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East African Journal of Public Health Volume 5 Number 2 August 2008

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FEAR OF STIGMATIZATION AS BARRIER TO VOLUNTARY HIV COUNSELLING AND TESTING


IN SOUTH AFRICA
Annemarie E. Meiberg1, Arjan E. R. Bos2, Hans E. Onya3, Herman P. Schaalma1
Abstract
Objective: The objective of this qualitative study was to identify psychosocial correlates of HIV voluntary counselling and testing
(VCT), with an emphasis on the association between fear of AIDS-related stigma and willingness to have an HIV test.
Methods: The study was executed in Limpopo Province at University of Limpopo, Polokwane, South Africa. Focus group interviews
were held among 72 students, divided over 10 groups.
Results: Results showed that participants had different levels of knowledge about HIV/AIDS and VCT, and that AIDS was still
strongly associated with death. Results further demonstrate that HIV/ AIDS related stigma is still a very serious problem in South
Africa. Lack of HIV/ AIDS related knowledge, blaming persons with HIV/AIDS for their infection, and the life-threatening character
of the disease were seen as the most important determinants of AIDS-related stigma. The main benefit to go for VCT was knowing
your HIV status, whereas main barriers for testing were fear of being stigmatised and fear of knowing your HIV positive status.
Conclusion: Fear of stigmatization is an important barrier to HIV testing and has negative consequences for AIDS prevention and
treatment. Interventions to reduce HIV-related stigma are needed in order to foster voluntary HIV counselling and testing in South
Africa

Introduction
For nearly two decades countries all over the world
have struggled to respond to the HIV/AIDS epidemic. In
2005 almost 3 million people died because of AIDS, and
an estimated 4.1 million acquired the human
immunodeficiency virus (HIV) - bringing the number of
people living with the virus around the world to about 38.6
million. Almost two thirds of all persons with HIV live in
sub-Saharan Africa (1). For many years AIDS is the
leading cause of death in this region. In the past decades
the life expectancy in sub-Saharan Africa dropped with no
less than 15 years, from 62 to 47 years.
South Africa is in the midst of a catastrophic AIDS
epidemic; it has the highest number of people living with
HIV in the world. End 2005 an estimated 5,5 million
South Africans were living with HIV, the overall HIV
prevalence among pregnant women was almost one third,
about 320,000 people had died because of AIDS, and over
a million children had been orphaned (1). To reduce the
spread of HIV, the South African government and
international aid organisations are investing significant
prevention resources in voluntary HIV counselling and
testing (VCT). The South African government has
established more than 450 VCT centres with more than
800 counsellors around the country (2). Research has
shown that VCT can reduce high-risk sexual practices and
can decrease rates of sexually transmitted infections (3, 4).
In addition, VCT is necessary for directing HIV infected
people to highly active antiretroviral therapy (HAART),
which is becoming increasingly available in South Africa.
In 2001 partners within the Joint United Nations
Programme on HIV/AIDS (UNAIDS) and other
organizations, along with scientists at WHO, calculated
that under optimal conditions 3 million people living in
developing countries could be provided with antiretroviral
therapy, and could have access to medical services by the
end of 2005. Universal access to antiretroviral therapy for
Correspondence to: Arjan E.R. Bos, Erasmus Rotterdam University, P.O. Box 1738,
300DR Rotterdam, The Netherlands. E-mail:bos@fsw.eur.nl
1
AE. Meiberg, Maastricht University, The Netherlands, 2Erasmus University
Rotterdam, The Netherlands, 3University of Limpopo, South Africa

everyone who requires therapy according to medical


criteria opens up ways to accelerate prevention in
communities in which more people will know their HIV
status and, critically, will want to know their status. As
HIV/AIDS becomes a disease that can be both prevented
and treated, attitudes towards AIDS will change, and
denial, stigma and discrimination may rapidly be reduced
(5).
There has been growing support and demand for HIV
voluntary counselling and testing services that foster riskreduction behaviour based on knowledge of HIV status
and link HIV-infected individuals with care and support
services. There are several compelling arguments for HIV
VCT: (a) individuals have a right to know their infection
status to protect themselves and others from infection, (b)
HIV VCT may enable people to cope with the anxiety
associated with the uncertainty of not knowing ones HIV
status, (c) early detection of HIV may improve the
medical and psychological support for HIV-infected
persons, and (d) HIV VCT has been shown to promote
safer sex (6).
Determinants of VCT
In order to promote HIV VCT, many studies have
tried to unravel the psychosocial correlates of HIV testing.
Studies among homosexual men in Western countries
revealed that HIV testing was associated with selfperceived risk or health status and attitudes towards
testing (7-11), past health service use (9,10), perceived
stigma (9, 12-14) and fear of test results (8, 9, 11). The
more people think that they might have contracted HIV,
the more they acknowledge the advantages of testing and
the more familiar they are with using health care services,
the more likely it is that they will go for a test. The more
people fear negative test results and social stigma, the less
likely it is that they will go for a test.
Although research on the correlates of HIV testing
among non-Western populations (or populations in
developing settings) is sparse, these findings are echoed
by studies among populations in South Africa. Peltzer,
Mpofu, Baguma and Lawal found that among university
students in four African countries attitudes towards HIV
testing was positively associated with having had an HIV

East African Journal of Public Health Volume 5 Number 2 August 2008

test, self-rated HIV knowledge, the number of sex partners


in the past 12 months, and personally knowing someone
with HIV or AIDS (15). In their study among mine
workers Day and colleagues found that health concerns
were the main motivator to have an HIV test, while fear of
test results and the potential consequences, particularly
stigmatization, disease and death, were the main barriers.
Interestingly, only 14 percent indicated that they would be
more likely to access VCT if antiretroviral therapy would
become available (16). A study by Kalichman and
Simbayi among inhabitants of a black township suggested
that AIDS-related stigma is one of the most important
barriers for HIV testing (17). Their study showed that
individuals who had not been tested for HIV and those
tested but who did not know their results, held
significantly more negative testing attitudes than
individuals who were tested and knew their test results.
Compared to people who had been tested, people that
were not tested for HIV reported significantly greater
AIDS related stigma, ascribing greater shame, guilt, and
social disapproval to people living with HIV. To conclude,
stigmatization seems one of the main barriers of HIV
testing in South Africa.
AIDS related stigma
Many have described the HIV/AIDS epidemic as an
epidemic of ignorance, fear and denial leading to
stigmatization of and discrimination against people living
with HIV/AIDS and their family members (18, 19).
Stigma refers to any attribute or characteristic of a person
that is deeply discrediting. This attribute is devalued in a
particular context, and calls into question the full
humanity of this person. Persons are devalued, spoiled or
flawed in the eyes of others because of this negatively
valued attribute and dehumanisation, threat, aversion and
social rejection are openly behavioural manifestations of
stigmatization (20, 21). Besides of the social
consequences, stigma also has detrimental consequences
for psychological well-being (22). In addition to
stigmatisation at the individual level, stigma can appear in
different contexts at societal and community levels. For
instance, stigma may lead to restrictions on international
travel and migration, mandatory testing for work permits,
pre-employment screening, discrimination by health care
systems, exclusion from schools, and violence toward socalled high-risk groups (19, 23, 24).
Several factors have been identified that determine
stigmatising reactions towards PLHA (people living with
HIV/AIDS). First, perceived contagiousness of the disease
is related to feelings of fear and stigmatization. Second,
perceived seriousness of the disease is related to
stigmatization. Third, perceived responsibility for
becoming HIV infected is associated with stigmatization
of PLHA. And fourth, negative reaction towards PLHA
often symbolizes negative attitudes towards groups
associated with HIV/AIDS, such as men having sex with
men, commercial sex workers, and drug users (25-29). To
date, relative few studies have investigated determinants
of AIDS related stigma in sub-Saharan countries. These
studies suggest that similar determinants are involved (30,
31), although their manifestation may be somehow
different. For example, whereas in Western countries

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AIDS is often associated with homosexuality, in subSaharan countries it is associated with other norm
violating sexual behaviour, e.g. prostitution. In addition to
the determinants that are also found in Western countries,
in sub-Saharan countries religious factors and some
cultural specific factors also seem to be related to AIDSrelated stigmatization (30).
Stigma is still the most important issue that hinders
HIV prevention. Fear of being identified with HIV often
keeps people from seeking to know their HIV status,
discussing prevention, changing unsafe behaviour, and
supporting care for PLHA. Stigmatization thus threatens
the utilisation and effectiveness of HIV/AIDS prevention
and care efforts. Stigma and discrimination also increases
the pain and suffering of PLHA and their families (26).
The present study
The present research investigates psychosocial
correlates of voluntary counseling and testing, with an
emphasis on the association between fear of stigma and
willingness to have an HIV test. More specifically, the aim
of this study is to identify factors that facilitate or impede
HIV VCT, and factors that are related to fear of being
stigmatized because of HIV/AIDS. The study was
conducted by means of focus group discussions (FGD),
which provided insight in the cultural-specific correlates
of HIV VCT and fear of AIDS-related stigma.
Methods
Participants
The study was conducted among university students
of the University of Limpopo (UL), Polokwane, South
Africa. This group is a sexually active target population
and is relatively easy to reach. Ten focus group
discussions were held among students to explore
correlates of VCT and fear of stigma and discrimination.
In total 72 black students (35 men and 37 women) of the
UL participated. They were undergraduate (62) and
postgraduate (10) students, varying in different grades. All
students, except one who was married, were single and
they were between 18-36 years of age (M = 21,56; SD =
2,96). They belonged to different ethnic groups, but most
of them were Sotho or Tsonga.
Measurement
A qualitative study design was chosen to explore the
correlates of VCT and fear of stigma.
Students were asked about their HIV/ AIDS
knowledge and underlying factors (transmission, ways of
protection, consequences of being HIV positive/ negative).
Also, their VCT knowledge was asked including benefits
and barriers to go for testing. To stimulate group
discussion, facilitators told stories to which students
could react. The stories were used so that the students
could replace themselves in the person in the story, to give
an accurate opinion. In these stories the themes of
stigmatization and VCT came across.

East African Journal of Public Health Volume 5 Number 2 August 2008

Procedure
Participants were recruited by means of posters,
announcements on the university radio station and
recruitment by research assistants and peer educators.
Potential participants were informed about the content of
the group discussion and study procedures, and they were
asked to sign a consent form. They were promised
anonymity and confidentiality. Ten focus group
discussions were conducted in 3 male groups, 3 female
groups and 4 mixed groups. Before the discussion started,
students were asked to complete a short survey addressing
demographics, such as sex, age, ethnic background, and
marital status. Each focus group discussion consisted of 610 students who discussed various topics. Three
interviewers conducted the group discussions: one
facilitating and leading the group discussion, the other two
were making notes and monitored the interview process
and the contents. The group discussions took about one
hour, they were audio taped and spoken in English. In
order to make the participants feel comfortable in the
discussion, a native speaker was chosen to lead the group
discussion. At any point in time, when a participant found
it difficult to express him/herself in English, he or she
could easily switch into the native language. Students
were not paid for participating in the group discussion.
Ethics Approval
Ethical approval for the study was obtained from the
South African Universities Vice Chancellors Association
(SAUVCA), which is the national association of South
Africas twenty-one public universities.
Analysis
Before analysing the data of the FGD and the
interviews, all audiotapes were transcribed. The results of
focus group discussions were analysed with QSR
NVivo1.3, a program for the analysis of qualitative data
(32). In QSR NVivo the discussions and interviews were
arranged in categories and subcategories (nodes and subnodes). The following categories were used to analyse the
data: Knowledge of HIV/ AIDS and VCT, AIDS-related
stigmatization, and perceived benefits and barriers to go
for VCT.
Results
Stigma manifestations
Our FGD clearly acknowledged that there is still a
strong HIV/AIDS-related stigma in South Africa. Most
participants agreed that PLWA are neglected, ignored and
isolated. For instance, participants frequently mentioned
that it would be very difficult to get a job when you are
HIV positive, that many men leave their women when she
is HIV positive, that even family members frequently
blame their relatives for contracting HIV/AIDS, and that
many PLWA are rejected by friends because people do not
want to be associated with someone with HIV/AIDS (33).
The FGD also revealed that participants were struggling
with HIV/AIDS-related stigma themselves. Although

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many acknowledged that PLWA should not be stigmatised
and discriminated, they recognized that they themselves
were also not free of stigmatising reactions (30). For
example, one boy remarked:
I tried to accept. And the others, they wanted to give
her a life, but this was happening: we are living in
front of her and we knew she wasnt sleeping around,
but at the end, she wasnt accepted anymore, she was
just banned out of the family.
Causes of stigma
Ignorance, threat and contagiousness. Although VCT
becomes increasingly available nowadays in South Africa
(1), at the time of the study antiretroviral drugs were still
unavailable in Limpopo province and participants in all
FGD still strongly associated HIV/AIDS with dying and
death. During the discussions HIV/AIDS was frequently
described as the disease that cannot be cured or another
international death sentence. Many participants expected
that HIV infection would end all their future plans, and
some thought that they might commit suicide when tested
HIV positive. Only a few participants believed that HIV is
not immediately causing death and that it can be possible
for PLWA to live a rather normal life.
Our FGD further revealed that participants were
seriously concerned about contracting HIV/AIDS.
Although they recognised that their beliefs about HIV
prevalence at the University campus was based upon
rumours, they assumed that about half of the students
might be HIV positive. This is illustrated by the following
comments of a girl:
I just heard that there are many students infected
with HIV. But I dont know who, I dont know, I have
never met anybody.
Many researchers have argued that the lifethreatening character of HIV/AIDS and the perceived
contagiousness of the disease are related to stigmatizing
responses (26, 27, 30). The participants in our FGD
generally seemed to be quite knowledgeable about
HIV/AIDS, in particular about various medical aspects of
HIV/AIDS and about the major modes of transmission.
(34, 35). However, our FGD also clearly revealed some
serious misunderstandings regarding transmission through
casual contact. For example, the majority of participants
thought that they could contract the virus by eating food
prepared by PLWA. Interestingly, participants revealed
mixed feeling regarding sharing things, such as a spoon,
mug or a toilet and regarding casual contact like shaking
hands and hugging. Although the majority did not belief
that one could contract HIV/AIDS by means of casual
contact with PLWA, they frequently revealed to fear HIV
transmission through causal contact.
Because of the life-threatening character of the
disease and misunderstandings about its contagiousness,
people generally tend to feel rather uncomfortable about
having contact with an HIV-infected person and to cut off
contact with the HIV-positive (36). Most participants in
our FGD endorsed that they usually feel rather
uncomfortable when they anticipate to have, or actually

East African Journal of Public Health Volume 5 Number 2 August 2008

have, contact with PLWA. They even indicated to feel


uncomfortable when they suspect people to be infected.
For instance, they stated that they would not go to a bar
with HIV-positive bartenders, and that they would not
want to share blankets or sheets with someone who is HIV
positive. Even participants being aware of the
impossibility to contract HIV through casual contact
mentioned that they continued to have doubts and behaved
as if transmission through causal contact was possible.
Research on social stigma has shown that onset
controllability is one of the most important determinants
of stigmatization (25, 26, 29). Our FDG confirmed that
PLWA are generally held personally responsible for
contracting the disease. According to the most participants
it is peoples own fault to become infected. They
mentioned that HIV/AIDS is usually associated with
adultery and unsafe sex with multiple partners. One male
participant expressed this clearly:
They are punishing you because you slept around. And
people dont understand why you had that much
intercourse
Correlates of VCT attendance
Several studies have shown that young people are
generally not motivated to attend VCT services and that
there is a range of barriers varying from availability of
services, worries about confidentiality, inaccurate risk
perceptions, fear of being stigmatized and perceptions of
the consequences of living with HIV (11, 16, 37-40).
Many of these barriers were discussed in our FGD.
According to our participants, fear of knowing your
positive status is the main barrier to go for VCT. All
claimed to be too scared to have an HIV-test because of
the risks they might have taken in the past. Many
expressed that it is better to be unaware of your HIV
status, so that you just can go on with your life and do not
have to face the fact that you will die young. Many
participants mentioned that life is easier when you ignore
the disease and the risks you are running (35). Participants
also frequently mentioned that they would only go for
VCT when they would feel very sick. As long as theres
no direct and serious physical cause, there is no reason to
go for VCT. One male participant expressed very clearly
the fear of knowing your status:
Not knowing my status is better. Knowing it makes
me anxious. It is better not to know.
Another female participant also indicated that it is
better to ignore the disease:
I dont want to die young. Nothing is better than not
knowing. I want to live and dont worry.
The above-mentioned reactions are in line with theory
about stress and coping (41). Since people see a positive
test result as a death sentence and a cause for social
isolation and rejection, a positive test result causes stress
that can only be reduced by defensive coping mechanisms
since treatment is still unavailable.

52
A second major barrier for VCT was the fear of
negative social reactions when tested positive, especially
from their family. Most participants expected that their
family would not react very nicely, and that it would be
very likely that they would be rejected and excluded by
their family after HIV disclosure. In addition, the
participants also feared the reactions of their friends. Most
expected that their friends would react in a negative way,
and that their friends would not like to be associated with
someone who is HIV positive. One male participant
expressed the social exclusion of persons with HIV very
clearly:
To be honest, other people will start rejecting you.
Youre not longer a person, youre going to die.
A female participant summarized the importance of
social stigma in VCT attendance concisely:
As long as theres stigma, people wont go.
A third barrier to VCT that was frequently mentioned
in our FGD was the distrust in the health care workers of
the VCT services. Participants expected to be blamed by
the health care workers in case of a positive test result. For
example, one girl said:
When they discover that you are positive, they start
you to say: Oh, positive! They just start to blame you.
While you are still there, they you just look at it and
use their own language. The immune system, oh, oh,
its 18, or what. They are talking about you.
Moreover, participants they had serious worries about
the confidentiality of VCT and feared that test results
would be shared with the community. In addition, some
participants questioned the capability of the health care
workers to do adequate testing. These concerns are
reflected in the following remark of a female participant:
The nurses who are working there are injecting
that person, and some believe that they inject
people with the virus. Many people believe that.
Whereas our participants discussed a broad range of
reasons not to attend VCT, remarkably few reasons to
attend VCT were mentioned in our FGD. According to our
participants, the most relevant reason to go for VCT
would be severe health complaints. Girls did mention
pregnancy as a strong motivation for VCT. For example,
one female participant said:
For me now I think it is not so important, but if I get
pregnant I would go for protecting my baby.
Other reasons to go for VCT that were mentioned are
marriage, a new relationship, having had unsafe sex,
having a friend with HIV or job circumstances. These
findings are in line with the results of other studies (6, 38,
40, 42, 43). If there was a proper medication to treat
people, people would be more willing to go for a test,
while protecting yourself and do not infect others were

East African Journal of Public Health Volume 5 Number 2 August 2008

also mentioned as factors to test. The latter findings were


not reported in previous research.
Discussion
South Africa is in the midst of a huge AIDS
catastrophe: it is estimated that 5.5 million South Africans
are infected with HIV (1). Many people do not know their
HIV status, which contributes to the further spread of HIV
and hampers HIV-infected individuals to start with
treatment. VCT is necessary for detecting peoples HIV
status and for directing people to antiretroviral therapy,
which is becoming increasingly available in South Africa.
Despite the fact that a large part of the population is HIV
infected, people with HIV/AIDS are confronted with
strong stigmatization and social rejection. Fear of
becoming stigmatized seems to be a major obstacle for
people to go for a HIV test and to get to know their status.
The aim of the present study was to investigate
psychosocial correlates of VCT, with a strong emphasis on
the relation between fear of AIDS-related stigma and
willingness to have an HIV test. The results clearly
demonstrated that AIDS is still an epidemic of ignorance,
fear and denial. Participants indicated that PLWA are
victims of huge discrimination and experience social
isolation. Furthermore, participants reported that they do
not want to be seen as friend or relative of somebody with
AIDS, because they fear to become stigmatized
themselves. This so-called stigma by association (33)
illustrates that fear of stigmatization is deeply rooted in
South Africa. The present research was conducted among
university students, who generally belong to the most
well-informed groups in our society. It can be expected
that stigmatizing responses among other groups in South
African society are even stronger.
In line with previous Western research on
determinants of AIDS-related stigmatization (21, 25-27),
it was found that the life-threatening and contagious
character of the disease is related to stigmatization.
Participants associated AIDS with death and dying, and
had unrealistic risk perceptions about contracting the
disease in casual contact. Another important determinant
of stigmatization reactions was victim blaming. PLWA
were held responsible for their HIV infection and their
HIV infection is often associated with immoral behaviour.
Victim blaming is also found as an important determinant
of AIDS-related stigma in Western societies, although the
manifestation of immoral behaviour is somewhat different
due to differences in affected populations. In Western
societies AIDS is often associated with homosexuality,
whereas in South Africa AIDS is strongly linked with
promiscuity.
Fear of stigmatization may be one of the most
important barriers to VCT uptake. Participants were afraid
to become rejected by family members after disclosure of
their serostatus. This illustrates the importance of family
bonds in South African society. Furthermore, participants
indicated that people gossip about HIV-positive people.
An important related issue was the lack of trust in health
care workers. Participants were afraid to become
stigmatized by health care workers and mistrusted their
confidentiality.

53
Previous research among homosexual men has
demonstrated that fear of a positive test result is an
important determinant of VCT (8). The present study
demonstrates that fear of knowing your status is also an
important determinant of VCT among South African
students. Participants were scared to get a positive test
result, because they were aware about the risks they had
taken in the past. A positive test result would confront
them with a life threatening and stigmatizing disease. A
number of participants engaged in denial. They preferred
to be unaware of their HIV status and to go on with their
lives.
Perceived benefits to go for VCT were primarily related to
treatment and prevention. Participants indicated that they
could start with antiretroviral treatment, as soon as they
know their status. Furthermore, pregnancy was often
mentioned as a reason for VCT.
The present study investigated AIDS-related stigma
and other factors related to VCT among a sample of South
African students of the University of Limpopo. This is a
sexually active population in a rural area with a large
number of HIV infected people. It should be noted that our
sample, which consisted of higher educated people,
reported strong stigmatizing responses. Future research,
however, should also focus on other relevant groups in
South African society, especially lower educated persons.
In the present study we used a qualitative research design,
which offered us the possibility for a thorough and
detailed analysis. In future research, however, the present
findings should also be replicated in quantitative research.
This would allow us to measure the relative impact of all
determinants on VCT uptake.
The results of this study have important implications
for VCT. Participants have no trust in health care workers
and fear that they will inform others about their serostatus.
Thus, it seems very important to guarantee anonymity or
confidentiality. Nakashima and colleagues found in an
American study that HIV reporting by name had no effect
on the use of testing and counselling programmes (44).
The present study, however, shows that the issue of
anonymity and confidentiality is very important in South
Africa and prevents people from going for VCT.
Furthermore, our study shows that participants also
mistrust health care workers skills to do adequate testing.
It seems very important to negate these perceptions and to
restore trust in the health care system. As long as people
mistrust health care workers skills, people will hesitate to
go for an HIV test and health care workers counselling
will sort limited effects.
AIDS-related stigma is deeply rooted in South Africa
and people are very afraid to become stigmatized. Fear of
stigmatization is an important barrier to HIV testing and
has negative consequences for AIDS prevention and
treatment. It is important to educate people about AIDSrelated stigma and to design theory- and evidence based
interventions to reduce AIDS-related stigmatization (4547). Such interventions should move beyond the
individual level to be effective, and should also target the
reduction of stigma at the organizational and community
level (19).

East African Journal of Public Health Volume 5 Number 2 August 2008

Acknowledgements
The authors thank Karien Huisman for her help with the data
collection.

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Received 17 April 2008, Revised 12 June 2008, Accepted 20 June 2008