HIV/AIDS STIGMA: AN INVESTIGATION INTO THE PERSPECTIVES AND

EXPERIENCES OF PEOPLE LIVING WITH HIV/AIDS

Regina Mlobeli (Dlakhulu)

Thesis submitted in fulfillment of the requirements for the degree of Masters of Arts
(Psychology) in the Department of Psychology, University of the Western Cape

SUPERVISOR : Prof L. Simbayi

YEAR : 2007
 Abstract

People’s attitudes towards people living with HIV/AIDS remain a major community
challenge. There is a need to generate a climate of understanding, compassion and dignity in
which people living with HIV/AIDS (PLWHA) will be able to voluntarily disclose their
status and receive the support and respect all people deserve. However, many people
experience discrimination because they have HIV/AIDS. In a certain area in Khayelitsha, a
township in Cape Town, a young woman was killed after disclosing the HIV status after
being raped by five men. This has become a barrier to testing, treatment, on quality of life
and social responses to HIV/AIDS. While many previous studies have focused on the
external stigma in the general population, there is a dearth of studies on stigma among
PLWHA themselves and hence the aim of the present study was to investigate stigma
attached to HIV/AIDS from the perspective of PLWHA. The focus group research method
was used to collect the data. Six focus groups consisting of 8-10 people in each group were
held in Khayelitsha drawn from organizations working with PLWHA and Treatment Action
Campaign (TAC). Data was analyzed using discourse analysis and the PEN-3 Model was
used to explain the themes that emerged from the data. Results showed that PLWHA are
affected by both enacted and internal stigma related to HIV/AIDS. It was found that the
experiences of discrimination and stigma often originate from the fear and perceptions of
PLWHA as immoral or living dead. They suffer rejection at home, work, school and in the
health care centres. Results also showed that PLWHA felt shame, guilt, hopelessness and
useless. This internalized stigma leads to withdrawal, depression, not to disclose the HIV
status and prevent people for testing for HIV and also affect health-seeking behaviour.
However, participants who were well informed and those who were members of the support
groups reported that they are coping with the illness and they are open about their HIV-status.
This suggests that education efforts have been remarkably successful in changing attitudes. It
is recommended that stigma reduction programmes should involve PLWHA, community
leaders and the community members to be part of the planning and implementation. It is also
important to look at the successful programmes already existing in the area and adapt them
and also to evaluate the effectiveness.
 Declaration

The author hereby declares that this whole thesis, unless specifically indicated to the contrary
in the text, is her original work.

------------------------------

R Mlobeli (Dlakhulu)
 Dedication

To My Father

It was sad to lose you before this mission was accomplished, but thank you for believing in
me and being always there for me during the process. I also dedicate this work to the
participants we have lost during this process.
 Acknowledgement

I would like to thank the following people for different contributions they have made to the
development and completion of this thesis.

Prof. Leickness Simbayi for your support, encouragement and being patient with me until the
end of this process.

The Penn-State University and Human Science Research Council for providing me
fellowship and the facilities which made it possible for me to finish my thesis.

Chelsea Morroni for support, friendship, motivation and containment which kept me going.

My husband, children and family for the inspiration, encouragement and providing me space
to finish this thesis.

PLWHA who participated in this study for sharing your experiences with me. Thank you for
trusting me with your sensitive life stories, without you this project was not going to be
possible.

Table Of Contents

ABSTRACT i
DECLARATION ii

DEDICATION iii

ACKNOWLEDGEMENT iv

CHAPTER ONE

INTRODUCTION 1

1.1 BACKGROUND OF THE STUDY 1

1.2 PURPOSE OF THE STUDY 4
1.3 AIM OF THE STUDY 5
1.4 SPECIFIC OBJECTIVES OF THE STUDY 5
1.5 RELEVANCE OF THE STUDY 5
1.6 LAY OUT OF THE REST OF THE THESIS 6

CHAPTER TWO
LITERATURE REVIEW

2.1 INTRODUCTION 7
2.2 THE NATURE OF AIDS EPIDEMIC 7
2.3 THE SPREAD OF HIV/AIDS 9
2.4 HIV/AIDS EPIDEMIS IN SOUTH AFRICA 11
2.5 STIGMA AND DISCRIMINATION 14
2.6 SOURCES OF STIGMA RELATED TO HIV/AIDS 16
2.7 PSYCHOLOGICAL IMPACT OF STIGMA ATTACHED TO
HIV/AIDS 20

CHAPTER THREE
THEORETICAL FRAMEWORK

3.1 BACKGROUND 25
3.2 SOCIAL THEORIES OF STIGMA 26
3.3 SOCIAL IDENTITY THEORY 27
3.4 SOCIAL ACTION THEORY 29
3.5 SELF EMPOWERMENT 30
3.6 INSTRUMENTAL AND SYMBOLIC STIGMA MODEL 30
3.7 PEN – 3 MODEL 31

CHAPTER FOUR
METHODOLOGY

4.1 METHODOLOGICAL FRAMEWORK 37

4.2 PARTICIPANTS 38
4.3 RESEARCH METHOD 40
4.4 RESEARCH INSTRUMENT 40
4.5 PROCEDURE 41
4.6 DATA ANALYSIS 42
4.7 REFELEXIVITY 43
4.8 ETHICAL CONSIDERATIONS 44

CHAPTER FIVE
RESULTS AND DISCUSSION

INTRODUCTION 46
THEME 1: PERCEPTIONS AND BELIEFS ABOUT HIV/AIDS AND DEATH
1.1 Association of HIV with other stigmatised diseases 49
1.2 HIV as any other illness 52

THEME 2: COMMUNITY RESPONSE 56

2.1 Positive community responses 59
2.2 Food as measure of acceptance or rejection 60

THEME 3: SOCIAL EXCLUSION, DISCRIMINATION AND HIV-STIGMA

FROM FAMILY MEMBERS 61
3.1 Parents involvement 62
3.2 Stigma and discrimination at school and work 65
3.3 Perceived modes of transmission 67
3.4 Food contamination stigma 68

THEME 4: OTHERING OF FEMALE PLWHA 69

4.1 Stigma visited upon children of PLWHA 71
4.2 Labelling PLWHA 73

THEME 5: HIV AND PROMISCUITY 74

THEME 6: CONTEXT OF CARE IN CLINICS 76

6.1 Formula feeding and HIV-stigma 77
6.2 Challenges faced by PLWHA about different colours of stickers on the
clinic folders 79
THEME 7: DISCLOSURE OF HIV CLIENT’S STATUS BY HEALTH CARE
PROVIDERS 83
7.1 Impact of confidentiality breach by health workers on PLWHA
seeking help 84
THEME 8: CHALLENGES FACED BY PLWHA ABOUT STAFF SHORTAGE IN
CLINICS 86
8.1 Perceptions about health care workers 87
8.2 Brief summary of results 89

CHAPTER SIX
CONCLUSSION

6.1 SUMMARY OF RESEARCH FINDINGS 91

6.2 LIMITATIONS OF THE STUDY 97
6.3 RECOMMENDATIONS FOR FUTURE RESEARCH AND
INTERVENTION 97
6.4 FUTURE RESEARCH 101
6.5 CONCLUSSION 101

REFERENCES 103

APPENDICES 109

Appendix A: INTERVIEW GUIDE

Chapter 1

Introduction
1.1 Background of the study

The tragedy of HIV/AIDS is not only the problem of HIV/AIDS-infected people

themselves, but also the problem of their families and their communities. Their families

are responsible for much of their nursing and care, both in and out of the hospital. HIV-

positive people do get pre-test and post-test counselling in hospitals or in clinics to assist

them with their test results and to handle the difficulties which they will face in living

with HIV/AIDS. However, after being diagnosed HIV/AIDS positive, they go back to

their families who did not get any form of information of counseling to prepare them for

the news. This impact negatively on the ability of the family to adapt to having a person

living with HIV/AIDS in the household.

Several researchers have argued that the lack of support from friends, family and

the community decreases disclosure and generates rejection and discrimination which

increases emotional distress experienced by those who are HIV positive (Bond, Chase &

Aggleton, 2002; Brown, Macintyre & Trujillo, 2003; Niang et al., 2003). As the family is

often the only source of care giving for HIV positive individuals, it is very important to

reduce stigmatization in this sphere (Herek & Glunt, 1988). HIV/AIDS-related stigma

within the family has also been described as the most subtle and insidious form of stigma

and the hardest to address effectively. In addition, Malcolm et al. (1998, in Brown,

Macintyre and Trujillo, 2003) further argued that by inhibiting open communication in

the family stigma makes disclosure in the family difficult and without disclosure

prevention and care become impossible.

Many people who are diagnosed as HIV-positive feel completely hopeless as they

think that they are going to die right away. HIV diagnosis can be seen as a change in a

way a person sees herself or himself from being successful or starting to do so to being

doomed in life. Their feelings of despair are doubled by the stigma, ignorance and often
violence that continue to underpin the epidemic in South Africa. In Khayelitsha one of the

Townships in Cape Town, reports from Radio Zibonele, a local Radio station, have shown

how people living with HIV/AIDS (PLWHA) have had to face being cast out of their

families and communities. It is important to understand the fear that underlies the

rejection and stigmatization experienced by PLWHA. According to Goffman (1963, in

Parker & Aggleton, 2002), stigma is a discrediting attribute and at some level culturally

constructed. He further argues that stigma can be seen as a negative attribute mapped onto

people, who in turn by virtue of their difference, are understood to be negatively valued

in society. This is supported by Parker and Aggleton’s (2002) acknowledgement that

stigma operates in relation to difference, and by making social inequalities reasonable it

creates and reinforces social exclusion. Similarly, some researchers have reported that

social exclusion of PLWHA that begins in the family and extends into the community has

been linked with poor self-esteem of PLWHA (Fieldblum, & Fortney, 1988; Herek &

Glunt, 1988; UNAIDS, 2002a). It is further argued that PLWHA with poor self-esteem

are more likely to engage in high-risk sexual behaviour, hence perpetuating the spread of

the pandemic (Duh, 1991; Fieldblum, & Fortney, 1988; Preston-Whyte & Brown, 2003;

UNAIDS, 2002a).

People’s negative attitudes towards PLWHA remain a major community challenge

in the fight against HIV/AIDS. It is further mentioned that families and friends of

PLWHA also experience stigmatization. In South Africa this process has exacerbated the

erosion of communal values among Africans including the support provided by the

extended family. For example, Bond, Chase & Aggleton (2002) acknowledged that the

care of orphans has become a major challenge to communities. By 2010, in countries

most affected by AIDS, at least 44 million children will have lost one or both of their

parents to all causes of these 44 million orphans 66% of parents will have died of AIDS
(Orphan and Vulnerable Children in the Region, undated fact sheet). In South Africa

apart from orphaning, the direct impact of the HIV/AIDS epidemic on children can

already be seen. This is the time to develop closer community relations rather than

generating rejection and harm.

Recently in Khayelitsha four men raped a 21-year-old female and after she

disclosed her HIV/AIDS status they killed her. There is a need to generate a climate of

understanding, compassion and dignity in which PLWHA will be able to voluntarily

disclose their status and receive both social support and respect that all people deserve.

However, many people experience discrimination because they are infected with HIV

and/or living with AIDS. Both HIV and AIDS have been given a negative and a

frightening face that makes infected people afraid to be open about their HIV/AIDS

status. This stigmatization continues to happen in the health care centre. Ms Y (a member

of a support group in Khayelitsha) indicated that one of the health workers at the clinic

looked at her file and before calling her name shouted in front of other patients that she is

tired of these AIDS people. After calling her name, she said “What do you want us to do

because you know that you’ve got AIDS so you are sick” (Ms Y, verbal communication,

2003). Furthermore, HIV-positive people get stigmatized as morally corrupt, and

irresponsible and sinners. Evian (1991) supported this point indicating that others think

that AIDS is a plague sent by God to destroy the sexual immorality that has overcome

people.

As shown in the case of the woman raped and killed after disclosing her status in

Khayelitsha, discrimination and violence against those with HIV/AIDS is prevalent in this

township. Stigma attached to HIV/AIDS makes people reluctant to come for treatment or

disclose their illness. Such reluctance is influenced by feelings of shame, guilty,

embarrassment, fear, sadness, and anger associated with the condition. UNAIDS (2002)
have reported that health workers fear of infection has jeopardized the quality of the

services and social support rendered to PLWHA (Lee, Kochman & Sikkema, 2002). It is

further argued that this has made PLWHA to be reluctant to access available health

services (Brown, Macintyre & Trujillo, 2003; Kalichman & Simbayi, 2003). It has

become clear that we cannot move forward in a significant way to responding to the

HIV/AIDS epidemic until we address the issue of stigma against PLWHA as we have

been doing for all persons with other diseases. Moreover, discrimination, denial,

exclusion and poverty have been a major obstacle in efforts to control the spread of the

epidemic.

Numerous studies have focused primarily on examining the attitudes of the non-

infected about those who are infected and on understanding why HIV is so stigmatized.

Although much work has been done there is a need to do more looking directly on stigma

related to HIV/AIDS from PLWHA’s own perspectives. This study looked at the

perceptions and experiences of PLWHA about the stigma related to HIV/AIDS. The

qualitative method was employed to achieve this aim.

1.2 Purpose and aim of the study

The main goal of this study was to identify the nature of HIV/AIDS-related stigma felt by

PLWHA in Khayelitsha and the impact this has on them. This information will help in

developing intervention programmes that will help to reduce these socially established

attitudes in their context using the language understood by the community.

1.3 Aim of the study

The main aim of this study is to investigate both the nature and the impact of stigma

against HIV/AIDS experienced by PLWHA in Khayelitsha Township in Cape Town.

1.4 Specific objectives of the study

The objectives of the study are:

a) To identify the nature of stigma against HIV/AIDS in Khayelitsha.

b) To determine whether such stigma affects PLWHA in Khayelitsha.

c) To determine how it affects PLWHA in Khayelitsha.

d) To identify possible ways of countering the stigma from PLWHA, using information

and insights from PLWHA themselves.

1.5 Relevance Of The Study

Khayelitsha residents have been reluctant to acknowledge the epidemic. The impulse to

distance themselves from the epidemic is less a response to HIV/AIDS than a reaction to

social issues that surround the disease and give it meaning. More fundamentally, it is the

predictable outgrowth of the problematic relationship between those infected and the

larger society, a relationship characterised by domination and subordination, mutual fear

and mutual disrespect, a sense of otherness and a pervasive neglect that rarely feels

benign.

Using both a social construction and activist approach, this study wants to provide

information that will enable people to acknowledge the devastating toll that stigma attached

to HIV/AIDS is taking on our communities so that community can have some understanding

of the epidemic and the ways in which they can implement programmes of education,

information, counselling and support services for everyone. This knowledge will help to

empower the community with skills on how they may interact with HIV-infected people and

promote a climate of tolerance and empathy within the community members regardless of

their health status.

1.6 Lay Out Of The Rest Of The Thesis

Chapter 2 reviews literature that is relevant to this study. It looks at the nature of the

AIDS epidemic, the spread of HIV/AIDS, the HIV/AIDS epidemic in South Africa,

sources of stigma related to HIV/AIDS as well as psychosocial impact of stigma attached

to HIV/AIDS.

Chapter 3 looks at the theoretical frameworks pertinent to this study.

Chapter 4 presents methodological issues for the study. Objectives and the rationale

behind the employed approach is provided, including discussion of participants, the

research method, research instrument, and the procedure. The chapter also looks at data

analysis, ethical consideration as well as reflexity.

Chapter 5 offers a thematic content analysis of perceptions and experiences of PLWHA

about both external and internal stigma they experience. Themes emanating from these

findings are comprehensively discussed linking them with the literature reviewed and

using PEN-3 model for identification and discussion of discourses found in the study.

Finally chapter 6 provides the summary of the findings of the study and discusses

about the study limitations. It also highlights meanings postulated by PLWHA attached to

these findings and their implications for HIV/AIDS stigma reduction interventions and

recommendations.

Chapter 2

Litarature Review

2.1 Introduction

Many studies have demonstrated that anybody can acquire HIV and die from AIDS (Duh,

1991). Yet a large portion of society still views HIV/AIDS as someone else’s disease.
Duh (1991) argues that the end result of this view is that people with AIDS have suffered

from lack of sympathy, lack of support, and, in many cases, discrimination. Therefore,

destigmatising HIV/AIDS remains a major challenge.

The AIDS epidemic has been accompanied by intensely negative public reactions

to persons presumed to be infected by HIV (Herek & Glunt, 1988). Several studies have

shown that the HIV pandemic has evoked a wide range of reactions from individuals,

communities, and even nations, from sympathy and caring to silence, denial, fear, anger

and violence (Brandt, 1988; Brown, Macintyre & Trujillo, 2003; Herek & Glunt, 1988).

Malcolm et al. (1998, in Brown, Macintyre & Trujillo, 2003) suggest that stigma is an

important factor in the type and magnitude of the reactions to this epidemic. It is

hypothesized that HIV/AIDS stigma can have a variety of negative effects on HIV test

seeking behavior, willingness to disclose HIV status, health-seeking behavior, and quality

of health care received, as well as and social support solicited and received (Herek &

Glunt, 1988; Jemmott & Lockes, 1984; Parker & Aggleton, 2003).

2.2 The nature of the AIDS epidemic

According to Evian (1991), for one to understand the nature of the HIV/AIDS disease, it

is firstly vital to distinguish between two important concepts, namely, HIV and AIDS.

HIV is the retrovirus virus that causes AIDS (Kalichman, 2003, p.17). Several researchers

mentioned that HIV belongs to a group of retroviruses called lent viruses (lenti means

“slow” in Latin) because it progresses slowly as it takes years before symptoms appear.

HIV virus directly infects the immune system the very system that the body uses to fend

off infections (Doka, 1997; Duh, 1991; Kalichman, 2003). The target of HIV is a specific

type of white blood cells called T- helper lymphocyte cells or T-helper cells (Doka,

1997). The T-helper cells control several branches of the immune system, they are like
the body’s army because they command other immune cells to destroy possible causes of

infection and disease (Doka, 1997; Kalichman, 2003). Overtime HIV impairs the body’s

ability to fight off many by diseases destroying T-helper cells. The immune system

attempts to control HIV by producing antibodies against the virus. However, the efforts

are only partly effective because HIV hides inside of T- helper cells, slowly infecting

more and more cells until the entire immune system can longer function (Doka, 1997;

Kalichman, 2003). A person who is infected with HIV does not necessarily feel sick if

they do not yet have AIDS and they can feel healthy for years (Berer, 1993; Schneider,

1994; Squire, 1993).

AIDS is the later stage of HIV infection. The progression from HIV infection to

AIDS depends upon how fast the body’s immune system is destroyed (Duh 1991). The

rate of destruction depends upon the number of viruses versus the number and quality of

T-cells in the body. A person is diagnosed with AIDS after the immune system becomes

HIV disabled or when the person becomes seriously ill from diseases that take advantage

of the broken-down immune system (Doka, 1997; Duh, 1991; Evian, 1991; Kalichman,

2003). In effect, AIDS is the terminal phase of infection with the HIV.

According to Parker and Aggleton (2002), there are three phases of the AIDS

illness. The first phase one has the HIV infection and often it is unnoticed and silent. The

second phase of AIDS the disease becoming more visible with a range of infectious

diseases. The third phase is potentially the most damaging of all as it involves an illness

of social, cultural and political dimensions, including stigma, discrimination and denial

(Parker & Aggleton, 2002).

Duh (1991) acknowledges that at the turn of the century infectious diseases such as

tuberculosis and pneumonia caused most of deaths worldwide. Not only did the powerful

antibiotics and vaccines afford the control of these killers but also environmental
improvement (Duh, 1991). Furthermore, infectious diseases of civilization like heart

disease, and cancer replaced other fatal diseases. As a result of the successes, the

scientists turned their research focus on these non-infectious diseases and put to rest the

infectious diseases. In the 1980’s a new fatal infectious disease, AIDS, awakened them

(Evian, 1991; Fieldblum and Fortney, 1988; Squire, 1993). Since then HIV/AIDS has

become the object of extensive medical and social research as well as policymaking,

widespread media attention, and policy discussion.

Although only discovered in the early 1980s AIDS has become the world’s greatest

threat to health and communities, as it has killed millions of people of all ages and

ethnicities (Duh, 1997; Kalichman, 2003; Lachman, Lachman, & Butterfield, 1988).

Several researchers state that due to its exponential spread, HIV will have devastating

problems for every facet of society in years to come (Aggleton & Homans, 1988; Collier,

1987; Doka, 1997; Evian, 1991; Jacoby, 1994; Squire, 1993)

2.3 The spread of HIV/AIDS

Perkel (1992) mentioned that from the time AIDS was first recognised as a distinct

syndrome, it became increasingly evident that it was spreading at an alarming rate.

Similarly, Duh (1997) postulated that AIDS is a new disease but it has become part of our

lives because our immediate family, friends and people in our communities get positively

diagnosed on a daily basis. The first case was identified in 1981 in the United States and

within eight years, 167 373 cases had been identified around the world. In 1982 the first

cases of AIDS were reported in Africa (Duh, 1997)

Doka (1997) postulated that the HIV virus likely existed for a period of time prior

to the 1970s and it probably did so by only infecting isolated groups of people. In

addition, researchers argue that significant social changes in the 1970s made changes in
patterns of mobility as well as in sexual behaviours, drug use, and blood use and

collection also created a context in which a viral disease such as HIV/AIDS could rapidly

spread. According to Doka (1997), when it emerged in the 1970s in Western Europe,

North America, Australia, New Zealand, and urban areas of Latin America, the disease

primarily infected gay men, drug users, and persons infected through blood products. He

also mentions that heterosexual and prenatal transmission represented a small but

increasing proportion of those infected. In Sub-Saharan Africa, parts of Latin America,

and the Caribbean, HIV was recognised about the same time, but it primarily spread

through heterosexual intercourse, use of blood, and unsterile needles (Doka, 1997).

Prenatal transmission is more common in Sub-Saharan Africa, Latin America, and the

Caribbean because both genders are affected equally. In Eastern Europe, the Middle East,

North Africa, Asia, and the Pacific the disease is beginning to emerge among those

engaged in high-risk behaviours (Doka, 1997). Based on the studies conducted by Bond,

Ndubani and Nyblade 2000 (in Bond, Chase & Aggleton, 2002), in Zambia they

estimated that 30-40% of infants born to women infected with HIV become infected

constituting around 21,000 infant infections each year.

In South Africa, the statistics indicate that HIV infections and deaths associated

with AIDS have rapidly increased in the past 15 years. According to UNAIDS (2004),

that it is estimated that up to 1500 new HIV infections occur in South Africa each day and

it is believed that as many 600 people die of an AIDS-related illness each day. According

to a 2002 national seroprevalence study, the overall HIV prevalence in the South African

population was 11%, with the highest rate (21%) occurring among people living in

townships and informal settlements (Shisana & Simbayi, 2002). This clearly shows the

seriousness of the burden of disease in South Africa. This has recently been confirmed in

a follow-up national survey by Shisana et al. (2005) reporting that HIV prevalence
amongst persons aged two and older is estimated to be 10.8%, with the highest rate

(17.6%) occurring in urban informal settlements followed by second highest (11.6%) in

rural informal settlements.

2.4 HIV/AIDS epidemic in South Africa

According to Dorrington, Bradshaw and Budlender (2004) and Rehle and Shisana, (2003)

nationally, the epidemic can be considered to be entering the mature phase. The Actuarial

Society Africa (ASSA) model estimates that 6.5 million people were infected with HIV in

the year 2002. According to the Shisana et al. (2005) household survey results this

number has now come down to 4.8 million persons aged two years and older living with

HIV/AIDS who are found in South African homes. It is argued that number of people

who are newly infected peaked in about 1998 and has begun to decrease. However, the

number of people dying from AIDS each year has only now started to increase.

Preston-Whyte & Brown (2003) highlighted that about 1800 new infections are

diagnosed on daily basis and by 2010 it is predicted that the mortality will result in

increasing numbers of children who are orphaned (report profile). This is supported by

the rapid mortality surveillance system established by the Burden of Disease Unit of the

Medical Research Council (MRC) and ASSA at the University of Cape Town (UCT)

which has shown that there has been an increase in young adult mortality and that by year

2000, AIDS had become the biggest single cause of death.

The Department of Health (2004) report of the national HIV and Syphilis Sero-

prevalence Survey of Women attending Public Antenatal Clinics in South Africa- 2003

estimated that in South Africa at the end of 2003 4.7 million people were living with HIV,

of whom 189,000 were babies. Nationally there has been an increase in HIV prevalence

as compared to 2002.The figures were as follows: national 2002 prevalence was 26.5%
and during 2003 the prevalence was 27.9%. From the findings made by the South Africa

Department of Health using a model developed making sure that at antenatal sites across

the country all woman coming for the first time are tested estimated that 34.5% of women

aged from 25-29 are infected with HIV, making this the age group with the highest

prevalence. It is further indicated that 29.5% of women aged 30-34and 29.1% women

aged 20-24 are HIV-infected (UNAIDS, 2004).

The Nelson Mandela/HSRC Study of HIV/AIDS (Shisana & Simbayi, 2002) which

was a household study looking at a proportional cross-section of society stipulated that

from 8428 people tested nationally, 11.4% were found to be HIV positive (also see Rehle

& Shisana, 2003). It was found that South Africans aged 2 years and older were living

with HIV/AIDS in 2002. It was found that the HIV prevalence was highest in Africans at

12.9%, followed by Whites at 6.2%, Coloureds at 6.1% and Indians with the lowest

prevalence of 1.6%. It was also found that females had a much higher HIV prevalence

(12%) than males (9.5%). These results also showed that HIV prevalence among adults

aged 15-49 years was 15, 6%, with 17.7% in women and 12.8% in men in this age group.

Rehle and Shisana (2003) pointed out that among Africans aged 15-49 years a prevalence

of 18.4% was found. It is further acknowledged that the epidemic was highest in people

living in urban informal settlements (21.3%) compared to those living in urban formal

settlements (12.1%) or those in rural areas (8.7%).

The follow up study by Shisana et al. (2005) shows a notable difference from the

previous survey in 2002. They found that the survey of 2005 found higher HIV

prevalence among youth 15-24 years (10.3% vs. 9.3%) and a similar prevalence in adults

25 years and older (15.6% vs. 15.5%). HIV prevalence in the 15-49 age group was 16.2%

in 2005 and 15.6% in 2002. Results show that the prevalence in children aged 2-9 years is
high. Boys aged 2-4 years had a prevalence of 4.9% and 5.3% among female children.

Among boys aged 5-9 years the prevalence is 4.2% and 4.8% among girls.

Shisana et al. (2005) argue that the observed high prevalence in South African

children in this age group is similar to that observed in Botswana and Zimbabwe. They

postulated that in Botswana the 2004 national HIV prevalence among boys aged 5-9 years

were 5.9% and for girls it was 6.2%. According to Central Statistical Office (2005, in

Shisana et al., 2005) for older children aged 10-14 in Botswana, it was 3.6% among boys

and 3.9% among girls. These results suggest that HIV prevalence among children is a

major problem in South Africa.

As in 2002, females are more likely to be living with HIV, and this proportion has

increased over time (Shisana et al. (2005). The largest increase in prevalence is found

among females aged 15-24 – 12% in 2002 compared to 16.9% in 2005. Furthermore, the

female to male ratio for HIV infection in 2005 is also highest among youth aged 15-24

years, while the prevalence in females is almost four times that of males – 16.9% vs.

4.4%. In addition, the findings of the RHRU Youth Survey conducted in 2003 (in Shisana

et al., 2005) found the similar HIV prevalence in males and females (4.8% and 15.5%).

These results suggest that South African youth are vulnerable to HIV infection. The HIV

pandemic is spreading most rapidly amongst young women. To address this problem it is

important to focus at the socio-environmental models which take account of issues such

as gender and power, and which recognise that intervention programmes need to be

culturally sensitive and tailored to local contexts.

2.5 Stigma and discrimination

According to Herek and Glunt (1988), stigma is defined as a mark of shame or being

discriminated against for any particular reason. They acknowledged that: “the focus of
social psychological research is not on the stigma itself but on the social relationships in

which a particular mark is seen as shameful or discrediting” (p. 886). Shisana (2004) has

said that stigma can be defined as consigning someone to a category that attaches on

him/her a label of being an undesirable. She further argues that the resulting shame leaves

the individual with a feeling of being personally responsible for their consigned

undesirable status. Goffman (1963, in Brown et al., 2003) postulated that stigma is an

undesirable attribute or quality that significantly discredits an individual in the eyes of

others. Moreover, stigmatisation is a dynamic process that arises from the perception that

there has been a violation of a set of shared attitudes, beliefs and values. Society thus

labels an individual or group as different or deviant. According to the Population Council

(2002) the concept of stigma is often used interchangeably with that of discrimination

(Population Council, 2002). Manser and Thomson (1999 in Policy project, 2003) further

argued that even though the word stigma and discrimination are often used

interchangeably their meanings do differ. Discrimination focuses on observable

behaviour, which means the unjustifiably different treatment given to different people or

groups (Bond, Chase & Aggleton, 2002; Brown, Macintyre and Trujillo, 2003).

Stigma depends upon the social representations or the dominant discourse

concerning the HIV illness. These are the ideas that are widely shared in ones community

in association with certain groups. The same idea is supported by Parker and Aggleton

(2002) who also indicates that other authors have defined stigma as social processes that

are linked to societal power structures.

There are two main different types of stigma, namely, the internal and external

stigma (Bond, Chase & Aggleton, 2002; Brown, Macintyre & Trujillo, 2003; Policy

Project, 2003). According to Bond, Chase & Aggleton (2002), internal or self-stigma is

manifested in self-blame and self-depreciation. It can also be viewed as perceived stigma

that is manifested in the fears that people have around being stigmatised if they are HIV-

positive and choose to disclose their status to others. In addition, felt stigma refers to real

or imagined fear of societal attitudes and potential discrimination arising from a particular

undesirable attribute, or disease such as HIV or association with a particular group or

behaviour (e.g., homosexuality and promiscuity) and this kind of stigma is internal stigma

(Brown, Macintyre & Trujillo, 2003; Policy Project, 2003).

Enacted or external stigma is when people are actually discriminated against

because they have or are thought to have HIV (Bond, Chase & Aggleton, 2002; Parker &

Aggleton, 2002). Jacoby (1994, in Brown, Macintyre & Trujillo, 2003) argues that

enacted stigma refers to the real experience of discrimination. It is further argued that the

disclosure of an individual’s HIV-positive status could lead to loss of a job, health

benefits, or social ostracism. According to Herek and Capitanio (1998, in Brown,

Macintyre & Trujillo, 2003), individuals who hold negative attitudes or who enact

stigmatising or discriminatory behaviour have been referred to as the perpetrators of

stigma and discrimination. In contrast, those with or associated with the condition (e.g.,

HIV) or the behaviour (promiscuous sex) are considered the targets of stigma. Case

studies and testimonies from Uganda, Malawi, Zambia, Zimbabwe and India support this

argument by describing HIV/AIDS-related stigma and its consequences for women as

particularly severe. Due to gender inequalities there are huge levels of violence against

women. Women are multiply disadvantaged by HIV/AIDS with their gender, familial and

economic positioning rendering them especially vulnerable. They are kicked out of

houses, blamed to be carriers and so on. It was found in the studies done in Uganda

Malawi, Zambia, Zimbabwe and India that infected people are forced to leave their

marital home after the death of husband from AIDS and that is probably one of the

reasons for taking time to be recognised (Bond, Chase & Aggleton, 2002)
2.6 Sources of stigma related to HIV/AIDS

AIDS has been identified as the deadly disease. For example, in Xhosa its name is

“Gawulayo”, which means killer. Van Vuuren (1997) indicates that AIDS is seen as a

disease far more contagious than it really is because it is regarded as a divine retribution

for certain aberrant lifestyles. People associate HIV/AIDS with people who lead a

promiscuous life and think that they are the only ones who are at risk of being infected by

HIV/AIDS.

According to Treichler (in Policy report, 2003), language is crucial to stigma.

Since the beginning of the pandemic, a series of powerful metaphors have been mobilised

around HIV/AIDS, which have served to reinforce and legitimise stigmatisation. These

have included describing HIV/AIDS as death, horror, shame, punishment, crime, war and

otherness.

According to Perkel (1992), because in the early days of the AIDS epidemic the

disease was associated with the male gay community in United States, stereotyped

attributions of blame and guilt for the disease were placed on their shoulders. Herek and

Glunt (1988) argued that HIV/AIDS is highly stigmatised because it is a disease that is

perceived as the bearer’s responsibility because the primary modes of transmission of the

infection are behaviours that are considered to be of choice. The antithesis to this

symbolisation is that of the innocent person with HIV/AIDS, infants and young children,

who are commonly positioned as devoid of any blame shame 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 decades. It is further

argued that in the Third World trends are different especially in Africa where homosexual
transmission is believed minimal. Consequently, it was estimated that by 1987 that the

heterosexual spread accounted for about 75% of HIV infections among African adults

(Doka, 1997; Duh, 1997).

As noted earlier, AIDS-related stigma is complicated by the epidemic’s association

with already marginalised 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. Weeks (1977, in Aggleton & 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. One can further argue that the sources of stigma

attached to HIV/AIDS come from identification of AIDS with persons and groups like

homosexuals and Blacks already stigmatised prior to the epidemic. 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 it is always someone else’s disease. It is further claimed that

identification of AIDS as a gay plague has potentially disastrous effects. It does not only

lead to the stigmatisation of the disease itself, but it also encourages those who do not see

themselves as gay to believe that they will not get it.

Gevisser (1996) made an attempt to understand the process involved in the media

constructs of public consciousness about AIDS by analysing a decade of AIDS clippings.

In his analysis of the language used in the headline GAY PLAGUE, Gevisser found that

by using the word “plague” the media was either consciously or subconsciously defining

a public consciousness of the epidemic that of retribution and punishment for sin. Busse

(1996) supported this further arguing that the representation of AIDS as a gay disease had

further problems for PLWHA. His findings noted that AIDS reporting retained its gay
focus long after HIV was identified as a heterosexual issue. According to him, blame

became a major feature of the epidemic. Busse explored the understanding that people

have of AIDS, where it comes from, and how it impacts PLWHA and informs their self-

image. Moreover, it has been suggested that stigma is applied with varying degrees of

force, depending on local moral judgements about how a PLWHA contracted HIV

(Population Council, 1999). For example, Ms A in Khayelitsha mentioned that she was

admitted at Jooste Hospital for HIV illness after she delivered an HIV-positive baby boy

and the people from her area sent messages that she deserved to be there but they only felt

pity for the baby as no one came to visit her until she was discharged (Ms A, Personal

communication, 2003). She further argues that the father of the child threatened to kill her

if she mentioned that the child is his. “I am scared to go for the AIDS grant because

people shout at me telling me that I misuse the tax payers money but they feel pity for my

friend who is getting money for TB illness” (Mr. R, verbal communication, Khayelitsha).

The above story illustrates the apprehension many people still have about HIV/AIDS,

despite the information and educational programmes about the disease. Results of a recent

study also show that people endorsed the statement that people who got AIDS through

sexual intercourse or drug use have gotten what they deserve (Lee, Kalichman &

Sikkema, 2002). Moreover, other studies have shown that the stigma associated with HIV

is greater than that of other stigmatised illnesses. People have approached HIV and AIDS

emotionally because of the perception that the main means of transmission

(homosexuality and injected drug use) involve immoral and criminal activity. Similarly,

HIV/AIDS is a disease that is perceived as the bearer’s responsibility because the primary

modes of transmission of the infection are behaviours that are considered voluntary and

avoidable (Lee, Kalichman & Sikkema, 2002). Some people end up dying silently of HIV

and AIDS while they have chance to seek help. In many countries, people infected with or
affected by HIV/AIDS belong to groups vulnerable to racism; racial discrimination,

xenophobia and related intolerance and that this has a negative impact and impede their

access to health care and medication. The condition that HIV and AIDS are contagious

always has greater stigma attached to them (Lee, Kalichman & Sikkema, 2002; Policy

Report, 2003).

Herek and Glunt (1991) pointed out that the stigma attached to HIV/AIDS as an

illness is layered upon pre-existing stigma. Kelly and Wood (1990, in Herek and Glunt,

1991) stated that stigma is not unique to the HIV/AIDS pandemic. It has been well

documented with other infectious diseases such as tuberculosis (TB), syphilis and

leprosy. In addition, it 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,

disfiguring or severe. It is also seen in diseases associated with transgression of social

norms such as socially unsanctioned sexual activity. Both these sets of criteria fit

HIV/AIDS (Herek & Glunt, 1988, in Population Council, 2002). Bond, Chase &

Aggleton’s (2002) study results from Zambia indicated that in the community people

frequently reported putting physical distance between themselves and persons suspected

of having HIV/AIDS. Similarly, Van Dyk (1991, in Kalichman & Simbayi, 2003) in a

South African national survey reported that 26 % of respondents would not be willing to

share a meal with PLWHA, 18% were unwilling to sleep in the same room with someone

with AIDS, and 6% would not talk to a person they knew to have AIDS.

Duh (1991) argues that regarding AIDS education, the public is given facts instead

of understandable and useful information. Moreover, he postulated that lack of

understanding is the reason for the hysteria about AIDS.

2.7 Psychosocial impact of stigma attached to HIV/AIDS

The high rate of HIV/AIDS transmission is a major problem in our communities. There is

no cure for AIDS but people continue to engage in risky behaviors as there are still large

numbers of people with repeat infections of sexual transmitted diseases (STDs) attending

clinics and lot of people dying of HIV/AIDS-correlated illnesses as well as an increasing

rate of AIDS orphans. The question is what prevents people from getting tested for HIV,

engaging in healthy behaviors, disclosing their HIV status and not to adhere with

treatment?

There are many educational programmes offered by health sectors and different

organizations to empower people with knowledge about HIV/AIDS. However, such

initiatives have failed to change risky behaviours. Researchers indicate that knowledge of

risk is not enough to change behavior since other external factors (like gender, power,

politics, culture, economic, religion, etc.) might influence it (Bandura, 1989; Perkel,

1992).

According to Bond, Chase and Aggleton (2002), their research conducted in

Zambia showed that in the household and family setting stigma was manifested in the

forms of verbal abuse, rejection, eviction and imposed restrictions on the person. In

addition, people with AIDS were subjected to blame, bitterness, anger, denial and the

withdrawal of treatment and care, sometimes leading to blatant neglect.

It is further argued 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 HIV-positive children infected during

pregnancy, childbirth or breastfeeding.

 According to the report of the Department of Health in South Africa, it appears that

women who are infected are stigmatized more that men (2000, in Policy Report, 2003).

Ms N, a facilitator of a 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.

One can imagine people dying in hospital beds, knowing there are many people who think

they have got what they deserve. The Bond, Chase & Aggleton (2002) mother–to-child

study done in Zambia shows that participants felt that men were likely to share their

status with their wives in the expectation of a supportive response, while women were

much less likely to disclose their HIV status to husbands for fear that it might precipitate

divorce, violence or prohibit disclosure.

According to research conducted by McGrath, Ankrah, Schumann, Lubega and

Nkumbi (1989) on the psychosocial impact of HIV/AIDS-related stigma, it was

discovered that subjects often do not tell their families that they have AIDS because they

perceive that stigma will result. Ms. N reports ‘When I was diagnosed positive I was

shocked, feeling guilty, hating myself, frustrated and having a fear of how my mother will

react when I tell her about my condition” (Ms N, Personal communication, Khayelitsha).

According to Lee, Kalichman & Sikkema, (2003), stigmatised individuals are vulnerable

to feelings of self-hatred which can result when they internalise society’s negative views

of them. Moreover, internalised stigma is likely to make an individual more sensitive to

both actual and anticipated rejection and stigmatisation by others, which negatively

affects disclosure. Marshal (2002, in Policy Report, 2003) describes enacted stigma and
discrimination as a collective dislike of what is unlike. It is further postulated that enacted

stigma is usually intentional, although people are not always aware that their attitudes and

actions are stigmatizing. For a disease like AIDS, stigma is felt not only by the patient

themselves but also by the family.

UNAIDS (2002) echoed that another effect of stigmatisation is that regardless of

HIV status, employees working in HIV/AIDS programmes may be seen by community as

HIV positive, and discriminated against. It is further agued that in the research literature

report, a woman was denied blessing of her marriage ceremony by a pastor because of her

involvement in HIV/AIDS work. 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 medication, but fear and denial. Ms L, co-ordinator of the

HIV/AIDS Campaign in Khayelitsha living with HIV says that fear of being stigmatised,

fear of rejection by the family and friends, and fear of discrimination from communities is

an enormous problem (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. According to Osborne (1997), PLWHA

need to reclaim their dignity that has slowly been eroded by discrimination, stigmatisation

and the lack of an acceptable positive role model, information support and psychosocial

support.

There is a belief that knowledge of one’s own HIV infection status is an important

intervention in controlling HIV infection. Most of the clinics have free Voluntary

Counseling and Testing (VCT) but rate of people accessing these services is still very

low. It is 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

Simbayi (2003) AIDS-related stigmas are another factor that probably influences seeking
VCT in South Africa. In addition, they argued that stigmatising beliefs about AIDS and

their associated fears of discrimination could influence decisions to seek HIV testing and

HIV treatment services. Similarly, Chesney and Smith (1999, in Lee, Kalichman &

Sikkema, 2002) postulated that the stigma associated with HIV/AIDS negatively impacts

people’s decisions regarding whether and when to be tested for the virus. Furthermore,

HIV-related stigma deters many HIV–positive people from seeking medical care and from

disclosing their serostatus to others because doing so can lead to rejection, discrimination,

hostility, and physical violence (Bond, Chase & Aggleton, 2002; Herek & Grunt, 1988;

Niang et al., 2003).

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). She claims that

if there is nothing done to encourage disclosure, the rejection and discrimination will be

generated and people will continue practising unsafe sex. Lee, Kalichman & Sikkema,

(2002) echoed that the choice to not disclose one’s serostatus can lead to an increased

sense of isolation and psychological distress among HIV-positive people and an increased

likelihood of engaging in unsafe sexual practices.

Lee, Kochman and Sikkema (2002) conducted a study looking at the internalised

stigma among PLWHA in Milwaukee and Madison, Wisconsin and New York City. They

found out that the majority of the sample experienced internalised stigma related their

HIV status. They mentioned that individuals who experienced high internalised HIV

stigma had been diagnosed with HIV more recently, their families were less accepting of

their illness, they were less likely to ever have attended an HIV support group, and they

knew fewer people with HIV. Furthermore, individuals with high internalised HIV stigma

also worried more about spreading their infection to others. Lee, Kochman and Sikkema

after controlling for the effects of key behavioural and psychosocial variables, mentioned
that the hierarchical regression analyses showed that internalised HIV stigma contributed

significantly to levels of depression, anxiety, and hopelessness.

Bourdieu, (1977, 1984) and Bourdieu and Passeron, 1977 (both in Parker and

Aggleton, 2003 argue that all cultural meanings and practices embody interests and signal

social distinctions among individuals, groups and institutions, then few meanings and

practices do so as clearly and as profoundly as stigma, stigmatisation and discrimination.

They further postulate that stigma and discrimination therefore operate not merely in

relation to difference but even more clearly in relation to social and structural

inequalities. Second, and even more importantly, stigmatisation does not simply happen

in some abstract manner. On the contrary, it is part of complex struggles for power that

lie at the heart of social life (Parker & Aggleton, 2003). The next chapter will discuss the

theoretical framework pertinent to this study.

 Chapter 3

Theoretical Framework

3.1 Background

Various theories have been developed to understand, predict and promote behavior

change. This study will draw on some models, which have either been developed

specifically to predict and explain the health behavior practices.

According to Schlebusch (1990), in scientific discourse a ‘model’ is a set of

assumptions one makes about any particular phenomenon in order to describe and

explain the structure and operations one observes. When information about a subject

is scant there are likely to be several models attempting to explain it, but as

knowledge accumulates some of the models turn out to be inadequate and drop out

until finally only one is generally accepted. Deacon, Stephney and Prosalendis, (2005)

postulated that theoretical approaches to stigma remain problematic. They

acknowledged that in order to be able to explain the functions or effects of

stigmatization one has to resort to functionalism (defining stigma in terms of

discrimination), and to be able to understand the role of the individual in

stigmatization we should resort to individualism (defining stigma as a problem of

individual ignorance). Philan and Phelan (2001 in Deacon, Stephney and Prosalendis,

2005) explains HIV stigma as a process and they came with these four processes;

1. People distinguish and label human differences.

 2. Dominant cultural beliefs link labeled persons to undesirable characteristics

like negative stereotypes.

3. Labeled persons are placed in distinct categories so as to accomplish some

degree of separation of ‘us’ from them.

4. Labeled persons experience status loss and discrimination that lead to unequal

outcomes.

This suggest that stigma should be understood as a problem of fear and blame, rather

than as a problem of ignorance or a mechanism of social control, this helps to

understand the stigmatization process without resorting to individualism or

functionalism (Deacon, Stephney and Prosalendis, 2005). Theoretical models that

take into account the interplay of individual and environmental factors are therefore

considered since the study of HIV/AIDS-related stigma is a social phenomenon.

Social Identity Theory, Social Action, Self-empowerment Model, PEN- 3 and the

Instrumental Symbolic HIV stigma model are described and their understanding of

behavior change is indicated. Therefore, the study focused on social theories of

stigma.

3.2 Social Theories of stigma

According to Kunkel (1975), one cannot study societal structures and processes

social problems and their causes and solutions, or be interested in grounding social

change, without models of man and of society. Airhihenbuwa and Obregon (2000)

postulate that the true experts in the methods of the production and acquisition of

knowledge in a culture are the people themselves. Schlebusch (1990) argues that
people’s behavior can be anticipated by understanding their social and cultural

background since many concepts are acquired by incorporating attitudes and beliefs

from social and cultural references. He further argues that reality is often defined by

the concepts of people hold and by their perceptions of the world, and people are

frequently unaware of the effect of concepts usually functioning at an unconscious

level can be considered to be a normal way of perceiving things. Therefore, it

becomes clear that terms such as normality, abnormality, illness, disease and health

are difficult to define because they present complex concepts which change and vary

with time according to people’s viewpoints and value systems (Schlebusch, 1990).

For him, people act in accordance with a world-view (e.g., views about child-rearing

practices, education, nutrition, health, etc.), which becomes important in determining

an individual’s behavior in such matters. It means that if one understands such views

one can anticipate how people will behave when faced with these issues.

3.3 Social Identity Theory

According to Tajfel (1959, 1978, 1981, in Foster & Potgieter, 1995), social identity

theory (SIT) proposed that intergroup bias might be the direct result of the perception

by individuals that they belong to a common social category. Social categorization

does not divide according to locations but it defines one’s place in society. The

perception of people in terms of categories or groups on the basis of criteria has

relevance to the classifier. For example, people who use ways of transmission as a

classifying criterion will have strong argument that those who lead a promiscuous life

deserve to be HIV- positive but feel pity for those who are infected through blood
transfusion. Tajfel, 1959; Bruner 1957 and Wilder 1981 (in Foster & Potgieter, 1995)

indicate that social categorization forms part of a fundamental cognitive process

known as categorical differentiation. They further argue that because we cannot

process the infinite array of information present in our environment, people develop

short cuts by categorizing objects and people into groups. The complexity of the

environment is reduced through the operation of the principle of accentuation. This

describes the phenomenon whereby the similarities within a group and the differences

between groups are exaggerated or accentuated. This is accompanied by the

differences between groups: we are HIV-negative and they are positive, we are not

like them, they are very different. Furthermore, Foster and Potgieter (1995) argued

that the perception of social group is characterized by an evaluative (positive or

negative) and an emotional (feeling of like, hate) component.

It is through the process of social comparison that the evaluative dimension of

group membership is determined (Foster and Potgieter, 1995). Therefore, one’s own

group is compared to specific out groups using some dimension of comparison.

Furthermore, the outcome of this social comparison process is a graduation

differences, termed a status hierarchy. In addition, if a group is perceived to be

superior to another on some relative dimension it has high status; if it is perceived as

inferior, it will have low status. In other words, the more positive the characteristics

attributed to the group, the higher that group’s status will be. A central tenet of SIT is

that individuals have a need for, and thus motivated to strive for, appositive self-

concept. It follows that if the outcome social comparison bestows a negative social
identity on in-group members, these individuals will try to achieve some type of

change so as to gain a positive social identity (Foster and Potgieter, 1995).

Parker and Aggleton (2003) claim that stigma plays a key role in producing and

reproducing relations of power and control. Furthermore, it causes some groups to be

devalued and others to feel that they are superior in some way. Therefore, stigma is

linked to the workings of social inequality and to properly understand issues of

stigmatization and discrimination, whether in relation to HIV and AIDS or any other

issue, requires us to think more broadly about how some individuals and groups come

to be socially excluded, and about the forces that create and reinforce exclusion in

different settings.

3.4 Social Action Theory

Foster and Potgieter (1995) indicate that the acceptance that the structure of social

relationships between groups is neither fixed nor unchanging incorporates the

possibility of social change. Social change is the collective attempt to change the

social position of the in-groups. This means that if the community perceives HIV-

positive people as an out-group, models like social creativity should be applied, as

they are essentially an attempt to redefine some existing group characteristics in

positive terms. Positive ones should replace negative labels and attitudes towards

HIV/AIDS.

Foster and Potgieter mentioned another model which is radical, as political

protest, strikes and revolution to restructure society, that is, social action. They also

suggested the social mobility model in social change where people perceived to be at
low status group (like PLWHA in this study) will be motivated to higher status

focusing on values and standards.

3.5 Self-Empowerment

According to Airhihenbuwa (1995), among approaches to health education /

promotion and disease preventions, the self-empowerment method is believed to be

more encompassing and more effective than preventive-medical or radical-political

approach. It is further agued that the preventive-medical approach focuses on

influencing individual decisions leading to the adoption of positive health behaviours,

whereas the radical-political-approach focuses on manipulating the social and

political environment so as to tackle ill health at its foundation (Tones, Tilford &

Robinson, 1991, in Airhihenbuwa, 1995). Airhihenbuwa (1995) further argues that the

self-empowerment approach facilitates choices for individuals and communities

within the context of the socio-cultural and political environment. Social norms

created within certain culture could influence the thinking or judgement of what

constitutes risky or health behaviours (Preston-Whyte & Brown, 2003). At the same

time some people use cultural explanations as an excuse when they are asked to

change life threatening behaviours.

3.6 Instrumental and Symbolic Stigma Model

Herek and Capitanio (1998 in Deacon, Stephney and Prosalendis, 2005) use the term

“instrumental stigma” to describe intended discrimination based on an inflated fear of

contracting HIV, as well as intended discrimination based on resource concerns due to

judgements about the likely social contribution of PLWHA. For them “symbolic

stigma” described the kinds of moral judgements that may cause a third kind of

discrimination, such as refusing to provide the same treatment for intravenous drug

users and innocent victims of HIV/AIDS because the former are judged to be more

blameworthy for contracting the disease or not allowing PLWHA to serve on a school

board because they are judged as immoral (Deacon, Stephney and Prosalendis, 2004).

In Herek and Capitanio’s Instrumental Symbolic stigma theory (1998 in

Deacon, Stephney and Prosalendis, 2004) it is argued that it is not all the

discriminating factors that would result in stigma. Herek and Capitanio further argue

that although both instrumental stigma and symbolic stigma are socially constructed

and may lead to discrimination against PLWHA, it is not really useful to try and

define them both as stigma as they do not originate from the same social cognitive or

emotional processes or respond to the same kinds of interventions. This discussion on

instrumental and symbolic stigma has key implications for how one designs

interventions. It is further argued that there is a need to address discrimination based

on moral judgements, risk and resource concerns in different ways (Deacon, Stephney

and Prosalendis, 2004). One way of looking at stigma is through a cultural point of

view.

3.7 PEN-3 Model

I think when implementing education programmes one has to look at cultural

dimension and evaluate the relationship between education and power or cultural

issues. According to Parker and Aggleton (2003) sociological emphasis on the

structural dimensions of discrimination is particularly useful in helping us think more

sensibly about HIV and AIDS-related stigmatization and discrimination. It is

acknowledged that there is a need to reframe our understandings of stigmatization and

discrimination to conceptualize them as social processes that can only be understood

in relation to broader notions of power and domination.

Airhihenbuwa (1995) developed the PEN-3 model which allows the kind of

flexibility that encourages intra-cultural diversity such that the process should be

engaged each time a programme is conceived. In some environments the role of

experts such as traditional healers, religious practice, and of interpersonal

communication are also born in mind. One has to look at the ideas that circulate in a

society and constitute common sense and also focus on the specific processes by

which these contents are shaped. The PEN-3 model challenges health and cultural

workers to address health issues at the macro level as well as the traditional micro

level of health programme interventions (Airhihenbuwa, 1995). He further argues that

this method incorporates existing models/theories and frameworks in health education

while drawing on theory and application in cultural studies.

The PEN-3 model has three categories (listed according to the acronym

PEN) within each of three dimensions (Airhihenbuwa, 1995). The first

dimension is health education with three categories the person, extended

family and neighbourhood. HIV/AIDS is not only the problem of the infected

person it also affect the family and the neighbours should also be part of the

health education programmes that will be developed to decrease the stigma

related to HIV/AIDS. They are the ones who know the stigmas. The second
dimension of PEN-3 according to Airhihenbuwa is the educational diagnosis of

health behavior. Moreover, he mentioned that this dimension evolved from the

confluence of the three health-related models the health belief model (HBM),

theory of reasoned action (TRA) and other frameworks that came before.

However, these theories have no central role in culture. He postulates that the

PEN-3 extends the possibilities of this dimension by placing culture at the core

of health promotion and disease prevention programmes. The factors in this

dimension are perceptions, enablers, and nurturers (Airhihenbuwa, 1995). It is

argued that perceptions comprise the knowledge, attitudes, values and beliefs,

within a cultural context, that may facilitate or hinder personal, family and

community motivation to change. For example, the understanding and morals

at Khayelitsha about stigma related to HIV/AIDS could differ from the

understanding and morals at Gugulethu although it might be the people of the

same culture. Values and morals differ from community to community. Other

dimensions are enablers and nurturers. Availability of resources is not the

same in all the communities especially in the disadvantaged communities like

Khayelitsha whereby they have limited resources and also the degree to which

health beliefs, attitudes and actions are nurture, by family, friends and

community differs (Airhihenbuwa, 1995).

The third dimension of Airhihenbuwa’s PEN-3 model is the cultural

appropriateness of health behaviour. This is the critical dimension as it situates

culture in dynamic and interacting forces that manifest themselves in individual,

family and community behaviour. This dimension consists of the categories of

positive, existential, and negative behaviours (Airhihenbuwa, 1995). For example, a

disease like cancer was stigmatized and people were not open about it and ended up

being silent and die alone while they could have gone for help. Today they are open

because it is less stigmatized so it would be wise to encourage the programmes that

managed to come with positive behaviour. The other dimension is existential

behaviour. One can say in the case of mass media that plays a leading role in

transforming expert knowledge into lay knowledge and its influence on people’s

social psychological constructions of phenomena is powerful. If the message has no

harmful health consequences we should not blame it for failure because it is

misunderstood. According to Airhihenbuwa (1995), the last dimension is negative

behaviour. Furthermore, these are the beliefs that are based on the health beliefs and

actions that are known to be harmful to health. For example, in the case of people

who believe that AIDS is the gay plague and continue practicing unsafe sex since they

think it is not their problem. These beliefs should be examined and be understood on

their cultural context before attempting to change them. According to Airhihenbuwa

(1995), the process of culturalizing health knowledge, attitudes and practice does not

assume that people are powerless or ignorant. He further argues that the process

affirms diversity in the way people construct their locations. Moreover, what is

positive or negative cannot be based on a universal notion promoted in economic

development.
 THE THEORETICAL MODEL: PEN-3

Cultural Identity Relationships &

Person Expectation
Extended Family Perceptions
Neighborhood Enablers
Nurturers

Cultural
Empowerment
Positive
Existential
Negative

Figure 1

One can assume that social behaviour in association with various social factors

plays a definite role in health care and disease. Poor and underdeveloped communities

like Khayelitsha have less access to health care and are associated with shorter life

expectancy, increased risk for HIV/AIDS, substance abuse, higher crime rate,

unemployment and poverty. Large numbers of people every year are affected by

STDs which exerts an enormous cost in terms of suffering, lost jobs, medical care,

rejection by family and community members and infants born with infections. To

combat this pandemic sexual activity constituting health-risk behaviours such as

AIDS should be approached from a psychological point of view applicable for that

community. The PEN-3 model helps us to identify the kinds of stigmas that will come

up when we analyze our data so that we could come up with relevant programmes to
reduce stigma. It is also important to follow the PEN-3 model because it looks at the

programmes that worked well in the area and also involve the people in that area

when planning intervention. This will help not to repeat the intervention programmes

that already exist and also makes possible for the evaluation of existing programmes.
 Chapter 4

Methodology

4.1 Methodological framework

The qualitative method was used to allow the complexity of issues, depth of

understanding and flexibility of exploration around touchy subjects since the study is

interested in the feelings and perceptions and experiences of HIV/AIDS-positive

people (Schroepf, 1991). According to Denzin and Lincoln (1994), it is difficult to

give a clear definition of qualitative research since it involves a multiple set of

overlapping interpretative practices by individuals to their actions, which are located

within a particular social context, without dehumanising them. Often it is defined as a

multi-method paradigm that attempts to make sense of subjective meanings. Thus,

this study seeks to validate HIV-positive people’s subjective perceptions and

experiences of stigma exerted against them.

It is the socially constructed positions that influence the way in which

HIV/AIDS-positive people respond to and experience the dynamics of being

stigmatised and rejected. However, not all HIV/AIDS positive people go through the

same experiences. Most of quantitative research of perceptions and experience about

stigma related to HIV/AIDS largely concentrated on people’s experiences from

which they made inferences about infected people’s social reality. Quantitative

research has undermined HIV-positive people’s ability to construct their own social

reality. Qualitative methodology is therefore an effective alternative approach in

addressing these biases. However, it is also criticized for being biased because of lack
of accurately defined procedures for ensuring objectivity. Neither of these approaches

is right or wrong but they complement each other in a constructive manner (Banister

et al., 1994; Patton, 1990). Huysamen (1997) supports this by pointing out that the

labels quantitative and qualitative are misnomers as the two approaches complement

each other rather well.

4.2 Participants

The sample was composed of six groups of 57 Xhosa-speaking PLWHA ranging from

6 to 10 per group as shown in Table 1. The participants were drawn from two

organisations working with HIV/AIDS positive people in Khayelitsha, namely,

Treatment Action Campaign (TAC) and other HIV/AIDS Support Groups in the area.

These organisations were chosen due to the fact that we were looking for people who

have disclosed their status and in who were in terms with the illness even if they have

not yet disclosed in their families. This worked because 30% of the participants were

people who have disclosed their status in the support group but not yet disclosed in

their families due to some problems with disclosure. About 98% of the participants

were unemployed and 60% were living in informal settlements with no formal

services like water, toilets and electricity. The subject’s ages were from 15 to 49

years old. As nearly all of the participants were unemployed, it allowed the

researcher to do the groups during the week from Friday and during weekend.

In terms of sex, Table 1 shows that two groups were composed predominantly of

females with one or two males in each group. The other two groups had equal

numbers of males and females. Finally, the last two groups had only females. Four
groups were gender mixed with two female groups although the idea was to try also

have one male group and one female group; According to Banister et al. (1994),

giving gender groups a space within which they can vocalise their accounts is a way

of empowering them because they can connect with sensitive issues in their lives.

Participants told us that they feel free to share ideas in a gender mixed group because

most of the time when they meet they are used to being together. It was indicated that

many support groups did not have many male participants although now they have

formed an organisation or a support group for males which was busy campaigning

during the data collection time.

Characteristics of participants in each focus group

Group Male Female

One 2 8

Two 5 5

Three 0 10

Four 4 6

Five 0 9

Six 0 8

Total 11 46

Table 1: Summary of sex composition of focus groups in the present study

 4.3 Research method

Focus groups were an appropriate and potential tool to be used for this study.

According to Patton (1990), a focus group interview is an interview with a small

group of people on a specific topic. Groups are typically eight to 12 people who

participate in the interview for 1 to 2 hours. This qualitative research method

originated in market research but has been used increasingly in social research

generally because within a limited period of time real-life data can be captured from

more than one person in a social context where people can consider their own views

in the context of the views of others.

Patton (1990) further argues that facilitating and conducting a focus group

interview requires considerable group process skills. It is important to know how to

manage the interview so that one or two people do not dominate it, and so that those

participants who tend not to be highly verbal are able to share their views. In this

respect, the facilitator and co-facilitator were both trained on how to conduct focus

groups prior to data collection as part of the Penn State University (PSU); Human

Science Research Council (HSRC) and the University of the Western Cape (UWC)

Research Capacity Development Research Project on Stigma and also had previous

experience in this field from the studies they have participated in before this one.

4.4 Research instrument

A focus group guide was used (see Appendix A). The research questions were

formulated with the help of the project research team mentioned above and were also

taken to the PSU’s Institutional Review Board (IRB, i.e.) Ethics Committee for
approval before use. There were five open-ended questions each with four to five

probes. Open-ended questions were chosen so that people could explore their feelings.

4.5 Procedure

The permission was first asked from the co-ordinators of both TAC and other NGOs

working with PLWHA in Khayelitsha to conduct the study. Permission of the

participants was then also sough individually. Due to the sensitivity surrounding the

acknowledgement of one’s HIV/AIDS status, the focus groups were conducted at

TAC and other community settings like houses and churches places where they were

used to and felt comfortable to meet at with the permission of the people in-charge.

Furthermore, the permission of participants to audiotape the session was sought.

No one refused to take part in the study and all participants gave us permission

to audiotape them during the sessions. Both the facilitator and co-facilitator managed

to create a non-threatening climate enabling participants to express their views freely.

Each focus group lasted approximately 1-2 hours and was conducted in Xhosa the

language used by all participants. Each group was audio taped with consent of the

participants. The cassette tapes were transcribed in Xhosa after transcriptions back-

to-back translation was done changing from Xhosa to English and back from English

to Xhosa and independently ensuring that there was no change in meaning and

interpretation. Written notes were also taken during interviews.

4.6 Data Analysis

To analyse data, the discourse analysis approach was employed since concentration

was on the way language produces and constrains meaning as spoken by individuals.

According to Foucault (1980), language permits us to go beyond the linguistically

reflected power exchanges between persons and groups to an analysis of the

structures within they are deployed. This is done by coding as much of the recurring

discourse as possible in order to make sense of it. The purpose of coding the data is

to achieve overall interpretation of cumulative meaning. This is supported by

Fairclough (1992) indicating that force of utterance, that is, what sorts of speech acts

(promises, requests, threats) they constitute, the coherence of text and the

intertextuality of texts constitute the framework for analysis. Thus, analysis of

discourses involves sifting out repeating themes.

According to Foucault (1980), discourse can be defined as an assemblage of

statements occurring in an ongoing conversation. Furthermore, Henriques (cited in

Fairlough, 1992) indicated that in the perpetuation of, and the appropriation of the

individual as he/she is positioned by particular discourse forms the social framework

of meanings into which we are inserted, the ways we make sense of, and regulate, our

experiences. It is rooted in our everyday knowledge and shapes and perpetuates

concerns and beliefs that people hold. Thus, a person who is living with HIV/AIDS

may talk about labels attached to HIV/AIDS. The statement or talk would be seen as

the discourse. The frequency of the text of the talk will position an individual

stigmatised into a social framework and will indicate how he is affected.

 Fairlough (1992) also acknowledged limitations of the approach mentioning

that in discourse each statement can be placed in more than one category because the

meanings conveyed in one statement often relate to a range of discourses, some of

which are contradictory. The strength of the interpretative picture of the analysis is

developed through the repetition rather than through microanalysis of every word.

Furthermore, to show how analysing daily language usage reveals slippages of

understanding and of subjectivity. It also aims to deconstruct the assumptions which

underline the apparent simple ideas expressed through a statement

4.7 Reflexivity

According to Banister et al. (1994), reflexivity is one of the important characteristics

of qualitative research through which knowledge is produced and constructed. It lies

on the basis of continuous critical evaluations of personal experiences about the

research encounter. The researcher had a co-facilitator who observed the researcher’s

characteristics that might have had some influence in the findings. This helped with

the objectivity of the study. The fact that the researcher was involved in a study

looking at the protocol used in clinics for STDs where the researcher was a simulated

client for a year has exposed her to the problems PLWHA encounter. Through

exposure in these conditions motivated the researcher to be more involved in

programmes related to HIV/AIDS. The researcher became a TAC volunteer and HIV

counsellor in the community. My social identity as researcher was located in relation

to participants. This helped the researcher in terms of recruiting participants in this

study. Having someone they trust and could identify themselves with as their
facilitator made them comfortable to be open during discussions. Hollway (1984)

supports this idea, arguing that researcher’s own positioning in social context and the

significance of reflexivity in the research are important in discourse analytic research.

Potter & Wetherewell (1987) acknowledged that sensitivity to power relations

embedded in research practice and an imperative to locate one’s own subjectivity as

researcher is central. In this study the researcher was concerned about power relations

emerging in the discourses of participants as well as those evident in the research

process itself. In this respect, the researcher was aware of the power inequalities

between the researcher and participants and amongst PLWHA themselves. Secondly

the training in Psychotherapy and Counselling Psychology the researcher obtained at

UWC and HIV-Lay Counselling received at Aids Training and Information centre

(ATIC) helped the researcher to be neutral during the group sessions so that her

personal views and experiences about HIV/AIDS-related stigma did not influence the

outcomes of the study in any major way. The co-facilitator was also observing, taking

notes and taking care of the recording machine. This was done in order to increase the

validity of the study.

4.8 Ethical Considerations

Permission to conduct the study was sought from the Post Graduate Studies

Committee in the Faculty of Community and Health Sciences and Senate. Participants

were informed about the present study from the beginning and their permission to

participate was asked. So the researcher read through and explained the informed

consent to the clients. Confidentiality was assured to protect the identity and to
respect privacy of the participants. Participants were informed that they have the right

to withdraw at any time when they do not feel comfortable to continue with the

process. They were asked if they are comfortable to be given numbers during

discussion so there would be nowhere in the study where their names will be

mentioned. They agreed and this worked very well although two participants

mentioned their names during discussion and claimed that they were okay with that.

They were told that the information gathered in this study would be made available to

TAC and other NGO’s in the community so as to inform their future intervention
 Chapter 5

Results And Discussion

Introduction

The data provide information about the perceptions and experiences of PLWHA about

the stigma related to HIV/AIDS experienced from the community members and also

health providers. The analysis draws out central themes related to the key questions

asked about HIV-related stigma. Eight themes were identified with each theme having

various having various sub-themes. The main themes are listed below:

1. Perceptions and beliefs about HIV and death

2. Negative community responses

3. Social exclusion, discrimination, and HIV-stigma from the family members

4. Othering of female PLWHA

5. HIV and promiscuity

6. Context of care in clinics

7. Disclosure of HIV client’s status by health care providers

8. Challenges faced by PLWHA about staff shortage in clinics.

In each theme discourses about the beliefs and practices related to perceptions,

enablers and nurturers (educational diagnosis of health behaviour) will be explored.

According to Airhihenbuwa’s (1995) PEN-3 model, this examination will relate to a

particular health problem in different segments of the family or community. On the

basis of the information generated the researcher will categorize the different beliefs
and practices found into positive, existential and negative beliefs (cultural

appropriateness of health behaviour). This framework will be applied using some

information from the literature reviewed in this study. Then a short summary of the

results will also be presented in this chapter.

Theme 1: Perceptions and beliefs about HIV/AIDS and death

When they were asked their views about HIV/AIDS the most pervasive perception

was the view that HIV/AIDS is seen as a death sentence. Their knowledge and belief

about having HIV was akin to death. “Having HIV/AIDS” led to fear of

overwhelming negative consequences.

Firstly, participants from the six groups indicated that being HIV-positive your life

has came to an end with death a likely outcome. This negative perception of viewing

HIV as death sentence has nurtured fear and negative behaviors as illustrated below:

“To me having HIV/AIDS is synonymous with death although there is medication to

lower its impact” (Participant 5, Group 4)

“For me to be HIV- positive is to face a death sentence that is why most people

decide not to know their status because after you are diagnosed positive you will

know that your life is finished unlike the time you were not aware of your

status”.(Participant 4, Group5)
Furthermore, it was mentioned that from the moment HIV/AIDS was identified

messages of death accompanied the epidemic. These messages have spread rapidly

fuelling anxiety, and fear of death against PLWHA as well as those who are most

affected. Participants mentioned that the fact that HIV/AIDS was “advertised” in their

community at the beginning as a killer and that it affects those who live promiscuous

lives has made people to be afraid to be open about the illness and have made them to

become hopeless since they know that they are going to die anyway. The existential

belief nurtured this negative perception and a barrier is postulated in the following

message displayed by the participant from the groups:

“The first time you discover your status you think you are going to die. You worry

about dying. I think the reason is because of the messages that HIV/AIDS is

incurable.” (Participant 9, Group 2)

Treichler (1999 in Policy Project, 2003) pointed out that since the beginning of the

pandemic a series of powerful metaphors were used around HIV/AIDS that have

reinforced and legitimized stigmatization. These existential included HIV/AIDS as

death, horror, shame, punishment, crime, war and otherness. Various perceptions were

expressed about PLWHA and death. It was noticed that the environment became tense

and the voices were softer when they responded to this question. Some voices were

also expressed like feeling hopeless, will live short lives and will not be accepted by

community members. It is also possible that the death of young people in the
community might have reinforced this perception. The existential nurtured these

negative perceptions are illustrated by the following enablers:

“To see young people dying everyday worries me and think that I will also die soon”

(Participant 4, Group 6)

“When you go to funerals you often see young people been buried. It’s often young

people who are involved.” (Participant 4, Group 1)

It is evident that the messages that were brought in the beginning about HIV/AIDS as

a killer has instilled the same extent of fear for those who are HIV terminal ill and of

those who have not yet in that level. From the above examples, it seems as if this

existential is also motivated by different processes such as seeing someone dying of

HIV, seeing someone suffering from AIDS, experience it personally or the fact that

you know that it is a killer.

1.1 Association of HIV with other stigmatized diseases

Stigma is most common with diseases which are seen as incurable or severe. It was

mentioned that people respond negatively to PLWHA because of the life threatening

nature of the disease and its association with death. This negative perception includes

association of HIV with other historically stigmatized diseases, as Syphilis, Leprosy

and Tuberculosis (TB). Herek and Glunt (1988) argue that the stigma attached to

AIDS as an illness is layered upon pre-existing stigmas.

“When your blood is weak and may be you did not tell them that you are sick again,

even if you were sick from fever they will say that you are lying you know what is

wrong. They will say that AIDS has got you. They think they know the symptoms

whereas they do not. A person with TB is associated with HIV/AIDS these days; if you

are a HIV-positive person they say you also have TB these days. So this means that

we need education” (Participant 6, Group 6)

“If you have TB, it is assumed that you are positive” (Participant 9, Group 3)

It was reported that if you were HIV-positive, people would not want to share the

resources with you. Participants in this study also mentioned that in Khayelitsha some

people believe that if you have HIV you are going to die and it will be a waste to

invest resources in dying people. According to Patient and Orr (2003 in Deacon,

Stephney and Prosalendis, 2005) in certain resource-poor contexts where there is little

state support, some beliefs about PLWHA will have greater impact (e.g., “they will be

a drain on resources”) and create more of focus for stigmatizing ideology. The

negative existential and barrier that HIV-positive person is wasting resources is the

societal force that might be used to prevent them to use the resources that they are

entitled to.

“Once your health deteriorates it always looks like you are dying. There is nothing

that you will be able to do ever again. The people will look at you in a funny way like

when I went for a grant people becomes angry that we are paid as compared to
people who are not paid for TB and other illness. They said the government is wasting

money which could be used for better things.” (Participant 4, Group 5)

However, some participants argue that the people who did not want to share resources

with them are those who lack information about the disease. It was postulated that

community does not differentiate between HIV-positive people and those people who

are living with AIDS as people see both of them as non-productive community

members who are going to die anytime. The existential behaviour and barrier that

nurtured this perception is shown in the following negative behaviour:

“Many people need education because they still don’t know the difference between

HIV and AIDS. If you are HIV-positive in our area it is the same as if you are already

at a later stage of HIV (i.e., AIDS). It seems as if you are useless and hopeless, you

cannot do anything. They do not want us to use government resources because they

think that we are going to die anyway.” (Participant 6, Group 2)

Another striking aspect was the fact that HIV/AIDS is worse than other terminal

disease. It was reported that HIV is perceived as a serious infectious, incurable and

fatal disease which could not be cured. The severity of the disease has made

HIV/AIDS more stigmatized than other chronic disease like cancer hither to. The

existential belief and barrier that there is no cure has nurtured the negative perception

that it could not be cured and this is reflected by reports of hopeless feelings:
“I think HIV/AIDS has been known for a long time and I think there should be cure by

now but there is no hope.” (Participant1, Group 4)

“There is no hope for the cure of AIDS. It is better for other terminal illnesses

because you can get treatment from sangomas ad witch doctors not like AIDS. AIDS

is a worse fatal disease than all the diseases that have been in the world”

(Participant 4, Group 4)

The medical paradigm in this instance appeared to be accompanied by strong images

of disease which drew on comparisons with other epidemics and illnesses (Brandt,

1988). Significant on this medical discourse of AIDS is the absence of a discourse on

traditional African medicine that is used for treating AIDS. This perspective distances

AIDS from other terminal illnesses which further emphasizes people’s helplessness

regarding the problem. Perceiving AIDS as something totally different from other

disease this would increase denial and not accepting the illness.

1.2 HIV as any other illness

The alternative positive perception suggested that HIV/AIDS should be viewed and

responded to in the same way as other terminal illnesses.

“Although it is incurable, I think a cure will be found like the cure of other illnesses”

(Participant 3, Group 3)
“I think HIV/AIDS is like cancer, although it is terminal it can be treated”

(Participant 8, Group 3)

Some participants reported a positive perception that they have hope and have

accepted their HIV status. Mostly these were people who were well informed about

HIV. They also mentioned that they have accepted the illness and have disclosed their

status although it was also difficult for them at the beginning. They have accepted

their condition through education about the disease and this existential belief has

empowered them on what they should do to live longer lives. The existential

behaviour that has nurtured and enabled this positive perception is illustrated bellow:

“I didn’t think that I will die and had hoped that I will live longer. I have not given up

hope and have been infected for 10 years” (Participant 1, Group 3)

“I agree; those who are HIV-positive and have accepted their status should help

those who are still struggling to accept their status because if I don’t accept my

positive status, stress may kill me. It is useful helping people to come to terms with

their status to reduce stress” (Participant 2, Group 4)

“People who are less informed think that you will die” (Participant 1, Group 3)

Some people indicated that they are not discouraged by the negative and

discriminating remarks of the community members and are encouraging those who
are HIV-positive and who are offended by those remarks to be open about their status.

They encouraged PLWHA to disclose the HIV status. They believe that if they

disclose their positive status to the community and educate them about the illness

most people will accept them. It was reported that education about illness is the

existential behaviour that should be encouraged because it has nurtured positive

behaviour disclosing and acceptance of the status regardless of the negative

perceptions that would nurture negative behaviour to be silent and not accept their

HIV status:

“I think we HIV-positive people should be open about our HIV-status and educate

people at churches and in the community and tell them that it does not kill so that we

could live normal lives and accept our status. By doing so the community will also

accept us” (Participant 4, Group 4)

It is noteworthy that the increased access of antiretroviral therapy was also mentioned

which could be one of the reasons for them to be positive about their health condition.

“Now there is antiretroviral treatment that helps us to decrease the viral load and

increase our cd-4 counts” (Participant 5, Group 6)

“It is better now because there is antiretroviral treatment” (Participant 4, Group 2)

“I am also on antiretroviral and not scared to disclose my status because if I do not

disclose I will die of stress and find it difficult to go for treatment” (Participant 4,

Group 3)

For the participants whose views were dominated by HIV/AIDS as an incurable

disease, the moderating impact of antiretroviral therapy seems to have been

undermined by the negative perception that was nurtured by negative behaviour of

stigma experienced within the family members and the community.

“I do not think the more availability of antiretrovirals will make a change because it

does not cure the disease it only delays the progression of the illness, so the people

will continue stigmatizing us.” (Participant 3, Group 1)

“People will not change their thinking because they will look at you in the same

negative way while you were not on antiretroviral, their attitude will not change”

(Participant 4, Group1)

“Community members are not accepting and that makes you loose hope even if you

know that there is something that can help their negative attitude overwhelm you and

you become confused” (Participant 6, Group 5)

The absence of a vaccine or cure for the virus was also strongly reported in this

discussion.
Theme 2: Negative community responses

When they were asked if the community thinks in similar way participants described

positive as well as negative responses from the community members. Several negative

perceptions were strongly reported that shows that the community discriminates and

stigmatizes them. It was further mentioned that stigma and discrimination further

drive the epidemic and prevent those who are already infected from seeking treatment

or assistance. Participants reported that negative perceptions nurtured those who think

that they are not at risk to engage on risky behaviours or not to respond to the disease.

“Community members do discriminate us for example church members think that we

are sinners and HIV/AIDS is seen as a punishment from God” (Participant 7, Group

5)

“Most people think that HIV is for people who have multiple partners” (Participant

3, Group 6)

It was reported that in Khayelitsha there is a tendency of diagnosing people if they

see any symptoms especial rash and fever. Some of the existential behaviours that

nurtured these negative perceptions are reported as follows:

“HIV-positive people are looked down upon. If you have a small rash on your face or

you have flu, it is often assumed that you are HIV-positive. One of the distressing
incidents in the community was when members of the community refused to hold a

baby who was suspected to be positive, when you see such practices you feel hurt”

(Participant 3, Group4)

“Members of the community often like to behave as if they are doctors. The

community needs to be educated because they also think you will die. I often go to X

area to receive my grant and I met someone there who thought that I was dead”

(Participant 8, Group 3)

“There is often assumption that you are positive on the basis of few symptoms. You

are often assumed to be positive without a diagnosis been made” (Participant 10,

Group 3)

Participants reported that most people are not knowledgeable about the disease and

even those who have medical knowledge are uncertain and become frustrated as the

illness progresses. These reactions induced anxiety, distress and anger. Brashers et al.

(1998 in Deacon, Stephney and Prosalendis, 2005) argue that lack of biomedical

knowledge shows uncertainty about the impact of the disease changes in the different

phases of the HIV illness. It is further postulated that medical and social assumptions

about people’s biological incapacity through the effects of disease could be natured

by the fact that biological knowledge of HIV/AIDS is socially constructed. According

to Epstein (1996, in Deacon, Stephney and Prosalendis, 2004) it is indicated that on

the study about social construction of medical knowledge of HIV/AIDS there is a

huge literature on the social construction of science in general. The negative

behaviours nurtured by this existential belief are illustrated in the following remarks:

“If you get easily sick, it is also concluded that you are HIV-positive. They say that

you have AIDS. When there is conflict your neighbours often use this as a weapon in

the conflict. When you are with your friends you also realize that they often talk about

HIV. The topic suddenly changes because they also don’t directly talk about HIV and

you sense that they are talking about you” (Participant 3, Group 5)

“Another thing is that when we speak about this thing, you think that there are people

you have seen where the HIV condition is bad and you think that you also will be in

that position. The people will say I am the one who is cheap while busy sick. You

realize now that when you get this thing people will say you had no morals”

(Participant 2, Group 6)

The above discussion is on line with other researcher’s argument that numerous

sources of heightened uncertainty, including complex changing treatment, ambiguous

symptom pattern, and fear of ostracizing social response, play a critical role in the

experience of PLWHA and are linked with negative perceptions of quality of life and

poor psychological adjustment” (Deacon, Stephney and Prosalendis, 2005). It is

further argued that uncertainties in medical knowledge of a disease, and in the lack of

a cure, could thus both increase stigmas by others and independently increase anxiety

and fear among PLWHA in the different phases of the disease.

2.1 Positive community responses

The HIV pandemic has elicited both negative and positive responses from the

community members. There were indications from participants that community has

made a positive impact in their lives. The people and institutions who have nurtured

their positive behaviour are mentioned below:

“I would say my neighbours, even though I never could hide it, I was able to disclose

it to them so that they could know what it is. They were able to support me”

(Participant 4, group 6)

“Some churches are accepting of PLWHA; there are also projects or structures to

educate the community about HIV/AIDS” (Participant 7, Group 1)

There was also evidence about education that has positive impact on encouraging

community members to accept PLWHA. Education is reported as the existential that

has nurtured the positive perceptions about their acceptance. Some participants

mentioned that if people should be educated about the illness at least they could

accept PLWHA. This view came from the belief that most community members who

lack information about HIV and AIDS associate HIV with death.

“People often think about death when they think about HIV. This is due to

misinformation or lack of information” (participant 3, Group 5)

It was further argued that prevention strategies played a major role to avoiding further

spread of the epidemic. Health education is therefore reported as urgently required to

bring about the necessary behaviour change:

“The community should be educated. People who are stigmatizing others lack

knowledge” (Participant 7, Group 5)

“It’s lack of knowledge. Many people need education because they still don’t know

the difference between HIV and AIDS. Some do want to disclose but are afraid of

being stigmatized” (Participant 6, Group 2)

“Some parents, older family members often think that you will die because of lack of

information” (Participant 5, Group 3)

2.2 Food as a measure of acceptance or rejection

In many societies PLWHA are seen as shameful, the epidemic has shown itself

capable of triggering responses of compassion, solidarity and support, bringing the

best in people, their families and communities, but the disease is also associated with

stigma, repression and discrimination as individuals affected by HIV have been

rejected by their families, their loved ones and the communities. The participants in

this study expressed different experiences regarding acceptance of persons living with

HIV/AIDS. There were participants who shared positive experience of being

embraced and supported by various sections of the community. It was also indicated

that some community members do care especially after you have disclosed your status

they will make you have enough food so that you could adhere with the treatment and

also advised you about other places where you could go for help. Below is the

example of the positive behaviour that has nurtured and enabled medical adherence:

“I spoke to community leader who promised me confidentiality and told me about

support groups. I often ask food from the neighbours during the day in order to take

medication” (Participant 3, Group 3)

“Some community members were respectful, others brought food for us. Workers at a

factory X area involved us in work on HIV/AIDS. They supply us with food and this

helps us to take our treatment because we should have something before we take the

pills.” (Participant 2, Group 5)

Theme 3: Social exclusion, discrimination and HIV-stigma from family

members

Participants reported negative perceptions and enablers from the family as they

mentioned that the families that were supposed to take care of them when they are

sick were the ones who were discriminating and rejecting them.
“It’s not only in the community but also at home. My mother said I must tell my sister

about my status. After I told her I noticed that she changed. She became moody

towards me and looked at me as if I am a living grave” (Participant 6, Group 2)

“My sister also wanted to leave me” (Participant 2, Group 2)

“After I disclosed my status at home I was undermined by my parents and siblings

and I was not accepted at home at all” (Participant 2, Group 1)

3.1 Parents involvement

On the negative perception of the family, most youth experienced difficulty to be

accepted by parents when they have disclosed their status. Dominant voices from the

youth were of the parents not accepting their HIV status associating their HIV with

promiscuous lives and also PLWHA mentioned that parents are claiming that they are

an embarrassment in the community. These youth faces a major problem regarding

disclosure. The existential belief of embarrassment that has nurtured and a barrier of

disclosure are shown by these remarks:

“Our parents attend church and they do not want us to disclose our status and do not

accept us saying that we are an embarrassment. You become stressed and do not

know what to do.” (Participant 4, Group 3)

“Our parents force us to hide our status because of embarrassment. My mother

wanted to hide my status from my dad” (Participant 5, Group 3)

Some of the participants further remarked that rejection suffered at home could

launch an individual on a path on instability, insecurity, immense distress and some

instances suicide.

“Some parents become angry at you because they think you were promiscuous that is

why most people think of suicide when they find out their status” (Participant 2,

Group 3)

“I was rejected and sworn at by my aunt when she discovered that I was positive. I

was hurt but later accepted the rejection” (Participant 9, Group 1)

“I feel that I can’t tell my parents about my status, and that my life will be shortened

and that I will not be able to reach my goals because they will reject me” (Participant

7, Group 5)

An alternative voice that some parents are accepting and supporting their children

when they discover that they are HIV-positive was expressed in the following

statements:
“There are other parents whose behaviour towards us is sympathetic. For example,

the mother of one of our members was understanding about the HIV and she educated

some of us” (Participant 6, Group 4)

“I spoke to a community leader who promised confidentiality and told me about

support groups. At least he was supportive” (Participant 4, Group 3)

It was also mentioned that the existential behaviour of “othering” PLWHA within a

family has nurtured the negative behaviour of rejection. Some participants reported

that HIV-positive people are not welcomed in the community and this has been

further reinforced by various distressing experiences of rejection at home, not being

treated well at work as well as in the churches and schools. In one group a middle

age male appeared to express shame and guilt and felt that they were seen as “others”

for being HIV positive. He mentioned that every time when they watch TV and

something in HIV came up the brother would say there is your “thing” and switch off

the TV. The following statement echoed the existential behaviour of “othering” of

HIV person within the family:

“If there is a TV programme on HIV they will often call me and ask me if I have seen

my thing” (Participant 3, Group 2)

“They talk about it as if it’s something out there and is for certain group of people

not them” (Participant 10, Group 1)

One participant indicated that in the clinics there are some health care providers

especially those who are the age of their parents who treat them as they own the

disease. The following message illustrates the existential behaviour and nurturing of

“othering” of HIV youth within the clinic:

“At one clinic the sister in charge mentioned that this is our AIDS. You can see that

she is fed up when she saw us and want to behave like our parents since she is old”

(Participant 9, Group 2)

3.2 Stigma and discrimination at school and work

Few people mentioned that they felt bad and being dehumanized when they were

rejected and discriminated at school as well as in the work place. This negative

behaviour of discrimination and its nurturer and barrier at school is shown below:

“At school some of the teachers say we will pass the disease over to others or we will

infect other students. They show negative attitudes and this force us to live school if

you are known or to be silent if you are not known” (Participant 1, Group 1)

There were also participants who mentioned that they have experienced

discrimination at work. Most of the voices reflected that they have lost work because

of the unfair treatment from the management due to the fact that they were HIV-

positive. This negative behaviour has nurtured a barrier of unemployed to PLWHA:

“I was injured and when I went back they wanted me to start working. I disclosed to

the sister in charge and shop steward. They accepted me, especially the shop steward.

Given my condition, I have to attend treatment and they said it was okay, In

December, the supervisor started making some comments. In January, the

management said I didn’t have work anymore; there is no more work for me. I noted

that the attitude of the sister has also changed. The management said I was always

absent when I went away to get treatment. This was obviously not true as I only went

for treatment once a month. They thought I wouldn’t be productive. I instituted legal

action and I am still waiting for that process” (Participant 7, Group3)

“Even the police [she was a police officer] manifest stigma. The treatment I received

suggested that they forgot that I am a human. I became fearful and avoided work

because of stigma and I was unhappy for being stigmatized and belittled. People can

die in the police because of fear and hiding. When medical aid was depleted, I had to

leave work because of stigma” (Participant 7, Group 2)

“I would like HIV/AIDS to be openly discussed. My boss said I couldn’t work

anymore because of my positive status” (Participant 9, Group 3)

“I was asked to go to the clinic and later was asked what my status was. The company

management discovered my status and denied me promotion. I was asked to take

leave by management. When I committed one mistake I was fired and I think the

reason for being fired was not strong” (Participant 8, Group 2)

3.3 Perceived modes of transmission

Although the mention of HIV transmission was infrequent participants indicated that

some people are still ignorant about HIV/AIDS, particularly about modes of

transmission. It was postulated that numerous community members have used the

supposed risk of transmission to avoid PLWHA. The existential that has nurtured

these negative perceptions was shared in the following comments:

“At home there is also a stigmatization because they don’t want to share utensils with

me. I think in the community there is a fear that a positive person will infect them.

Fear and anger are sometimes the problems. Even my friend was scared that I was

going to die. Other community members stigmatize positive people because of fear

and ignorance” (Participant 2, Group 2)

“Some people still don’t want to share utensils with us for the fear that we will infect

them.” (Participant 2, Group 4)

“I had a similar problem when I could not share utensils with my family for fear of

infection” (Participant 1, Group 3)

It was further reported that although the majority recognized that the virus was

transmitted sexually, they also expressed confusion about modes of infection and

echoed many misperceptions about how HIV is contracted.

“They think if you stay in the say room and share blankets and clothes you will infect

them. Other friend of mine was moved to stay in a horrible old outside room which

was not in good condition for her health using her own things that are not used by

other family members scared of being infected” (Participant 1, Group 4)

This negative perception also included the belief that the disease was easily caught by

coming to close contact with some one who is infected:

“I found that if you are HIV-positive they do not accept you, it is like you will bring

something to them or would infect them” (Participant 3, Group 4)

“Yes a person would not sit with me like this (showing the way we were sitting in a

group) due to lack of knowledge because I have this thing” (Participant 6, Group 6)

3.4 Food contamination stigma

There were voices where women mentioned that they felt shame and guilt when they

are not allowed to cook or take care of children because of their health status. The

existential behaviour that nurtured this negative behaviour and a barrier is illustrated

below:
“I found it difficult to disclose my status to my family and friends. When I prepare

and dish food my family does not accept the food for the fear that they might be

infected” (Participant 3, Group 4)

“I think we are not accepted, for example at home I didn’t cook because my family is

scared that I will infect them” (Participant 5, Group 3)

Theme 4: Othering of female PLWHA

Culture or tradition, especially African tradition, is seen as another aspect which

reinforces inequality of gender relations by justifying male superiority and the

subordination of women. Men are assigned by culture to be in control of the sexual

aspect of the relationship. They also decide on what would be regarded as normal or

deviant behaviour. Female participants reported that they are seen as loose and

blamed for spreading illness to their male partners. HIV stigma-related stereotypes

add on the pre-existing stigmas in the community and the marginalized group like

women in the family and society experience multiple stigmas when they are HIV-

positive. The participants mentioned that most of the time women are accused of

infecting their male partners. This negative existential behaviour is exemplified

below:

“With couples it is often assumed that it’s the woman who infected the man”

(Participant 8, Group 1)
“Sometimes it happened that the in-laws often think it is the daughter in-law who

infected their son” (Participant 2, Group 1)

“One thing I hate is that the person who is visible for being without morals is the

woman. With women it would be found to be the one who brings it (HIV), it will not

come with the man in the house” (Participant 7, Group 6)

It was reported that most people who go to the clinic for help are women and even if

they go together with their partners treatment is administered separately and this

could contributes to making the infection appear as if it is a woman’s problem.

Furthermore, by women going for treatment, it would be an admission of moral

infraction that implies that they contracted the disease through sleeping with

somebody other than their partners. Sentiments that express the existential belief of

blaming women for infecting men follow:

“So many times I find that most of the people who disclose their status are women.

Once a woman has disclosed that she is positive, if it was up to the community, no one

should go nearer her ever again. Let us say, that you are positive and you have a

boyfriend, it is possible for the people to say to him “do you know that the girl you

are in love with is positive”. That is why I say it is so dominant in the community,

because once you as a woman have a boyfriend they would want to know if your
boyfriend is aware that you were sleeping around although it is not like that and is

not their concern” (Participant 1, Group 4)

Unmarried women also indicated that it is worse when you are young women having

children outside marriage or engaged in sex before marriage they associate the illness

with promiscuity, careless and materialized lives that result in HIV. This existential

belief of blaming women has nurtured more stigmas on women living with HIV/AIDS

as compared to men living with HIV/AIDS:

“They often think women are more promiscuous and not men” (Participant 5, Group

6)

“Yes women are treated differently. There is a perception that we are promiscuous,

that we infect men. Women are seen on the same way foreigners are seen – as the

ones who infect others” (Participant 8, Group 5)

“Women are more stigmatized and insulted more than men” (Participant 1, Group 2)

4.1 Stigma visited upon children of PLWHA

For the participants who were parents, anxiety was expressed about the fate of their

children once they are dead. There was also fear that these children may not

necessarily be accepted. The enabler nurtures this negative behaviour of not accepting
the children of HIV-positive people that there will be no support when they are no

longer alive is illustrated below:

“I worry about my child because I ask my self who will support them” (Participant

10, Group 3)

“I thought my family would not accept me. I was surprised when they accepted me.

My child died and I am worried who will look after the other one” (Participant 4,

Group 3)

They will be also be stigmatized because of the fact that their parents were HIV-

infected.

Some PLWHA mentioned that their neighbours do not allow their children to play

with their kids.

“The community needs to be educated because even your neighbour chases away your

child just because of their positive status, while the child was there to play with the

other children, it seems as if the child will infect the other children” (Participant 1,

Group 6)

“I worry about what people will think and mostly about my children” (Participant 4,

Group 6)
4.2 Labeling PLWHA

It was reported that in Khayelitsha if one is suspected of being HIV-positive or is

HIV-positive people give the person names such as Z3, prostitute, won lotto and other

negative names. This existential behaviour accounted for most of the stigmatizing

behaviours from the community. This prevents people from disclosing, seeking help

and going for free HIV testing. Participants mentioned that it is better not know or

disclose your status if you know that you are going to be labeled and treated inferior

if you are aware of your positive health status. Stigmatizing behaviours reported in

this study took various forms include negative and derogatory labeling. This makes

the people to be afraid of knowing or disclosing their status others end up not going to

seek help from the clinics. The negative behaviour of labeling PLWHA has nurtured

silence about the status and barrier to free testing and seeking healthy sexual

behaviour.

“ When the community members know your status they are very stigmatizing because

you are no longer called by your name but by names such as lotto or 4X4”

(Participant 4, Group 5)

Sometimes they say that you called a thing, they will say “this thing with AIDS” as if

you are nothing” (Participant 3, Group 5)

Participants further mentioned that the community devalues them and are given

names especially those linked with taboos and they are discriminated because of their
HIV status. Goffman (1963) suggest that a person who possesses characteristics

defined as socially undesirable like HIV/AIDS acquire a spoiled identity that then

leads to social devaluation and discrimination. These pre-existing negative existential

beliefs from community members has nurtured negative family and community

beliefs. Negative labeling HIV people exacerbate social division by stereotyping the

marginalized group in this study that is PLWHA, as responsible for the illness and its

spread.

“Sometimes they say that you called a thing, they will say “this thing with AIDS” as if

you are nothing” (Participant 3, Group 5)

“You are called bitch, won lotto or Z4” (Participant 6, Group 5)

Theme 5: HIV and promiscuity

Participants mentioned that other community members felt pity for children who have

contracted the disease from their parents and people who got it through helping

injured people or being involved in an accident as compared to one who have

contracted the disease through sexual intercourse. It was further reported that others

do not even think that it could be contracted in other ways than sex because when

they see HIV-positive person they conclude that the person was non-normative. By

blaming certain individuals or groups, society can excuse itself from the

responsibility of caring for and looking after such populations. This existential
behaviour nurtures the barrier as such groups are denied access to the services and

treatment they need as if they have invited the disease.

“I became worried about community views. Apart from that you are nothing just

because to them you were sleeping around that is how people think about you. They

start giving you terrible names. You end up not asking help from them because they

think you are punished for immoral sexual behaviour practices” (Participant 1,

Group 5)

“Where the HIV is bad is when they treat you as if you are nothing and you are the

person who sleeps around and now you deserve to be sick. “(Participant 2, Group 6)

Association of HIV with promiscuous behaviour came from the messages that were

used in the early 80’s as HIV was introduced as the disease of gay men. Some who

have very high levels of knowledge about the disease decide not to be identified with

HIV people not that they do not know how it is transmitted but do not want to be

identified with people are considered to be immoral by the society. They are not

willing to give support to people who are infected through sexual behaviour claiming

that they deserve to be sick because they believe that God punishes them or have

sinned. Participants reflected that this negative existential behaviour is considered the

main nurturer of the negative perception of the community that PLWHA are

promiscuous and morally deficient.

“I was hurt because it was concluded that I was HIV-positive as a result of being

promiscuous. In fact I was infected by my partner who was promiscuous”

(Participant 3, Group 5)

“It is distressing because they think you are promiscuous” (Participant 8, Group 5)

“People think that if you are HIV-positive you are promiscuous and you and your

family are then stigmatized” (Participant 2, Group 5)

“People know how infection happens from the radios but they like promiscuity theory

that is why they do not talk about other ways a person could get it” (Participant 6,

Group 6)

Theme 6: Context of care in clinics

According to Goffman (1963) stigmatized people may suffer disadvantage without

experiencing any direct discrimination by avoiding situations that they think will be

discriminatory (self-stigmatizing). Santana and Dancy (2002 in Deacon, Stephney and

Prosalendis, 2005) acknowledge that stigma can also be internalized leading to self-

doubt, lower self-esteem, depression, immuno-suppression and even premature death.

These feelings can then be intensified if an individual is subjected to secondary

rejection in various social settings such as health care centers. In this study it was

mentioned that in clinic M some health workers shouted them in front of other

patients or sent them back without any reason. This negative perception has nurtured
negative behaviour of negative attitude and barrier of denying access to the services

and treatment they need as illustrated below:

“Nurses often displace their anger on us. They lose temper and are very rude to us

and others shout at us”. (Participant 1, Group 3)

“We are sometimes abused at clinics because they say that we are demanding”

(Participant 9, Group 3)

“There is a problem at clinics. In one of the clinics, the sister- in-charge did not like

people who are HIV/AIDS-positive. If there were no counsellors at that clinic, we

would struggle. She often sent us back” (Participant 6, Group 2)

“I have not had a bad experience but I have observed the reactions of the medical

staff when someone misses hi/her date. That person is sent back without medication

and given a new date and this hurts”. (Participant 5, Group 4)

6.1 Formula feeding and HIV-stigma

Secondary stigmatization has occurred in both community and health care settings

with the use of formula feeding as the positive people are advised not to breastfeed

and are given formula to feed their infants. Participants reported that they were not

treated well when they go to fetch the formula that they are entitled to or end up not

getting it at all. Some women expressed that they were chased away when they went
to collect formula for their children. It was also mentioned that there are health care

providers who sell the formula to community members. This negative behaviour of

mishandling formula feeding that is supposed to be given to children of PLWHA is

indicated by these remarks:

“The government gives milk to children but nurses don’t give milk. After one month

they say there is no milk and I have discovered that this milk is sold to the community

for R12” (Participant 3, Group 3)

“If you got it this month you do not get it next month. You will see them at the

townships selling this milk for R12 (participants are all surprised). The government

must see to this problem because this milk does not go to people entitled to, they sell

it for their own gain not for the benefit of positive children. We buy it from them, in

the clinics when you ask for the milk they shout us about our virus”. (Participant 4,

Group 3)

“The nurses have a problem of not giving people milk” (Participant 5, Group 6)

Participants mentioned that the community members when they see them at the clinic

fetching milk associate formula given to them with HIV. It was mentioned that

negative perception from community members in the clinic made it difficult for

PLWHA to go collect formula especially those who have not yet disclosed their HIV-
status. The existential belief which has nurtured this negative behaviour is shown

below:

“When community members attending the clinic see you taking the formula they

conclude that you are HIV-positive. This is not good especially if you did not disclose

your status to them” (Participant 5, Group2)

“Most of the people in the clinics they discriminate you when you receive formula and

distance themselves from you because they think that everyone who receive a free

formula is positive and they also think that your child is also positive” (Participant 3,

Group 4)

6.2 Challenges faced by PLWHA about different colours of stickers on the

clinic folders

In some societies laws, rules and policies can increase the stigmatization of PLWHA.

Discriminatory practices such as notification of ‘HIV patients” by using different

colour of the folder or putting a sticker on the folder furthers the stigmatization of

such group as well as creating a false security among individuals who are not

considered at high-risk.

It was mentioned that in some clinics patient’s folders had different colours. This

enabler exposes their medical condition. They indicated that it is possible for other

patients to establish the medical condition of their fellow patients based on the colour

of the folder.
“HIV-positive people sit in their own section and this is not acceptable. The colour of

our folders is different from other folders. This enables other patients to know our

status” (Participant 4, Group 5)

Participants reported negative behaviour of confidentiality bridging by community

members within the clinic setting that is a barrier for them to go for help in the

clinics. The existential behaviour about boundaries in the clinic has nurtured negative

behaviour the restriction of PLWHA’s right to anonymity and confidentiality.

Participants acknowledged that if they are seen at certain sides of the clinic/hospital

with certain people then the community starts to label them and even spread the

gossip in the township that they are positive without proof.

“In Khayelitsha the X clinic is inside the hospital. Other patients at the clinic can

deduce that you are HIV-positive if you sit in certain sections of the clinic. This often

leads to such patients telling others in the community that you are HIV-positive based

on where they saw you” (Participant 1, Group 1)

“The issue of different colours for folders is disturbing” (Participant 8, Group 5)

“The other problem in the community is that if your neighbour sees you at X clinic,

she tells other neighbours that you are receiving treatment for HIV” (Participant 5,

Group 4)
Most of the participants mentioned that they are not treated like other patients because

whenever they visit the clinic doctors do not physically examine them whereas other

patients are physically examined. According to Herek and Capitanio (1998 in Deacon,

Stephney and Prosalendis, 2005) not giving people treatment or physical examination

they suppose to get because of their status is stigmatizing them. They felt physically

excluded as they were not examined and this enabler discouraged them from seeking

help. They mentioned that they feel bad and hurt if they are not offered the resources

as if they are going to infect them or drain the resources while others benefit from

those resources. It was strongly indicated that this negative behaviour depriving

physical examination has nurtured a barrier of not going to seek help from the health

care facilities.

“The other problem is that some of the doctors don’t do a medical examination if they

know that you are HIV-positive. They just give you medication” (Participant 6, Group

4)

“When I went to the clinic I wish the doctor could conduct a physical examination.

However, I was given medication on the basis of what I told the doctor, there was no

physical examination” (Participant 10, Group 3)

“At X clinic you are seen by the nurses and not doctors. They said I am not too sick

and could not give me a nearer follow-up date”. (Participant 1, Group 3)

Some participants further argue that it is not all the clinics that are not good. They

find some clinics to be good but only the certain sections of the clinic that are not

good. Participants highlighted that the problems of being not examined are

experienced when they are in the general section of the clinic but the HIV section of

the clinic and other integrated sections are taking good care of them. In this sense

they prefer the HIV clinic but they mentioned that when their CD-4 counts improves

the doctors refer them to the general section.

“At X and M clinics it is okay but the general side is not okay. There are no medical

check ups in this section and we are just told that our condition is normal”

(Participant 4, Group 4)

“Sometimes when our CD-4 counts improve we are changed and referred to general

clinic side and the treatment there is not nice. At one of the clinics the nurse told me

that I have 4 days left. How are you going to feel if someone says this to you”.

(Participant 1, Group 1)

“Sometimes you are told that you won’t live. Obviously this affects you mentally”

(Participant 9, Group 1)

In some clinics they found the health workers helpless as some PLWHA view the

nurses as incompetent. Some participants spoke of being given wrong treatment or

incorrect explanations for use. The participants who reported this enabler are those
who attend workshops about the treatment and are also members of the organizations

that teach the community about HIV treatment so they are well informed. They even

request that in future they are willing to have workshops where they could educate

both health workers and community members. The negative perception about health

care workers competence is explored in the following statements:

“We are given medication without any proper diagnosis. The treatment that we

receive for STIs is not good. Nurses and doctors don’t want to attend workshops. My

neighbour who is a nurse says that she is not interested in attending those

workshops”. (Participant 7, Group 5)

“I agree because I was given wrong treatment” (Participant 5, Group 3)

“Some of the medical team draws your blood without your consent” (Participant 6,

Group 5)

Theme 7: Disclosure of HIV client’s status by health care providers

When they were asked about the feeling of the health care workers towards PLWHA

and the concern about confidentiality came up. It was indicated that they used to

disclose their status on the friends who visit them while they are on duty. Some

participants mentioned that they also talk about their status with other clients in the

clinic. Lack of confidentiality existential within the clinic is illustrated by the

following remarks:
“The other thing that is not good is that the nurses chat about our status to their

friends who come to visit them in the clinic.”(Participant 1, Group 1)

“He is right, that happened to me. The counsellor talks to clients about me and I left

that area. Another practice that is not good is that after hours she talks about clients’

(Participant 8, Group 1)

Some participants also mentioned that health care workers spread the news about their

status even within their neighborhoods. Lack of confidentiality makes it difficult to

come for help when it is needed and also discourage testing for HIV if you are not

ready to be known by public. Those who mentioned that health care workers gossip

about their status also strongly pointed out negative perceptions, and the enabler that

the VCT counsellors are also sharing confidential information in places where they

socialize and with their colleagues.

“Some counsellors behave unprofessionally. When they see you in the community they

show their friends that you are one of their HIV clients”. (Participant 10, Group 1)

7.1 Impact of confidentiality breach by health workers on PLWHA seeking

help

It was further postulated that participants tend to be very distressed when these

negative labels were used in conflict situations between HIV-positive and HIV-
negative community members. For participants who had not yet disclosed their status

before these conflicts, it was very distressing for them to learn that community

members know their status. Although they were not entirely clear how this happened,

one of their possible explanations was the breach of confidentiality by medical

personnel. This negative behaviour is a barrier to free VCT and has also nurtured

silence about the illness instant of disclosing and going for necessary help in the

clinics.

“A community member claimed to know my status and she said a health worker

informed her. There are nearly 10 nurses who behave in this way in the

neighbourhood that is why people do not trust them and don’t test”. (Participant 8,

Group 2)

“A friend of mine was in conflict with her neighbour and she shouted her about her

HIV status and we discovered sometimelater that the information was heard from the

counsellor who stays nearby and this hurts and makes you regret knowing your

status”. (Participant 4, Group 3)

This perception is indeed worrisome. This is particularly disconcerting because of

some of the negative experiences some participants had with some medical personnel.

PLWHA encounter problems when they go to educate and disclose their status as part

of the health education section in the clinics where they volunteer because the health

care workers are also stigmatizing and do not take HIV as their own problem. Some
participants who volunteer in clinics felt that they were rejected, isolated and

discriminated at some of the health care services in such a way that they end up not

disclosing HIV status when they educate other patients. The participant remarks one

of the enabler:

“In one of the clinics we did volunteer work; nurses did not like to share their tea

cups with us” (Participant 3, Group 4)

Theme 8: Challenges faced by PLWHA about staff shortage in clinics

There are clinics which were perceived as best clinics in treating PLWHA it was also

indicated that since the number of infected people increase it is difficult for the staff

working there to deal with everyone. The shortage of doctors was a pervasive voice as

this enabler was reported in all the six groups and participants mentioned that they

had to wake up at four in the morning for the facilities that opens at 19h00 and

sometimes they were sent back home without being attended because of the large

numbers of people in that facility.

“We go to the clinics at four in the morning and are seen at about three in the

afternoon and sometimes sent back home not seen at all”. (Participant 1, Group 3)

“Both HIV section and other sections need more doctors because they are all under

staffed there are lot of people with one or two doctors only”.(Participant 7, Group 3)
It was also mentioned that in some clinics nurses will have long conversations on

phones or with their friends during working hours and this negative behaviour

nurtured exasperation from the clients. It was mentioned that this makes them to wait

long before they could be seen. This existential behaviour also nurtured a barrier on

treatment adherence because they claim that they have to stay in the clinics the whole

day with empty stomachs and could not follow the pattern of taking their pills.

“The nurses at X clinic have private conversations that are too long during working

hours” (Participant 1, Group 3)

“I think it will be better if we are seen by positive staff in the clinics because the staff

does not care about us. We wait for ever to be seen with empty stomach and end up

not taking treatment for the day and it is worse when you are chased away because

the next day you have to come and stay the day without treatment so how are you

going to adhere with your treatment” (Participant 6, Group 4)

“Some nurses arrive at 07:00 and the gates are still closed they go and chat not

considering that we were there from 04:00 in the morning and when we ask them to

open the gates they often display their anger on us. They loose temper and are very

rude and we know that they work under pressure” (Participant 1, Group 3)

8.1 Positive perceptions about health care workers

Alternative views expressed positive perceptions that some health care workers are

helpful and they keep confidentiality. The clinics that were reported as good clinics

are those who have support groups and other programmes for LWHA. There were

also few clinics inside and outside the area which were mentioned as having care of

PLWHA.

“Our counsellor was very helpful and supportive. We did some training and she is

helpful” (Participant 6, Group 2)

“The people from clinic X were also very helpful and supportive” (Participant 10,

Group 2)

“We did never have any problems at the clinics” (Participant 5, Group 6)

It was also mentioned that information and support groups are the existential which

have nurtured this positive behaviour within the clinics. In this regard the clinics with

support were indicated to be more supportive and support groups per se were

perceived welcoming, informative and supportive to PLWHA.

“We feel happy when we attend the support group. This is because we get food and

are not afraid to share cups. It is okay because we get support. In some hospitals you

are treated well and some health personnel offer good treatment” (Participant 7,

Group 4)
“The support group is helpful. The leader of the groups also visits us at home”

(Participant 3, Group 4)

“Some people still don’t want to share utensils with us for fear that we will infect

them. We are able to deal with some of these issues in support groups and receive

counselling” (Participant 2, Group 3)

8.2 Brief summary of the results

HIV-related stigma and discrimination remains an enormous barrier to effectively

fighting the HIV and AIDS epidemic. PLWHA in Khayelitsha perceived and

experienced stigma related to HIV differently. Fear of discrimination often prevents

people from seeking treatment for AIDS or from admitting their HIV status publicly.

Some are coping with the illness and are open about their status. In this case

education and information from support groups has been found as an existential

behaviour and enabler which need to be encouraged.

It is clearly elaborated that HIV and AIDS are as much about social phenomena as

they are about biological and medical concerns. The diseases is associated with

repression, discrimination, as well as individual’s living with HIV has been rejected

by their families and by the community as whole. The families, friends, loved ones

and the community as a whole evict some PLWHA from their homes. In some cases,

they are turned away from health care services, not given formula feeding, suffer

from breach of confidentiality about their HIV status, and health care providers who
are in short supply often hold negative attitudes, and are at times seen as

incompetent.

There is also evidence that women and youth are more likely to be badly treated and

rejected within a family. Some PLWHA find their families, health care services and

neighbours to be supportive. It is also explored in this study that in Khayelitsha

people still believe that casual contact, sharing utensils or being in the same room

with a person living with HIV could put you at risk for HIV infection. Although there

is not much reported on HIV transmission in the workplace the supposed risk of

transmission has been used by numerous employers to terminate or refuse

employment. It was also evidence that if PLWHA are open about their HIV status at

work or at school they may well experience stigmatization and discrimination by

others.

The different beliefs and practices related to perceptions, enablers, and nurturers are

explored and have been categorized into positive, existential and negative beliefs.

Stigma is found to be a powerful tool to social exclusion. We need programmes that

will confront the fear based messages and negative social attitudes in order to reduce

the discrimination and stigma of PLWHA in Khayelitsha. The PEN-3 model will be

used to determine whether the emphasis will be on the person, the extended family, or

the neighborhood when planning intervention to decrease HIV stigma. The following

chapter provides recommendations and conclusion.

 Chapter 6

Conclussion

This chapter provides a summary of the major findings of this study discussed in the

previous chapters explores the study’s limitations and offers recommendations for

future research.

6.1 Summary Of Research Findings

The purpose of the study was to investigate both the nature and the impact of the

stigma surrounding HIV/AIDS that is experienced by PLWHA in Khayelitsha

Township in Cape Town, South Africa. Six focus groups were conducted with

PLWHA of whom three were mixed gender groups and three were composed of only

women. The findings indicated that PLWHA are affected by the stigma attached to

HIV/AIDS in various ways.

Firstly, most of the participants perceived HIV as akin to death due to the large

exposure to funerals related to HIV/AIDS. What is worrisome here is that the people

who have died are mostly of their age group and this negative perception has

provoked the idea that they are also going to die soon. STDs are well known for

triggering negative responses and reactions. According to Evian (1991), it is

acknowledged that others think that AIDS is a plague sent by God to destroy the

sexual immorality that has overcome people. Together with a series of messages that

were used at the beginning of the pandemic that HIV/AIDS is a killer, punishment for

immoral behaviors and belief that HIV/AIDS is shameful there is enough evidence
that these existential beliefs have nurtured this negative behavior of associating HIV

with death.

On the other hand, some participants perceive HIV similarly to other

stigmatized diseases. Those who see it in this way tend to be well informed about

HIV and its progression in different stages. It was found that this view helped

PLWHA’s to cope with the illness as compared to those who lack the bio-medical

knowledge about HIV and AIDS. Evian (1991) mentioned that for one to understand

the nature of the HIV/AIDS disease, it is vital to distinguish between two important

concepts, namely, HIV and AIDS.

Some PLWHA in the focus groups participants indicated that AIDS is perceived

to be more immoral unlike other terminal illnesses due to the way it is contracted

through sex. It was indicated that although there are other ways of contracting HIV

sex is the most commonly mentioned mode of transmission, especially when people

want to excuse themselves from taking care of HIV-positive people. Van Vuuren

(1997) indicated that AIDS is seen as a disease far more contagious than it really is

because it is regarded as a divine retribution for certain aberrant lifestyles. It is found

that this has a negative impact on PLWHA as it prohibit health status disclosure,

prevent seeking healthy health behaviours and free HIV testing, makes PLWHA to

feel guilty, angry and hopeless.

In addition, Herek and Glunt (1988) argued that HIV/AIDS is highly

stigmatized because it is a disease that is perceived as the bearer’s responsibility

because the primary modes of transmission of the infection are behaviours that are

considered to be of choice. The distinction between innocent and guilty PLWHA is

underpinned by strong emphasis upon the association between lifestyle choices and

health states that has emerged in medical and public health discourses over the past

few decades.

Some participants reported a positive perception that they have accepted their

HIV status. In this case education is found to be the enabler that has nurtured the

positive process of accepting their HIV status and has encouraged them to disclose

their status.

Generally it was found that people are aware of HIV/AIDS but may lack

completely accurate knowledge of HIV/AIDS.

Several negative perceptions were strongly reported in the focus group

discussions. These show that the community rejects, discriminates and stigmatizes

PLWHA. Furthermore, some PLWHA were physically abused after they disclosed

their HIV status. Lack of medical knowledge about HIV is considered to be what has

nurtured this negative behaviour. Herek & Glunt (1988) postulated that the AIDS

epidemic has been accompanied by intensively public reactions to persons presumed

to be infected by HIV. Several studies echoed that the HIV pandemic has evoked a

wide range of reactions from individuals, communities and even nations, from

sympathy and caring to silence, denial, fear, anger and violence (Brandt, 1988;

Brown, Chase & Aggleton, 2003).

Importantly, some participants have said that the community had made a positive

impact in their lives. Participants mentioned that people who are members of support

groups and other organizations dealing with HIV are very supportive to PLWHA and

that they refer them to places where they could be attended if they are not able to help
them themselves. It was also found that most of the PLWHA who are members of

support groups are coping with HIV status and are open about their HIV status.

Furthermore, it came up in these results that food was used as measure of

acceptance or rejection as members of the community who accept PLWHA were

mentioned to be those who were offering food to PLWHA so that they could adhere

with their treatment and also remain healthy. This motivates PLWHA to be open

about their status and to adhere to their treatment.

Many youth spoke about their parents not accepting their HIV status, as well as

associating their HIV status with promiscuity, claiming that they are an

embarrassment, and chasing them away from their homes. Ignoring the existence of

HIV/AIDS and neglecting to respond to the needs of those living with HIV infection

are some of the forms of denial. This has nurtured negative behaviour of not

disclosing their HIV status at all. According to Lee, Macintyre and Sikkema (2003)

stigmatized individuals are vulnerable to feelings of self-hatred which can result when

they internalize society’s negative views of them. Moreover, internalized stigma is

likely to make an individual more sensitive to both actual and anticipated rejection

and stigmatization by others which negatively affect disclosure.

An alternative experience among youth was that some parents are accepting

and supportive to their children when they discover that they are HIV-positive.

PLWHA in Khayelitsha find themselves stigmatized and discriminated against

within the home. Some people mentioned that they felt bad and dehumanized when

they were rejected and discriminated against at school as well as in the work place.
Participants mentioned that they had lost their jobs because of discrimination at work

and others were denied promotion because of their HIV status.

Some participants reported that numerous community members have used the

supposed risk of transmission to avoid PLWHA. It was found that people who express

stigmatizing attitudes about HIV often have retained misinformation about the

transmission of HIV. It was reported that in Khayelitsha there are people who still

believe that HIV can be transmitted by casual contact. This belief has enabled a

negative behaviour of isolating PLWHA.

Women also mentioned that they are treated as “others” and not allowed to

cook or take care of children because of their health status. It was also reported that

HIV-infected women are treated differently from HIV-infected men. The participants

mentioned that most of the time women are accused of infecting their male partners.

Men are likely to be excused for their behaviour that resulted in their infection,

whereas women are not. In this regard, culture, especially that based on African

tradition enables inequality of genders and justifies male superiority over and the

subordination of women. According to the report of the Department of Health (2002)

in South Africa, it appears that women who are infected are stigmatized more than

men (in Policy Report, 2003a).

In addition, unmarried women indicate that the stigma is worse when you are

young women having children outside marriage or engaged in sex before marriage, as

people associate the illness with promiscuity. These women also showed concern

about their children as they mentioned that their children will be stigmatized because

of the fact that their parents were HIV-infected.

 It was reported that in Khayelitsha if one is suspected of being HIV-positive

people in the community will give that person names such as Z3, prostitute, lotto

winner and other “negative” labels. Some participants mentioned that community

members associate HIV with promiscuous behaviours and do not even think that it

could be contracted in other ways than sex because when they see HIV-positive

person they conclude that the person was non-normative. This negative behaviour is

nurtured by existential belief that HIV is a gay plague, punishment from God and

these inaccurate explanations has provided a powerful basis for both stigma and

discrimination. These stereotypes enable some people to deny that they personally are

likely to be infected or affected.

Various perceptions of the attitudes that health care providers have towards

PLWHA were reported. Some people reported that PLWHA are stigmatized and

discriminated against by health care providers. Some say that they were shouted in

front of other patients and sometimes sent home without reasons. Marshall (2002, in

Policy Report, 2003a) describes enacted stigma and discrimination as a collective

dislike of what is unlike. It is further postulated that enacted stigma is usually

intentional, although people are not always aware that their attitudes and actions are

stigmatizing.

Others reported that the formula feeding which is entitled to them was not

easily accessed because there are health care providers that are selling it in the

community to get money.

It was also indicated that in some clinics their folders are having stickers on

them that expose their medical condition.

 They also indicated that some doctors do not physically examine them on

visits whereas they examine other patients. These negative behaviours prevent them

from wanting to seek help in clinics.

There were also remarks about the incompetence of health care providers as

PLWHA were reporting that they were given wrong medications or wrong

instructions to follow when they were given treatment.

Furthermore, it was mentioned that some health care providers and counselors

disclosed their HIV status in the community and with their friends without their

consent. This negative behaviour is a barrier preventing people from coming to the

clinics for free HIV testing.

It was further indicated that there is staff shortage in most of the clinics. This

enabler is reported as the nurturer of negative behaviour sending them back home

without being seen and also the fact that they have to be in the clinics early in the

mornings and come back late.

Alternative views expressed positive perceptions that some health care workers

are helpful and that they keep patient confidentiality. Clinics with support groups

were mentioned to be more supportive and welcoming to PLWHA than those without.

Education and support groups were reported as the existential behaviours which have

nurtured this positive behaviour.

6.2 Limitations Of The Study

A major limitation of this study is that we did not manage to get male-only groups of

PLWHA where they could explore their feelings. While the male participants reported
 that they were comfortable to be in mixed groups, the researcher felt that it would

have been much better if they were given their space as in Xhosa culture since there

are issues, including sexual ones that males do not share easily with women.

Secondly, looking at the area a big as Khayelitsha it will be impossible to say that our

sample represents PLWHA in the whole of Khayelitsha although the researcher

attempted to get people from different areas within Khayelitsha. Therefore, the

findings are not be generalizable to all PLWHA in Khayelitsha.

6.3 Recommendations For Future Research And Intervention

Several findings in this study have indicated that HIV is akin to death, incurable, and could

lead to discrimination. People who are well informed about HIV respond differently to HIV

than those who are not well-informed. An educational programme could be effective in

changing negative behaviour about the illness. Airhihenbuwa (1995) argue that people who

are empowered about their health through knowledge are more likely to make appropriate

decisions about their health. He further argues that health education is committed to health

of all. In this sense the individual should be empowered to make informed health decisions

appropriate to their roles in their families. PLWHA in this regard need to be empowered by

health education so that they are able to challenge the perceived association of HIV with

death. Programmes that were used to decrease stigma associated with other terminal

illnesses like TB and Leprosy should be revisited and be re-evaluated so that they could be

used to target this problem. According to Airhihenbuwa (1995), evaluating existing

intervention programmes would help not to repeat the same projects. This would also help

to identify the projects that work in the area.

 There was evidence that fear of discrimination often prevents people from seeking

treatment for AIDS or from admitting their HIV status in public. Messages which were

used to introduce this pandemic at the beginning are reported to be the factor that fuelled

existential beliefs which are now a barrier to HIV prevention. These are introduction of

HIV and AIDS as the gay plague, association of HIV/AIDS with promiscuity and also by

perceiving HIV and AIDS as a punishment for immoral behaviours. This is placing an

emotional burden on PLWHA and those affected by the HIV/AIDS. Support groups would

be appropriate and effective channel for changing these perceptions and behaviours. Since

these are long-term cultural beliefs home visits and one-to one contacts in the community

can address this problem. Arhihenbuwa (1995) argues that involvement of community

members and their leaders becomes critical in the provision of culturally appropriate health

programmes. It is further postulated that it is important for them to define what constitutes

their community or neighbourhood at the beginning of a project.

Lack of medical knowledge about the progression of HIV in different stages and

misinformation about HIV contraction were also indicated in this study. Perceiving HIV as

AIDS and assuming that HIV could be contracted through casual contact could hinder

personal, family and community motivation to change. The mass media, posters, flyers,

radio and television messages would be the effective channels for increasing knowledge,

reinforcing previous held attitudes and changing behaviours that were recently established

because they are not tied to cultural beliefs.

The results also indicate health service problems with respect to adequately

supporting PLWHAs including: incompetence of health care workers, staff shortage, the

withholding of formula feeding, and HIV testing without consent. These enablers could be
a barrier to change and has impact on non-compliance with treatment or coming for testing

in the clinics. PLWHA need to be educated so that they are able to challenge the

availability of services, accessibility, assert their rights as patients and government officials

and skills and types of services they are entitled to. Institutions and other monitoring

mechanisms can enforce the rights of PLWHA and provide powerful means of mitigating

the effects of discrimination and stigma. These institutions need to include the community

members when combating HIV/AIDS-related stigma and discrimination because the

rationale behind stated beliefs and practices should be well understood.

People also reported that health care workers shout at them in front of other patients,

they are not physically examined and they are treated as others in “others” within the

clinics. These enablers have nurtured PLWHA not to seek help in the clinics and have

prevented people from coming for free HIV testing. It will be important to increase the

number health workers that are trained to understand and respect PLWHA. According to

airhihenbuwa (1995) PEN-3 model, it will also be important to have workshops that will

empower with knowledge those who are not trained at this area. There were alternative

voices that some health care workers are helpful and they keep confidentiality. It will be

more important to look at what worked and did not work in the clinics that are mentioned

to be treating PLWHA with dignity. Airhihenbuwa (1995) acknowledged that health

education programmes involve health beliefs and behaviours. Therefore, these programmes

must reflect the cultural perspectives of the people for who they are designed.
6.4 Future Research

Although the explorative nature of the research does not allow findings to be generalized, it

would be interesting to find out about the experiences of families having HIV-positive

members and also the experiences of health care workers dealing with HIV-positive people

about the stigma related to HIV/AIDS. This will give us broader knowledge on experiences

of people about stigma related to HIV/AIDS so as to inform the development of

intervention programmes.

6.5 Conclusion

It is evident from these findings that stigma impacts PLWHA and prevents them from

seeking preventive and treatment services. Stigma enables people to believe that they are

not at risk for HIV “HIV/AIDS is someone else’s problem”. Some cultures have value

systems that may conflict with some components of HIV prevention. Stigma needs to be

addressed at the community level in order to minimize its impact on HIV prevention

services. Rejecting cultural values will not solve the problem there is a need to challenge

cultural norms by encouraging positive culturally-appropriate messages about HIV. The

development of stigma reduction programmes will promote non-stigmatizing responses to

PLWHA.

PLWHA who internalize community negative views about what is moral and

immoral become vulnerable to feelings of self hatred, guilt and distress. Similarly, PLWHA

who internalize stigma associated with their disease and associate HIV with death hold

negative view of HIV disease and themselves. This is likely to negatively affect their

mental health and their ability to effectively manage their HIV disease. There is a need to
decrease the stigma related to HIV/AIDS and promote a climate of tolerance and empathy

within community members regardless of their health status. This is even more essential to

ameliorate internalized among PLWHA themselves.

\
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 Appendix A

Interview Guide

1. What are your views about HIV/AIDS?

a. What do you think influenced you to hold these views?

b. Is your views shared by others in the community?
c. What are some positive things in your community that is supportive of
PLWHA?
d. What are some negative things in your community that is against
PLWHA?
e. How about at Health care facilities?

2. What are specific behaviours by Nurses, Physicians, and other Health Care
Providers?

a. Are woman LWHA treated differently?

b. How about men LWHA? Are they different?

3. To what extent would you say Health Care Personnel have considered factors like
gender when treating or advising you?

a. Are there other factors – other than gender?

b. Is there a health care facility that you would consider to be more friendly
and humane toward PLWHA in this community?
c. Outside the community?

4. How do you think health care providers feel toward PLWHA?

a. What are some positive or negative feelings?

b. What should be done to remove the negative discrimination against
PLWHA?
c. What should the community do to remove discrimination against
PLWHA?

5. Are there any additional comments that you wish to make before we complete the
discussion?