HIV positive samples. The interviewers
revealed that a number of PLWHA engaged in cognitive restructuring by attributing
stigmatizing reactions from others to ignorance. These kinds of attributions are termed
external attributions (Weijner, 1986). PLWHA who engaged in external attributions by
placing the onus for stigmatizing reactions on the ignorance of others also often reported
giving no heed to the negative reactions of others. In this case PLWHA have chosen to
base their personal identity and self worth on things rather than their HIV status. This is
termed disidentification. In fact, many PLWHA do not base their personal identity on
their HIV infection.
The final form of secondary control coping is acceptance. Quite a few PLWHA have
accepted the fact that people will stigmatize them. Evidently, the use of secondary control
coping in which PLWHA use distraction, cognitive restructuring and acceptance to deal
with stigmatizing situations was relatively common among the HIV positive persons
(Miller & Kaiser, 2001).
2.4.4 Disengagement coping
Unlike engagement coping in which the stigmatized person seeks to actively lessen the
stress of stigmatization by either changing the situation or changing how one deals with
56
the situation, disengagement coping is characterized by avoidance. There are three forms
of disengagement coping: denial or prejudice minimization, wishful thinking and
voluntary avoidance of stigmatizing people and situations (Miller & Kaiser, 2001).
Voluntary avoidance is very common among the PLWHA. Many PLWHA indicate that
they have disengaged from people who stigmatized them and that they purposely avoid
situations in which they expect stigmatizing reactions to their HIV status to occur.
Avoidance of stigmatizing people and situations is often accompanied by increased
identification with people who share the same stigma (Miller & Kaiser, 2001). Dealing
with stigmatizing reactions by talking not only to other PLWHA but also to other people
in their environment who are supportive is disengagement. PLWHA claim that it is the
social support of their immediate environment that helps them deal with stigmatizing
experience.
2.4.5 Selective disclosure
The last other coping strategy is selective disclosure. That is dealing with stigmatizing
reactions by becoming highly selective with respect to who they inform about their HIV
status. In this way, they are able to exercise control over the likelihood that they would be
subjected to stigmatization and discrimination (Miller & Kaiser, 2001).
Since 2000, “faith based” organizations have come to the fore in terms of the fight
against HIV/AIDS and its related stigma and discrimination. Since then, whilst some of
the religious organizations have been an integral part of the war against HIV/AIDSrelated stigma and discrimination, it has been shown that HIV/AIDS cannot simply be
equated with an individual lack of morality for several reasons. Further, many faithful
57
partners are infected by their unfaithful partners, whilst innocent girls and women are
infected through rape in and outside their homes (WCC HIV and AIDS Curriculum 6-7).
Church leaders are helping people cope with the stigma and discrimination against
PLWHA because a research conducted by Family Health International AIDS Control and
Prevention Project to implement HIV/AIDS policy, communication and training activities
for Kenyan religious leaders and members of their churches from 1994 to 1996 revealed
that HIV/AIDS had already affected at least 70 percent of local congregations (Makinwa
& O’Grady, 2010). The research also revealed that promiscuity was common even
amongst church leadership and that church going people were as sexually active and as
engaged in risky sexual behavior as non-churchgoing youth (Makinwa and O’Grady,
2010). Similarly, research carried out in Nigeria has demonstrated that most young
people who tested positive were deeply religious and take religion very seriously.
2.4.6 Finding support with NGOs
Support from civil society groups and NGOs especially those formed and run by HIV+
individuals that advocate at local and regional levels support leadership development for
persons with HIV work with religious groups to use spiritually and religiosity in positive
ways to decrease stigma and discrimination against persons with HIV through support
activities regarding media portrayal of HIV/AIDS in a positive light, publicized
exceptional examples of programs and other strategies that address the needs of persons
with HIV, support activities that extend the lessons of HIV/AIDS to other disease and
stigmatized groups.
58
2.5.7 Going public
PLWHA cope with the stigma and discrimination by engaging in education of others on
the disease, self advocacy and leadership. People with HIV have often been in the
forefront of advocacy efforts, and that voice has been enormously helpful in ensuring that
resources are available and that programs are appropriate and useful (Naidoo, 2009;
Seng Vuthy, 2007).
2.4.8 Counseling, care and support strategy by counselors
Counseling, care and support strategy by counselors help PLWHA cope with stigma. This
includes interventions aimed at the infected or affected individual or group that aim to
empower. These are in combination with educational interventions that generate a
positive effect. These reduce stress and anxiety and increase disclosure of one’s positive
status and improved community attitudes. It is argued that while people with HIV/AIDS
do get care from their family, community volunteers, and the health care providers, this
care can come with stigma. It is therefore important to educate those caring and
supporting HIV infected persons about the language they use, available resources,
possible care and support to mobilize the communities to come into action (Kidd, 2003).
PLWHA cope with the stigma by relying on legal and policy interventions since they all
aim to enforce the protection of rights of people suspected to be or people infected with
HIV/AIDS. The WHO mentions setting policy guidelines and confidentiality,
strengthening the legal framework and mandatory testing and encouraging political,
community and religious leaders to provide leadership as possible interventions for
coping. Policies on discrimination, access to prevention and care, confidentiality of care
59
and individual’s rights can make a significant impact in coping with stigma and
discrimination (WHO, 2002; Shippy & Karpiak, 2005).
In summary, there are problem solving and emotional-focused coping strategies.
Problem-focused strategies target the self, the situation, or others, and include strategies
such as selective disclosure, compensating for the stigma and discrimination during social
interactions, avoid situations where stigmatization and discrimination is likely, affiliating
oneself with similar others, seeking social support and activism. Emotional-focused
strategies include downward social comparison, external attributions, denial or prejudice
minimization, distract position reappraisal, and misidentification with the stigmatized
identity. Coping strategies can also be voluntary and involuntary. In the voluntary coping
strategies there are engagement and disengagement coping strategies.
The involuntary coping strategies are not used in the literature. In the engagement coping
strategies, there are the primary and the secondary control coping strategies. In the
primary control coping strategies, problem solving can be engaged in by the individual or
by collective action or emotional regulation and expression. An individual that engages in
problem solving to gain primary control over stigmatization and discrimination would
likely seek to change the perceptions by stigmatizing individuals through, for instance,
social skillfulness or by displaying stereotype disconfirming behaviors. An example of
this kind of coping would be when an HIV positive person shows that not only the
irresponsible, promiscuous or homosexual get HIV. Collective action as a form of coping
is rarely observed. By regulating one’s emotions and the degree to which one expresses
those emotions, PLWHA are expected to more easily overcome stigmatizing reactions
60
from others and change others perceptions of PLWHA by demonstrating stereotype
disconfirming behaviors.
PLWHA adapt to the situation. Distraction, cognitive restructuring and acceptance are the
three types of the secondary control coping strategies. Distraction involves “engaging in
cognitions or behaviors that draw attention away from the stressor (stigmatizing reactions
to one’s HIV status). PLWHA focus on others, rather than on their own negative
experiences. Some seek comfort in their faith. Cognitive restructuring involves
stigmatizing PLWHA change the way they think about the stigma and discrimination.
PLWHA attribute stigmatizing reactions from others to ignorance. In acceptance, quite a
few PLWHA have accepted the fact that people will stigmatize and discriminate against
them. The three forms of disengagement coping are denial or prejudice minimization,
wishful thinking and voluntary avoidance of stigmatizing people and situations. In
voluntary, avoidance, many PLWHA indicate that they have disengaged from people
who stigmatized and discriminated against them and that they purposively avoid
situations in which they expect stigmatizing reactions to their HIV status to occur. In
wishful thinking PLWHA wish to be healed to continue with their daily activities. They
wish the stigma is not against them. In denial, PLWHA deny having the virus and so the
stigmatization is not against them even though it does.
Other coping strategies include selective disclosure, seeking help in “faith based
organizations, support from civil society groups, engaging in self advocacy and
leadership, coping through counseling, care and support, relying on legal and policy
interventions, support from family of choice and other support groups, case management,
government support, AIDS service organizations, treatment and education workshops,
61
housing for PLWHA, religions and spiritual leaders, telephone information services and
exchange programs.
In conclusion, it is refreshing to note that despite the elements of stigma and
discrimination PLWHA have learnt to use different means to cope with their condition.
The research would want to identify how it is done using the analysis and the appropriate
recommendation for posterity.
2.4.9 Others
A number of PLWHA do not care about the stigma and discrimination against them.
They go about their normal duties without thinking of any stigma and discrimination
against them even though it happens to them.
2.5 Where And How People Living With HIV/AIDS In Accra Can Seek Redress
When Abused
The means and places PLWHA can seek redress when abused are enormous. They
include:
2.5.1 Prayer
Prayer is a communication between a worshipper and his or her object of worship. Prayer
is one of the greatest tools one can have in the world because it opens the door to a
dialogue with God. The three main religions in Ghana –Christianity, Islam and
traditional- all engage in prayer. Particularly, Christian PLWHA engage in prayer to help
them overcome their ‘storm’ when there is stigma and discrimination against them. They
believe if they engage in petition prayer, their spiritual as well as physical needs would be
62
addressed. In this case they seek redress through prayer for them to be accepted by God
(http//Catholicism.about.com/od/prayer/tp/Types_of_Prayer.htm).
2.5.2 Quotations and songs
Specific portions of the Bible is used by both Muslims, Christians and traditionalist that
indicated that whether PLWHA have been stigmatized and discriminated against in
society or not the Lord will fight for them. Vengeance is the Lord (1 Peter 3:9, RSV).
Christian PLWHA do not seek redress at all. They rely on Matthew 5:44-48 where Jesus
commanded them not to seek revenge but to bless those who curse them and do good to
those who hate them. Psalm 23:4-8 also have the Psalmist saying the Lord prepares a
table before him in the presence of his enemies. They were again commanded to pray for
those who spitefully use them and persecute them (RSV). In a famous song sang at
orthodox churches, Christians were charged to take everything to God in prayer when
their friends despite and forsake them (Asempa hymns).
2.5.3 The family
At the center of the Ghanaian society is the institution of the family. It is a group of
people affiliated by consanguinity, affinity or co-residence. Sustained through a series of
kinship networks and marriages, the family is acknowledged as the bedrock of all social
life. The family is not only the basis of Ghanaian social organizations, but is also the
main source of security of old age (emotionally and financially) and the primary or sole
caretaker for the young. The family is the basic unit of production and distribution and
serves as the main agent for social control (Van de Walle & Meekers, 1994). The head of
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the nuclear family is the father. PLWHA can seek redress with the family if any of the
members of the nuclear family stigmatizes and discriminates against any PLWHA.
The extended family refers to grand parents, uncles, aunts, and cousins whether they live
together within the same household or not. If the father does not exist, the uncles and
grandparents take charge of that role. This means it is extending to the extended family.
The last resort for the seeking of redress in the extended family is the head of the
extended family (“Abusua Panin” as in the Akan dialect).
In general, Ghanaians emphasize communal values such as family, respect for the
elderly, honoring traditional rulers, and the importance of dignity and proper social
conduct. A tribal chief is the leader of a tribal society or chiefdom. PLWHA seek redress
with their tribal or local chief as well as opinion leaders when abused by members of the
community. The family of origin is not always willing or able to provide the support
necessary for an individual, therefore establishing a family of choice often becomes
necessary. This can include immediate family members. However, it can be expanded to
include co-workers, friends and partners (Prachakul, Grant, Pryor, Keltner, Raper, 2009).
Siblings, friends, mothers, children, and fathers provide the most quantitative support to
PLWHA. This process requires effective communication, therefore, PLWHA are
encouraged to be the following with their support system: specific, positive, realistic,
appreciative and supportive (Prachakul et al, 2009). Making a point of showing
appreciation for the actions provided by the support system creates a healthy and efficient
setting. These support systems serve emotional needs of the individual, especially when
dealing with negative social responses such as fear, ignorance, discrimination or the
general social stigma (Shippy & Karpiak, 2005).
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2.5.4
Ghana police service
Any person living with HIV/AIDS that has been treated violently can go to the Police to
make a report. The Ghana Police Service as it is now called has its motto “service with
integrity”. The functions as stated in the Police Service Act, 1970 (Act 350) are crime
detection and prevention, apprehension (arrest) and prosecution of offenders,
maintenance of law and order and due enforcement of the law.
It is its Domestic Violence and Victim Support Unit (DOVVSU) that deals with domestic
issues and for that matter issues concerning PLWHA. Established out of the Women and
Juvenile Unit of the Ghana Police Service in October 1998, DOVVSU deals in issues in
this form physical abuse (assault), sexual abuse (rape, defilement, incest),
emotional/psychological abuse (threats to kill, verbal insults, humiliation), socioeconomic abuse (denial of work, refusal to take care of wards) and harmful traditional
practices (widowhood practices, female Genital Mutilation practices)
Other services provided by DOVVSU include providing counseling services free of
charge to people which PLWHA victims can also take advantage of. DOVVSU also has
Social Workers attached to the unit who deal with matters concerning non-maintenance
custody and marital issues. Orphaned PLWHA can be helped here. DOVVSU in addition,
do referrals of victims for the necessary support services. Often victims report to the unit
as the last resort and present with a lot of needs such as medical, socio-economic, legal
and shelter.
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HOW CASES ARE HANDLED
Step 1: complaints (including that of PLWHA) are received at a secure and private charge
office
Step 2: there is a station officer supervised by superintendent Police Officers. They assign
cases to investigators and a police medical form is issued. Cases are then referred for
legal AID/FIDA and counseling by department of Social Welfare on non-maintenance
cases like shelter, skill training, medical and educational service
Step 3: After case is investigated, case is sent to court based on complainant’s willingness
to have case prosecuted except in case of sexual offences, child related cases, and serious
assault cases where suspects are prosecuted straight away as there is no option for bail.
Cases not sent to court are also referred for counseling or legal AID depending on needs
of complainant. PLWHA can take advantage of that to seek redress when abused (Ghana
Police, 2009).
2.5.5 The Commission of Human Rights and Administrative Justice (CHRAJ)
Until the coming into force of the 1992 constitution of Ghana, the office of the
Ombudsman created by the National Liberation Committee that ruled Ghana from 19661969 to deal solely with administrative Justice, was to forestall the bitter experiences
such as arbitrary arrest, imprisonment without trial, and erosion of judicial independence
Ghanaians suffered under the Nkrumah regime. The 1979 Third republican constitution
also provided for the office of an Ombudsman and was also charged to deal with
administrative justice, under the Ombudsman Act 400 (1980).
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CHRAJ, which succeeded the Ombudsman, however, was charged with two additional
responsibilities. That is, promotion of Human Rights and anti-corruption. CHRAJ is a
Human Rights Organization that was established by the Government of Ghana by an Act
of Parliament (Act 456) under the constitution of the Republic of Ghana, 1992.
CHRAJ exists to protect fundamental human rights and to ensure governance for every
person in Ghana including PLWHA. The Commission was given a broad mandate to
achieve this mission by the 1992 constitution of Ghana and by its enabling Act 456 in
1992.
The commission’s mandate is in threefold: A national human rights institution, An
Ombudsman; an agency which ensures administrative justice and an anti-corruption
agency for the public sector. For the purposes of the study, the research will focus on the
human rights mandate.
The commission has the mandate to protect universal human rights and freedoms,
especially, those vested in the 1992 constitution, including civil, economic, social, and
cultural rights, can be found in article 218 (a), (c) and (f) of the 1992 constitution and
section 7 (a), (c) and (g) of the CHRAJ Act.
2.5.5.1 Human rights mandate
The commission’s human rights functions can be divided into two categories: Promotion
and prevention, Protection and enforcement. In the promotion and prevention, it deepens
the culture of respect for human rights in Ghana through its research and monitoring
activities. In the protection and enforcement, CHRAJ investigates complaints of
violations of fundamental human and formal hearings as well as carries out special
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investigation into human rights abuses that are systemic or cultural in Ghana. Any person
living with HIV/AIDS who feels cheated on his/her rights can seek redress with CHRAJ.
2.5.6
The courts system
Access to justice is vital to the very survival of democracy, rule of law and human rights.
The 1992 constitution of Ghana established an independent judiciary (Chapter 11, Article
127 (1-7). The entire court system consists of two levels. These are Superior courts which
comprises the supreme courts on one hand and the appeals court, the high court and the
regional tribunal on the other hand (126 (i) a (i), ii, iii). The lower courts however include
circuit courts, circuit tribunals and community tribunals and other lower courts as
parliament may by law established (Act 126 (i) (b)). The Supreme and high Court
exercises the Supervisory, Appellate and Concurrent jurisdiction.
2.5.6.1 Court of appeal.
Fundamentally the court of Appeal has only one jurisdiction that is to entertain appeals.
PLWHA can go to the court of Appeal to seek redress when discrimination against them
is wrongfully judged.
2.5.6.2 High court.
The high court has original jurisdiction over all civil cases above GH¢10,000. This
includes cases such as defamation, declaration of title, breach of contract etc. The high
court shares concurrent jurisdiction with the Supreme Court in determining issues
concerning fundamental human rights. Any person living with HIV/AIDS who has been
defamed can seek redress here.
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Appellate jurisdiction: It has appellate jurisdiction over both civil and criminal matters
commenced at the district magistrate court to which a party is dissatisfied. Any civil case
PLWHA have can be taken to the high court.
Exclusive jurisdiction: It is the only court that acts as court of first instance to determine a
matter relating to company law (commercial court). It is the only court to determine
matters relation to piracy. It is the only court which can entertain interlocutory
application in matters affecting chieftaincy. It is the only court which can try a case of
murder, treason, robbery and all other first degree felonies.
2.5.6.3 The circuit, district and regional courts have both civil and criminal
jurisdiction that can be of help to PLWHA when abused. Negligence, declaration of titles,
divorce, custody of children etc. it deals with tort: it is a minor case between the citizens
of Ghana. The case of PLWHA husband and wife can be dealt with here. Stealing, fraud,
embezzlement, impersonation etc provided the value of these cases is not below
GH¢6,000. Criminal case is between the state and the individual (PLWHA).
2.5.6.4 Human Rights jurisdiction of the courts. The constitution of Ghana,1992 has
vested in the High Court and the supreme Court original jurisdiction in the determination
of any matter relating to the enforcement of fundamental Human Rights and freedoms
guaranteed, like that of PLWHA (article 33 :1-5). Clause 1 of Article 33 specifically
mentions the high court as where one (including PLWHA) may first seek redress for a
breach or abuse of one’s rights. Article 33(2) further gives orders or writs that could be
used by the high court, e.g. Habeas Corpus, Centiorari, Mandamus, Prohibition and Quo
Warranto as it may consider appropriate for the purpose of ensuring or securing the
69
enforcement of any of the provisions on the fundamental Human Rights and freedoms of
the individuals. A provision is further made for an aggrieved person to appeal to the court
of Appeal with right of a further appeal to the Supreme Court (Act 33(3).
2.5.6.5 Operations of the court system
The process of taking legal action in a civil matter which PLWHA can take advantage of
comprises the following:

Issue of a writ of summons, petition, originating summons or originating notice of
motions.

Filing of a statement of claim by the plaintiff (PLWHA)

A writ must contain an endorsement stating the nature of the claim or relief or
remedy sort in the action

A writ of summons must be served personally on the defendants

Where personal service of a writ cannot be effected after three or more attempts,
the court may make an order for substituted service by serving the defendant(s)
through a registered letter, posting the writ on a notice board at court premises.

A defendant who has been duly served with a writ of summons and statement of
claim is required to enter an appearance within 8 days of service by filling a
notice of appearance.
2.5.6.6 Promotion/protection of human rights using the court systems
The Ghana court system, though has its own problems, can rightly be lauded as helping
to promote human rights through its processes and procedures. The right to fair trial as
70
provided for in the constitution is generally respected by the courts whether one is living
with HIV/AIDS or not. Accused persons are presumed innocent until the contrary is
proved. Trials are public and defendants have a right to be present, to be represented by
an attorney (at public expense if necessary) and to cross examine witnesses. The Habeas
Corpus procedure has been successfully enforced, although it is limited in its use.

The court system in Ghana has increased access to justice by way of promoting
Alternative Dispute resolution (ADR) to divert the numerous cases from the
courts. The judiciary has done this by attempting to resolve cases in out-of-court
settlements at the beginning of each legal term. Many magistrates, lawyers and
judges have been trained in ADR technique which PLWHA can take advantage
of.

The adoption of the jury system in certain cases also helps to safeguard the rights
of individuals accused of certain offences. The jury system safeguard citizens
against arbitrary law determine the guilt of the accused and accuser (PLWHA).

The availability of a Juvenile Justice system in Ghana helps in the promotion of
Juvenile rights and avoids the treatment of Juveniles under the same conditions as
adults. The juvenile justice Act of 2003 (Act 653) seeks to protect the rights of
juveniles to ensure an appropriate and individual response to Juvenile offenders,
and to judge and treat them in a manner different from adults. The act empowers
the Chief Justice to designate a district as a Juvenile Court. Children living with
the virus can seek redress when abused.

The right to Appeal. An appeal is based on a claim that one or more errors of law
or procedure were made during investigation, rest or trial process.
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
Establishment of human rights courts, the fast track court and the creation of new
division of High Court with re-design procedures help at reducing delays in the
administrative Justice

The 1992 constitution, Article 33(2) indicates such directions or orders which the
courts may employ as it may consider appropriate in the promotion of
fundamental Human Rights and freedoms. Among them for the purposes of this
study are
Quo Warranto. This means preventing a specific person from performing
a function of a public nature which he or she has usurped.
Respondeat Superior. This is compensation claim by an individual
against the state. If PLWHA win cases against the state, this order is
applied.
Writ of execution. This usually follows a court judgment. It is a process
by which a judgment for money is enforced. The court directs that the
defendant’s property saving account or car be sold or seized. This can be
applicable between an employer and PLWHA.
Attachment. A writ of attachment is a court order used to force obedience
to another order or adjustment of the court
Mandado de seguranga. A wider form of protection of rights not covered
by habeas corpus, in respect of which the Supreme Court is competent.
Mandado de injuncao. A special individual complaint directed against
cases of negligence by the legislature. A PLWHA can go to court
compelling the legislature to be more careful with laws for PLWHA.
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Habeas data. This is a sub form of habeas corpus. It is a constitutional
guarantee of a personal decision about information concerning one’s self,
in essence the protection of personal data including confidential status of
PLWHA.
Certiorary. The right of a high court to resolve a dispute concerning the
jurisdiction of a lower court. If PLWHA are not happy with a judgment
when abused they can apply this one.
2.5.7
Seeking redress with NGO
The Ghana Legal Aid Board also plays an important role in the judicial system by
providing representation to be poor. Those living with HIV/AIDS who are poor are not
left out. Nongovernmental Organization such as FIDA-Ghana also provides Para legal
services.
Conclusion
It is very disheartening to note that PLWHA are being stigmatized and discriminated
against in a wide range of areas. Due to this, some feel rejected and isolated while the rest
feel like committing suicide. However, it is refreshing to note that PLWHA have a wide
range of areas with which they cope with the stigma and discrimination as well as
seeking redress.
This chapter has helped to identify the sources of stigma and discrimination which have
the pre-existing sources of stigma and discrimination. This has focused on sexuality,
gender, class, race and ethnicity, fear of contagion of the disease and witchcraft. It has
helped to also identify the kinds of stigma and discrimination in the family, community,
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policy and programs, healthcare systems, employment and workplace, religious
institutions and the individual contexts. These have been separated in various studies but
this research has brought them under one umbrella. This research has also brought to the
fore where PLWHA can seek redress, how they feel and how they cope with the stigma
and discrimination against them. These have not been found together in other studies.
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CHAPTER THREE
METHODOLOGY
3.1 Introduction
This chapter presents the Research Method, Population, Study Area, Sample and
Sampling Procedures, Data Collection Procedures and Methods of Data Analysis.
3.2 Research Method
The research method for the study is a descriptive case study using a qualitative
approach.
3.2.1 Narrative research
According to Schwardt, (2007: 204), narrative inquiry is the interdisciplinary study of the
activities involved in generating and analysing stories of life experience (e.g. histories,
narrative interviews, journals, diaries, memoirs, autobiographies, biographies) and
reporting that kind of research. This methodology is how to investigate and collect the
data that attempts to explain the lives of individuals, the collection of individuals’ stories
of their experiences and meaning of those experiences and then understand them. This
study aims at presenting the experiences of stigma and discrimination against PLWHA
currently in Greater Accra. Using the narrative inquiry is ideal since it will help tell the
stories of PLWHA in detail.
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3.2.2 Qualitative research
Merriam (2007), quotes Patton (1982: 7) as explaining: “-Qualitative research is an effort
to understand situations in their uniqueness as part of a particular context and the
interactions, beliefs, attitudes, motivations and culture there. This understanding is an end
in itself, so that it is not attempting to predict what may happen in future necessarily, but
to understand the nature of that setting- what it means for participants to be in that
setting, what their lives are like, what’s going on for them, what their meanings are, what
the world looks like in that particular setting - and in the analysis to be able to
communicate that faithfully to others who are interested in that setting…That analysis
strives for depth of understanding-”. The research is intended to narrate the experiences
PLWHA go through on a daily bases. Using the qualitative study is ideal. The approach
is often applied to social science and educational research (Alhassan, 2007). This is
because it is not involved in assigning numbers to variables but narratives. Qualitative
research focuses on understandings and meanings through verbal narratives, observation
and artifacts (Adentwi & Amartei, 2009) .The proposed study therefore seeks to describe
the kinds and sources of stigma People Living with HIV/AIDS go through. It also
indicates how they feel and cope by presenting their views. It also seeks to present the
views on how they respond to such stigma on them including how they seek redress. This
cannot be studied using the quantitative type of research which is most often applied to
pure science and involves assigning numbers to variables with a larger population
sample. The research is not also on how often they are stigmatized and it is not on a likert
scale on how intensely they suffer abuse but the research wants to get the people’s story
and examine those stories in more depth.
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3.2.3 Case study
Since a case study involves critical studies of an aspect of a problem-, (Alhassan: 2007),
the study will involve an intensive investigation on the stigma on six PLWHA. The
greatest strength of the case study method which the researcher would use is that it will
allow the researcher to interact with the PLWHA to obtain an in-depth description of the
stigma in the selected suburbs in Accra.
3.3 The Study Area
The areas chosen for this study were McCarthy Hill, Weija, Osu, La, Teshie, and Nungua
in the Ga South Municipal, Accra Metropolitan and Ledzokuku Krowor Municipal
Assemblies of the Greater Accra region of Ghana. These are part of the suburbs of the
capital of Ghana. The primacy of Accra as an administrative, educational, industrial and
commercial centre attracts people all over Ghana including PLWHA. It continuous to be
the major force for rapid population growth, with migration (including PLWHA)
contributing to over 35% of the population increases. The places were chosen because
they are the places that PLWHA could be located. The PLWHA lived in those suburbs in
Accra.
Osu is located about 3 km north of the Christianborg Castle, a former Danish colonial
fort, the seat of government (http//www.travel-to-discoverghana.com/osu-oxfordstreet.html). It is located in the Central Business district of Accra central. Osu is noted for
its busy commercial, restaurant and nightlife activities and also houses, numerous offices
and embassies that serve people including PLWHA. The main thoroughfare,
Cantonments Ring Road (colloquially known as Oxford Street) features large
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supermarkets and appliance shops, and is renowned for its food joints and lively nightlife.
It has the popular Police hospital which offers services to PLWHA.
La is located east of the Christianborg Castle, and also situated in the La Dadekotopon
constituency and the Kpeshie sub metro. La is noted for its commercial activities,
restaurants and night life that serve people including PLWHA. It is noted for its famous
beach and hotel and the prestigious International Trade Fair Site which makes La to
accommodate people of all walks of life including People Living with HIV/AIDS. There
is the well known La General Hospital which provides treatment to PLWHA. It is on
record to have been the only hospital in Ghana that the 44th President of the USA (Barack
Obama) visited during his visit in, 2009 to interact with PLWHA.
Teshie is located in the West of Accra in the Ledzokuku Krowor Municipal Assembly.
PLWHA go to the LEKMA hospital for their treatment.
Nungua is located in the West of Accra in the Ledzokuku Krowor Municipal Assembly.
The place is conducive for all manner of people including people living with HIV/AIDS.
PLWHA attends hospital at the neighboring suburbs like Teshie and La.
Weija is located east of Accra in the Ga South Municipality. From Winneba to Accra, the
third suburb to meet is Weija after Bortianor and Tetegu. People living with HIV/AIDS
attend hospital at the Ga South Municipal Hospital (Akawe). McCarthy Hill is located
north of Weija. PLWHA prefer attending hospital at Akawe.
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3.4 Population
According to O’Leary (2004) population is the total membership of a defined class of
people, objects, or events. In research, population means all the members, individuals or
cases of target of the study. This target is normally determined by the purpose of the
study (Adentwi & Amartei, 2009). Given this definition, the population for the proposed
study would consist of PLWHA in selected suburbs in Accra. According to the 2000
National Population and Housing Census, Accra has a population of 1,659,139. It is
difficult to give the exact number of PLWHA in the Accra Metro. But the estimated
national figure is 272,780 with 25,666 being children (Ghana AIDS Commission, 2010).
The prevalence rate for the Greater Accra region is 3.45 % in 2006, 3.0 % in 2008 and
3.2 % in 2010 (Ohene-Sakyi et al: 2010). Finding 3.2 % of 1,659,139 amounts to 53,092.
That is the estimated number of People Living in Accra.
3.5 Sampling And Sampling Techniques
The purposive and the snowball sampling techniques were used for this study.
3.5.1 Purposive sampling
According to Schwardt, 2007 purposive sampling targets a particular group of people.
When the desired population for the study is rare or very difficult to locate and recruit for
a study, purposive sampling may be the only option. Again the researcher will use his
own judgement to select population members whom he feels will give him the desired or
accurate information (Adentwi & Amartei, 2009). According to Alhassan (2006) the
objective of the investigation decides the sample members as it selects only those
variables that relate to the objective of the study. The objective of this research is to
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present the views of PLWHA on how they feel and cope with the sources and kinds of
stigma against them in some suburbs in Accra. Those places that the PLWHA were
located were purposively chosen to reflect the study.
3.5.2 Snowball sampling
Further, the Snowball technique of the non probability sampling was used to identify the
respondents for the research work to be conducted. This method also known as
judgmental involves the selection of a group from the population on the basis of available
information presumed to adequately represent the total population (Alhassan, 2006). One
Person Living with HIV/AIDS directed the researcher to other People Living with
HIV/AIDS in the various localities for the research work to be conducted. This technique
has been preferred because other methods like the simple or systematic random are not
practical when it is difficult to identify all the PLWHA in Accra. HIV/AIDS is also a
secretive disease. Since people do not want to associate themselves with PLWHA it was
difficult to use other methods like the simple and systematic sampling techniques.
The researcher chose a sample of six out of the whole population. The reason for
choosing this sample size was because of apparent ease of data collection in presenting
the views of the respondents. The researcher knew one person Living with HIV/AIDS
who linked him to the other respondents. It was not easy even with that as the
respondents feared being exposed as having HIV/AIDS. However, confidentiality was
assured.
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3.6 Data Collection Procedure
The interview is preferred because the information needed cannot be directly observed. It
tried to find out why PLWHA have been stigmatized and discriminated against and the
kinds of stigma they faced. The interview schedule also tried to find out how they cope
and feel with the stigma and discrimination against them. Thirty-five open ended and
flexible questions were used in the interview schedule on PLWHA. According to
Alhassan (2007) even where pre-planned questions are used the presentation may be
altered to suit the situation and the subjects. A flexible question is one in which the
respondent has a wide range of options. It encourages the interviewee to talk freely. The
researcher employed the face-to-face interview. By this, the researcher met and
conducted the interview on the respondents on a face to face basis. After the respondents
were identified, the researcher met each one of them on three separate times throughout
the data collection period before the research was conducted. The interview was
conducted over snacks in a free environment. The respondents chose areas that were
conducive to them and they spoke freely without intimidation. The interviews did not
happen at one place but different places, and each lasted for one hour. As the interview
was taking place, there was a recorder used to record the information. The researcher also
wrote down what was being said by PLWHA. A copy of the interview questions are in
appendix A.
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3.7 Data Analysis
Data gathered through the interview schedule was analyzed using descriptive means since
the research was a qualitative one. Data was transcribed verbatim from the audio-recorder
as well as from the note. Each respondent’s views were coded under themes like kinds of
stigma and discrimination, sources of stigma and discrimination, how PLWHA feel and
cope and how they seek redress. Data analysis presented narratives of each person’s story
of the distribution of the characteristics of respondents. Common themes and anomalies
of the research were found in the research. The researcher interpreted the data as it was
presented using descriptive means to answer and examine how PLWHA feel, cope and
respond, as well as the kinds and sources of stigma on them.
3.8. Ethical Considerations
An introductory letter from the Department of Social Studies Education (UEW) ,was sent
to the Ghana AIDS Commission to seek permission and information on how and where
PLWHA could be located. The purpose of the research and its possible benefits of the
findings to the Commission were discussed with the public relation officer.
Permission and advice on how to approach the PLWHA were sought. Due to the sensitive
nature of the issues involving PLWHA it was not prudent to directly contact them for
information. In the interview schedule the researcher was mindful of distorted
information by the interviewees and the types of questions to be asked. This was done by
asking the appropriate follow up questions. Questions that were not directly linked to the
research were avoided. The real names of the PLWHA interviewed were not used in the
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final write up. This was to protect them from the public. They already have problems and
the researcher was not to add up to it. They were vulnerable to stigma and discrimination.
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CHAPTER FOUR
PRESENTATION OF DATA AND ANALYSIS
4.0 Introduction
Millions of people have died of AIDS, with over 15 % of these from developing countries
since the emergence of this epidemic. Sub-Saharan Africa alone accounts for 25 million
people living with HIV/AIDS (Abudu, 2007). Assessment of the data in this research
suggests that HIV/AIDS is a highly stigmatized and discriminated disease. Comments
from PLWHA saw them as people who are immoral, dangerous and should be isolated.
Local name sought to give HIV/AIDS a bad name generally, tagging it as morally
resonant and disgraceful disease. These negative attitudes held true regardless of the
gender of the PLWHA. There remains an unacceptable high level of stigmatization and
discrimination against PLWHA in the selected suburbs in Accra, largely due to continued
misconception about the HIV/AIDS epidemic.
In all, six People Living With HIV/AIDS were interviewed for this study. They included
two females and four males each from Teshie, Nungua, La, Osu, MacCarthy Hill and
Weija suburbs of Accra. They are Juliana, Kofi, Vera, Richmond, Kenneth and Ebenezer.
These are pseudonyms.
4.0.1 Introduction to the respondents
1. Juliana was a 42-year-old housewife staying at MacCarthy Hill with her husband and
her two children. She was a Christian and middle school leaving certificate graduate. She
said she gained knowledge of her infection in 2008 while receiving prenatal care. She
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said she was benefitting from the government’s policy on free maternal healthcare. As
part of the prenatal care, she was asked to undergo non- compulsory HIV test which
resulted that she was positive to the virus. She was put on prophylaxis treatment and that
prevented her child from being infected. Juliana went to inform her husband about her
status so that he would also go for testing. Since then, the husband had refused to have
anything to do with her even though he cuddles the babies. She said the husband comes
home at 10:00 pm and leaves at 5:30am without talking to her. She said that sexual
intimacy was non-existent.
2. Kofi was a 36-year-old unemployed Christian man staying at Osu. He had no child and
was a graduate from a polytechnic. He kept falling sick and was initially going for the
over the counter drugs until some rashes developed on his hands. As his condition
worsened, he was taken to the hospital. As part of the diagnosis, a non-compulsory HIV
test was ran on him. He tested positive to the virus. He reported that his first reaction was
to cry as a baby for more than thirty minutes, and he tried to kick anything he laid his legs
on. He said he did that because he thought he was going to die. Personnel at the
Voluntary Counselling and Testing (VCT) centre consoled him. They also assured him of
life equal to those who were not infected as long as his maker wanted him to live on
earth. He was advised to take his medication seriously.
According to Kofi, he had been practising chastity until he was twenty five years in the
year 2000. Since he was the youngest and only male among four sisters, the family
decided to organize a grand birthday party for him. He said a few of his lady friends who
attended the party, as well as his sisters, decided to give him a lady as a birthday present.
This lady worked in one of the financial institutions in Accra. They failed to check on the
85
background of the lady. That night, since he decided to spend it with the lady in his own
room given to him by his father, it was like a honeymoon for him. That spelt doom for
Kofi.
3. Vera is a 32-year-old married woman with three children. She operated a ‘chop bar’ at
Spintex Road, north of Teshie. She had been married for the past 12 years. She is a
Christian and a senior high school graduate. Her husband developed skin rashes and was
referred to the hospital by the chemical seller. He was counselled to take an HIV/AIDS
test which turned out to be positive. He was advised to bring the wife (Vera) to also be
tested for her status. This is to let them live a positive life afterwards and manage their
condition. The wife while at home, fumed and sworn heaven and earth that she would by
all means and at all cost leave the marriage if she tested negative. The test ran on her was
positive, and she was to live with the virus. She said she cried all day and got angry with
the man for bringing her HIV. She decided to spend the night at the hospital because she
thought she was going to die sometime soon. She believed that it was better she died
there to be taken care of by the nurses than go home without any care. She was restrained
by the health workers. Much counselling took place, and they were advised never to
engage in extra marital affair, especially the man. Subsequently, they were made to write
their life experiences that involved risky activities in a book for future reference. Their
children were brought to the hospital for testing, it was the eight-year-old second born
that was positive to the virus. Vera said the following month in January 2011, she learnt
that the husband had long kept a mistress in their vicinity. This made her to advise the
husband to heed the counselling by the medical officer, but the man did not heed it. He
rather assaulted her. He has left the home for Vera.
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According to Vera, the husband did not “perform his duties to her again” but went out
with divorcees. Currently, Vera said the man was with a woman who was also separated
with the husband. The woman sponsored his children’s education and he had gone to stay
with this woman. Vera said she decided to confront her husband about his immoral and
criminal behaviour of spreading the virus when he came home one day, but the man beat
her severely.
4. Richmond is a 35-year-old long distant driver with a wife and a child. He developed
skin rashes on his hands and chest. He was advised to go to the hospital after an over-thecounter prescription had failed to heal him. With his consent, a diagnostic HIV test was
ran on him. He tested positive for the virus, and since 2009 he had been living with it. He
was calm when he heard the news. He was later counselled to bring his wife to also
undergo voluntary counselling and testing (VCT). Richmond informed the wife and the
woman decided to leave the matrimonial home to her parents in the Brong Ahafo Region.
5. Kenneth is a 52-year-old Christian returnee from the USA and lives in Weija. He had
three older children and was separated from the wife. He lived with two of his children
and a sister. In 2010, he developed skin rashes all over his body and went to the hospital
for treatment but was referred for tests including a diagnostic HIV/AIDS test. He was
positive with the virus. He was advised to bring someone he could confide in who would
monitor him in the taking of anti retroviral drugs. This was because the drugs had some
side effects which included reactions synonymous to high fever and hyper activeness.
Kenneth trusted his sister so much that he took her to the hospital and confided in her.
The sister went home later and broadcast the secret to the two sons who were away at
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boarding school. The children visited their father and asked him to confirm the story, but
he denied it for fear of being stigmatized. Kenneth responded by attacking the sister who
also reported the matter to the Domestic Violence and Victim Support Unit (DOVVSU).
DOVVSU could only investigate the assault case, but the stigmatization and
discrimination continued to spread in the family. According to Kenneth, currently it is
only one child who comes close to him. The rest had distance themselves from him.
6. Ebenezer is a 29-year-old Christian who taught in a private school. He lived at
Nungua. He learnt he was infected with the virus in January, 2010, when he felt dizzy for
three continuous days and had developed some rashes on his face. He went to the hospital
and was counselled to get a diagnostic HIV test. It confirmed he was infected. He felt
disappointed and cried aloud for a while. He said he had not been promiscuous and did
not understand why he should be infected with the virus. The nurses later consoled him
and assured him of longer life as long as the Almighty God would want him to be. He
was advised to take his medication seriously in order not to reduce in size and weight.
Since he had not been immoral, Ebenezer was prepared to share his condition with
anybody he deemed necessary. He said because he was receiving medication at the
hospital every month, and he did not want to go to school late without permission. Owing
to this, he informed his employers about his condition so that they would understand any
time he was late. That spelt his doom. A meeting was convened later by the proprietress
and the headmaster. They handed him a termination of appointment letter. A lot of
excuses were given. Some include ethnicity.
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4.1 Sources Of Stigmatization And Discrimination Against PLWHA
The ideas presented are related to the pre-existing sources of stigma and discrimination
against PLWHA. It was the reason that triggered the stigma and discrimination and
negative perception people had about PLWHA. People already had the idea that people
who were promiscuous were the ones infected with HIV, so there was no need getting
close to them, hence the stigma. Others thought HIV was a woman’s disease since it was
mostly women that practiced prostitution. Women were vectors. Men’s preference for
multiple sexual partners also accounted for them being isolated when infected with
HIV/AIDS. Those who isolated PLWHA think having multiple sexual partners is a thing
of the past. Those who engage in it and contract HIV/AIDS should be shunned.
In ethnicity, minority population groups like gay and other ethnic groups were blamed for
the virus since they were stereotyped. In class, the poor, homeless, landless and jobless
were also blamed for the virus, hence the stigma. People thought those who were poor
and jobless engaged in all sorts of activities to survive so they were vulnerable to the
HIV/AIDS. Thus those get infected with HIV/AIDS are stigmatized and discriminated
against. They lose opportunities and have lower level of resources. It makes them worse
off in life. As a result of seeking help to survive, they tell people of their conditions who
also end up isolating them, thereby bringing more stigma and discrimination.
People feared they would contract HIV when they came close to PLWHA. They therefore
isolated them. In witchcraft, some societies thought HIV was a punishment from God.
When God was angry with you and left you, it gave way to all forms of attack including
witchcraft. In effect, HIV was transmitted by witches and wizards.
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4.1.1 Sexuality
Four of the respondents experienced the stigma and discrimination through sexuality.
Those who stigmatized and isolated them thought they got infected through heterosexual
contact. In this case they should be responsible for their own action. Two of the
respondents (Juliana and Richmond) said they were thought to have practised extramarital affair and since the value system in their societies prescribed that they should
practise faithfulness to their spouses. That was why they experienced the stigma and
discrimination. Another two of the respondents (Kofi and Ebenezer) said they were
presumed of being promiscuous and should be responsible for their own action. They said
the stigma and discrimination was against them because those who stigmatized them said
they should be responsible for their promiscuity. They were expected to stay away from
sexual activities till they got married.
4.1.2 Gender
Four respondents were found here. Ebenezer and Richmond experienced the stigma and
discrimination because they said the employers and the wife respectively who
stigmatized and discriminated against them said that, being males they got infected
through multiple sexual behaviour. So they should be responsible for their infection.
Ebenezer was thought by his employers to infect those he taught as a teacher since he was
too close to the female students. Richmond’s wife left the matrimonial home because she
thought the infected husband got infected through multiple sexual behaviors and can
transmit it to her easily.
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Juliana and Vera said their husbands refused to give them love, support, compassion and
sympathy because they were women. Juliana said she was thought to be a vector of the
disease. That was why the husband did not get close to her again. Vera said women
played second fiddle in her society.
4.1.3 Ethnicity
Ebenezer said he faced the stigma and discrimination because it was thought by his
employers that the disease was a deadly one. He was to make way for healthy people to
work there. Coming from a particular ethnic group and had migrated to the capital city,
he was perceived as having “’seen the light’” in town and has practised “‘immoral
behaviour’”. That meant that the particular ethnic group was marginalized to be immoral
and unproductive when faced with sickness and diseases, exacerbating stigmatization and
discrimination. There had been stereotype of that ethnic group on the HIV infection
4.1.4 Class and financial difficulties
Vera claimed when she was well-to-do and looking after the husband, she received love,
support and affection from her husband but the moment she got to know of her infection
she started thinking that she could not focus on her business, and as a result, she ran it at
a loss and not supporting the husband again. The husband had capitalized on that to
desert her and was living with his mistresses who he claimed were looking after him. She
was now poor, homeless, landless and jobless and having nothing to do. That was why
the husband who was also HIV positive did not bother her any more. She was not given
love, support, encouragement and affection. She said she used to be very attractive and
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that was the reason the husband spent money to take her to the altar. The infection had
disfigured her. So, the husband treated her now as a pinch of salt.
4.1.5 Fear of contagion of the disease
All the respondents faced stigma and discrimination because the ones who isolated them
were afraid of contracting the virus and dying young. That is the reason for the shunning
of their company and getting them isolated. There was a fear of transmission through
intimacy and casual contact. According to Vera, her landlord evicted her because the
disease was seen by the landlord as incurable. She said her landlord associated the
disease with immorality and punishment for sinful act. He did not want to be associated
with such traits. Kofi, Richmond, Kenneth and Ebenezer said the stigma and
discrimination was against them because those who perpetrated it feared dying
prematurely. After revealing her status to her husband, Juliana experienced avoidance
and isolation again because her husband said HIV was a ‘polluted disease’. It was a fatal
disease and this caused fear of infection by those who stigmatized and discriminated
against all the respondents. It was a severe disease.
4.1.6 Witchcraft
Richmond said his wife alleged that when God was not with someone, it gave way for
witches and wizards to get attracted to the person. HIV was a punishment from God for
immoral behaviour. When God was not with someone, witches and wizards came in to
attack the person. Those who stigmatized and discriminated against him did not want to
get associated with cursed people. That has made the wife to pack her things from her
matrimonial home to her parents place.
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4.1.7 Vengeance
Before knowing her status, Vera said she had threatened to walk out of her marriage if
she tested negative to the virus. Now that she had tested positive the husband who was
also infected had decided to teach her a lesson. The reason for a husband to repay a wife
who was living with the virus was for comments she passed when she had knowledge of
her husband’s infection. If she had tested negative, she would have divorced the husband.
4.2 Kinds And Nature Of Stigmatization And Discrimination Against PLWHA
4.2.1 Institutional stigma and discrimination
4.2.1.1 Policy and legal stigma and discrimination
The ideas of routinely testing when one was sick of certain sicknesses, testing to travel
internationally, and legislations that protected the rights of PLWHA from the general
population were some of the kinds of legal and policy context of stigmatization and
discrimination. Four of the respondents (Kofi, Ebenezer, Kenneth and Richmond) said
compulsory screening and testing for HIV is stigmatizing enough. All the four
respondents said they tested routinely when they were sick of certain sicknesses like skin
rashes. After knowing their status, which others got to know of their condition, they were
stigmatized and discriminated against. That idea killed them slowly. It led to self imposed
stigma. Kofi said testing to travel or migrate internationally identified a PLWHA from
the general population. He was to travel for an HIV/AIDS conference which compelled
him to go for a test as a requirement. Those who got to know of his condition started
discriminating against him. He said there were legislations that protected the rights of
PLWHA from the general population. He had employment with some organizations
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which were HIV/AIDS friendly. He was not supposed to be relieved of his post on the
mere rumour of his infection. That did not help because the workers who later found out
he was HIV positive due to the fact that all others tested negative whilst he tested positive
did not want to associate with him again. The legislation was to help HIV positive people
to go for test each month. Juliana complained about the idea of prenatal testing and
screening. She was reluctant to go for the test but she was counseled that it was part of
the prenatal care. It was stigmatizing enough to know that she was positive even though
she did not voluntarily go for testing. Vera complained of the policy of bringing a spouse
to test for his /her status. If her HIV/AIDS positive husband had not been asked to bring
Vera to also test for her status in order for them to manage their condition, she would not
have under the normal circumstance, gone for any testing. Knowing her status has
brought stigma and discrimination to her.
4.2.1.2 Employment and workplace
Kofi and Ebenezer experienced this kind of stigma and discrimination. Kofi said people
became aware of his infection without him telling anyone. All the workers who used to
be close to him dispersed when they saw him approaching them. They would not touch
anything he had touched unless with a handkerchief or a wrapper on their hand. They did
not sit on the chair he sat and did not use his computer even though previously they did.
If he approached a group of workers at the workplace they dispersed. Some were pointing
fingers at him with a lot of gossips about him. This made him to stop the work
consequently. Ebenezer was handed a termination of appointment letter by his employers
after he had told them of his condition. He told them of his condition for the employers to
allow him go for treatment every month. The employers hid under the guise of punctually
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to sack him. Despite others going to work late once in a while, they were not subjected to
similar treatment like that given to him.
4.2.1.3 Healthcare system
Refusal to treat, failure to respect confidentially by clearly identifying patients with
HIV/AIDS and revealing sero-positive status to relatives without prior consent and some
problems PLWHA faced in health care services were the main stigma and discrimination
elements in the healthcare system. All the respondents expressed their reservation about
the folder the hospital used for PLWHA. It was different from the other patients’ folder
by having a distinctive ring bound at the edges. Anybody that was aware of that kind of
folder could discriminate and stigmatize the patient holding it. They added that at some
health facilities there were wards reserved especially for HIV/AIDS issues. Anybody who
entered that place would be stigmatized and discriminated against. They said the wards
should be for all patients and not for particular patients. Juliana mentioned that during
pre-natal care, pregnant women were supposed to go through compulsory HIV test.
Those who tested positive to the virus went through counseling and treatment. She said
the news of getting to know one’s positive status alone was stigmatizing and
discriminatory enough to kill the person. It led to self imposed stigma and discrimination.
She said she did not even want to go to public let alone get close to her husband.
4.2.1.4 HIV/AIDS programmes and policies
Juliana said even though the government’s policy on prenatal care of testing for one’s
status helped pregnant women to know their status, under the normal circumstances, she
would not have tested for her status. Prenatal testing has caused the strained relationship
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between her and the husband. Kofi said he had been participating at almost all HIV/AIDS
programs and says that during those programs, other people are invited and PLWHA
come there to give talks on how they got infected and how people could behave to avoid
contracting the virus. After those programs, those who were present saw him in town and
revealed his status to others without his consent. That was stigmatizing and
discriminatory enough. There, cameras could come also to capture PLWHA and those
who view those pictures stigmatized and discriminated against him. Vera had not been to
any programs on HIV but still said the policy of reserving folders exclusively for
PLWHA should be changed.
4.2.1.4 Religious institutions
Calling PLWHA to come forward for people to identify them under the guise of praying
for them is one serious way of exposing them to the stigma and discrimination. Juliana
and Kofi used this to cope with their condition. Juliana said she attended faith healings.
During those services pastors asked those having HIV to come forward for a handshake.
Juliana goes forward for prayers and the congregation identified her and isolated her after
the service. Meanwhile, the disease did not leave the body of the victims. Kofi wrote his
name and the nature of his problem on a big paper and pasted it on his forehead and chest
on the instruction of the pastors. This was stigmatizing enough because the disease did
not leave the body and other people who had been there and seen him and other HIV
patients ended up not associating themselves with him or other patients for fear of
contagion of the disease. His church members who became aware of his condition
categorized him as a sinner and impure due to the Biblical teachings on morality. They
shunned his company and isolated him.
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4.2.2Community stigma and discrimination
Gossip, shunning, avoidance and isolation led to non disclosure of one’s status. All the
respondents said their communities did not invite them to social gatherings. Five
respondents (Juliana, Kofi, Vera Richmond, and Kenneth) said that they faced stigma and
discrimination in the community. Other members of the community did not eat Juliana’s
food neither though formerly they did. She said they suspected her of the disease. The
community would not invite her to a social gathering. Vera said her well-wishers did not
see the need to get close to her again. According to her, the landlord evicted her and her
daughter because he got to know of the infection. It was the husband, who after packing
out and leaving her, came to the landlord that he no longer married her. He said he would
not be responsible for the payment of rent advance. She said he added that his wife went
about telling people she has HIV so the landlord should evict her. This was after Vera
had confronted the husband about his immoral behavior and the idea of spreading the
virus. This ended up at the courts, CHRAJ and the DOVVSU. At the time of this study,
she lived in the wooden structure she operated as her ‘chop bar’ business. She said the
community would not invite her to a social gathering. Initially, Kofi’s community would
not invite him to a social gathering, but now that he had come out to declare his status to
the whole world, the community invited him to give talks on the virus but did not
socialize with him.
Kenneth said through his own family and Richmond said through his wife, a lot of the
family members, friends and other people they could not give off hand were aware of
their condition. They stigmatized and discriminated against him. Those people who
spread the news of the respondents’ health did it to stigmatize and discriminate them. The
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family members would not shake them now that they were aware of their condition. The
community would not invite them to a social gathering as they used to.
Richmond said he took elders of his church where the proprietress worshipped to plead
on his behalf but they inexplicably broadcasted the whole issue to other members of staff
and the church members. He said gossiping and finger pointing were the order of the day.
His friends got to know of his condition and withdrew from him. They did not want to
contract the virus from him through casual contact.
4.2.3 Family stigma and discrimination
Five respondents reported having experienced family stigma and discrimination. They
said infected individuals often experienced stigmatization and discrimination in the home
and women were often more likely to be home. They were often more likely to be badly
treated than men and children. Family responses to women with HIV/AIDS included
blame and rejection due to promiscuity. Men also experienced family stigma and
discrimination in various forms. Juliana claimed her husband who was so caring and
trustworthy had disappointed her. Since she became aware of her infection and informed
him, he began to come home late at 10:00pm. Her husband would sleep in the “hall” part
of the “chamber and hall” room while she slept with her children in the “chamber” part.
The man began leaving for work at 5:30am without telling his wife anything nor have
sexual intimacy with her. He, however, cuddled the daughter because she was not
infected. Anytime the man wanted to give money for the upkeep of the home, he put it on
the table at the centre of the “hall” part of the room. He did not touch anything his HIV
positive wife touched. He did not eat food cooked by his HIV infected wife neither
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because it was believed to be contaminated with HIV. The husband had not declared
outwardly of divorcing her but he refused to accompany Juliana to the health facility to
test for his status as he claimed he was immune to HIV. According to Juliana, the
husband said he did not sleep around so he would not get HIV.
Kofi said his father had relieved him of his position in the employment given to the son
in his own (father) business. His father did not want to talk to him let alone see him and
touch him for fear of contagion of the disease. The father had instructed all members of
the family who were under his care to stop having anything to do with his HIV-infected
son. Anything short of that meant that all the family members risked being ostracized
from the household. They had obliged. Kofi was still with the lady he claimed infected
him but she was not in support of him speaking out on his education on the virus given to
the general public. She advised the respondent to stop going public as people who were
aware of their relationship would think she was also infected. According to Kofi the lady
was prepared to share half of her salary with her fiancé for him to stop going public. She
was ready to do that provided the reason for his going public was to make ends meet.
Vera said her husband had left the matrimonial home. He took two of his children and
had left the infected child with her. The husband did not perform his conjugal duties and
did not give money for her upkeep. Vera said he did not call his wife to ask of her health
and cared less about their eight year old daughter who tested positive. Vera said she faced
stigmatization and discrimination from her extended family. She went to inform her
family about his leaving and his criminal activity of spreading the virus. They were called
together but her husband flatly denied before the family that he was infected with HIV,
and since then, there had been much stigmatization and discrimination from her family.
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They did not even call her to ask of her health let alone visit her. She called those she
used to be friendly with but they would not pick up her calls. Vera proceeded further to
inform the man’s family about their son’s behavior so that, they could advise him to stop
infecting others with the virus and also to return home to his wife. That attempt had not
worked, as the man again denied before his family of his infection. He told his family he
had left the house because they were facing financial difficulty with the land lord quitting
them. He said he was looking for a place for the family to live. He would come back for
the wife and child. His wife should continue to live in the ‘chop bar’ wooden structure
for now.
The stigma and discrimination had extended to the situation where the man’s family had
advised their son to divorce her since she claimed she had HIV. Even though the divorce
proceedings had not been started, the man’s family considers the marriage annulled. Her
plea for the man’s family to compel him to go for the test in their presence had not also
yielded any result as she was left alone. Even though her brothers used to help her often,
they were not doing it now because they learnt she had been infected with HIV. They did
not even want her to get close to them. Currently, even her friends as well as friends of
friends, relatives and family were pointing fingers at her. The mistresses of her husband
called her on the phone and abused her. The mistresses claimed, in turns, that they had
gone to a health centre with her husband but he tested negative to the virus. Even if he
was infected with the virus, pastors had prayed for him so he was free from any disease.
They said Vera should sit down and complain to people that she had the virus and die.
Bashings, castigations and insults were the order of the day from her husband’s
mistresses.
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Richmond said he informed his wife of the infection for her to also go for the test, but the
wife packed her things and left the matrimonial home. She had subsequently gone to her
parents place without even knowing her status by testing. She did not call him and when
he called, she would not answer the phone. She answered his calls from other numbers
but the moment she made out his voice, she cut the line. His wife’s family members, who
were now aware of his condition, refused to speak to him. They had advised him to stay
clear their daughter. They had vowed never to allow their daughter to have a child with
him even if she returned. This was to prevent an infection of the virus on their grand
children. The respondent took some elders of his family to plead for the return of his wife
to the matrimonial home. This occurred before they became aware of his condition. They
also did not want to have anything to do with him for fear of contracting the disease from
him through association.
Kenneth’s sister revealed his status without his consent. Other family members got to
know of it and they were all afraid to come close to him. Even though he looked after
other family members, they began to demand the money through the mobile money
transfer system without having to meet him personally. Those who were close to him
were also careful not to touch anything he touched. At the time of this study, it was only
one child that stayed with him, but he suspected the child would have loved to leave him
based on gestures shown by him.
4.2.4 Individual and personal stigma and discrimination
Individuals who were already marginalized may be fearful of negative or hostile reaction
from others. The two respondents isolated themselves from people due to the stigma and
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discrimination. Juliana did not want to go to social gathering for fear her husband would
reveal her status to people. Ebenezer recoiled to his shelves because was now with
nongovernmental organization to take care of him.
4.2.5 Traditional healers
Kofi sought medication with traditional healers who gave him some directions. They told
him and other PLWHA to have sex with virgins and mad people which would heal them.
Some PLWHA did it and were arrested. Meanwhile they were not healed. He nearly did
it, but changed his mind due to the arrest of other people.
4.3 How PLWHA Feel About The Stigma And Discrimination Against Them
The PLWHA in this study felt rejection at work, home, school, and in the health care
centers. They felt shameful, guilty, hopeless and useless. This led them to withdrawal,
depression, and not to disclose the HIV status.
4.3.1 Psychological feelings PLWHA experience
PLWHA felt avoided, excluded, isolated, ostracized, blamed, violence on them, service
denied, physically distanced, awkward social interaction and always being advised to
conceal their status.
All the respondents went through psychological experiences. Juliana said her once loving
and caring husband, whom she trusted and confided, had disappointed her. Initially, she
had wanted to pack out of the marriage but the nursing officer had advised her against
that as “every marriage is full of ups and downs”. Pastors and church elders had advised
her against that even though she had not told them the reason for her husband’s behavior.
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She felt withdrawn and did not want to go to social gathering since she was afraid the
husband would broadcast her status to people. This was because her husband knew a lot
of people in the vicinity and was influential in the area. But those thoughts were gone
now with the counseling at the health facility.
Kofi said he felt neglected, rejected and isolated as well as let down by the father and
other family members. He felt God was against him so he decided to move from one
prayer camp to the other to seek divine healing. He said it was to prove to the family that
God was still with him but he never had healing and that actually bothered him so much.
Now he did not feel that again because he had come out boldly to educate people on
HIV/AIDS. This had made society to accept his condition. He said also that because he
experienced poverty for some time because he was not employed, he felt the father had
abandoned him. He felt ashamed of contracting the virus because there was a time he
entered a business apartment and somebody remarked he was handsome. To him that
female wished she was with Kofi in a relationship. There, he regretted being an HIV
patient and went out to cry. He wished his condition remained a secret.
Vera said she felt cheated especially when the only man she claimed to have loved
infected her and has abandoned her to her fate. Her family as well as her husband’s
family had neglected her now that she needed them most. She also felt let down and
rejected. She experienced battery, which was why she took the man to the Domestic
Violence and Victim Support Unit (DOVVSU). However, that did not yield any result as
that had rather aggravated the stigma and discrimination against her. Vera regretted
marrying the man. However, she was quick to add that she still loved him and if he was
prepared to change then she would accept him. What she did not understand was why the
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person who infected her should now neglect, isolate, discriminate and stigmatize her. She
wished her condition remained a secret but for the immoral behavior of her husband.
Current to the time of this study, DOVVSU did not want to appreciate her side of the
story to compel the man to stop spreading the virus. According to Vera, DOVVSU now
did not want to hear her anymore. Anytime she called personnel at DOVVSU their
behavior demonstrated that her husband’s mistresses had gone to bribe them. They listen
to the man and her mistresses more than her. Vera said they also insulted her to stop
bothering them and asked her not to call the line again. She said DOVVSU said they had
asked the husband to resume responsibility of the children so they had nothing for her.
They told her the case was not in her favour, but she said she knew she was telling the
truth and the doctors at the hospital could testify to that. She felt discriminated and
rejected as well as cheated and avoided by DOVVSU.
Three respondents (Richmond, Juliana and Kenneth) said they wished they did not tell
their wife, husband and sister respectively about any infection for it to remain a secret.
They wished their condition remained a secret and this business of bringing someone to
monitor the medication of PLWHA should not be done to other PLWHA. Juliana said
apart from her husband and the health professionals who are aware of his condition, she
was not ready to disclose her status to anybody. Kenneth felt ashamed of living with
HIV/AIDS, especially when he was going for treatment. He felt rejected now that he
claimed he was nearing his grave
Richmond said even though he had other people he could have sex with, he loved his
wife dearly and was willing to do anything to let her come back. He did not care about
the behavior of his family and the wife’s family. He said he no longer cared about the
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discrimination against him. They should go ahead and discriminate against him. All that
he wanted was to bring back his wife which he claimed was now a difficult task.
Ebenezer said he felt cheated and a denial of his right to work and earn a minimum wage
and decent living by the school, rejected by society. He regretted telling his employers
about his condition as he was currently unemployed. He wished his condition remained a
secret. He felt shy when he walked in town as gossips and finger pointing were the order
of the day. Ebenezer felt like having a sexual partner but was not too sure whether he
would get one if he told the person he had HIV. He felt avoided by his employers.
4.3.2 Feeling of suicide by PLWHA
Kofi and Vera felt like committing suicide. It took the intervention of nurses and pastors
to prevent it. Kofi nearly took poison to end his life, but the nurses counseled him very
well. Kofi said discrimination can create mental agony and even result in suicide. Vera
contemplated suicide, but she was counseled by a pastor. He quoted extensively from the
Bible and advised her to take into consideration her children before thinking about taking
her own life. She claimed the pastor kept quoting the book of Psalms and also asked her
to think about how the rich man who died went to Hades while Lazarus was in the bosom
of father Abraham. This showed that if one took his life and went to Hades he would be
punished. According to Vera, anything short of that meant that the dead rich man would
not have asked father Abraham to let him go back to the world to tell his five brothers to
repent. Vera mentioned she had also been told that taking one’s own life in Ghana is
both sinful and criminal.
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4.4 Coping Strategies People Living With HIV/AIDS Employ
PLWHA can attempt to mitigate the negative psychological and social impact of HIVrelated stigma and discrimination by employing coping strategies.
4.4.1 Engagement coping
It is geared to either increase primary or secondary control over stressful circumstances.
4.4.2 Individual primary control coping
An individual that engages in problem solving to gain primary control over stigmatization
and discrimination would likely seek to change the perceptions held by stigmatizing
individuals through, for instance, social skillfulness or by displaying stereotype
disconfirming behaviors (Miller & Kaiser, 2001).
All the respondents said through the counseling the nurses at the VCT centre give to
them, they were now aware that not only irresponsible, promiscuous or heterosexual
people contracted HIV. In fact, they said they were aware that even though sex forms
about 85% of HIV transmission, the 15% was through other modes like using unsterilized
syringes and unscreened blood and its products. This was a consolation for them not to
feel down hearted about the stigma and lose hope. Anytime someone asked them about
their infection they would mention other modes of transmission due to the stigma. To
them, getting infected through sexual contact meant that they were promiscuous.
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4.4.3 Secondary control coping
This is by using distraction. That is by focusing on others rather than on their own
negative experiences. Some also sought comfort in their faith.
Five of the respondents said anytime they visited the hospital, they saw other PLWHA.
That alone comforted them as they saw themselves as not the only people carrying the
virus. Kofi said he met other PLWHA at the hospital and other worldwide places. This
made him felt comforted as he was not alone who had contracted the virus.
Juliana claimed she attended a number of healing services with the aim of getting healing
someday so that her once loving husband would bounce back to her. In tears, she quoted
from the Bible passages that enabled her to cope positively with the stigma and
discrimination from the husband. She claimed every morning she prayed to her object of
worship to enable her cope with her husband’s behavior.
Kofi said he decided to move from one prayer camp to the other seeking divine healing to
prove to the family that God was still with him. However he never was healed and that
bothered him so much. He said he has responded positively by trying to educate people
on HIV/AIDS. He said, this is due to the comprehensive counseling by the nurses at the
Korle bu Teaching Hospital where he receives treatment. This took him to places all over
the world on conferences, seminars, workshops, among others. He said he had accepted
that people will stigmatize and discriminate against him. He did not care anymore.
Vera said she prayed thinking one day she would be healed and people would flock to her
place once more. She fasted almost every week committing her-self to the Lord. This was
to make people accept her in life once again. That has not worked so much.
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Kenneth said he attended prayer meetings with the hope of being healed to avoid the
manifestation of stigma and discrimination.
Ebenezer said he responded well by approaching the church elders of the proprietress to
plead with her on his behalf to settle the matter amicably but that did not work.
4.4.4 Disengagement coping
This is by using avoidance. That is by disengaging from people who stigmatized them
and that PLWHA purposely avoid situations in which they expected stigmatizing
reactions to their HIV status to occur. Three respondents disengaged from situations to
cope with the stigma and discrimination.
Vera claimed, “I told people of my plight so that they can help me to overcome my
‘”storm”’. This has worked well with most people but not all. Some people quickly leave
my presence. I also did not get close to them again”.
Ebenezer said, “I had responded by changing my hospital to a more secure place further
from my residence. I had moved to a new community at Nungua, but those who knew of
my condition come there and identified me. I did not go to my friends who knew of my
condition because I had joined a nongovernmental organization that caters for me”.
Kenneth said, “I had changed my place of receiving treatment because the stigma at the
old place was more massive”.
4.4.5 Selective disclosure
This is dealing with stigmatizing and discrimination reactions by becoming highly
selective with who PLWHA informed about their HIV status. Four respondents used
selective disclosure to cope with the stigma and discrimination. Juliana said, “I coped
with the stigma and discrimination by not informing any other person of my condition.
Not even my mother”. She said “if my husband divorces me now I would not inform my
future husband of my condition if I am to remarry. If I tell other people of the behavior of
my husband, they will ask me what I have done to merit such a treatment from my
husband. Apart from the elders and the pastor that advised me against suicide, I will not
tell anybody of what disturbs me psychologically. Even the pastor and the elders, I have
not told them my condition. I only told them about my husband’s behavior. I am discreet
for now”.
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Richmond said “I was not willing to inform his mistress of my condition as she would
quit relationship with him”. Kenneth said “I had begged my children not to tell anybody
about my condition”. Ebenezer said “I wished my condition remained a secret. I am
careful from then on who to inform of my condition”.
4.4.6 Counselling, care and support strategy by counselors
Counseling, care and support strategy by counsellors includes interventions towards
empowerment aimed at the infected or affected individual or group. These interventions
reduced stress and anxiety and increased disclosure of one’s positive status and improved
community attitudes. All the respondents benefitted in counseling, care and support from
counselors to cope with the stigma and discrimination.
The Nursing Officer In Charge of VCT at the health facility greatly encouraged Juliana
so much. She has the Nursing Officer’s mobile number, and she calls anytime she is in
need of help. She said she usually got some form of material support in the form of bag
of rice, oil and money from the Ghana AIDS Commission through the nursing officer.
The counseling services provided at the health facility had helped Vera to cope positively
with the stigmatization and discrimination. The health personnel had counseled her to
resume her ‘chop bar’ business without thinking of her husband. She said that they had
told her every marriage had its own positives and negatives so she should avoid the man
and move on with her life. She has responded well by not thinking of him. DOVVSU had
ordered the husband to assume responsibility of the children and she appreciated it so
much. Richmond said, “I received much counseling from the health facility. This had
enabled me to cope well with the stigma. I do not participate in any World AIDS Day for
the cameras to expose him. I do not have time as my job takes me to many places”.
Kenneth said he received much counseling at the health facility and that keeps him going.
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Health personnel counseled Kofi often to live positively with the condition. This had
made him come out to educate people on the virus.
4.4.7 Finding support with NGOs
Ebenezer said, “my brother, I am currently being cared for by a nongovernmental
organization with my unemployed background. I am sheltered by the NGO which
provides for my needs. I do not walk alone except with officials of the NGO. This is
because I feel shy when walking alone. They also encouraged me to live positively with
the infection. I do not participate in any world AIDS day as what mattered for me now is
to fight the stigma and discrimination on me and if possible to seek healing for my
disease”.
4.4.8 Going public
Kofi said, “I do not care anymore with any form of stigmatization and discrimination
against me”. If even all my family members will discriminate and stigmatize me, I fear
the least. I have gone public. This is based on the counselling I have received from the
health facility”. I do not use my real name in public because of the apparent
stigmatization and discrimination in corporate affairs I suffered when I worked. I avoid
the cameras when I am doing the education, even the television cameras. This is because
the lady who infected me does not appreciate my decision to go public. People might
stigmatize and discriminate against her. I have met world leaders as a result of my
decision to go public which I cherish most. Due to fear of re-infection, stigmatization and
discrimination (because I have gone public), I would not get anybody to have sex with. So
I engage in masturbation to satisfy my sexual desires any time I am outside Ghana for a
long time. In Ghana, I engage in protected sex with my lover who infected me. I
participate in the World AIDS Day every year, but my identity is censored anytime the
media is around. I belong to an association called ‘Hope for Life’, an NGO. This
association is affiliated to the Ghana AIDS Commission which gives financial assistance
and policy guidance. We met to discuss pertinent issues concerning our welfare. The
association holds meetings once a month. We are taught to believe that busting of the
male condom is either due to air which had entered it, it had expired or it was not well
lubricated. The demonstration of the wearing of the condom was done for those who
wanted to have sex”. It was only Kofi that attended such association meetings though the
rest said they would want to join later.
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4.4.9 Others
Richmond claimed he was the type that did not bother so much about issues like
somebody isolating him. He said he had other sexual partner and that had made him not
to miss the wife so much even though. He did not care about the stigma and
discrimination against him by his wife because other ladies satisfy him.
4.5 How And Where PLWHA Can Seek Redress
4.5.1 Prayer
Prayer is one of the greatest tools one could have in the world because it opened the door
to a dialogue with God. It helped PLWHA to overcome their ‘storm’. Three of the
respondents sought redress through divine intervention. Juliana said already she
summoned all her enemies to God through prayers so she hoped if her husband was an
enemy God would deal with him. She mentioned that she knew she could seek redress
through her family and her husband’s family as well as her church but she was not ready
to do that as that would bring about more stigmatization and discrimination issues from
that quarter. She left everything to God. Initially, Kofi said he decided to seek redress by
praying. In this case he was moving from one prayer camp to another seeking divine
vengeance on the father but later he said to himself that even Jesus Christ who was
blameless in the Bible was rejected though He had done nothing wrong. Vera sought
divine intervention through prayers and told people her story for them to advise her.
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4.5.2 Songs and quotations
Five of the respondents used songs and specific quotations from the Bible to seek redress.
Vera, Kenneth, Juliana, Ebenezer and Kofi depended heavily on specific quotations in the
Bible and songs to seek redress. She said vengeance was the lord.
4.5.3 The Family
Two respondents used the family to seek redress. Vera took the matter to her family as
well as her husband’s family. This had triggered another stigma as her brothers who
would have helped her in her chop bar operation said they are afraid of putting money in
unprofitable business because she would die very soon. Richmond sought redress by
reporting the matter to his wife’s family at the time she left but they stigmatized and
discriminated against him. The elders he took to the wife’s place also spread the news
and were not willing to get close to him.
4.5.4 The Ghana police service
Two of the respondents used the police. Vera used the police through DOVVSU to seek
redress. Vera said she confronted her husband about his immoral behavior and the
criminal activity of spreading the virus and the man assaulted her. She reported the matter
to DOVVSU of the Ghana Police Service. The Domestic Violence and Victim Support
Unit invited the man who denied ever having HIV. Vera claimed she pleaded with the
personnel of DOVVSU to compel her husband to go for the test anywhere convenient for
DOVVSU since they might think she was framing the man up but DOVVSU said that
matter is for the courts to decide. Kenneth said he knew the Police, CHRAJ and the
courts. However, he is not ready to seek redress because when the assault case went to
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DOVVSU it was brought back home. Kenneth attacked his sister when he revealed his
status to his children, and it ended at DOVVSU. Since it was a family affair, the matter
had been moved from DOVVSU for out of court settlement. He did not call the sister
again. Neither is she living with him, and that alone is enough for him.
4.5.5 The Commission on Human Rights and Administrative Justice (CHRAJ)
Two respondents used the CHRAJ to seek redress. Ebenezer took the matter to the
CHRAJ but there was a rearing stigma and discrimination from other places like those
family members who were not aware of his condition. So he dropped it. Vera took the
matter to CHRAJ but she was facing a lot of problems so she dropped it.
4.5.6 The courts system
Vera went to the courts (legal aid) which asked her to deposit an amount of Fifty Ghana
Cedis which according to her, she did not have immediately but had to borrow. The
courts then invited the man but at that time the man was nowhere to be found as
information indicated that he had gone to Kumasi from Accra. Vera said later when the
man was located, the warrant had expired.
4.5.7 Seeking redress with non governmental organization
One respondent (Ebenezer) took church elders to plead on his behalf but that did not
work. He was now with an NGO which provided his needs. He was not ready to go to
CHRAJ, the courts or any other place as that would bring disgrace to him.
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4.6 Discussion of the study
This study was intended to describe the stigma and discrimination People Living With
HIV/AIDS experience on a daily bases in Accra. It also identified how People Living
with HIV/AIDS feel about the stigma and discrimination against them. The research also
indicated how People Living With HIV/AIDS cope and respond to such stigmatization
and discrimination including where they seek redress. The background to the study
identifies that People Living With HIV/AIDS are suffering from great deals of rejection,
ostracism, moral judgements, in addition to the daily traumatizing burden from their
physical and psychological experience. This situation has intensified their feeling of
isolation and pushed them to despair.
Discrimination against People Living With HIV/AIDS in the areas of employment and
workplace, program and policies, policy and legal context, religious institutions,
community contexts, family contexts, individual liberties, and access to healthcare, was
observed in various settings. The respect of the rights of HIV-infected person is one of
the fundamental rights of every individual, which nearly countries in Africa and the
world have enshrined in the constitutions. HIV/AIDS is widely seen as consequence of
sexual immorality, thus, infected individuals are considered responsible for acquiring the
virus, hence the stigma. In some cases, the infection is perceived as a punishment given
by God to perpetuators of sins like prostitution, promiscuity, drug use or homosexuality.
Many Ghanaians perceive themselves as very moral and religious people and have a
value system which makes them believe that an individual should abstain from sex until
marriage. Those who acquire HIV/AIDS through sexual activity bring disgrace to their
families which starts with finger pointing as stigma. Television coverage of People
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Living with HIV/AIDS often has their faces covered else it will ignite stigma and
discrimination on them. The 1992 constitution of Ghana guarantees Fundamental
Freedoms and Human Rights. It abhors discrimination of any kind on any basis.
The literature review delved into other peoples’ work which identifies the forms of HIVrelated stigma and discrimination People Living With HIV/AIDS experience. While
some writers are of the view that not all stigmatization attitudes result in overtly
discriminate behaviour, Campbell (1996) disagrees. He describes discrimination as
negative behaviour and stigmatization as any negative thought, feeling or action toward
people irrespective of whether they are discriminated against because they know that they
are devalued. Other definitions of HIV/AIDS related stigma and discrimination have
prejudice, discounting, discrediting, and discrimination directed towards people
perceived to have HIV or AIDS, and the individuals, groups, and communities with
which they are associated. The sources of stigma and discrimination describes in the
literature are similar to the pre-existing ones of sexuality, gender, race and ethnicity,
class, fear of contagion of the disease and witchcraft. The kinds of HIV/AIDS related
stigma and discrimination manifests in policy and legal context, institutional contexts like
employment and workplace, healthcare systems, programs and policies, in religious
institutions, community contexts, family contexts and individual contexts (Daniel and
Parker,1993).
People Living with HIV/AIDS feel rejected at home, work, school and in the health care
centers. They feel shameful, guilty, hopelessness and uselessness. This leads to
withdrawal, depression, not to disclose the HIV status and prevent people from testing for
HIV. UNAIDS (2002) echoed that employees working in HIV/AIDS programs settings
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may be seen by the community as HIV positive, and discriminated against. Some People
Living with HIV/AIDS also feel like committing suicide.
Despite this, PLWHA employ strategies that help them cope with the stigma and
discrimination. This includes both voluntary and involuntary responses. PLWHA seek
redress through prayer, family, the Domestic Violence and Victim Support Unit of the
Ghana Police Service, the Commission on Human Rights and Administrative Justice and
the Court System. Others do not seek redress at all.
Most of the respondents in this study acquired the virus through sexual activities. Some
became infected through their spouse, while the rest through their own sexual escapades.
The six respondents experience family stigma and discrimination. Three respondents
experience workplace stigma and discrimination. Ebenezer who experiences the stigma
and discrimination is now withdrawn and does not even want to work. He is being
catered for by a non-governmental organization. The conclusion is that due to what the
respondents feel, they have a way of coping with their condition.
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CHAPTER FIVE
SUMMARY, CONCLUSION AND RECOMMENDATIONS
5.0 Introduction
In this chapter, significant findings were identified, interpreted and discussed. The
discussion shall highlight the major findings. Insights made from them are discussed in
the light of findings from related previous studies. This chapter also incorporates a
subsection on recommendations and summary of findings.
5.1 Summary of findings
The study sought to identify the sources of stigmatization and discrimination against
People Living With HIV/AIDS in Accra. It was also intended to describe the nature and
kinds of stigmatization and discrimination the respondents experience on a daily basis. In
addition, it sought to identify how the respondents feel and cope with the stigma and
discrimination against them using Accra as a case study. This research used the narrative
method for the respondents to tell their stories into detail. It was conducted with six
respondents (two ladies and four gentlemen) who were identified through the snowball
sampling method. The respondents came from six suburbs of Accra. The main instrument
used to carry out the research was a flexible interview schedule used with the
respondents.
The findings revealed that the respondents actually experience stigma and discrimination
at workplace and employment, community context, legal and policy context, programmes
and policy, religious institution and especially the family. The manifestation of the stigma
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and discrimination came in various pre-existing sources. That is sexuality, gender, race
and ethnicity, class, fear of contagion of the disease, and witchcraft.
PLWHA feel isolation and rejection at home, work, school and in the health care centres.
They feel shameful, guilty, hopelessness, and uselessness. This led to withdrawal,
depression, and not to disclose the HIV status. Some feel like committing suicide due to
the stigma and discrimination against them.
The respondents cope with the stigma and discrimination through a variety of approaches
like attacking those who revealed their status, leaving everything to God and actually
seek redress through both government and non-governmental agencies. Kofi came out to
educate others in society on the disease. This has made society accept him more. The
more one seeks redress, the more stigma and discrimination manifests. They do not get
what they want but feeling of pain and cheating .For example, Vera took the husband to
her family and the husband’s family, CHRAJ, DOVVSU and the courts. This brought her
more problems.
The healthcare facility counsels patients of their responsibilities and duties of managing
the disease and the stigma and discrimination attached to it. They are taught to exercise
daily, maintain adequate diet and nutrition, maintain ideal weight and avoid smoking in
order to take care of themselves and others. They are educated on how to manage the
disease to avoid reinfection. They are taught personal care, psychosocial care, palliative
care, personal hygiene, diet intake and proper medication. Emotional, bereavement and
grief counselling are given to the infected and the affected. They are also educated on
their right to access information right to confidentiality, right to access adequate
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healthcare, right to privacy, right to human dignity, right to life, right against
discrimination, right to legal representation, right against physical abuse and
abandonment by the association they have formed called “hope for life” association. The
association holds meetings once a month. It brought to the fore that target population
(PLWHA in Accra) are taught to believe that when the male condom bust, it is either due
to air which has entered it, it has expired or it is not well lubricated. The demonstration of
the wearing of the condom is done for those who want to have sex. It is only Kofi that
attends such association meetings though the rest say they would want to join later.
5.2 Conclusion
It is so significant to note that the family, which is the basic protective institution, should
stigmatize and discriminate against their members that have HIV. A Father, who is to
show love to his child does not want to have anything to do with his son who has HIV.
The family of procreation is also guilty of stigma and discrimination against the HIV
infected members. Two husbands do not want to talk to their wives nor have sexual
intimacy with them under the guise that the wives are promiscuous, as if the wives are
second class citizens the moment they become infected with HIV/AIDS. In these harsh
economic situations people (respondents) who are known to be infected with HIV are
avoided and sacked from their places of employment with so many excuses. This is
against the fundamental principles and practices of Human Rights enshrined in the
economic and social rights of the 1992 constitution of Ghana.
However, despite the stigma and discrimination, some People Living with HIV/AIDS
have found a way of coping with their condition. Some take those who stigmatize and
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discriminate against them to their family members, Domestic Violence and Victim
Support Unit and the Courts. Some use prayer to seek vengeance. Some attack people
who reveal their status without their knowledge Some PLWHA feel rejected, isolated,
committing suicide and cheated while others do not feel anything at all. The rest, though
feel something, leave everything to God without seeking redress. They pray and sing to
glorify their object of worship. Still some adopt positive ways of living with their
condition by educating others on the disease.
In all these, the Ghana AIDS Commission which has been setup to deal exclusively with
HIV issues provides support to organizations and health personnel to provide counselling
services to People Living with HIV/AIDS. This is highly commendable and with
improved finance and resources, more could be achieved. There are a number of threats
and problems which when turned around will become strengths and opportunities to
make HIV programs viable. The researcher believes the findings would be a good
experience for future exercise.
5.3 Recommendations and suggestions for action
As a result of the seeming stigma and discrimination the respondents face, the research
suggests that the following strategies for reducing stigmatization and discrimination
associated with the disease should be pursued by the respondents when faced with both
perceived and grand stigma and discrimination. The respondents should engage in
Information, Education and Communication, Community Mobilization, and advocacy.
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5.3.1 Community mobilisation
The respondents should engage in community mobilization to reduce the stigma and
discrimination against them. A community mobilization is when a group of people
become aware of a shared or common concern or need and decide to come together to
take action in order to create shared benefit (UNAIDS, 2007). A community is sometimes
consciously mobilized to take action about an issue, and in this case stigma and
discrimination against the respondents. HIV and AIDS stigma and discrimination is a big
issue which affects the work and self-respect of the respondents. It is, therefore,
important for the respondents to come together to address this issue to improve the way
they relate to themselves and the outside world. They should work with policy makers,
professional groups, faith-based organizations, community and individuals. In terms of
HIV stigma and discrimination reduction, the respondents have to mobilize the
community to see stigmatization and discrimination against them as wrong. There is the
need for such attitude to be changed because they need love, care and support (OhenebaSakyi et al, 2010). Kofi did that and it helped him so much. Communities of location are
important in any mobilization efforts to reduce HIV stigma in the selected suburbs.
Through the respondents the community can help with the design of programmes to

uphold the rights and dignity of the respondents

ensure active participation by a broad and representative group of the
community

provide for equal partnership and mutual respect between the community and
external facilitators
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
build capacity and ensure sustainability.

build on the realities of the respondents while maintaining hope based on
community collective action.

as much as possible maximize the use of community resources but identify
and use additional support from external sources.
In the community mobilization process the respondents could identify the resources in the
community through what is known as micro planning or village mapping to get the
relevant information. This involves:

participatory needs identification in which as many members of the
community are consulted to find out the felt needs in relation to HIV and
AIDS stigma.

focus group discussions, Interview, House-to-house visits, Observation by
the respondents
Chiefs and elders, families, key individuals/ opinion leaders/ significant individuals and
other interest groups can help in the mobilization process (Oheneba-Sakyi et al, 2010).
After identifying those who can assist the respondents, they are to disseminate
information about HIV and AIDS stigma reduction through education through promoting
awareness. Not all suburbs of the respondents are the same so they need to find out which
type of promotion action is appropriate in each community. The following can be useful:

sports and games, especially with youth groups

debates
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
theatre/ public plays/ street drama/ street jam/ street dance

FM radio

local newspapers

audio cassettes

pamphlet and handouts

posters

other activities that could be employed to promote education about
HIV stigma in their community
5.3.2 Information, Education and Communication (IEC)
The respondents can engage in IEC. IEC is a broad term comprising a range of
approaches, activities and outputs. IEC combines strategies, approaches and methods that
enable individuals, families, groups, organizations and communities to play active roles
in achieving, protecting and sustaining their own health. Embodied in IEC is the process
of learning that can empower the respondents to make decisions, modify behavior and
change social conditions (World Health Organization, 2000). It is seen as an essential
component of HIV and AIDS prevention and care programmes and as such, it has several
benefits. It will help to demystify the fear people have about getting infected when they
get close to the respondents at the workplace, community, families, and other places
(Oheneba-Sakyi et al,2010). The respondents need to engage in IEC to demystify the
stigma and discrimination against them.
Information can also mean knowledge acquired through study or experience or
instruction. The types of information include the following:
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
Facts- in HIV and AIDS prevention the respondents may provide information
that may be described as facts. A fact represents something that is proven to be
true or concrete.

Opinions- in HIV and AIDS stigma and discrimination reduction the
respondents can present information that can be described as opinion. Opinions
are people’s personal expressions of view and judgement on matters that people
are familiar with (Oheneba-Sakyi et al, 2010).

Objective- is one that presents all shades of view on the matter. For example,
HIV transmitted through several ways. Heterosexual intercourse, homosexual
intercourse, sharing sharp needles and through mother to child transmission.

Subjective- information influenced by one’s emotions or feelings.

Primary- is information that comes to you direct from source.

Secondary- is information not in its original form but from an eye witness.
Education means to bring forth what is within or bring out potential. Education takes
place in the home through parents, school, television and community. The type of
educational strategies for HIV and AIDS stigma and discrimination reduction is peer
education and rights education.
Communication is a process that involves exchange of information, thought, ideas and
emotions.
The respondents need to engage in the following types of communication

Verbal communication

Non verbal communication
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
Visual communication
The respondents should engage in verbal communication that includes sounds, words,
language and speaking. This can be oral and written. Oral communication can be face to
face, telephonic conversation, public address system, audio & visual (TV, Radio),
lectures, meeting on stigma and discrimination on HIV/AIDS (Oheneba-Sakyi et al,
2010).
All the respondents can use letters, memos, reports, suggestion system, information,
orders on HIV/ AIDS and its related stigma and discrimination. Juliana can use letters to
educate the husband on HIV/AIDS and its related stigma and discrimination for him to
stop the stigma against her.
Non verbal can be body movement, gestures, facial expressions, postures on HIV/AIDS
related stigma and discrimination. Juliana can engage in body movement, gestures, facial
expression and postures to communicate to the husband.
Visual communication can be topography, photography, drawing, illustration, signs,
symbols, and designs on HIV/AIDS related stigma and discrimination.
IEC will lead to knowledge on how HIV is transmitted or not transmitted, Reduce stigma
and discrimination and Effective integration of prevention, care and support
Interpersonal communication and mass media communication are two channels that can
reduce stigma and discrimination. Interpersonal communication is defined as
communication that occurs between people who have known each other for some time.
Interpersonal communication on HIV/AIDS-related stigma and discrimination occurs in
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small settings as Workshop/seminars, Religious services, Cultural groups/mutual groups,
Meetings at the office/community and Celebrations. Kofi who has been instrumental in
these workshops can lead in the whole IEC.
Interpersonal communication is useful in changing behavior and reducing stigma and
discrimination for the following reasons:

It facilitates interaction and allows people to share ideas

It provides space for detail information to be given and questions to be
addressed

It builds consensuses

It provides support for changing attitudes and behaviors

It addresses rumors and misinformation

It produces immediate feedback
Mass Media Communication forms on HIV/AIDS-related stigma and discrimination are:
Radio, Television, Print-newspapers, magazines, letters, Brochures, posters, Visual and
audio-visual, Internet, and Traditional sources (gong-gong). All the respondents need to
use mass media. Their faces can be censored when using the television.
5.3.3 Advocacy
It means taking action to secure the rights and interest of a group and obtain services they
need. Advocacy has a role to play in every intervention that needs to change attitudes,
behaviour and perceptions of people. Advocacy is about helping people say what they
want to say, secure their rights, represent their interest and obtain the services they need.
126
It promotes social inclusion, equality and social justice. People who need advocacy often
lack confidence to speak up, have been ignored, abused in the past, lost faith in services
and are unaware that services and support exist for their benefit. Kofi decided to go
public about his status which has helped him advocate for himself and other PLWHA.
This has helped him to travel to other places to meet world leaders. It can help other
PLWHA (Oheneba-Sakyi et al,2010).
The respondents are stigmatized and discriminated against in the community and
workplace. Apart from Kofi it has been difficult for them to come out freely. Techniques
that can be used by the respondents in the advocacy include

identifying people who can influence the needed change

identifying factors that can make it easier for the message to be accepted

identifying the types of support that the authorities can provide for the
advocacy

Identifying ways public policy and regulations can be influenced.
In the advocacy process questions need to be asked

What are the facts? The respondents are stigmatized.

What are the interests-needs, concerns, fears, values or wants? They need
understanding, compassion, love and care. Their fears are that they will be
judged as being promiscuous

What has caused it? Lack of knowledge

What are the immediate causes? Causes may vary from community to
community. The image of a thin looking person.
127

What tactics if any have been used before, did they work? Radio messages
created awareness but did not address the issue of stigmatization.

What has changed? Increased awareness of the condition.

What are the respondents to support or fight for? Advocate for positive
change in attitude towards PLWHA.

Who are you trying to influence or change to support the issue? Family,
friends, community and government.

What is the desired outcome? The respondents could live free from
stigmatization and discrimination
The following activities could promote effective advocacy

Identify and invite supporters. The larger the number of supporters the greater
their chances of success.

Form and join networks of coalition with other NGOs, donors, policy makers,
the media, politicians, public figures, civil society groups, professionals, women
and youth groups.

Attend seminars, public and community meetings, conferences and radio and
TV talk shows to make their voices heard.

Identify individuals and groups who are likely to oppose their view

Find out their reasons for the opposition

Do they have support from very powerful and influential people? If they do,
they should try to woo such people to their side or find a new strategy.
128
The following can be helpful. They include traditional rulers and opinion leaders,
assembly members and parliamentarians, Church elders and mosque leaders, civil society
organizations in the community, Youth groups, Men and women’s groups in the
community (Oheneba-Sakyi et al, 2010).
There is the need to collaborate with government agencies and NGOS. Every
Metropolitan/Municipal/District Assembly has a Focal Person on HIV and AIDS. The
respondents need to contact them for information. There is the need to also contact the
Ghana AIDS Commission, the United Nations Population Fund, the African Youth
Alliance and the National Technical Committee on HIV and AIDS. There are some
foreign organizations that also support advocacy on HIV and AIDS like USAID.
Areas in which advocacy on education and /or prevention of stigmatization and
discrimination can be used include:

Fighting stigma relating to HIV and AIDS

Healthy lifestyles, for example, good nutrition and exercise by all the
respondents

Positive cultural response to HIV and AIDs

Positive religious response to HIV and AIDs

Prevention of mother to child transmission of HIV

Support services for them

VCT service so that those who are positive can join the respondents

The respondents as educators
129
5.3.4 Healthcare facilities
The healthcare facilities should try as much as possible to use folders that are general to
all patients and not some reserved exclusively for PLWHA. There should not be wards
reserved for only PLWHA which brings stigma and discrimination but all patients should
be treated in other wards.
5.3.5 Family systems
Right from the basic school, the social and environmental studies syllabus should be
redesigned to inculcate the idea of the fact that, so long as one belongs to the family, s/he
should be treated well no matter his/ her behaviours or state s/he may find him/herself.
5.3.6 HIV/AIDS programmes
If it is possible, the cameras should be avoided when programmes on HIV/AIDS are
being organized. This would prevent the situation where images of PLWHA like Kofi
who want to educate others on the virus would not be stigmatized and discriminated
against by those who identify them on camera.
5.3.7 Religious institutions
The Ghana AIDS Commission should sensitize the churches not invite PLWHA forward
to pray for them. They can be prayed for in the congregation. This will reduce the stigma
and discrimination if their condition does not improve. The religious institutions should
also design programmes to make PLWHA cope positively with their condition.
130
5.3.8 Where PLWHA seek redress
The government agencies like DOVVSU PLWHA seek redress should be proactive in
their activities. This will not aggravate the already volatile situation of PLWHA as it was
the case of Vera. They should also be part of the associations formed for their welfare.
This will discuss pertinent issues that can help them reduce the stigma and
discrimination.
5.3.9 Fear of contagion
HIV programs should address multiple aspects of HIV stigma including personal,
cultural, institutional and structural factors. Interventions aimed at the reduction of HIVrelated stigma and discrimination should seek to reduce the lack of certainty by providing
information on how HIV is not transmitted in addition to building skills pertaining to
social interaction with PLWHA (Bos, Schaalma, & Pryor, 2008).
5.4 Limitation of the Thesis
This research work was confronted with access to relevant literature on the problem for
review. This was mainly because much work had been done on stigma on caregivers and
from the PLWHA perspective inside the hospital but not much had been done that
included both the inside and outside the hospital. This problem was solved by consulting
a wide area including the internet, libraries, newspapers, magazines and many such
materials for information and literature on the research problem.
There was also the problem of accessibility of people living with HIV/AIDS for the
interview to be conducted. The hospitals in Accra were not ready to disclose the identity
131
of the people living with HIV/AIDS. The associations that people living with HIV/AIDS
belonged were not ready to let the researcher gain access except for the fact that financial
assistance was to be given to them. To solve this problem, the researcher employed the
snowball research sample of the non- probability sample where one person living with
HIV/AIDS linked the researcher to other people he (PLWHA) knew.
When the person living with HIV/AIDS linked the researcher to the other PLWHA, they
were not ready to give information out since the information they had was, as they
claimed, personal to them. The researcher solved this problem by discussing issues with
them over snacks and any food they liked best. Approximately, the researcher spent ten
Ghana Cedis on each person living with HIV/AIDS before they could come up with
information.
Time available for the researcher to meet the PLWHA to discuss issues with them and
for the interview to be conducted was limited as they had little time at their disposal.
Almost all of them kept rescheduling their time for meeting the researcher. It took about
three meetings of two hours each before the required information the researcher wanted
was given. The researcher accompanied PLWHA and helped them in their chores and
businesses for trust to be developed before information was given
5.5
Suggestion for Further Studies
Based on the findings, there is the need to have another research on the effect of
stigmatization and discrimination on PLWHA in Accra
132
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UNIVERSITY OF EDUCATION, WINNEBA
FACULTY OF SOCIAL STUDIES
M. Phil (HUMAN RIGHTS)
INTERVIEW GUIDE ON HIV/AIDS STIGMA AND DISCRIMINATION
1. Sex:…………… Age:…………………………………………………………
2. Marital Status: …………………..Educational Background:…………………
3. Religious affiliation:……………Occupation:………………………………………
4. Number of children………… Number of years infected with HIV/AIDS………………
5. How did you identify you had HIV?.................................................................................
6. What was your response when you found out?.................................................................
7. Do you remember the mode in which you were infected?................................................
8. Did you tell your sexual partner? If no, why? If yes how did s/he respond to
that?........................
9. Do you have a sexual partner now? If yes is s/he aware of your status … if s/he is
aware what his /her response is? Why? If no, do you think you can get a sexual partner if
you tell the person you have HIV?...Why?..............
10. If no, how do you cope with that?........................................................................
11. If you have a sexual partner do you protect yourself against HIV re infection?
How?……
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12.Why do you participate in the world AIDS day every 1st
December?.........................................
13. Are you isolated from your family due to your condition? Why? What is the source of
the isolation? How does that affect you? How do you feel.............
14. Do you get isolation from friends/well wishers due to your condition? Why? How
does that affect you? How do you cope?...........................................................................
15. Do your employers know your HIV status? How did they find out? How do they treat
you now compared to when you were not infected? Why?.............................................
16. Have you sought for redress if they treat you negatively? Where?.................................
17. Do people who know your status see it safe to let your child play with children whose
parents have no HIV/AIDS? Why?..........................................
18. In all who and how many people have you disclosed your status to?.............................
19. Why did you disclose your status to them? How long did it take for you to disclose
your status to them? What has been the response since you disclose your status to
them?................
21. How does their treatment affect you and how do you cope?..........................................
22. How many people haven’t you disclosed your status to but they have found out your
status...
23. Through what means did they find out and how do they treat you?................................
24. How do you cope with their treatment?..........................................................................
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25. As compared to when you had no HIV, are you given good service when you go to a
shopkeeper to buy fresh vegetables in your community? Why? If no why and how do you
cope with that? If no, how do you cope?................................
26. Would your friends/community now invite you to social occasions as compared to
when you had no HIV? If No, Why and how do you respond to it?....................................
27. Would your family/friends eat at the same table with you as compared to when you
had no HIV? If no, how do you feel about that? Why do you think so?..............................
28. Would you have wanted your HIV positive status to remain a secret? Why?................
29. How have you been discriminated in your community in other ways? Why so?............
30. In what ways do you feel discriminated against in a health facility? Why do you think
it is so?..
31. Have you ever been forced to do HIV testing, where and how do you feel? Why so?...
32. Have you ever travelled before when what was the experience in relation to
HIV/AIDS?…
33. Do you feel ashamed of contracting HIV/AIDS, in what ways and why? …………
34. What are the right based approaches to support regarding fighting HIV/AIDS
stigma?.....................
35. Which other places can you seek redress if your rights are being infringed in relation
to your status?....................................................................................................................
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