Social Death through HIV and AIDS Stigmatization and Discrimination in Ghana: A Case Study of the Central Regional Hospital, Cape Coast, Ghana

doi:10.4236/aasoci.2013.36031

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Advances in Applied Sociology

2013. Vol.3, No.6, 231-236

Published Online October 2013 in SciRes (http://www.scirp.org/journal/aasoci) http://dx.doi.org/10.4236/aasoci.2013.36031

Social Death through HIV and AIDS Stigmatization and

Discrimination in Ghana: A Case Study of

the Central Regional Hospital, Cape Coast, Ghana

Eric Koka1,2*, Collins K. Ahorlu2, Dominic K. Agyeman3

1School of Public Health, University of Ghana, Legon, Ghana

2Noguchi Memorial Institute fo r Medical Research, University of Ghana, Legon, Ghana

3Department of Sociology and Anthropology, University o f C a pe C oa s t, Cape Coast, Ghana

Email: *[email protected], *[email protected], [email protected],

[email protected]

Received July 30th, 2013; revised August 30th, 2013; accepted September 7th, 2013

bution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the

original work is properly cited.

Stigmatization of and discrimination against People Living with the Human Immunodeficiency Virus

(PLHIV) and Acquired Immunodeficiency Syndrome (AIDS) are increasingly recognized as the single

greatest challenge to slowing the spread of HIV and partly the cause of the increased death rate particu-

larly in Africa and Ghana to be specific. The purpose of the study was to identify the causes and effects of

stigmatization of and discrimination against PLHIV visiting the Central Regional Hospital of Ghana for

treatment and care. The research was conducted with a sample size of 120. Purposive and convenient/ac-

cidental sampling techniques were used to select respondents for the study. The study revealed that some

people in Ghana stigmatize PLHIV because of the misconceptions they have about the modes of HIV

transmission, the myths surrounding HIV and AIDS as well as their socio-cultural backgrounds and ori-

entations. These stigmatizing behaviors towards PLHIV have serious health, social and psychological ef-

fects on them in particular and the society at large. Based on the results of the study, it is recommended

that there should be an intensification of education on HIV and AIDS through the media. This would

make the population in Ghana more knowledgeable about the disease, which may help to reduce stigma-

tization of and discrimination against persons living with HIV.

Keywords: Human Immunodeficiency Virus (HIV); Acquired Immunodeficiency Syndrome (AIDS);

Stigmatization; Discrimination; Persons/People Living with HIV and AIDS (PLHIV)

Background

HIV and AIDS in Ghana were first recorded in 1986, mainly

among women who had travelled outside the country and since

then the epidemic has been growing steadily (GAC, 2011a).

However, there has been some decline in recent years (GAC,

2011b). In the light of experience elsewhere in Africa, it is nec-

essary to understand the potential effects of an HIV and AIDS

epidemic (GAC, 2011c). Transmission of HIV in the country is

largely due to heterosexual contact, mother-to-child transmis-

sion, transmission through transfusion with contaminated blood

and through the sharing of contaminated skin-piercing instru-

ments such as needles, blades, etc. (GSS, 1998). According to

the 1998 Ghana Demographic Health Survey Report, although

HIV and AIDS awareness is very high with 97% of women and

99% of men hearing of the epidemic, personal risk perception is

low, as 54% women and 58% men believe that they have no

chance of contracting HIV (GSS, 2011).

Ghana acknowledged the public health threat of AIDS and

started to inform people about it long before the first case was

diagnosed in the country in March 1986. The major reason for

initiating educational campaigns was that people should not be

allowed to die of ignorance (Addo-Yobo et al., 1992). From the

very beginning, the HIV epidemic has been accompanied by

fear, ignorance and denial, leading to stigmatization of and

discrimination against PLHIV and their family membe rs (MoH,

2008). The result was that those, who did not know their HIV

sero-status, were afraid of having to face stigmatization and

discrimination, if they should be diagnosed of the infection and

therefore, they were not responding to voluntary testing and

treatment campaigns (MoH, 2008). In view of the challenges

that PLHIV faces in terms of stigmatization and discrimination,

HIV-related stigma is increasingly recognized as the single

greatest challenge to slowing down the spread of the disease

(Varni et al., 2012).

In spite of increasing awareness that stigmatization could

have negative impact on HIV and AIDS control, very little is

done by way of policy and programs to reduce stigmatization

largely because efforts are impeded by the dearth of informa-

tion on HIV-related stigma from the affected and infected

points of views (Varni et al., 2012).

HIV and AIDS-related stigma and resulting discriminatory

acts create circumstances that fuel the spread of HIV (UNAIDS,

*Corresponding autho r.

E. KOKA ET AL.

232

2010). Fear of being identified with HIV prevents people from

taking a test to know their status or change their unsafe behav-

iors. A study conducted by the International Center for Re-

search and Women (ICRW) in Botswana and Zambia found

that stigma against HIV-positive people and fear of mistreat-

ment prevented people from participating in voluntary counsel-

ing and testing (VCT) and programs to prevent mother-to-child

transmission (MTCT) (Neuman et al., 2013). Stigma prevents

individuals and communities from using all manner of HIV

programs such as home-based care programs, health facility-

based programs or other support services (Neuman et al., 2013).

Ghana initially responded to HIV and AIDS as a health issue

rather than a developmental issue. In this regard, the govern-

ment directed the Ministry of Health (MoH) to take the lead in

efforts aiming at mitigating the impact of the epidemic. In 1987,

the MoH, therefore, established the National AIDS Control

Program (NACP) to implement and coordinate the country’s

HIV and AIDS Program. This was later transformed into Ghana

AIDS Commission. In addition, a National HIV and AIDS and

STI policy was developed to guide the national response. The

MoH through the NACP has spearheaded various strategies to

contain and limit the spread of HIV infection and one way is by

reducing fear, stigma and discrimination through advocacy and

educational campaigns, however, this did not yield the desired

results (Asante, 2010).

Having come to the realization that a multi-sectoral approach

would be the best way of responding effectively to HIV and

AIDS, the government threw a challenge to all stakeholders, i.e.

governmental and non-governmental organizations, faith-based

organizations, the private sector, etc. to get involved in the HIV

and AIDS response activities. As a result, the Ministry of Edu-

cation, for example, set out to provide adequate information on

HIV and AIDS to students. It put in place several intervention

strategies and the key among them is the School HIV-Alert

Model, an initiative that seeks to give momentum to school-

based control efforts through nationwide campaigns. The Min-

istry of Local Government and Rural Development also put in

place decentralized response structures for HIV and AIDS at

the District levels through the activities of the District Response

Initiative (DRI) which was launched in 2000 (Asante, 2010).

Until recently, the involvement of the religious bodies was

limited to initiatives coordinated through the health institutions

of the Christian Health Association of Ghana. These efforts

have largely been in the area of care and support. Over the past

years, however, there has been rapid growth and positive in-

volvement of Christians and Muslims organizations in the fight

against the epidemic (Asante, 2010).

Stigmatiz atio n -C o nceptual Definition and Forms

Stigmatization is generally defined as an “attribute that is

deeply discrediting” and it reduces the bearer “from a whole

and usual person to a tainted discounted one” (Goffman, 1963).

Stigmatization often leads to discrimination, which refers to

any form of distinction, exclusion, or restriction affecting a per-

son by virtue of personal characteristics (Li et al., 2013). Stig-

ma is not unique to HIV and AIDS. It has been documented

with other infectious diseases like tuberculosis, syphilis, and

leprosy (Fields et al., 2013). Stigma is most frequently associ-

ated with diseases that have severe, disfiguring, incurable and

progressive outcomes, especially when modes of transmission

are perceived to be under the control of individual behavior. It

is also common in diseases that are perceived to result from the

transgression of social norms, such as socially unsanctioned

sexual activity (Crand al l et al. , 1995).

Erving Goffman is widely credited for conceptualizing and

creating a framework for the study of stigma. His explanation

of stigma focuses on the public’s attitude toward a person who

possesses an attribute that falls short of societal expectations.

These are beliefs that are transmitted through lineages and

equally contaminated by all members of a family (Goffman,

1963). From the foregoing definitions, it has been realized that

stigmatization is a process. Stigmatization, therefore, describes

a process of devaluation rather than a thing. Much of the HIV

and AIDS-related stigma builds upon and reinforces negative

thoughts.

PLHIV are often seen as people, who have been infected be-

cause they did something wrong. Often these “wrong doings”

are linked to sex or something illegal or what is socially frown-

ed upon. Men who become infected with HIV may be seen as

homosexuals, bisexuals or people who have had sex with com-

mercial sex workers. Women infected with HIV are viewed

either as commercial sex workers or as women who have been

“promiscuous”. Families and communities often perpetuate

stigma and discrimination partly because it is convenient to

blame those who have been infected with HIV first (MoH,

2008).

Rationale

The appearance of HIV in 1981 has created fear and panic

among the populations of the world. This has resulted in stig-

matization of and discrimination against HIV infected persons.

Evidence from AIDS research in the last decade has reinforced

the view that the state of health of any group of people is re-

lated to its living conditions, the socio-cultural context in which

people are socialized, and the respect for basic rights of the

individual (Mann, 1994).

As the disease enters its fourth decade and more people get

infected, there is the need to understand the psycho-social cop-

ing mechanisms adopted by PLHIV. This is important in Ghana

where counseling is not well-developed or incorporated into the

modern health care system (Bosu et al., 2009). There is, there-

fore, the need for studies to look at the effects of stigmatization

on HIV-infected persons and the society at large so that meas-

ures can be put in place for its control. The study examined the

extent to which people living with HIV/AIDS are stigmatized

by others. The examination was done by considering factors as

misconceptions, knowledge of HIV/AIDS, fear of HIV/AIDS,

and bias (discrimination) in health care delivery.

Objectives

The goal of this study was to determine the different opin-

ions and beliefs that individuals have about PLHIV and the

reasons underlying the stigmatization of and discrimination

against PLHIV. Specifically, the study was designed to exam-

ine the causes and effects of stigmatization on PLHIV and

measures which could be taken to reduce stigmatization of and

discrimination against PLHIV.

Methods

Study Area

According to the 2010 Population and Housing Census data,

Central Region had an estimated population of 2.2 million and

E. KOKA ET AL.

growth rate of about 3.1% per annum (GSS, 2011). The region

is made up of 20 districts covering a coastal and forest zones. A

larger proportion of the populations are fishermen and crop

farmers. According to the 2011 HIV Sentinel Surveillance

(HSS) report, Cape Coast, the Central Regional capital, re-

corded Ghana’s highest HIV rate, leaping from a prevalence of

2.2 percent in 2010 to 9.6 percent in 2011. According to the

report, the Central Region also recorded the highest HIV preva-

lence of 4.7 percent in 2011, indicating more than a 100 percent

increase from 1.7 percent in 2010 (GAC, 2011).

The Central Regional Hospital was chosen for the study to

gather data from PLHIV, health service providers and visitors

to the hospital, who did not know their HIV status because it is

the only hospital in the region with a specialized clinic (fevers

unit) for HIV and AIDS treatment, care and support.

The HIV and AIDS situation in the region is said to be

threatening because it is believed that the number of infected

but unidentified clients could be quite high considering the fact

that there are two universities, a polytechnic, teacher and nurses

training colleges and numerous senior high schools in the re-

gion, especially in Cape Coast, which attracts people from all

over the country including tourists who are sexually active to

these facilities. In the light of all these, the MoH and the Ghana

Health Service (GHS) in their efforts to curb the spread of the

disease through blood screening, pre-post test counseling and

clinical management, have set up an HIV and AIDS Clinic

(Fevers Unit). The Unit has embraced the government initiative

of reaching out to the people living with HIV and AIDS. Hence,

the Unit has been named New Hope Express (“Nyaakokoduro”,

meaning “be bold”). This is because the staff of the Unit are

expected to give hope to the “hopeless” by providing adequate

treatment, care and support to them, so that even if they come

face-to-face with death, they die in peace and dignity.

Target Population and Sampling

The population for the study included health care practitio-

ners in the Central Regional Hospital, PLHIV and their family

members as well as their friends. Two non-probability sampling

techniques, namely purposive sampling and accidental sam-

pling were employed. Purposive sampling technique was em-

ployed to select 30 PLHIV who were attending clinic; 30 care-

takers (relatives, friends and loved ones of PLHIV) and ten

nurses who usually attend to PLHIV in the Fevers Unit. Con-

venient or accidental sampling technique was used to select 50

visitors to the hospital who did not know their HIV status. The

total sample size for the study was, therefore, 120.

Data Collection Instruments

Two data collection instruments were used. These were in-

depth interview and questionnai re.

In-Depth Interview

An in-depth interview guide was developed and pre tested

before it was used to interview PLHIV and their caretakers

regarding their knowledge about HIV and AIDS as well as their

perceptions about stigmatization of and discrimination against

PLHIV, their families and friends.

Questionnaire Survey

Questionnaire was administered to people who had gone to

visit relatives and friends, who had been hospitalized at the

hospital. The nurses who took care of the PLHIV at the Fevers

Clinic were given questionnaires to complete at their own con-

venience and return later. All questionnaires were retrieved

from the visitors who came to the hospital and the nurses at the

hospital. The questionnaire was pre tested for consistency and

reliability for the main study.

Data Analysis

The data collected were edited, coded, and analyzed for com-

mon themes. The analysis was done using the Statistical Prod-

uct for Service Solution (SPSS) computer software package

(Version 16.0 for Microsoft Windows). Results are presented

descriptively, incorporating both quantitative and qualitative

findings.

Ethical Review

The study was approved by the Ethical Review Committee of

the Ministry of Health, Cape Coast, Ghana and the Ethics

Committee of the Central Regional Hospital, Cape Coast. Re-

spondents gave verbal consen t that was witnessed by two health

personnel from the Fevers Unit of the hospital. Since the study

did not pose any major threat to the interviewees, who, prior to

the start of all interviews, were informed about the study aims,

their rights to withdraw participation from the study, the in-

tended use of findings to reduce HIV-related stigma and also

for publication in academic journals and reports. The researcher

reassured all interviewees of anonymity.

Results

PLHIVs’ Source of Information of HIV Status

All the 30 PLHIV interviewed said that they were informed

of their HIV positive status when they went to the hospital ei-

ther for diagnosis and treatment of ailments other than HIV or

for voluntary counseling and testing (VCT). The findings show

that twenty (66.7%) of them went to the hospital as a result of

frequent fever; five (5) representing 16.7% as a result of fre-

quent coughing; two (2) representing 6.7% because of frequent

diarrhea; another group of two (2) also representing 6.7% be-

cause skin rashes; and one (1) representing 3.3% because of

voluntary counseling and testing.

The following are some of the responses they gave to the

question: “how did you know your HIV status?”

 I had some rashes and fever and went to the hospital for a

test and scan. It was noted there that I had HIV (a young

lady, in-depth interview);

 I was in Accra and started coughing seriously so I went for

tests, but the first lab found nothing. After a lab test at

Apam, I was diagnosed of HIV (male, in-depth interview);

 It all started when I returned from Nigeria in the 80s. I

started falling ill frequently with severe cough. I went to

hospitals for treatment until recently when a test conducted

declared I had HIV (female, in-depth interview);

 I used to cough and had blood in the phlegm that came out,

so I went to the hospital and was diagnosed of HIV (female,

in-depth interview).

The most common opportunistic illness/infection often diag-

nosed in HIV-infected persons in Ghana is tuberculosis which

goes with severe cough. Only one out of the thirty respondents

went to the hospital for voluntary counseling and testing for

E. KOKA ET AL.

234

HIV, an indication that voluntary testing might be very low in

the Central Region. Various reasons may account for this low

level of voluntary testing in the Central Region; however it has

been argued that the fear of stigmatization prevents people from

going for voluntary counseling and testing in HIV.

Source of General Information about HIV and AIDS

by Persons, Who Di d No t Know Their Status

All the 50 respondents, who did not know their HIV status,

were aware of HIV and AIDS. 37 of them representing 74 per-

cent indicated that their source of information of HIV was the

media and seven (7) representing 14 percent stated the school

as their source of information; as shown in Table 1 below.

Nurses and Types of Healthcare They Gave to PLHIV

Out of the ten nurses interviewed, five (5) representing 50

percent said they gave solely medical care to PLHIV visiting

their facility; three (3) indicated that they took their clients

through counseling; and two (2) representing 20 percent indi-

cated medical care and counseling. Qualitative narratives sug-

gested that some of the nurses were scared of being infected

and therefore treated their clients with caution. The following

representative narratives support this position:

 I render quality healthcare to them with great caution to

avoid infecting myself with HIV;

 I treat them just as any patient but with care;

 I don’t want to be infected. You have to make sure you do

not infect yourself (In-depth interview with a nurse).

People Living with HIV an d AIDS on Stigmatiz ation

To the question, “do some people stigmatize you because of

your HIV/AIDS status?” Out of the 30 PLHIV interviewed, 20

representing 66.7% said “no” to the question, whiles 10 repre-

senting 33.3% answered the question in the affirmative.

Respondents, who felt rejected, stigmatized and discrimi-

nated against reported going through a lot of psychological

trauma and this affected their state of health negatively, as

stated in the following narratives:

 Because my family rejected me;

 My nieces and nephews do not even want to use things like

utensils and cups that belong to me;

 Some people who know my status refuse to interact with

me;

 Through negative attitude when we were quarreling;

 I get worried when I go through this discrimination from

friends;

 In fact these actions make me have sleepless nights and I

am very lean and pale. Initially, I was thinking and always

crying so it really affected me but I do not bother now;

 It is affecting me seriously, psychologically and health-

wise;

 I have lost my self-esteem and identity;

 It was affecting me when my mum was avoiding me (An in-

depth interview session with a female Aids patient).

PLHIV, who were well-received and treated positively re-

ported on their feelings as follows:

 I am fine because my wife treats me well;

 Since people are nice to me, I am fine;

 The love and care and concern they show rather make me

healthy and strong;

Table 1.

Source of general information about HIV and AIDS of persons, who

did not know their status.

Frequency Percent

School 7 14.0

Print and electronic media 37 74.0

Friends 4 8.0

Books 1 2.0

Parents 1 2.0

Total 50 100.0

 Their deeds help me to be healthy (in-depth interview with

a male aids patient).

Some PLHIV reported that they did not feel comfortable

when they were in the company of people, who had not been

tested, whiles others reported that they felt comfortable. Fifteen

(50%) PLHIV interviewed said they either felt ashamed or shy

when they were in the company of people, who had not been

tested.

Drinking or Not Drinking from the Same Cup

When persons who did not know their HIV status were asked

“whether or not they would share the same cup with PLHIV”,

21 (42%) answered the question in the affirmative and main-

tained that they could not be infected through the sharing of

cups. Ten (20%) said they would not drink from the same cup

used by PLHIV because of the fear of being infected. Nine

(18%) of the respondents said they would not drink from the

same cup so as to prevent getting infected. These positions are

confirmed by representative narratives below.

 The person might have a cut in the mouth and might trans-

fer the virus from the mouth to the cup and I might get in-

fected;

 Prevention is better than cure. Anything can happen by

sharing items like cup with them;

 It is dangerous to drink from a patient's cup because there

can be exchange of body fluids;

 Because I am afraid of getting infected;

 Because of fear (In-depth interview with male respondent

who did not know his HIV status).

Discussion

This study looked at the causes and effects of stigmatization

on PLHIV. The study area was the Central Regional Hospital of

Ghana. The main finding of the study was that, almost all HIV

positive respondents reported having severe cough and rashes

before being diagnosed of HIV. Again the study revealed that

people were reluctant to go for voluntary counseling and testing

for HIV. This is an indication that voluntary testing is very low

in the Central Region. Various reasons may account for this

low level of voluntary testing in the Central Region. However,

it has been argued that the fear of stigmatization prevents peo-

ple from going for voluntary counseling and testing in HIV

(Nzamb et al., 2009). The study also shows the important role

the mass media plays in information dissemination in Ghana

since the majority of respondents got informed about HIV/

AIDS through the mass media.

E. KOKA ET AL.

Available research and literature (GAC, 2011) showed that

the mode of health care delivery to PLHIV also leads to stigma-

tization and discrimination. Findings in this study suggest ele-

ments of discrimination against PLHIV by health workers who

indeed must be at the fore front of creating a positive awareness

and attitude to PLHIV. Findings show that the mode of health

care delivery to PLHIV patients by some health practitioners

may lead to stigmatization because of their fear of being in-

fected.

Findings show that stigmatization of and discrimination

against PLHIV has reduced them to the state of “social” death,

which may prevent others from taking tests to know their status

to adopt healthy behavior as a way of preventing the spread of

the disease. It has been argued that due to the reactions of oth-

ers as well as the internalized self-feelings (Annemiek Schadé

et al., 2013) stigmatized persons’ life chances and opportunities

are lessened, they are set apart from others. They are considered

to be inferior and represent a danger to society. All these lead to

social rejection and social isolation (Goffman, 1963). These

findings confirm the view that stigmatized persons often lose

their social status (Crocker et al., 1991); they are discounted

and discredited or reduced in the minds of others from being

whole and acceptable individuals. So, if you have AIDS you

“die” twice because the first thing that kills you is being lonely

when everyone discriminates against you long before your bio-

logical death.

Conclusion

Stigmatization of and discrimination against People Living

with HIV and AIDS are complex and interrelated phenomena

caused by multiplicity of factors, which could be broadly cate-

gorized as misconceptions due to lack of knowledge of HIV

and AIDS, fear of HIV and AIDS (reactions) and the mode of

health care delivery to People Living with HIV and AIDS. An

important revelation from the study was that many People Liv-

ing with HIV and AIDS did not disclose their status to their

relatives and friends because they feared of being stigmatized

and discriminated against. The study also found out that stig-

matization and discrimination undermine efforts at AIDS pre-

vention because fear of the reactions of others prevents people

from finding out whether or not they are infected. In effect,

many people get infected with HIV and continue to engage in

risky sexual and other behaviors with those who are “not in-

fected” and thereby putting them at risk. Findings discussed in

this paper showed the persistency of HIV and AIDS related

misconceptions which require equally consistent health promo-

tion and education among both care providers and the general

public.

Weakness of the Study

The main weakness of this study was that, it was conducted

in only one hospital. For this reason the results cannot be gen-

eralized. However, the qualitative narratives of the interviewees

indicated their actual feelings.

Competing Interests

The authors hereby declare that they have no competing in-

terests.

Authors’ Contributions

At the conception, design and implementation, and data col-

lection stages of this paper EK, CKA, and DKA were all in-

volved. After the collection of the data, EK did the analysis, after

which all the three authors again collectively wrote the paper,

proofread and finalized it.

Acknowledgements

We are grateful to the staff of the Central Regional Hospital

for assisting us to complete this study. We also thank our re-

spondents, both the infected and the affected, who shared their

experiences with us by participating in the study. Without them

we could not have carried out this study.

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