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A STUDY ON STIGMA AND DISCRIMINATORY ATTITUDES AND
PRACTICES TOWARDS PEOPLE LIVING WITH HIV/AIDS IN THE
COMMUNITY: AMUKOKO EXPERIENCE.
BY
FRANCISCA U. MADUIKE
A RESEARCH PROJECT PRESENTED TO THE COMMUNITY HEALTH
OFFICER TRAINING PROGRAMME, INSTITUTE OF CHILD HEALTH AND
PRIMARY CARE, LAGOS UNIVERSITY TEACHING HOSPITAL (LUTH) IN
PARTIAL FULFILLMENT FOR THE AWARD OF HIGHER DIPLOMA IN
COMMUNITY HEALTH.
NOVEMBER, 2010.
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CERTIFICATION
This is to certify that this research is an original work done by Francisca U. Maduike, under
the supervision Mrs. A.O C Onyenwenyi. It has never been submitted for any publication
before this time. The assistance of other people have been duly acknowledged.
FRANCISCA U. MADUIKE
DATE…………………….. SIGN.………………………
Supervised by
MRS A. ONYENWENYI
DATE……………………….. SIGN…………………………
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DEDICATION
This project is dedicated to: God Almighty, the healer of all illnesses and my Congregation,
Medical Missionaries of Mary group, who have been offering holistic healing to the people
of God for the past 73 years.
Finally to all those who are either infected or affected with HIV/AIDS
ACKNOWLEDGEMENTS
I give God all the glory for being with me all through the period of this course (CHO)
and for making this project a success. I sincerely wish to thank Mrs. A. O. C.
Onyenwenyi, my supervisor, for her patience and humane correction which has
given rise to this project write-up.
I will also like to thank the following people for immense support and assistance:
Mrs. G. Sanwo – Assistant Director CHO Programme LUTH; Mrs. R. I. Udeh -
Course Coordinator; Mrs. Omoboye - Lecturer CHO LUTH Pakoto; Georgina
Ndulaka – STOPAIDS Organization; and Rev Sr. Felicia Muoneke of Medical
Missionaries of Mary, HIV/AIDS Coordinator West Africa.
I thank you all.
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ABSTRACT
The HIV/AIDS epidemic/pandemic has been accompanied by stigma and discrimination
since its inception and their associated realities have compounded the effects of the
disease. Increasingly HIV/AIDS-related stigma and discrimination are acknowledged as
one of the greatest challenges to slowing the spread and the major roadblock to the goal
of universal access to the treatment, care and support. According to the joint United
Nations programme on HIV/AIDS (UNAIDS), HIV/AIDS-related stigma and discrimination
is a „real or perceived negative response to a person or persons by an individual,
community or society‟. It is characterized by exclusion, rejection, blame and devaluation of
such persons.
The majority of respondents were patients in St Theresa‟s Clinic Amukoko, popularly
known as Fada Clinic. This Clinic is being managed by Medical Missionaries of Mary
(MMM) for Amukoko people and its environs. It studied their experience on discrimination
and stigma by family members and relatives, or colleagues/employers at work, which
could be government or individuals.
About 150 questionnaires were designed and distributed to PLWHAs while 100 were
designed and distributed to the community members making a total of 250 questionnaires.
Oral interviews through focus group discussions and observations were considered in
questionnaire design. Data collection was done through a simple random sampling
technique and analysis was done with Statistical Programme for Social Science package.
The purpose of the study is to describe the stigma and discrimination practices among the
community and people living with HIV/AIDS (PLWHAs), to provide information and
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guidance to those in the health care settings about why it is important to combat HIV-
related stigma and discrimination, and how to successfully address its cause and
consequences within Amukoko community.
The results revealed that the majority of the PLWH/As respondents in Amukoko are being
discriminated against in the family by family members and in their ARV center by health
workers. This negative social response to PLWH/A remains pervasive even in a seriously
affected community like Amukoko.
From the research findings it is evident that not all family responses are positive and
healthy despite the Nigerian culture of hospitality and family, which should abound.
PLWH/As therefore find themselves stigmatized and discriminated against in their own
homes by close relations, husbands, wives, friends, employers and colleagues at work,
with women on the verge of it.
Studies from different parts of the world reveal that there are main immediate actionable
causes of HIV-related stigma like: lack of awareness of what stigma looks like and why it
is damaging, fear of casual contact stemming from incomplete knowledge about HIV
transmission and the association of HIV with improper or immoral behaviour.
To combat stigma and discrimination, interventions must focus on the individual,
environment and policy levels. What is needed now is the political will and resources to
support and scale up stigma-reduction activities through health care settings globally, to
engage PLAs into empowerment groups of self determination and social change, work
with lawyer‟s organizations and use law to advance legal protection, e.g. the lawyers‟
collective in India and AIDS law project in South Africa, both of which have defended the
rights of people living with AIDS against discrimination and stigma. The South Africa
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treatment action campaign, where members announce they are HIV positive and assert
their rights to prevention and treatment, is an empowerment approach involving a
combination of social mobilization, know your rights and treatment literacy campaigns, and
strategic litigation.
The key recommendations from this research include the empowerment of the stigmatized
group, i.e. the PLWH/As, as well as their involvement in the design and implementation of
prevention programs. Furthermore the focus of health education for behavior change
communication strategies is family members or those with significant relationships to
PLWH/As, and health care providers, who were the major groups found to discriminate
against PLWH/As. Finally health education campaigns should integrate a change from fear
to caring for PLWH/As.
Definition of terms:
Stigma - Stigma refers to unfavourable attitudes and beliefs directed toward someone or
something.
HIV/AIDS-related stigma - HIV/AIDS-related stigma refers to all unfavourable attitudes
and beliefs directed toward people living with HIV/AIDS (PLWH/As) or those perceived to
be infected, and toward their significant others and loved ones, close associates, social
groups, and communities.
Discrimination - Discrimination is the treatment of an individual or group with partiality or
prejudice. Discrimination is often defined in terms of human rights and entitlements in
various spheres, including healthcare, employment, the legal system, social welfare, and
reproductive and family life.
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Epidemic - A large number of cases of HIV disease that happen at the same time, an
outbreak, or a sudden increase in HIV occurence in an area
PLWH/A - People living with HIV and AIDS. These are the people who are infected by the
virus of HIV who are being stigmatised and discriminated upon because of their HIV
status.
KAP - This is knowledge, attitudes, and practices towards people who live with AIDS and
those they manifest amongst themselves.
Scourge – A cause of great suffering and affliction, especially to many people
Pandemic – Describing a widespread epidemic of a disease, one that affects a whole
country
Fight – Attack or engage in combat
Ravaging – To cause extensive damage to a place, to destroy it
Battle – A long or difficult struggle
War – An open state of armed conflict, open hostility, ferocity
Raging – To cause extensive damage, destruction
Carrier – Someone who is infected by a disease-causing organism, who may remain
without symptoms but is capable of transmitting to others
Dreaded - Horrific
Burden – Difficulty, problem
Ordeal – A difficult, painful, or testing experience
Victim – A person subjected to death, suffering, and ill treatment
Sufferers – To deteriorate because of something
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Patient – A person who is sick and is being treated by or is registered with a doctor,
dentist, etc.
Tackle – To deal with something awkward or difficult
Treat – To take care or deal with a person, illness, or injury, medically
Havoc – Great destruction or damage
TABLE OF CONTENTS
Title page---------------------------------------------------------------------------------- i
Certification-------------------------------------------------------------------------------- ii
Dedication--------------------------------------------------------------------------------- iii
Acknowledgements----------------------------------------------------------------------- iv
Abstract-------------------------------------------------------------------------------------- v
List of acronyms ------------------------------------------------------------------------- viii
Table of contents --------------------------------------------------------------------------- x
LIST OF TABLES
Table 1: Age range of respondents------------------------------------------------------55
Table 2: Sex distribution-------------------------------------------------------------------55
Table 3: Marital status----------------------------------------------------------------------56
Table 4: Level of education----------------------------------------------------------------56
Table 5: Occupation of respondents-----------------------------------------------------57
Table 6: Religion of respondents ---------------------------------------------------------57
Table 7: Ethnic group------------------------------------------------------------------------58
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Table 8: HIV is the same as AIDS--------------------------------------------------------58
Table 9: Have you seen any HIV+ person?---------------------------------------------59
Table 10: Person with HIV can‟t be in the same house with me--------------------59
Table 11: I can eat, sleep, live with any HIV positive person-----------------------60
Table 12: A HIV+ child cannot play with my child--------------------------------------60
Table 13: I will discontinue my marriage if my partner is positive-------------------61
Table 14: HIV+ people cannot be tenants in my house--------------------------------61
Table 15: It is better for HIV positive people to have a separate community like a
leprosarium----------------------------------------------------------------------------------------62
Table 16: I would like to know any of my family members who test positive---------62
Table 17: I will kill myself if I test positive---------------------------------------------------63
PLWHA QUESTIONAIRE
Table 18: Age Range of Respondents ------------------------------------------------------64
Table 19: Sex distribution----------------------------------------------------------------------64
Table 20: Marital Status ------------------------------------------------------------------------65
Table 21: Level of education--------------------------------------------------------------------65
Table 22: Occupation of Respondents-------------------------------------------------------66
Table 23: Religion--------------------------------------------------------------------------------66
Table 24: Ethnic group--------------------------------------------------------------------------67
Table 25: Knowledge of HIV meaning------------------------------------------------------67
Table 26: Knowledge of AIDS meaning----------------------------------------------------68
Table 27: Is HIV the same as AIDS? ---------------------------------------------------------68
Table 28: Percentage of Nigerians living with HIV/AIDS------------------------------69
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Table 29: Experience on discrimination----------------------------------------------------69
Table 30: Place of discrimination------------------------------------------------------------70
Table 31: Family nature of discrimination-------------------------------------------------70
Table 32: Experience of stigmatization----------------------------------------------------71
Table 33: Nature of stigmatization----------------------------------------------------------71
Table 34: Disclosure of status---------------------------------------------------------------72
Table 35: Mode of infection------------------------------------------------------------------72
Table 36: Social consequences of HIV status------------------------------------------73
LIST OF FIGURES
Fig 1: The cycle of stigmatization, discrimination and human rights violation...48
Fig 2: Representation of educational level of Respondents----------------------- 63
CHAPTER ONE
1.0 Introduction ------------------------------------------------------------------------------1
1.1 Brief overview of HIV/AIDS---------------------------------------------------------1
1.2 Epidemic of HIV/AIDS in Africa ---------------------------------------------------2
1.2.1 The 1960s - Early cases of AIDS--------------------------------------------------2
1.2.2 The 1970s -The first AIDS epidemic---------------------------------------------2
1.2.3 The 1980s - Spread and reaction---------------------------------------------------3
1.2.4 The epidemiology and trends-------------------------------------------------------3
1.2.5 Factors that have contributed to the current AIDS crises in Africa--------5
1.3 HIV/AIDS in Nigeria-------------------------------------------------------------------6
1.3.1 Issues of stigma and discrimination related to HIV and AIDS----------------9
1.3.2 Factors contributing to the spread of HIV in Nigeria. ------------------------10
1.3.3 Lack of sexual health information and education-----------------------------10
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1.3.4 HIV testing-------------------------------------------------------------------------------11
1.3.5 Cultural practices------------------------------------------------------------------------11
1.3.6 Poor health care system-------------------------------------------------------------12
1.4 Justification of the study ----------------------------------------------------------12
1.5 Statement of the problem------------------------------------------------------------13
1.6 General objectives---------------------------------------------------------------------13
1.7 Specific objectives-----------------------------------------------------------------14
1.8 Significance of the study-----------------------------------------------------------14
1.9 Research questions-----------------------------------------------------------------15
1.10 Study limitations----------------------------------------------------------------------15
CHAPTER TWO:
2.0 Literature Review---------------------------------------------------------------------17
2.1 Introduction ---------------------------------------------------------------------------17
2.2 Brief background---------------------------------------------------------------------17
2.3 Concept of stigma and discrimination-------------------------------------------18
2.4 Factors fuelling stigma and discrimination for PLWH/As------------------19
2.4.1 Interpersonal level factors----------------------------------------------------------19
2.4.2 Inadequate knowledge and misconceptions------------------------------------19
2.4.3 Fear--------------------------------------------------------------------------------------20
2.4.4 Community-related factors-----------------------------------------------------------20
2.4.5 Cultural values leading to moral judgment-------------------------------------21
2.4.6 Labeling and stereotyping----------------------------------------------------------22
2.4.7 Use of power---------------------------------------------------------------------------23
2.4.8 Equity and gender considerations of stigma and discrimination---------24
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2.4.9 Factors that contribute to HIV-related stigma--------------------------------24
2.5 Effects of stigmatization of PLWH/As--------------------------------------------24
2.5.1 Withdrawal and depression--------------------------------------------------------26
2.5.2 Inability to disclose status and other consequences------------------------26
2.5.3 Rejection in some health facilities and workplace problems----------------27
2.5.4 Lack of access to treatment and other consequences ---------------------28
2.6 Forms/types of stigmatization-----------------------------------------------------29
2.6.1 Intrapersonal level stigmatization-------------------------------------------------29
2.6.2 Interpersonal level stigmatization-------------------------------------------------29
2.6.3 Family------------------------------------------------------------------------------------30
2.6.4 Community level stigmatization----------------------------------------------------31
2.6.5 Structural/institutional level stigmatization-------------------------------------32
2.6.6 Government stigmatization through laws and regulations-----------------33
2.6.7 Restrictions on travel and stay-----------------------------------------------------34
2.7 Concept of discrimination------------------------------------------------------------34
2.8 Forms/types of discrimination-------------------------------------------------------35
2.8.1 Discrimination by age---------------------------------------------------------------36
2.8.2 Discrimination by sex----------------------------------------------------------------36
2.8.3 Discrimination by social class-----------------------------------------------------37
2.8.4 Discrimination by race and color-------------------------------------------------37
2.8.5 Discrimination occurring in institutions------------------------------------------37
2.8.6 Other examples of discrimination------------------------------------------------39
2.9 Historical outline on issues of discrimination---------------------------------39
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2.10 Effects of discrimination------------------------------------------------------------40
2.11 Stigma reduction approaches-----------------------------------------------------40
2.12 Nigerian efforts to reduce discrimination and stigma------------------ -----42
2.13 Global efforts towards the reduction of discrimination ----------------------43
2.14 Stigma, discrimination and human rights: an intimate connection------44
2.15 The rights of PLWH/As-------------------------------------------------------------45
2.16 Conclusions-------------------------------------------------------------------------48
CHAPTER THREE
3.0 Methodology (materials and methods) ---------------------------------------50
3.1 Study Area---------------------------------------------------------------------------50
3.2 Map of the study area-------------------------------------------------------------52
3.3 Study design-------------------------------------------------------------------------53
3.4 Study population--------------------------------------------------------------------53
3.5 Sampling technique----------------------------------------------------------------53
3.6 Sample size determination-------------------------------------------------------53
3.7 Data collection tools----------------------------------------------------------------54
3.8 Data collection procedure---------------------------------------------------------54
3.9 Data analysis-------------------------------------------------------------------------54
3.10 Ethical considerations-----------------------------------------------------------54
CHAPTER FOUR
4.0 Data presentations and analysis -------------------------------------------------55
4.1 Community questionnaire------------------------------------------------------------55
4.2 PLWH/A questionnaire tables--------------------------------------------------------64
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CHAPTER FIVE
5.1 Discussion and findings-------------------------------------------------------------74
5.2 Conclusions-----------------------------------------------------------------------------77
5.3 Recommendations-------------------------------------------------------------------79
5.4 References---------------------------------------------------------------------------------81
5.5 Questionnaire-------------------------------------------------------------------------------84
CHAPTER ONE
1.0 INTRODUCTION/BACKGROUND OF THE STUDY
1.1 Brief historical overview of HIV and AIDS
The human immuno-deficiency virus (HIV) is the viral agent which causes the acquired immuno-deficiency
syndrome (AIDS), a disease condition in which the body is open to various infections which it should have
been able to control (Weeks and Alcamo, 2009). It was first recognized in 1981(Adebajo et al, 2003; Alonzo
and Reynolds, 1995) and has continued to ravage the world despite the magnanimous efforts to curtail its
spread. Stigma is one of the factors hindering the efforts to minimize the spread (Bekele and Ali, 2008;
UNAIDS, 2008b).
Globally, over 33 million people are living with HIV/AIDS (UNAIDS, 2008b). 67% of these people live in sub-
Saharan Africa, which includes Nigeria. Two million people died of AIDS while 2.7million new infections
occurred worldwide in the year 2007 (UNAIDS 2008b). Globally, women account for half of PLWH/As, while
in sub-Saharan Africa 60% of the PLWH/As are women. Young people between the ages of 15-24 account
for 45% of new infections worldwide. New HIV infections in East Asia rose by 20% in 2007. In Latin America,
Brazil bears the brunt of HIV infections with a prevalence of 0.3% to 1.6% (UNAIDS, 2008).
1.2 HIV in Sub-Saharan Africa
There is now conclusive evidence that HIV originated in Africa. A 10-year study completed in 2005 found a
strain of Simian Immunodeficiency Virus (SIV) in a number of chimpanzee colonies in the south-east of
Cameroon that was a viral ancestor of the HIV-1 that causes AIDS in humans.
A complex computer model of the evolution of HIV-1 has suggested that the first transfer of SIV to humans
occurred around 1930, with HIV-2 transferring from monkeys found in Guinea-Bissau. At some point in the
1940s studies of primates in other continents did not find any trace of SIV, leading to the conclusion that HIV
originated in Africa (Abstracted from the 2008 report on the global AIDS Epidemic, UNAIDS, August, 2008.).
1.2.1 The 1960s - Early cases of AIDS
Experts studying the spread of the epidemic suggest that about 2,000 people in Africa may have been
infected with HIV by the 1960s. Stored blood samples from an American malaria research project carried out
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in the Congo in 1959 prove one such example of early HIV infection (HIV Epidemic in Sub-Saharan Africa,
1995-2000).
1.2.2 The 1970s - The first AIDS epidemic.
It was in Kinshasa in the 1970s that the first epidemic of HIV/AIDS is believed to have occurred. The
emerging epidemic in the Congolese capital was signaled by a surge in opportunistic infections, such as
cryptococcal meningitis, Kaposi‟s sarcoma, tuberculosis and specific forms of pneumonia.
It is speculated that HIV was brought to the city by an infected individual who travelled from Cameroon by
river down into Congo. On arrival in Kinshasa, the virus entered a wide urban sexual network and spread
quickly. The world‟s first heterosexually-spread HIV epidemic had begun.
1.2.3 The 1980s - Spread and reaction
Although HIV was probably carried into Eastern Africa (Uganda, Rwanda, Burundi, Tanzania and Kenya) in
the 1970s from its western equatorial origin, it did not reach epidemic levels in the region until the early
1980s. Once HIV was established rapid transmission rates in the eastern region made the epidemic far more
devastating than in West Africa, particularly in the areas bordering Lake Victoria. The accelerated spread in
the region was due to a combination of widespread labour migration, a high ratio of men in the urban
populations, low status of women, lack of circumcision, and prevalence of sexually transmitted diseases. It is
thought that the sex workers played a large part in the accelerated transmission rate in East Africa. In
Nairobi, for example, 85% of sex workers were infected with HIV by 1986. Uganda was hit very hard by the
AIDS epidemic in the 1980s. At the beginning of the decade, doctors were confronted by a surge in the
cases of a severe wasting disease known locally as „slim disease‟, alongside a large number of fatal
opportunistic infection such as Kaposi‟s sarcoma. By this time doctors were aware of AIDS cases with similar
symptoms in the United States.
1.2.4 Epidemiology and Trends
An estimated 1.9 million people were newly infected with HIV in sub-Saharan Africa in 2007. In total, 22
million people are living with HIV in the region, which is two thirds (67%) of the global population of people
with HIV. Most epidemics in sub-Saharan Africa appear to have stabilized (some at a very high level, such
as in southern Africa). In a growing number of countries, adult HIV prevalence appears to be falling. For the
region as a whole, women are disproportionately affected in comparison with men, with especially stark
difference between the sexes in HIV prevalence among young people.
Sub-Saharan Africa‟s epidemics vary significantly from country to country in both scale and scope. Adult
national health prevalence is below 2% in several countries of West and Central Africa, as well as in the
Horn of Africa, but in 2007, it exceeded 15% in seven southern African countries (Botswana, Lesotho,
Namibia, South Africa, Swaziland, Zambia and Zimbabwe). It was above 5% in seven other countries, mostly
in Central and East Africa (Cameroon, the Central Africa Republic, Gabon, Malawi, Mozambique, Uganda,
and the United Republic of Tanzania).
In southern Africa, reductions in HIV prevalence are especially striking in Zimbabwe, where HIV prevalence
in pregnant mothers attending antenatal clinics fell from 26% in 2002 to 18% in 2006. In Botswana, a drop in
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HIV prevalence among pregnant 15-19-year-olds (from 25% in 2002 to 18% in 2006) suggests that the rate
of new infections could be slowing. The epidemics in Malawi and Zambia also appear to have stabilized,
amid some evidence of favourable behavior changes and signs of declining HIV prevalence among women
using antenatal services in many urban areas.
AIDS is a leading cause of death in southern Africa. Sub-Saharan Africa makes up one-tenth of the world‟s
population, but two-thirds of the HIV-positive population and more than 80% of all AIDS deaths occur in this
region. In 1999, nearly 70% of the 5.6 million new cases of HIV infection occurred in sub-Saharan Africa.
Uganda established a national AIDS Control Program in 1987 and hosted the first phase 1HIV vaccine trial in
1999, taking the lead in AIDS prevention efforts in Africa. Through extensive education efforts, approximately
90% of the population in Uganda has awareness about HIV and AIDS, and many people have adopted safe
sex practices. Unfortunately many other African countries have not followed the Ugandan lead.
Even grimmer is the fact that most people in Africa cannot afford the antiretroviral drugs that are the
cornerstone of AIDS care in the United States and other Western nations, which can cost more than $20,000
per year. Although efforts are made to lower the cost, even an 80% cut in price may not be enough to make
the drugs affordable.
Further, the strict regimen that the drugs require often demands a drastic change in lifestyle that is difficult
for many people. Even more basic than medicine, many HIV-infected Africans are undernourished and
hungry. Getting food to these people may be even more important than providing medications. (Abstracted
from the 2008 Report on the Global AIDS Epidemic, UNAIDS, August, 2008.)
1.2.5 Factors that have contributed to the current AIDS crises in Africa.
There is a likelihood that the HIV virus originated in Africa and the spread had evolved before preventive
actions could be taken. Though researchers of different ages have claimed that HIV originated from
Africa, up till now many Africans still believe that HIV is a white man‟s disease (came from European
countries. There is even a name given to AIDS: American Idea of Discouraging Sex).
Fierce denial on the part of many people, including presidents of African nations, that HIV causes AIDS,
that sex education is necessary to stop its spread, and that Western medicine or science can be trusted.
Inability to pay for the expensive antiretroviral drugs. Most people in Africa cannot afford the antiretroviral
drugs that are the cornerstone of AIDS care in the United States and other Western nations, which can
cost more then $20,000 per year. Although efforts are being made to lower the cost, even an 80% cut in
price may not be enough to make the drugs affordable. In Nigeria today the drugs are made free and
available but fear of stigma and discrimination is limiting PLAs from accessing them.
Malnourishment and poor health of the people in Africa. Africa is a developing nation and any developing
nation is seen as poor because the standards for measuring health, economic and social development
have not been reached. They still face poor health status and are battling with many preventable and
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acute diseases like diarrhea, cholera, measles, polio, etc. Many PLAs are among the very poor and the
consequence of poverty is malnutrition. Though their drugs are free, they cannot afford to eat two
adequate meals a day to sustain the strong drugs they are taking since many of those drugs induce
hunger. HIV is a disease of poverty. Many sex workers do the business for a living. Our youth (female)
and widows are predisposed to HIV/AIDS due to poverty. If poverty is eliminated in the lives of the people,
HIV incidence will reduce.
1.3 HIV/AIDS in Nigeria
The first two cases of HIV and AIDS in Nigeria were identified in 1985 and were reported in 1986 at an
international AIDS conference (FMOH, 2005). One was diagnosed in Lagos State in a thirteen year-old girl
(Eze, 2009; Alubo et al., 2002). In 1987 the Nigerian health sector established the National AIDS Advisory
Committee, which was shortly followed by the establishment of the National Expert Advisory Committee on
AIDS (NEACA). (htt://www.avert.org/aids-nigeria.htm). Since then the prevalence rate rose from 1.6% in
1991 to 5.8% in 2001, declined to 5% and 4.4% in 2003 and 2005 respectively (FMOH,2007), but increased
again to 4.6% in 2008 (FMOH,2009a). When Olusegun Obasanjo became the president of Nigeria in 1999,
HIV prevention, treatment and care became one of the government‟s primary concerns. The President‟s
Committee on AIDS and the National Action Committee on AIDS (NACA) were created, and in 2001, the
government set up a three-year HIV/AIDS Emergency Action Plan (HEAP). In the same year, the president
hosted the African summit on HIV/AIDS, which declared HIV/AIDS situation an emergency in Africa (OAU,
2001). Nigeria has the third highest number of PLWH/As in the world – about 2.86 million – and a cumulative
death total of 1.45 million (FMOH, 2007 p.11). With the increased awareness, provision of ARV drugs, and
support services offered now by Government, NGOs and Faith-based Organizations, there is a drastic
reduction in mortality rate, though discriminatory attitudes of the general masses pose a serious danger to
these services rendered.
The HIV epidemic in Nigeria is complex and varies widely by region. In some states, the epidemic is more
concentrated and driven by high-risk behaviours, while other states have more generalized epidemics that
are sustained primarily by multiple sexual partnerships in the general population. Youth and young adults in
Nigeria are particularly vulnerable to HIV, with young women at higher risk than young men. There are many
risk factors that contributes to the spread of HIV, including prostitution, high risk practices among itinerant
workers, a high prevalence of sexually transmitted infections, clandestine high-risk heterosexual and
homosexual practices, international trafficking of women, and irregular blood screening. The size of the
population and the nation pose logistical and political challenges particularly due to the political
determination of the Nigerian Government to achieve health care equity across geopolitical zones. The
necessity to coordinate programmes simultaneously at the federal, state and local levels introduces
complexity into planning. The large private sector is largely unregulated and, more importantly, has no formal
connection to the public health system where most HIV interventions are delivered. Training and human
resource development is severely limited in all sectors and will hamper programme implementation at all
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levels. Care and support is limited because existing staff are overstretched and most have insufficient
training in key technical areas to provide complete HIV services.
HIV/AIDS is one of the deadly diseases that is finishing people in Nigeria due to lack of knowledge on
preventive measures, which is fuelled by silence as a result of stigma and discrimination of those infected.
There are 156,000 cases of HIV in Bauchi State as of 2008. This indicates the nationwide prevalence may
be higher than reported.
There is greater awareness now than before due to the efforts of Government, Religious bodies and NGOs
like GHAIN (Global HIV and AIDS Initiative in Nigeria), STOPAIDS ORGANISATION, Family Health
International (FHI) and many others who are trying to offer supportive care to PLWH/As.
1.3. 1 Issues of Stigma and Discrimination related to HIV/AIDS.
UNAIDS characterizes HIV/AIDS discrimination as a process of devaluation of those infected. Discrimination
against PLWH/As is one of the greatest barriers preventing PLWH/As from accessing care, support and
treatment services.
HIV/AIDS-related stigma and discrimination takes many forms against people living with the disease. In
developing countries, families are the primary caregivers. They play a major role in providing care and
support to their members who are sick.
From the time of the scientific discovery of HIV/AIDS, social responses of fear, denial, stigma and
discrimination have accompanied it, probably because of the slimy, skinny, ugly-looking pictures that were
used during adverts in those days. They showed not only that people who are infected die easily but many
other opportunistic diseases that followed. Another reason for stigma and discrimination is because HIV is a
life-threatening disease: there is ignorance of the spread of the disease and fear of contagion coupled with
negative, value-based assumptions about people who are infected. The Igbos call it “obiri n‟aja ocha” which
means: “a disease that ends in the grave”.
Yorubas call it “atogbe!” while Hausas call it “ciwon zamani” (kanjamau). All these names depict terrible and
deadly illnesses, making people fear whosoever is suffering from them.
Discrimination has spread rapidly, increasing anxiety and prejudice against the group most affected. Though
the epidemic has triggered responses of compassion, solidarity and support, bringing out the best in people,
families and communities, its associated discrimination and stigma is still rampaging PLWH/AS.
(Htt://www.avert.org/aids-nigeria.htm)
Stigma is seen as a tool for social control which can be used to marginalize, exclude, and exercise power
over PLWH/As. In many societies, PLWH/As are often seen as shameful. Also in some societies, they are
seen as personally irresponsible. Many societies have laws, rules and policies that can increase the
discrimination and stigma of PLWH/As. Such legislation may include compulsory screening and testing, as
well as limitation of international travel and migration. In most cases, discriminatory practices such as
compulsory screening of “at risk groups” furthers the stigmatization of such groups and create a false sense
of security among individuals who are not among the at risk groups.
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Laws that insist on compulsory notification of HIV/AIDS cases and restrict the person‟s right to anonymity
and confidentiality as well as right to movement have been justified on the grounds that the disease forms a
public health risk.
Meanwhile many developed countries like America have enacted legislation to protect the rights and
freedoms of PLWH/As and safeguard them from discrimination. This will be discussed extensively in the
literature review.
1.3.2 Factors contributing to the spread of HIV in Nigeria
There are so many factors responsible for the spread of HIV in Nigeria, however only key factors will be
discussed.
1.3.3 Lack of sexual health information and education.
Sex is traditionally a very private subject in Nigeria and the discussion of sex with teenagers is often seen as
inappropriate. Up until recently there was very little or no sexual health education for young people. This has
been a major barrier to reducing rates of HIV and other STDs. Around 20% of women and 25% of men
between the ages of 15 and 24 correctly identify ways to prevent sexual transmission of HIV and reject the
misconceptions about HIV transmission. Lack of accurate information about sexual health has meant there
are many myths and misconceptions about sex and HIV, contributing to increasing transmission rates as well
as stigma and discrimination towards PLWH/As. (Htt://www.avert.org/aids-nigeria.htm)
1.3.4 HIV testing
Another contributing factor to the spread of HIV in Nigeria is the distinct lack of voluntary and routine HIV
testing. In 2007, just 3% of health facilities had HIV testing and counseling services and only 8.6% of women
and men aged 15 -49 who had received an HIV test found out their results.
In 2006 President Obasanjo publicly received a HIV test and counseling on World AIDS Day in order to
promote the services and information available to the people in Nigeria. He stated on the day, “A great
majority of Nigerians have now come to accept the reality of AIDS”. However, the statistics show that the
Nigerian government desperately needs to scale up HIV testing rates in order to bring the epidemic under
control. (Htt://www.avert.org/aids-nigeria.htm)
1.3.5 Cultural practices
Women are particularly affected by the epidemic in Nigeria. In 2007, women accounted for the 58% of all
adults aged 15 and above living with HIV.
Traditionally, women in Nigeria marry young, although the average age at which they marry varies between
States. A study revealed that 54% of girls from the North West aged between 15-24 were married by age 15,
and 81% were married by age 18. The study included HIV/AIDS. They also tend to lack the power and
education needed. The study showed that the younger married girls lacked the knowledge on reproductive
20
health to insist upon using condoms during sex. This is coupled with the high probability that the husband will
be significantly older than the girl and therefore is more likely to have had other sexual partners in the past.
Young women are more vulnerable to HIV infection within marriage. (Htt://www.avert.org/aids-nigeria.htm)
1.3.6 Poor healthcare system
Over the last two decades, Nigeria‟s health care system has deteriorated as a result of political instability,
corruption and a mismanaged economy. Large parts of the country lack even the basic healthcare provision,
making it difficult to establish HIV testing and prevention services such as those for the prevention of mother-
to-child transmission (PMTCT). Sexual health clinics providing contraception, testing and treatment for other
STDs are also few and far between. This makes it particularly difficult to keep the spread of the epidemic
under control. (Htt://www.avert.org/aids-nigeria.htm)
1.4 Justification for study
HIV and AIDS-related stigma and discrimination have been neglected issues in most national programmes
(UNAIDS, 2008a). Experts and research have frequently identified that to effectively combat HIV/AIDS,
stigma and discrimination has to be addressed. (UNAIDS, 2008a, 2008b; Hamra et al., 2005). In Amukoko
and in many other parts of the country PLWH/As suffer various forms of enacted stigma, ranging from
avoidance or neglect to outright hostility and denial of basic human rights (Chovwen and Ita, 2006; Reis et
al., 2005; Alubo et al., 2002). The result is the avoidance of interventions addressing HIV/AIDS in order to
reduce being stigmatized, which further affects the health status of the PLWH/As. UNAIDS (2008a) clearly
identified that specific funded programmes addressing stigma and discrimination must be developed by each
country for stigma reduction interventions to be effective.
The justification to this study is to describe the various forms of stigma and discrimination that are prevailing
in Amukoko community. These will be used in designing various interventions in health education sessions
for behavioural change.
1.5 STATEMENT OF THE PROBLEM
Research has shown that stigma and discrimination against PLWH/As is another toll of death. Only a few
people can afford to have PLWH/As around them. Others can‟t due to the following:
1. Inadequate knowledge due to lack of intensified health education of the family and community members
on the cause, prevention and the spread of the disease
2. Insecurities and the pain of stigma suffered by PLWH/As
1.6 GENERAL OBJECTIVES
1. To determine the degree of discrimination and stigmatization against PLWH/As in Amukoko community
2. To ascertain the extent of HIV/ AIDS knowledge among community members in Amukoko area of Lagos
State
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3. To describe the various forms of stigma and discrimination prevailing in Amukoko community
4. To investigate the perpetrators of stigma and discrimination among PLWHA in Amukoko area
5. To describe common practices and beliefs in the community that discriminate against HIV positive
patients
6. The research findings will be used for effective health education interventions that will bring about
Behaviour Change
1.7 SPECIFIC OBJECTIVES
1. To investigate and quantify the degree of discrimination and stigma among PLWH/As and the percentage
of patients discriminated against
2. To identify the factors that are fueling stigma and discrimination practices in Amukoko community
3. To describe patients‟ common practices and beliefs in the community that discriminate against HIV
positive people
4. To describe the types and patterns of discrimination experienced by PLWH/As
5. To determine the degree of discrimination in the workplace by employees and colleagues
1. 8 SIGNIFICANCE OF THE STUDY
1. The significance of writing this research work is to ascertain the level of knowledge about HIV/AIDS
among community members in Amukoko Area of Lagos State.
2. Study results will be used for the development of behavioural change communication (BCC) strategies as
well as culturally sensitive information, education, and communication materials that will be useful in health
promotion interventions to reduce the spread of HIV/AIDS
3. The results of the research will also influence policy makers at the three tiers of government to scale up
government programmes on HIV/AIDS prevention, thereby leading to the achievement of Millennium
Development Goal 6 (MDG 6: combating HIV/AIDS + TB)
4. The study results will be useful in reducing stigma and discrimination of PLWH/As and they will be more
willing to disclose their status as well as access health services without restrictions.
5. The results of this research will provide useful information to stakeholders, e.g. Government at the three
tiers, Non Governmental Organizations (NGO), Faith-based Organizations (FBO), and other parastatals, and
health care providers to create more awareness to prevent/reduce stigmatization and discrimination among
PLWH/As.
1.9 RESEARCH QUESTIONS
1. Is there discrimination and stigma against PLWH/As in Amukoko community?
2. What are the various forms of discrimination and stigma existing in Amukoko community?
3. Who are the people that discriminate against PLWH/As in Amukoko community?
4. What are the effects of stigma and discrimination on PLWH/As?
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5. What are the possible interventions/strategies to reduce stigma and discrimination in Amukoko
community?
1.10 LIMITATIONS OF THE STUDY
Limitations are owing to the fact that the issues of stigma and discrimination are sensitive and because they
border on the respondent‟s private life and the possible attempt to conceal some types of behaviour or
practice. The issues of stigma and discrimination are complex and I shall not presume to have exhausted
every detail because individuals sometimes cover up or are not willing to disclose matters (culture of
silence), leading to failure in reporting systems.
This study tries to highlight the magnitude of discrimination and stigma. It is hoped that there will be better
statistics on the degree of this issue and appropriate actions will be taken to put an end to it.
Other limitations include:
Time constraints
Illiteracy on the part of respondents in filling the form
Sensitive issue of HIV/AIDS may affect the answers to questionnaires
Language barrier
To overcome the above limitations, a simple structured questionnaire of both Likert type and Guttman‟s
scale (scalogram) will be used in the study.
Four focused group discussion ( FGD) sessions were held in two selected facilities and the outcome was
used to design the study questionnaire as well as form part of the qualitative data for the research project.
CHAPTER TWO
2.0 Literature Review
2.1 Introduction
This chapter presents an overview of the issue of discrimination and stigma against people living with
HIV/AIDS. It is based on accounts and information gathered from published literature, consultation of friends
and personal experiences.
2.2 Brief background
The HIV/AIDS epidemic/pandemic has been accompanied by stigma and discrimination since its inception
and its associated realities have compounded the effects of the diseases. Increasingly HIV/AIDS-related
stigma and discrimination is acknowledged as one of the greatest challenges to slowing the spread and the
major roadblock to the goal of universal access to treatment, care and support. According to the joint United
Nations programme on HIV/AIDS (UNAIDS), HIV/AIDS-related stigma and discrimination is a „real or
perceived negative response to a person or persons by an individual, community or society‟. It is
characterized by exclusion, rejection, blame and devaluation of such persons.
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HIV/AIDS is not only the greatest health challenge of our time, but also the greatest human rights challenge.
Those affected shoulder the twin burdens of stigma and discrimination due to fear of being infected.
Discrimination attitudes are often directed not only towards the person with HIV/AIDS, but also towards
behaviour believed to have caused the infection. (UNAIDS 2008, UNICEF 2007).
2.3 Concept of stigma and discrimination.
AIDS stigma and discrimination exist worldwide, although they manifest themselves differently across
countries, communities, religious groups and individuals. They occur alongside other forms of stigma and
discrimination, such as racism, homophobia or misogyny and can be directed towards those involved in what
are considered socially unacceptable activities such as prostitution or drug use.
Stigma and discrimination are interrelated, reinforcing and legitimizing each other. Stigma lies at the root of
discriminatory actions, leading people to engage in actions or omissions that harm or deny services or
entitlements to others.
Discrimination can be described as the enactment of stigma, i.e. when it is arising from family and
community settings. In turn, it encourages and reinforces stigma. Actions that express stigma are often
referred to as discrimination.
Stigma has been described as a dynamic process of devaluation that „significantly discredits‟ an individual in
the eyes of others: any unfavorable attitude and belief that is directed towards someone or something
(WHO,UNAIDS &UNICEF 2008)
Stigma according to Goffman (1963 p.3) „is an attribute that is deeply discrediting‟ over the years. There has
been a shift in the definition of stigma, broadening its sociological and anthropological view. Link and Phelan
(2001, p.377) define that: “stigma exists when elements of labeling, stereotyping, separation, status loss and
discrimination occur together in a power situation that allows them”.
For Parker and Aggleton (2003 p. 17) stigmatization occurs “at the point of intersection between culture,
power and difference”. Stigma is a complex issue that varies between cultures ( Visser et al., 2009; Okoror et
al., 2008; Niehaus, 2007 and Castle, 2004.)
2.4 FACTORS FUELING STIGMATIZATION FOR PLWH/As
There are many factors contributing to and sustaining stigmatization of PLWH/As. These factors can
contribute to stigmatization at various levels and will be discussed here according to the level where they
make the most impact.
2.4.1 Interpersonal factors
This is a relationship between PLWH/As and people who are HIV negative – the attitudes of the people
around them which are exhibited in so many ways. Examples are avoidance and rejection as the case may
be. These factors contribute to stigmatization of PLWH/As by individuals and they exist due to inadequate
knowledge, misconceptions and fears.
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The majority of the people believe HIV can be gotten through body contacts like a hand shake, a hug and by
sharing the same clothing, plates and spoons. Even the so-called literate health workers are yet to come to
believe that it‟s only by the blood, mucus and body secretions of an infected person that one can get HIV.
People also believe that HIV is a spiritual attack that can be cured by fasting and prayers; thus we find many
PLWH/As sleeping in various prayer houses, refusing to take their drugs.
2.4.2 Inadequate knowledge and misconceptions
Inadequate knowledge about HIV and AIDS lead to misconceptions - like people could get HIV through
casual contact or that HIV is a punishment from God. This then leads to avoidance of contact with PLWH/As.
(Osinubi and Amaghionyodiwe, 2005; Odimegwu, 2003). Furthermore, Smith (2004) in his research among
the Igbos found that HIV/AIDS is highly associated with immorality. Associating this “discrediting attribute”
Goffman (1963 p. 3) with PLWH/As in Imo state results in their being highly stigmatized
2.4.3 Fears
Ignorance about HIV means that people are frightened, and frightened people do not behave rationally.
Inadequate knowledge and misconceptions about HIV/AIDS create fears. People who have knowledge of the
disease like doctors, health workers and nurses are also afraid of contracting the infection from accidental
punctures while treating the clients (Ndikom and Onibokun, 2007; Weiss and Ramakrishna, 2006). These
fears exist because of the debilitating nature of the disease, lack of cure, fear of being termed unfaithful by
partners, and fear of stigma leading to avoidance or rejection of PLWH/As.
Also fear of contagion coupled with negative, value-based assumptions about people who are infected leads
to a high level of stigma surrounding HIV and AIDS.
2.4.4 Community-related factors
These are factors that contribute to community stigmatization of PLWH/As and include cultural values
leading to moral judgments, stereotyping and labeling. Power and inequalities are underlying factors. In the
community power is held by the community leader and is shared to different group leaders like the women‟s
group, the youth group, age grades, etc. They have an autonomous right to make rules and regulations
guiding them and in most cases whatever they say holds. They have established rules that segregate the
HIV/AIDS members, especially those of them that fall sick often, and once they suspect drastic loss of weight
in a member. Some will ask for HIV results before registration and admission of members. They are doing so
to curb sexual immoralities which eventually dispose one to HIV infection. PLWH/A‟s children, too, are not
allowed to play with other children in the community.
2.4.5 Cultural values leading to moral judgment
Stigmatization varies according to culture or context; stigmatization arises partly from cultural norms and
moral judgments of what people should be or not be. Sexual promiscuity is unaccepted in Nigerian culture.
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The fact that HIV and AIDS have been associated with immorality since their inception into the country
predisposes all PLWH/AS in Nigeria (Mahajan et al, 2008). (Bond et al, 2002 cited by Ezeokana et al., 2008
p.448) (Ezeokana et al, 2008 and Smith, 2004)
Stigma may also vary depending on the dominant transmission routes in the country or region. In sub-
Saharan Africa, for example, heterosexual sex is the main route of infection, which means that AIDS-related
stigma in this region is mainly focused on promiscuity and sex work. “Because it is about sex, in my country
they then automatically think you got it because you have been promiscuous .You are not any better than the
prostitute…They don‟t believe you didn‟t get it any other way.” African woman in the UK
This woman‟s experience reveals the multi-layered nature of stigma. Within her quote she reveals being
stigmatized but perhaps unknowingly accepting the stigma against infected sex workers.
In western countries where injecting drug use and sex between men have been the most common sources
of infection, it is these behaviours that are highly stigmatized. Women with HIV or AIDS may be treated
differently from men in some societies where they economically, culturally and socially disadvantaged. They
are sometimes mistakenly perceived to be the transmitters of sexually transmitted diseases (STDs). Men are
more likely than women to be „excused‟ for the behaviour that resulted in their infection.
“Even a married woman who has been infected by her husband will be accused by her in-laws….In such a
male-dominated society no-one ever accepts that the man is actually the one who did something wrong… It
is even harder on women since it is seen as a fair result of their sexual misbehavior.” HIV-positive woman,
Lebanon
2.4.6 Labeling and Stereotyping
Link and Phelan (2001) state that stigma creates boundaries in the society by creating divisions like us and
them, normal and abnormal. The stigmatized groups are then labeled. PLWH/As are stereotyped as being
sexually loose and such receiving punishment for their offences (Sinbad and Amaghionyodiwe, 2005 and
Odimegwu, 2003)
The fact that HIV/AIDS is a relatively new disease also contributes to the stigma attached to it. The fear
surrounding the emerging epidemic in the 1980s is still fresh in many people‟s minds. At that time very little
was known about the risk of transmission, which made people scared of those infected due to fear of
contagion.
From early in the AIDS epidemic a series of powerful images was used that reinforced and legitimized
stigmatization. HIV/AIDS is still seen as punishment (e.g. for immoral behaviour). HIV/AIDS is still seen as a
crime (e.g. in relation to innocent and guilty victims). HIV/AIDS is seen as a horror (e.g. in which infected
people are demonized and feared).
2.4.7 The Use of Power
Power lies at the root of all stigmatizations. It could be economic, social, political or knowledge/expert power,
dominance or majority power (Link and Phelan 2001). It is the dominant power of the majority with negative
26
HIV status that makes stigma and discrimination of the minority with positive status possible. Parker and
Aggleton (2003) see stigmatization as a social contest used by those with the dominant status to legitimize
their status. Power could also influence what happens in the society when it is not used appropriately to
correct the societal anomalies. Link and Phelan (2001 p. 377) states that stigmatizations exist “in a power
situation that allows it”.
2.4.8 Equity and gender considerations of stigma & discrimination
Societal inequalities and inequities heighten stigma (Mahajan et al., 2008) and stigma itself contributes to
inequalities in the society (Heijnders and Meji, 2006). In many parts of the country inequalities exist in the
social, political and economic aspects of life and further compound stigma. NACA (2005) states that women
and young people suffer the worst impact of HIV/AIDS in the country. Ezeokana et al (2008) stated that the
most marginalized groups like widows, orphans, poor people and commercial sex workers bear the brunt of
the stigmatization. This is because they experience a double layer of stigmatization.
2.4.9 Factors that contribute to HIV/AIDS-related stigma:
HIV/AIDS is a life-threatening disease, and therefore people react to it in strong ways.
HIV infection is associated with behaviours (such as homosexuality, drug addiction, prostitution or
promiscuity) that are already stigmatized in many societies.
Most people become infected with HIV through sex, which often carries moral baggage.
There is a lot of inaccurate information about how HIV is transmitted, creating irrational behaviour and
misperceptions of personal risk.
HIV infection is often thought to be the result of personal irresponsibility.
Religious or moral beliefs lead some people to believe that being infected with HIV is the result of moral fault
(such as promiscuity or 'deviant sex') that deserves to be punished.
2.5 EFFECTS OF STIGMATIZATON ON PLWH/AS
"The epidemic of fear, stigmatization and discrimination has undermined the ability of individuals, families
and societies to protect themselves and provide support and reassurance to those affected. This hinders, in
no small way, efforts at stemming the epidemic. It complicates decisions about testing, disclosure of status,
and ability to negotiate prevention behaviours, including use of family planning services.
AIDS-related stigma has had a profound effect on the epidemic‟s course. The WHO cites fear of stigma and
discrimination as the main reason why people are reluctant to be tested, to disclose HIV status or to take
antiretroviral drugs. One study found that participants who reported high levels of stigma were more than
four times more likely to report poor access to care. These factors all contribute to the expansion of the
epidemic (as a reluctance to determine HIV status or to discuss or practice safe sex means that people are
more likely to infect others) and a higher number of AIDS-related deaths. An unwillingness to take an HIV
27
test means that more people are diagnosed late, when the virus has already progressed to AIDS, making
treatment less effective and causing early death.
The widespread fear of stigma is held accountable for the relatively low uptake of prevention of mother-to-
child transmission (PMTCT) programmes in countries where treatment is free. In the case of Botswana, for
example, despite the fact that the service is available at every antenatal centre in the country, only 26% of
pregnant women availed themselves of the opportunity to protect their unborn children. Over half refused to
take a test, and nearly half of those who tested positive did not go on to accept treatment.
Research by the International Centre for Research on Women (ICRW) found the possible consequences of
HIV-related stigma to be:
Loss of income/livelihood
Loss of marriage and childbearing options
Poor care within the health sector
Withdrawal of care giving in the home
Loss of hope and feelings of worthlessness
Loss of reputation
Others were as follows:
2.5.1 Withdrawal and Depression
Psychological problems occur in PLWH/As following their experiences of stigma (Cluver et al, 2008;
Odimegwu, 2003). They avoid coming in contact with perceived or real sources of stigma (Reidpath et al,
2005), withdraw into themselves and may go into depression.
2.5.2 Inability to disclose status and other consequences
Some PLWH/As do not disclose their status to their sexual partners (boyfriends, spouse). Other persons
that PLWH/As are unwilling to disclose status to are employers, parents, in-laws, etc. because of fear of
stigmatization. This leads to further spreading of the disease. Some miss taking their drugs in order to
conceal their status (Uzochukwu et al, 2008). Stigma has been identified for reducing the number of people
accessing counseling and testing (FMOH, 2005).
Stigma not only makes it difficult for people trying to come to terms with HIV and manage their illness on a
personal level, but it also interferes with attempts to fight the AIDS epidemic as a whole. On a national level,
the stigma associated with HIV can deter government from taking fast, effective action against the epidemic,
whilst on a personal level it can make individuals reluctant to access HIV testing, treatment and care.
UN Secretary General Ban Ki Moon says: Stigma remains the single most important barrier to public action.
It is a main reason why too many people are afraid to see a doctor to determine whether they have the
disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social
disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why the AIDS
epidemic continues to devastate societies around the world.”
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2.5.3 Rejection in some health facilities and work problems
Investigations conducted by the joint United Nations programme on HIV/AIDS (UNAIDS) and by the Panos
Institute in several African and Asian countries have highlighted the healthcare sector as the context where
the most extreme forms and frequency of stigma against persons with HIV/AIDS occur. Few studies have
quantified these phenomena.
Rejection by some health facilities and loss of employment are well documented issues in Nigeria in general
(Smith and Mbakwem, 2006; Nwanna, 2005 and CRH, 2003). This has led to some PLWH/As seeking health
care from unqualified practitioners to whom they don‟t disclose their status (CRH, 2003). This has hazardous
effects on their health like inability to assess treatment, etc. It also hinders, in no small way, efforts at
stemming the spread.
Stigma and discrimination in health care settings is not confined to developing countries. Below, an HIV
positive woman in London, UK tells us of her experience with an NHS dentist: “I have a dental problem and I
go to this clinic, and I go there, two maybe three times. So eventually I told them about my condition. They
explained that I would have to be the last appointment of the day. I have been to that room, and sat on that
chair, and the same doctor examined me as before, but after I told them I was HIV positive. So I went for the
last appointment of the day last week. They covered the chair, the light, the doctors were wearing three pairs
of gloves…‟
A review of research into stigma in institutions and health care settings advocated a multi-pronged approach
to tackling it, requiring action on the individual, environmental, and policy levels. Health care workers need to
be made aware of the negative effect that stigma can have on the equality of care patients receive; they
should have accurate information about the risk of HIV infection, the misconception of which can lead to
stigmatizing actions; and they should also be encouraged to not associate HIV with immoral behaviour.
Facilities should have sufficient equipment and information so health workers can carry out universal
precautions and prevent exposure to HIV.
Stigmatization has effects on public health interventions. It delays presentation for health care, reduces
adherence to treatment which may lead to drug resistance, and increases risk of transmission, thereby
increasing the burden of the disease (Heijnders and Meji, 2006).
2.5.4 LACK OF ACCESS TO TREATMENT AND OTHER CONSEQUENCES
Those who are living with HIV/AIDS have always found it difficult to go for treatment due to stigma and
discrimination. “Once you are seen around the centre there is always an assumption that you have the
disease.” This comment was made by a patient accessing treatment in one of the ARV centers in Lagos
State. Attitudes of the health care personnel also contribute to refusal of treatment. Many PLWH/As have
experienced stigma and discrimination in the hands of healthcare givers.
2.6 TYPES OF STIGMATIZATION
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There are two types of stigma: felt or perceived stigma and enacted stigma (Brown et al., 2003). The concept
of stigma has been applied to health conditions like tuberculosis, mental illness, leprosy and HIV/AIDS since
their recognition has been associated with daunting stigma (Cloete et al, 2008; Turan et al, 2008; UNAIDS,
2008b; Holzemerr and Uys, 2004). It also occurs at various levels: intrapersonal, interpersonal; community
and structural/institutional levels (UNAIDS, 2008a; Heijnders and Meji, 2006; Ogden and Nyblade, 2005).
2.6.1 Intrapersonal level stigmatization
This is self stigmatization by PLWH/As as a result of actual or perceived stigmatization by others, for
example PLWH/As avoiding accessing health care services for fear of stigma. It refers to „internal stigma‟ or
„self-stigma‟. Internal stigma refers to how people living with HIV regard themselves, as well as how they see
public perception of people living with HIV. Stigmatizing beliefs and actions may be imposed by people living
with HIV themselves.
2.6.2 Interpersonal level stigmatization
This occurs between PLWH/As and individuals within the PLWH/As‟ social support and networks: family,
friends and colleagues (Heijnders and Meji, 2006). For example: an individual refuses to shake hands with a
PLWH/A. A report by Ogden and Nyblade (2005 p.27) about a Tanzanian lady (PLWH/A) further exemplifies
interpersonal stigmatization. “I have been chased away by my husband…….. I beg for assistance….”
2.6.3 Family
In the majority of developing countries families are the primary caregivers when somebody falls ill. There is
clear evidence that families play an important role in providing support and care for people living with HIV
and AIDS. However, not all family responses are positive. HIV-infected members of the family can find
themselves stigmatized and discriminated against within the home. There is concern that women and non-
heterosexual family members are more likely than children and men to be mistreated.
“When I was in hospital, my father came once. Then he shouted that I had AIDS. Everyone could hear. He
said: „This is AIDS, she‟s a victim.‟ With my brother and his wife I wasn‟t allowed to eat from the same plates.
I got a plastic cup and plates and I had to sleep in the kitchen. I was not even allowed to play with the kids.”
HIV-positive woman, Zimbabwe
A Dutch survey of people living with HIV found that stigma in family settings - in particular avoidance,
exaggerated kindness and being told to conceal one's status - was a significant predictor of psychological
distress. This was believed to be due to the absence of unconditional love and support, which families are
expected to provide. Furthermore, people living with HIV are often worried about losing family and friends if
they disclose their status. As a global study illustrated, 35% of those interviewed cited this as a concern
surrounding disclosure.
2.6.4 Community level stigmatization
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This occurs between PLWH/As and the community, for example a community excluding a PLWH/A from
participating in community gatherings. The Center for Right to Health (CRH), an NGO working with PLWH/As
(2003, p16), reported a Nigerian saying, “If we identify someone as HIV positive, the village will isolate
him/her; they will not be allowed in people‟s houses...they will remain with the family… and when they die it
is the family‟s business…”
Community level stigma and discrimination towards PLWH/As is found all over the world. A community‟s
reaction to somebody living with HIV/AIDS can have a huge effect on that person‟s life. If the reaction is
hostile a person may be ostracized and discriminated against and may be forced to leave their home, or
change their daily activities such as shopping, socializing or schooling.
A British woman described the experience of her foster son in a British school: “At first relations with the local
school were wonderful and Michael thrived there. Only the head teacher and Michael‟s personal class
assistant knew of his illness…Then someone broke the confidentiality and told a parent that Michael had
AIDS. That parent, of course, told all the others. This caused such panic and hostility that we were forced to
move out of the area. Michael was no longer welcome at school. Other children were not allowed to play with
him; instead they jeered and taunted him cruelly. One day a local mother started screaming at us to keep
him away from her children and shouting that he should have been put down at birth.”
Community level stigma and discrimination can manifest as ostracism, rejection and verbal and physical
abuse.
It has even been extended to murder. AIDS-related murders have been reported in countries as diverse as
Brazil, Columbia, Ethiopia, India, South Africa and Thailand. In December 1998 Gugu Dhlamini was stoned
and beaten to death by neighbours in her township near Durban, South Africa, after speaking openly on
World AIDS DAY about her status. She was said to have brought shame to the community by declaring her
HIV positive status publicly (Brown et al., 2003 p. 4). It is therefore not surprising that 79% of PLWH/As who
participated in the global study feared social discrimination following their status disclosure.
2.6.5 Structural/institutional level stigmatization (employment)
This occurs in organizations or institutions or structures where they work. They may suffer stigma from their
co-workers and employers, such as social isolation and ridicule, or experience discriminatory practices, such
as termination or refusal of employment. Fear of an employer‟s reaction can cause a person living with HIV
anxiety. It is always at the back of their mind: “If I get a job, should I tell my employer about my HIV status?
There is a fear of how they will react to it. It may cost them their job. They may have to explain about why
they are always absent, and going to the doctors.” HIV positive woman UK
“Though we do not have a policy so far, I can say that if at the time of recruitment there is a person with HIV,
I will not take him/her. I‟ll certainly not buy a problem for the company; I see recruitment as a buying-selling
relationship. If I don‟t fine the product attractive, I‟ll not buy it.” A Head of Human Resource Development,
India
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2.6.6 Government
A country‟s laws, rules and policies regarding HIV can have a significant effect on the lives of people living
with the virus. Discriminatory practices can alienate and ostracize people living with HIV, reinforcing the
stigma surrounding the disease.
In 2008, UNAIDS reported that 67% of countries now have some form of legislation in place to protect
people living with HIV from discrimination14
. However, Ban Ki-moon, Secretary-General of the United
Nations, believes that „almost all permit at least some form of discrimination‟.
There are many ways that governments can actively discriminate against people or communities with (or
suspected of having) HIV/AIDS. Many of these laws have been justified on the grounds that the disease
poses a public health risk. Below are some examples of government level stigma and discrimination against
people living with HIV/AIDS:
President Museveni of Uganda supports the national policy of dismissing or not promoting members of
the armed forces who test HIV positive.
The Chinese government advocates compulsory HIV testing for any Chinese citizen who has been living
outside of the country for more than a year.
The UK legal system can prosecute individuals who pass the virus to somebody else, even if they did so
without intention.
2.6.7 Restrictions on travel and stay
Many counties have laws that restrict the entry, stay and residence of people living with HIV. Almost sixty
countries, territories and areas have restrictions that specifically apply to HIV or AIDS based on positive
status alone. This number does not include those countries where the legislation uses language such as
“contagious” or “transmissible disease” if HIV and AIDS are not mentioned specifically.
UNAIDS has identified around a dozen restrictions applying to HIV-positive people regarding entry, stay and
residence. Until the 4th of January 2010 the United States restricted all HIV positive people from entering the
country, whether they were on holiday or visiting on a longer-term basis. Twenty-two countries including
Egypt, Russia, and South Korea deport foreigners based on their positive status alone. Some countries have
policies that could violate confidentiality of status if, for example, a stamp is required on a waiver or passport
in order to gain entry or stay. Students living with HIV are barred from applying to study in certain countries.
(www.Hiv travel.org)
2.7 CONCEPT OF DISCRIMINATION.
When stigma is acted upon, the result is discrimination. Discrimination consists of actions or omissions that
are derived from stigma and directed towards individuals who are stigmatized. Discrimination, as defined by
UNAIDS (2000) in the protocol for identification of Discrimination Against People Living with HIV, refers to
any form of arbitrary distinction, exclusion, or restriction affecting a person, usually but not only by virtue of
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an inherent personal characteristic or perceived belonging to a particular group - in the case of HIV and
AIDS: a person with confirmed or suspected HIV-positive status - irrespective of whether or not there is any
justification for these measures. Discrimination can also be defined as a behavior in which a distinction is
made against people, that results in the person being treated unfairly or unjustly on the basis of them
belonging or perceived to belong to a particular group. It is common language that can be applicable to race,
sex, age, etc. It consists of actions or omissions that are derived from stigma and directed towards those
individuals who are stigmatized.
It can also be defined as a sociological term referring to the treatment taken towards or against a person of a
certain group in consideration based solely on class or category. Discrimination against HIV/AIDS is to treat
unfairly our brothers and sisters who are infected with the sickness. It is a negative social response to
PLWH/As. They are not socially accepted as they should be and some are left to die.
2.8 Types of discrimination
AIDS- related discrimination is of various types and may occur at various levels. There is discrimination
occurring in family and community settings, which has been described by some writers as „enacted stigma‟.
This is what individuals do either deliberately or by omission so as to harm PLWH/As and deny them of
services or entitlements. Examples of this kind of discrimination against people living with HIV-positive
include: ostracization, such as the practice of forcing women to return to their kin upon being diagnosed HIV
positive, following the first signs of illness, or after their partners have died of AIDS; shunning and avoiding
everyday contact; verbal harassment; physical violence; verbal discrediting and blaming; and denial of
traditional funeral rites.
Discrimination could be by: age, sex, racial factors, social classification, and employment/institutional.
2.8.1 Discrimination by age
Age discrimination is when one‟s age is considered especially in a culture that respects old people. A young
person living with HIV/AIDs is often treated with discord and contempt rather than an elderly person because
it is believed that the young person got it through sexual promiscuity.
2.8.2 Discrimination by sex
Women with HIV or AIDS may be treated differently from men in some societies where they are
economically, culturally and socially disadvantaged. They are sometimes mistakenly perceived to be the
transmitters of sexually transmitted diseases (STDs). Men are more likely than women to be „excused‟ for
the behaviour that resulted in their infection.
“Even a married woman who has been infected by her husband will be accused by her in-laws. In such a
male-dominated society no-one ever accepts that the man is actually the one who did something wrong. It is
even harder on women since it is seen as a fair result of their sexual misbehavior.” HIV-positive woman,
Lebanon.
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Many men are engaging in homosexual behaviour because they believe HIV is a woman‟s disease and can
only be contracted by having sex with women.
2.8.3 Discrimination by social class
This happens because of the value people place on the rich/elites of the society. There is often a social
discrimination even in family settings where some children are richer than others. Parents often prefer and
respect their rich children, let alone when the poor one is sick from HIV. Society has taken to it and it is even
common in the church and other social settings like hospitals. Once you are rich your HIV status does not
matter and nobody will even believe you have the disease; instead it will be renamed diabetes, poison, etc.
Rich people who are positive have a lot of advantages over others so they are not discriminated against.
They can afford their drugs and an adequate diet that can sustain them.
2.8.4 Discrimination by race and color
This is found between the blacks and the expatriates (whites) who are living with HIV/AIDS. In Nigeria for
example, the expatriates are respected and often preferred in everything more than our own people; their
white skin is often an intimidation. We prefer illiterate expatriates rather than a Nigerian specialist. This is not
only in relation to sickness; we prefer to patronize imported goods to our locally made quality goods and that
is why our indigenous industries suffer. Many of those imported goods cannot be used in the country where
they are made (made for export only). Our people end up suffering double discrimination because we
discriminate against ourselves here and they discriminate against us over there.
2.8.5 Discrimination in institutional settings
This is particularly seen in work places, health care services, prisons, educational institutions and social-
welfare settings. Such discrimination crystallizes enacted stigma in institutional policies and practices that
discriminate against people living with HIV, or indeed in the lack of discriminatory policies or procedures of
redress. Examples of this kind of discrimination against PLWH/As include the following:
Health-care services: reduced standard of care, denial of access to care and treatment, HIV testing
without consent, breaches of confidentiality including identifying someone as HIV-positive to relatives
and outside agencies, negative attitudes and degrading practices by health-care workers.
Workplace: denial of employment based on HIV-positive status, compulsory HIV testing, exclusion of
HIV-positive individuals from pension schemes or medical benefits.
Schools: denial of entry to HIV-affected children, or dismissal of teachers.
Prisons: mandatory segregation of HIV-positive individuals, exclusion from collective activities.
2.8.6 Other examples of discrimination are listed below.
The wife and children of a man who recently died of AIDS are ostracized from the husband‟s family
home or village after his death.
34
An individual loses his job because it becomes known that he/she is infected.
A person finds it difficult to get a job once it is revealed that he/she is infected.
A woman who decides not to breastfeed is assumed to be HIV infected and is ostracized by her
community especially her fellow women.
Discrimination is a reality of today both in developed and developing countries. Even those who are well
informed with the knowledge about it are seen to be discriminating against them. Take, for instance, in
September 1994, in Sidney, Mrs. Abbott visited a dentist and was refused treatment because of her HIV
status. Mrs. Abbott‟s experience was just another in a growing number of such discrimination by doctors and
dentists refusing to treat PLWH/As.
2.9 Historical outline on issues of discrimination.
Nobody knows the origin of discrimination. It has existed alongside the history of man. In the bible, the Jews
discriminated against the Gentiles whom they saw as slaves and unrighteous. They had nothing to do with
the Gentiles. After each social mixture like market, etc, they came back and did ablutions with the jar of
water in front of their houses before going into the house. This was because of perceived fear of being
contaminated by Gentiles in the course of the day. Jesus Christ during his time tried all he could to abolish
this Jewish law and make every one equal in the sight God. Jews or Gentiles, we belong to one God who is
the father of all. It was in the process of trying to make a difference by breaking these old and unchristian
attitudes that he was condemned and killed. However it didn‟t end there, probably because there is more to
life than death. After his resurrection, he continued till his ascension when he promised his followers the Holy
Spirit to help strengthen their work on earth. (See gospel of Mark 2:13-17, Mark 3:1-6, commandment of love
Matthew 23:37-40). Consequently we Christians are called in a special way to perpetrate this work of
abolishing discrimination of every kind among God‟s people. Jesus gave us love to govern us. Even the
golden rule says: “Do to no one what you will not want done to you”. It‟s high time we allowed our
Christian/Islamic/cultural values to take precedence over us.
2.10 Effects of discrimination.
Discrimination is disruptive and harmful at every stage of the HIV/AIDS continuum, from prevention and
testing to treatment and support. For example people who fear discrimination and stigma are less likely to
seek testing while persons who have been diagnosed may be afraid to seek necessary care. PLWH/As also
may receive suboptimal care from workers who discriminate against them. It may reduce an individual‟s
choice in health care and family social life. It may limit access to measures that can be taken to maintain
health and quality of life. It may also lead to an increase in the spread since people are afraid to come out for
testing and treatment. There may be high morbidity and mortality rates. (UNAIDS BEST PRACTICE
COLLECTION)
2.11 Ways we can reduce stigma and discrimination
35
So how can progress be made in overcoming this stigma and discrimination? How can we change people's
attitudes to AIDS? A certain amount can be achieved through the legal process. In some countries people
living with HIV lack knowledge of their rights in society. They need to be educated, so they are able to
challenge the discrimination, stigma and denial that they encounter. Institutional and other monitoring
mechanisms can enforce the rights of people with HIV and provide powerful means of mitigating the worst
effects of discrimination and stigma.
"We can fight stigma. Enlightened laws and policies are keys. But it begins with openness, the courage to
speak out. Schools should teach respect and understanding. Religious leaders should preach tolerance. The
media should condemn prejudice and use its influence to advance social change, from securing legal
protections to ensuring access to health care."Ban Ki-moon, Secretary-General of the United Nations34
However, no policy or law alone can combat HIV/AIDS-related discrimination. Stigma and discrimination will
continue to exist so long as societies as a whole have a poor understanding of HIV and AIDS and the pain
and suffering caused by negative attitudes and discriminatory practices. The fear and prejudice that lie at the
core of the HIV/AIDS discrimination need to be tackled at the community and national levels, with AIDS
education playing a crucial role. A more enabling environment needs to be created to increase the visibility of
people with HIV/AIDS as a 'normal' part of any society. The presence of treatment makes this task easier;
where there is hope, people are less afraid of AIDS; they are more willing to be tested for HIV, to disclose
their status, and to seek care if necessary. In the future, the task is to confront the fear-based messages and
biased social attitudes, in order to reduce the discrimination and stigma of people living with HIV and AIDS:
Equipping stigmatized individuals and groups to challenge stigma and discrimination and to change
behaviour.
Mobilize action to challenge stigma and discrimination at the national and community levels through:
advocacy and awareness campaigns, community involvement in planning for stigma and discrimination
reduction, know your rights campaigns supported by legal assistance and strategic litigation against
discrimination in various settings.
Address fears and misconceptions about HIV transmission by providing detailed information about how
HIV is and is not transmitted using a combination of: behaviour change communication strategies (e.g.
mass media campaigns and “edutainment”), participatory education, and free telephones hotlines/help
lines.
Create awareness of what stigma and discrimination are, the harm they cause, and the benefits of
reducing them, using a combination of: participatory education, which involves activities that encourage
dialogue, interaction and critical thinking; “contact strategies”, which involve direct or indirect interaction
between people living with HIV and key audiences to dispel myths about people affected by HIV; and
mass media campaigns.
Involve government and other officials, media, civil society, institutions (e.g. hospitals, schools,
workplaces), non- governmental organisations, faith-based organisations, organisations of people living
with HIV, the general population.
36
2.12 Nigerian efforts to curtail stigma and discrimination
The National Action Committee on AIDS (NACA) was formed in the national level and each state has formed
a committee working with people living with HIV/AIDS. They provide care and support needed, though not
100%. There is constant information from NACA through mass media (TV and radio) about the need for HIV
counseling and testing and reduction of stigma and discrimination. The Lagos State AIDS Control Agency,
under the leadership of Chief Bola Ahmed Tinubu, enacted a law in 2007 protecting people living with
HIV/AIDS. The Nigeria Institute of Medical Research (NIMR) is committed to providing treatment and ARVs
to PLWH/As.
Different NGOs like STOPAIDS Organization, GHAIN, faith-based organizations, etc. are providing treatment
and preventive care and are also working towards stigma eradication through health education of the
masses.
2.13 Global efforts made towards reduction of discrimination against PLWH/As
Different stake holders have at different times been involved in the fight against the discrimination of
PLWH/As. The common concern is that stigma and discrimination need to be urgently addressed along with
other causes that hinder the implementation of the agreed goals. Several speakers at various workshops
have stressed the need to link the effort to stop the epidemic with the programme to address poverty and
discrimination, defend human rights of PLWH/As and introduce reproductive rights education.
The American Disability Act (ADA) says a PLWH/A has the right and protection from discrimination based on
HIV diseases. The person is also entitled to workplace accommodation that allows them to perform their jobs
efficiently, while protecting the health of the employee.
In the same vein, the US department has agreed to change policies that will prevent PLWH/As from being
barred from working under the department contracts “according to the American Civil Liberties Union, the
advocate com reports”. The action was promoted after the ACLU filed a lawsuit in September 2008 on behalf
a 20 year-old veteran who was denied employment by a federal contractor because of his HIV status. The
suit claimed that John Doe, as he was identified in court documents, was illegally fired for violating the
Rehabilitation Act and the Americans with Disabilities Act (Garcia 8/25).
More so in the U.S. Centres for Disease Control and Prevention: a boy was turned away by denying him
admission to a 2004 summer programme. When the boy and his mum first met with the director of the
basketball academy at Deer Mountain Day Camp, she disclosed her son‟s status, as shown by court
documents. The director said he believed the child‟s HIV status would not interfere with his admission to
participation in the basketball academy. This led to a whole lot of changes such that directors who run
programmes were advised to keep the admission processes open for all prospective candidates, including
PLWH/As, as they can participate equally in almost all activities.
HIV/AIDS and stigma in South Africa, as well as press reports on the same subject over a period of 3 years:
analysis of the material indicates that the stigma drives HIV out of the public sight, so reducing the pressure
37
using behaviour change. Discrimination also introduces a desire not to know one‟s status, thus delaying
testing and accessing treatment. At an individual level, stigma undermines the person‟s identity and capacity
to cope with the diseases.
Fear of discrimination limits the possibility of disclosure even to potential important sources of support such
as family and friends. Stigma impacts on behaviour change as it limits the possibility of using certain safer
sexual practices. Behaviors such as wanting to use condoms could be seen as markers of HIV, leading to
rejection and stigma. All interventions need to address this as the part of their focus. However, the difficulty
of the task should not be underestimated, as has been shown by the persistence of discrimination based on
factors such as race, gender and sexual orientation.
2.14 Stigma, discrimination and human rights: an intimate connection
Discrimination is a violation of human rights. The principle of non-discrimination, based on recognition of the
equality of all people, is enshrined in the Universal Declaration of Human Rights and other human rights
instruments. These texts inter alia, prohibit discrimination based on race, color, sex, language, religion,
political or other opinion, property, birth or other status. Furthermore, the United Nations Commission on
Human Rights has resolved that the term „or other status‟ used in several human rights instruments „should
be interpreted to include health status, including HIV/AIDS‟, and that discrimination on the basis of actual or
presumed HIV-positive status is prohibited by existing human rights standards.
Stigmatization and discriminatory actions therefore, violate the fundamental human right to freedom from
discrimination. In addition to being a violation of human rights in itself, discrimination directed at PLWH/As or
those believed to be HIV infected, leads to the violation of other human rights, such as the right to health,
dignity, privacy, equality before the law, and freedom from inhuman, degrading treatment or punishment.
A social environment which promotes violations of human rights may, in turn, legitimate stigma and
discrimination.
2.15 The rights of PLWH/As
The rights of people living with HIV/AIDS are often violated because of their presumed or known status,
causing them to suffer both the burden of the diseases and the consequences of loss of other rights. Stigma
and discrimination obstruct their access to treatment and may affect their employment, housing and other
rights. This in turn, contributes to the vulnerability of others to infection, since HIV-related stigma and
discrimination discourages individuasl affected from contacting health and social services. The result is that
those most needing information, education and counseling will not benefit even where such services are
available.
Human rights are inextricably linked with the spread and impact of HIV on individual and communities
around the world. Lack of respect for human rights fuels the spread and exacerbates the impact of the
diseases while at the same time HIV/AIDS undermines progress in the realization of human rights. When
individuals and communities are able to realize their rights to education, free association, information and
most importantly non-discrimination, the personal and societal impacts of HIV are reduced. Where an open
38
and supportive environment exists for those infected with HIV, where they are protected from discrimination,
treated with dignity, provided with access to treatment, care, and support, and where AIDS is de-stigmatized,
individuals are more likely to seek testing in order to know their status.
HIV/AIDS-related human rights are defined in existing international treaties. These human rights include:
Right to life
Right to liberty,
Right to security of person
Right to highest attainable mental and physical health
Right to non discrimination
Right to protection and equality before the law
Freedom of movement
Right to seek and enjoy asylum
Right to privacy
Freedom of expression and opinion
Right to freely receive and impart information
Freedom of association, to marry and found a family
Right to work
Right to equal access to education
Adequate standard of living, social and security
Assistance and welfare
Right to share scientific advancement and its benefits
Right to participate in public and cultural life, free from torture and other cruel inhuman or degrading
treatment or punishment.
Figure 1: The cycle of stigma, discrimination and human rights violations
Which legitimates Which causes
Which leads to
(Joint United Nations Programme on HIV/AIDS)
Stigma
Violation of
human rights Discrimination
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2.16 CONCLUSION
From the literature review, it is very obvious that discrimination and stigma is a public issue that has social
consequences. The developed countries have been able to control it to an extent because of the human
rights laws they enacted. One is tempted to ask, “When will developing countries like Nigeria wake up to
these realities?” I still believe that the literacy level of our people due to lack of knowledge is playing a
negative role in our change of attitude. Even the PLWH/As cannot access human rights to protect them and
safeguard their family. The majority are not even aware of its existence. While we wait for God‟s intervention,
this study also seeks other ways to explore other possibilities for an effective service.
CHAPTER THREE
3.0 RESEARCH METHODOLOGY
3.1 Study Area
Amukoko is one of the rural and slum areas in Lagos State. It is located between Orile and Ajegunle in
Ajeromi/Ifelodun LGA of Lagos State. It is surrounded by canals, making the environment almost inhabitable.
Life starts from Amukoko, as they say, because it is almost easy to get accommodation at low cost
compared to other parts of Lagos. The buildings are mostly “face me I face you type” (a type of house in
which the rooms are opposite each other and you can find nothing less than five in a room). Amukoko and
places like it are usually the first places of securing accommodation for people coming to Lagos for the first
time because of lack of accommodation as a result of the influx. Overcrowding is the order of the day so TB,
HIV and other infectious diseases are prevalent due to overcrowding and sex experimentation/exploitation
among the youth. Administratively, it has Baale and his council. Amukoko is made up of 32 streets
recognized by the Local Government namely:
Rasaki, Alayaki, Emilius, Titilayo, Ikogwe, Aro lane, Baba Sala, Atolagbe, Muri Ojora, Market, Ajelara,
Cemetery, Olupo, Omoniyi Omowumi, Maiyegun Oro, Adeoye, Oshogbo, Emmanuel Kayode, Igbesa, Epe,
Ifelodun, Mission, Adeboye, Imam, Irepodun, Aro Lane, Owodumi, Alafia, Fagbemi, Lemonu, Iludun, and
Abidoye.
It has an estimated population of 900,000 as at the 2006 census. It is one of the most populous communities
in Lagos and is popularly called “Small London”.
There are many health facilities in Amukoko but many of them offer poor quality health care services. There
are schools ranging from nursery to secondary/vocational centers.
Amukoko community is made up of the 3 major tribes of the country: Igbo, Yoruba and Hausa and many
other minority tribes.
They are business oriented people in their own little way. The majority of them are self employed while the
rest are either civil servants or office workers.
40
Amukoko roads are not motorable. There is a poor road network as you can hardly find a good tarred road in
the community, making movements especially during the rainy season difficult. The commonly found
vehicles are the tricycle (keke) and okada. They are best suited for Amukoko roads.
Poverty among community members is life and direct. Mere observation of the environment and housing
conditions will tell you the kind of people that inhabits the area. However people move out to a better
environment whenever they achieve.
The area is dominated by Christians, followed by Muslims. You can find very few who are neither or belong
to both
41
42
3.3 Study Design
The research is a descriptive study designed to study stigma and discrimination, attitudes and practices
among PLWH/As in Amukoko community.
3.4 Study Population
An average of 150 clients will be selected randomly from the total of 400 clients who attend a support group
in St Theresa‟s Clinic (Community Health Project) every month.
Again a total of 100 households was randomly selected from the 10 streets out of 32 streets of Amukoko
community.
3.5 Sampling Technique
The sampling method that will be used is a simple random sampling technique.
3.6 Sample size determination
When sample size is < 10,000
nf = n/1+n/N (where nf = estimated study population, N =whole population, n=sample size)
nf = 250/1+250/400
= 250/1.625 nf = 153.8
However for the purpose of this study a total sample size of 250 will be used to make up for stigma and
discrimination among PLWH/As and by the community members.
3.7 Data collection Tool
Primary sources of data are obtained from the target population with the aid of a semi-structured self
administered questionnaire (see appendix) divided into four parts.
Section A: contains the socio-demographic parameters
Section B: contains questions to assess knowledge
Section C: contains questions to assess attitudes while
Section D: contains questions to assess practices.
The same pattern above was used for the community questionnaires.
3.8 Data collection Procedure
Data were collected a few hours after distribution due to time factors and to ensure return of all
questionnaires.
3.9 Data Analysis
Data were statistically analyzed with frequencies, simple percentages, tables and bar charts.
3.10 Ethical Consideration
Participation is strictly voluntary after an informed consent from the respondent. There was an assurance of
confidentiality on information given.
CHAPTER FOUR
4.0 DATA PRESENTATION AND ANALYSIS
4.1 COMMUNITY QUESTIONNAIRE
43
Table 1: Age Range of Respondents
Age in Years Frequency Percentage (%)
18 – 35 53 53.5
36 – 45 34 34.3
46 & above 12 12.2
Total 99 100
Table 1 shows that the majority of the community respondents (53.5%) are between 18 – 35 years.
Table 2: Sex Distribution
Sex Frequency Percentage (%)
Male 41 41.4
Female 58 58.6
Total 99 100
Table 2 shows that the majority of the community respondents are females (58.6%).
Table 3: Marital Status
Marital Status Frequency Percentage (%)
Single 44 44.4
Married 40 40.4
Widowed 12 12.1
Divorced 3 3.0
Total 99 100
Table 3 shows that the majority of the community respondents (44.4%) are single.
Table 4: Level of Education
Education Frequency Percentage (%)
Primary 1 1.0
Secondary 57 57.6
Tertiary 32 32.3
Others 9 9.1
Total 99 100
Table 4 shows that most of the community respondents (57.6%) have attended secondary school.
Table 5: Occupation of the Respondents
Occupation Frequency Percentage (%)
Unemployed 32 32.3
Civil servant/other type of employment 27 27.3
Business 34 34.3
Apprentice 6 6.1
Total 99 100
Table 5 shows that most of the community respondents (34.3%) are business people.
Table 6: Religion of Respondents
Religion Frequency Percentage (%)
Christian 75 75.8
Islam 21 21.2
44
Others 3 3.0
Total 99 100
Table 6 shows that most of the community respondents (75.8%) are Christians.
Table 7: Ethnic Group
Ethnic Group Frequency Percentage (%)
Yoruba 32 32.3
Hausa 15 15.2
Igbo 42 42.4
Others 10 10.1
Total 99 100
Table 7 shows that most of the community respondents (42.4%) are Igbo people.
Table 8: HIV is the same thing as AIDS
Response Frequency Percentage (%)
Yes 22 22.2
No 69 69.7
No response 8 8.1
Total 99 100
Table 8 shows that most of the community respondents (69.7%) affirm that HIV is not the same thing as AIDS.
Table 9: Have you seen any HIV positive person?
Response Frequency Percentage (%)
Yes 48 48.5
No 44 44.4
No response 7 7.1
Total 99 100
Table 9 shows that most of the community respondents (48.5%) have seen HIV positive persons.
Table 10: Person with HIV can‟t be in the same house with me
Response Frequency Percentage (%)
Yes 30 30.3
No 69 69.7
Total 99 100
Table 10 shows that most of the community respondents (69.7%)feel that people with HIV can be in the same house with them.
Table 11: I can eat, sleep, and live with any HIV positive person
Response Frequency Percentage (%)
Yes 68 68.7
No 31 31.3
Total 99 100
Table 11 shows that most of the community respondents (68.7%) can eat, sleep, live with any HIV positive person.
Table 12: A HIV positive child cannot play with my child
45
Response Frequency Percentage (%)
Yes 49 49.5
No 50 50.5
Total 99 100
Table 12 shows that only about half (50.5%) of the community respondents can allow a HIV positive child to play with their own children.
Table 13: I will discontinue my marriage if my partner is positive
Response Frequency Percentage (%)
Yes 49 49.5
No 50 50.5
Total 99 100
Table 13 shows that only about half (50.5%) of the community respondents can continue their marriage if their partner is HIV positive.
Table 14: HIV positive people cannot be tenants in my house
Response Frequency Percentage (%)
Yes 39 39.4
No 60 60.6
Total 99 100
Table 14 shows that most of the community respondents (60.6%) can allow HIV positive people to be tenants in their houses.
Table 15: It is better for them to have a separate community like the leprosarium
Response Frequency Percentage (%)
Yes 25 25.3
No 74 74.7
Total 99 100
Table 15 shows that most of the community respondents (74.7%) disagree that HIV positive people should have a separate community.
Table 16: I will like to know any of my family members who test positive
Response Frequency Percentage (%)
Yes 86 86.9
No 13 13.1
Total 99 100
Table 16 shows that most of the community respondents (86.9%) would like to know their family members who test positive.
Table 17: I will kill myself if I test positive
Response Frequency Percentage (%)
Yes 18 18.2
No 81 81.8
Total 99 100
Table 17 shows that most of the community respondents (81.8%) attested that they won‟t kill themselves if they test positive.
46
0
10
20
30
40
50
60
primary secondary tertiary none
community
PLWHA
Figure 2: Bar Chart Representation of Educational Level of Respondents
4.2 PLWH/A QUESTIONNAIRE TABLES
Table 18: Age Range of Respondents
Age in years Frequency Percentage (%)
18 – 35 76 51.0
36 – 45 41 27.5
46 & above 32 21.5
Total 149 100
Table 18 shows that the majority of the PLWH/A respondents (51.0%) are between 18 – 35 years.
Table 19: Sex Distribution
Sex Frequency Percentage (%)
Male 56 37.6
Female 93 62.4
Total 149 100
Table 19 shows that the majority of the PLWH/A respondents (62.4%) are females.
Table 20: Marital Status
Marital Status Frequency Percentage (%)
Married 78 52.3
Single 43 28.9
Divorced 10 6.7
Widowed 18 12.1
Total 149 100
Table 20 shows that the majority of the PLWH/A respondents (52.3%) are married.
47
Table 21: Level of Education
Education Frequency Percentage (%)
Primary 31 20.8
Secondary 74 49.7
Tertiary 29 19.4
None 15 10.1
Total 149 100
Table 21 shows that most of the PLWH/A respondents (49.7%) attained secondary education.
Table 22: Occupation of Respondents
Occupation Frequency Percentage (%)
Unemployed 45 30.2
Civil servant/other type of employment 35 23.5
Business 68 45.6
Apprentice 1 0.7
Total 149 100
Table 22 shows that most of the PLWH/A respondents (45.6%) are business people.
Table 23: Religion
Religion Frequency Percentage (%)
Christianity 69 46.3
Islam 48 32.2
Others 32 21.5
Total 149 100
Table 23 shows that most of the PLWH/A respondents (46.3%) are Christians.
Table 24: Ethnic Group
Ethnic Group Frequency Percentage (%)
Yoruba 62 41.6
Igbo 34 22.8
Others 53 35.6
Total 149 100
Table 24 shows that most of the PLWH/A respondents (41.6%) are Yoruba people.
Table 25: Knowledge of HIV meaning
HIV Frequency Percentage (%)
Human Immune Deficiency Virus 41 27.5
Human Immuno Deficiency Virus 86 57.7
Human Infectious Virus 15 10.1
No idea 4 2.7
No response 3 2
Total 149 100
Table 25 shows that most of the PLWH/A respondents (57.7%) understand HIV to mean Human Immuno Deficiency Virus.
Table 26: Knowledge of AIDS meaning
AIDS Frequency Percentage (%)
48
Active Infections Disease Status 6 4
Acquired Immune Deficiency Syndrome 116 77.9
Acquired Infectious Deadly Symptoms 8 5.4
Acquired Infectious Diseases Syndrome 6 4
No response 13 8.7
Total 149 100
Table 26 shows that most of the PLWH/A respondents (77.9%) understand AIDS to mean Acquired Immune Deficiency Syndrome.
Table 27: Is HIV the same as AIDS
Response Frequency Percentage (%)
Yes 29 19.5
No 104 69.8
Don‟t know 4 2.7
No response 12 8
Total 149 100
Table 27 shows that most of the PLWH/A respondents (69.8%) agree that HIV is not the same as AIDS.
Table 28: Percentage of Nigerians Living with HIV/AIDS
Answer Frequency Percentage (%)
1 – 3 17 11.4
4 – 8 28 18.8
10.6 26 17.4
20 18 12.1
21 & above 38 25.5
No response 22 14.8
Total 149 100
Table 28 shows that majority of the PLWH/A respondents (25.5%) think that the percentage of Nigerians live with HIV/AIDS is 21% and above.
Table 29: Experience on Discrimination
Response Frequency Percentage (%)
Yes 81 54.3
No 46 30.9
No response 22 14.8
Total 149 100
Table 29 shows that most of the PLWH/A respondents (54.3%) have experienced discrimination due to their status.
Table 30: Place of Discrimination
Place Frequency Percentage (%)
Work 18 20
Family 45 50
Market 5 5.6
Hospital 8 8.9
Government 0 0
Others 14 15.5
Total 90 100
Table 30 shows that half of the PLWH/A respondents (50%) experienced discrimination in the family.
49
Table 31: Family Nature of Discrimination
Nature Frequency Percentage (%)
Isolation 5 11.1
Spoon & plate separate 13 28.9
Avoid close contact 10 22.2
Ridicule 17 37.8
Total 45 100
Table 31 shows that most of the PLWH/A respondents (37.8%) that experienced discrimination in the family were ridiculed.
Table 32: Experience of Stigmatization
Response Frequency Percentage (%)
Yes 73 49
No 52 34.9
No response 24 16.1
Total 149 100
Table 32 shows that most of the PLWH/A respondents (49%) have experienced stigmatization.
Table 33: Nature of Stigmatization
Nature Frequency Percentage (%)
Rejection by community & social circle 33 50
Quit notice by landlord 5 7.6
Subject to violent assault 28 42.4
Total 66 100
Table 33 shows that half of the PLWH/A respondents (50%) experienced stigmatization by rejection in the social circle and community.
Table 34: Disclosure of Status
Response Frequency Percentage (%)
Yes 50 33.5
No 63 42.3
No response 36 24.2
Total 149 100
Table 34 shows that most of the PLWH/A respondents (42.3%) have not disclosed their status.
Table 35: Mode of Infection
Mode Frequency Percentage (%)
Spouse 28 18.8
Blood transfusion 36 24.2
Friend 18 12.1
Hospital 7 4.7
No response 60 40.2
Total 149 100
Table 35 shows that most of the PLWH/A respondents (24.2%) were infected via blood transfusion.
Table 36: Social Consequence of HIV Status
Social Consequence Frequency Percentage (%)
50
Loss of spouse 16 10.7
Loss of psychological support 31 20.8
Not yet 62 41.6
No response 40 26.9
Total 149 100
Table 36 shows that most of the PLWH/A respondents have not yet experienced any social consequences of their status.
CHAPTER FIVE
5.1 DISCUSSION OF FINDINGS
The findings of the research work are presented in this chapter about the issues of discrimination among
people living with HIV/AIDS (PLWH/As). The results of the questionnaires besides the demographic data
shall be discussed separately, i.e. community administered questionnaires and those of the PLWH/As.
General demographic data: Most of the respondents were aged between 18 – 35 years: 53.5% for the
community and 51.0% for PLWH/As. Most of the respondents were females: 58.6% for community and
62.4% for PLWH/As. For the community, most of the respondents (44.4%) are single while over half of the
PLWH/A respondents (52.3%) are married. Most of the respondents have at least secondary education:
57.6% for community and 49.7% for PLWH/As. Their main occupation is business: 34.3% for community and
45.6% for PLWH/As, and they are mostly Christians: 75.8% for community and 46.3% for PLWH/As. Most of
the community respondents are Igbo (43.4%) while most of the PLWH/A respondents (41.6%) are Yoruba.
Section A: Community views about stigma and discrimination
Knowledge issues: A majority of the respondents disagreed that HIV is the same thing as AIDS: 69.7% and
69.8%. Most of them have seen HIV positive persons (48.5%).
Findings about attitudes: As regards attitudes of the community respondents, most of them (48.5%) have
seen HIV positive persons, and agree (69.7%) that HIV positive persons can be in the same house with
them; most (68.7%) can eat, sleep and live with any HIV positive person, and most of them (50.5%) can
allow a HIV positive child to play with their children. 50 of the 99 respondents can continue their marriages if
their partner is HIV positive, and the majority (60.6%) can allow HIV positive people to be tenants in their
houses. When asked whether HIV positive people should be isolated like in a leprosarium, the majority
(74.7%) disagreed but 25 of them (25.3%) agreed. Most of them (86.9%) will like to know if any of their
family members tests positive, and the majority attested (81%) that they won‟t kill themselves if they test
positive, though 18 of them (18.2%) attested to kill themselves if they test positive.
Discriminatory practices: Looking at the above response analysis of the community, it shows that the
majority of them would not discriminate against HIV/AIDS people. They can live in the same house with
them, eat, sleep, allow them to be their tenants, and also allow their children to play with PLAs‟ children, thus
showing that the very act of the discrimination is only perpetrated by a few of the community members. Yet
the majority of the PLWH/As claim that their major stigma and discrimination is in the family (50%), ranging
from ridicule (37.8%), separation of dishes and cutlery (28.9%), contact avoidance (22.2%) to isolation
(11.1%). This is to say that there are discrepancies between responses and the experiences of PLWH/As.
51
Section B: The PLWH/As’ view on stigma and discrimination
Knowledge issues: The majority of the respondents disagreed that HIV is the same thing as AIDS (69.8%).
Most of the PLWH/A respondents (77.9%) understand AIDS to mean acquired immune deficiency syndrome;
25.5% of them also believe that 21% and above of Nigerians are living with HIV/AIDS today.
Findings about attitudes: The experience on issues of discrimination among the PLWH/As is that most of
the respondents (54.3%) have had experiences of discrimination from different aspects (work, family,
hospital, market, etc.) but it is more pronounced in the family (50%), ranging from ridicule (37.8%),
separation of dishes and cutlery (28.9%), contact avoidance (22.2%), to isolation (11.1%). People were
discriminated against in the hospital (8.9%), which shows that almost immediately after testing positive,
health workers have started discriminating against them. This agrees with the work of Sadob et al. (2006),
where 13.9% of trained nurses and 12.7% of auxiliary nurses were unwilling to take vital signs and carry out
physical examinations on PLWH/As. Other studies among nurses (Reis et al., 2005; Adelekan et al., 1995),
physicians and laboratory scientists in Nigeria show that these groups of caregivers still lack knowledge
about the disease, thus enhancing their negative attitudes and oftentimes, refusal to treat and care for
PLWH/A.
On experience on stigmatization, the majority (49%) have experienced stigmatization of several natures,
ranging from rejection in the community and social circles (50%) to being subjected to violent assault
(42.4%) and eviction notices from landlords (7.6%). Asked if they have disclosed their status, the majority
(42.3%) have not because of fear, ridicule, loss of spouse, etc. and those who have disclosed (33.5%) have
only disclosed to mostly family members, relatives and a few friends. As regards mode of infection, the
majority (24.2%) attributed it to blood transfusion; other modes given were from spouse, friends, hospital,
salon, etc. When asked if they have experienced other social consequences, most of them (41.6%) have not
yet experienced any; this could be because they might not have disclosed their status.
As regards educational status: of the total respondents (community and PLWH/A), most attained secondary
education. AIDS educational intervention studies aimed at secondary school students (Fawole et al., 1999)
showed that 97% of the intervention groups were willing to touch and care for PLWH/As, compared to 14%
of the control group, indicating that a long term, continuous and population-based AIDS education
programme can significantly increase knowledge and thus reduce stigma and discrimination.
5.2 CONCLUSION
Overall perception from the community: It can be seen that most of the respondents have a positive attitude
to PLWH/As, like they can eat, sleep and live with them; they can allow them to be tenants in their houses;
they don‟t want to isolate them like lepers and can‟t kill themselves if they test positive - though only about
half of them can allow a HIV positive child to play with their children, and only about half can continue their
marriage if their partners become positive. This still shows generally that people stigmatize and discriminate
against PLWH/As. The implication of this finding is that communities will experience a high rate of separation
52
when there is increasing incidence of HIV infection. This separation scenario will in turn result in more new
infections because people will engage in new sexual relationships. The researcher is therefore not surprised
that despite all interventions in place there is evidence of an increasing rate of new infections in Amukoko.
Also, according to the PLWH/As, we can see that discrimination and stigmatization is high. Most of them
even find it hard to answer many of the questions („No‟ responses) and for the few who have not
experienced discrimination and stigmatization, it may be because they never disclosed their HIV positive
status. It is interesting to note the fact that the major place of discrimination is within the family setting - a
group that the PLWH/As trust enough to disclose their status to because it is whoever knows you are HIV
positive that can discriminate against or stigmatize you. That is why most of those who have not disclosed
their status gave reasons such as distrust, fear of rejection and isolation, shame, avoiding stigma, and loss
of spouse and protection.
Many of those stigmatized were rejected by their social circle and community, and most attributed their mode
of infection to blood transfusion. Loss of spouse and loss of psychological support were social consequences
of positive status but the majority have not yet experienced any.
In conclusion, the PLWH/As are still being stigmatized and discriminated against by the community, society
and family members in particular. This attitude is responsible for the behaviour of non disclosure of HIV
status of PLWH/As. Consequently this poses a problem for data collection, disease prevention as well as the
capacity of PLWH/As to seek care and treatment in the hospital and community.
The majority of the PLWH/A respondents were not able to answer most of the questions besides their bio-
data. This depicts a low level of knowledge about HIV/AIDS, a condition which is confronting them. The
researcher had expected that PLWH/As would have more information about the condition than an average
person and even become a protagonist, educating people about prevention, care and treatment issues.
The researcher wants to affirm the fact that knowledge of the process of HIV/AIDS is a significant tool in
stigma reduction and prevention intervention strategies.
5.3 RECOMMENDATIONS
The following recommendations are suggested based on the findings of this research:
Empowerment of the stigmatized group, like the PLWH/As, as well as their involvement in the design and
implementation of prevention programmes in the country.
The focus of health education for behavior change communication strategies should be the family
members and health care providers, who were the major groups discriminating against PLWH/As.
Health education campaigns should integrate a change from fear to caring for PLWH/As.
The prevention activities should be sustained more in rural and remote urban slums like the Amukoko
area of Lagos State, Nigeria, since 65% of the population resides in such areas.
It is absolutely important that culturally sensitive stigma reduction programmes and interventions should
be designed for the various multi-ethnic communities in Nigeria.
53
Media should be used to produce de-stigmatization programmes in schools, hospitals, religious centres
and the general populace.
AIDS education should be introduced and integrated into the teaching curriculum from primary education
to provide appropriate early correct information about HIV/AIDS.
More research should be done to identify the cultural epidemiology of HIV/AIDS stigma in the various
ethnic populations.
Provide leadership on the necessity of reducing stigma and discrimination.
Facilitate the inclusion of stigma/discrimination reduction in national HIV strategic planning, funding and
programming activities. Ensure that planning, funding and programming efforts include attention to stigma
and discrimination and support the implementation of promising programmes to address stigma and
discrimination.
Use or promote approaches that address the root causes of stigma and discrimination. Implement
programmes that tackle the actionable causes of stigma, i.e. lack of awareness of stigma and
discrimination and their negative consequences, fear of acquiring HIV through casual contact, and linking
HIV with behaviour that is considered immoral.
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determinations. Research studies from Uganda and India UNAIDS, Geneva.
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Critical Public Health 8(4): 347-370.
3. Aggleton P. Parker R. and Mauwa M. (2002) stigma, discrimination and HIV/AIDS in Latin
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HIV/Hepatitis/STD/TB Prevention News Update.
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7. ADEBAJO,S.B,AO.BAMGBALA and M.A. OYEDIRAN. 2003. Attitudes of health care providers
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elaboration of stigma trajectory. Social Science and medicine, 41(3),pp 303-315.
9. ALUBO, O, A. ZWANDOR, T. JOLAYEMI and E. OMUDU.2002 Acceptance and stigmatization
of PLWH/A in Nigeria. AIDS Care, 14 pp. 117-126.
10. BELEKE, A. and A. ALI.2008. Effectiveness of IEC interventions in reducing HIV and AIDS-
related stigma among high school adolescents in Hawassa, southern Ethiopia. Ethiopian Journal of
Health Development, 22 pp. 232-242.
11. CENTER FOR THE RIGHT TO HEALTH .2003. HIV & AIDS and human rights in Nigeria:
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September 2003,Washington D.C. USAID.
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(2005-2009). Abuja: Society for Family Life
13. WORLD HEALTH ORGANIZATION. 2002. Community home-based Care in resource-limited
settings: A framework for action. Geneva: WHO.
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developing countries. New York: Oxford.
15. EZEOKANA, J.O.,O.A.U. NNEDUM, and S.N. MADU. 2008. Pervasiveness of HIV-related
stigma among PLWHA in South Eastern Nigeria. Pakistan Journal of Social Science 5,pp.448-456.
16. FEDERAL MINISTRY OF HEALTH NIGERIA. 2007. National guideline for HIV and AIDS
treatment and care in adolescents and adults. Abuja: FMOH Nigeria.
55
17. FEDERALMINSTRY OF HEALTH NIGERIA.2009b. Update on key health sector response to
HIV and AIDS at National level: Annual review meeting of all states AIDS programme
coordinators.31st April to 1st May 2009. Abuja. FMOH Nigeria.
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19. FORSYTH.2009. HIV & AIDS Stigma in South Africa community. AIDS Care 2, pp. 197-206
20. GOFFMAN, E. 1963. Stigma: Notes on the management of spoiled identity. New Jersey:
Prentice-Hall
21. OFFICE OF THE UNITED NATIONS HIGH COMMISSIONER FOR HUMAN RIGHTS and
JOINT UNITED NATIONS PROGRAMME ON HIV &AIDS. 2007. Handbook on HIV and Human
Rights for National Human Rights Institutions. Geneva: OHCHR and UNAIDS.
22. THE LIVING BIBLE. Mark 2:13-17, Mark 3:1-6, Matt 23:37-40.
23. FEDERAL MINISTRY OF HEALTH NIGERIA. 2004. National HIV Seroprevalence
24. Sentinel survey 2003. Abuja: FMOH Nigeria.
25. Adelekan, M. L., Jolayemi, S. O., Ndom, R. J., Adegboye, J., Babatunde, S., Tunde-Ayimode,
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Education Program for Secondary School Students in Nigeria: A Review of Effectiveness. Health
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Lacopino, V. (2005). Discriminatory Attitudes and Practices by Health Workers towards Patients of
HIV / AIDS in Nigeria. PLoS Med. 2 (8): e246.
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28. Sadoh, A. E., Fawole, A. O., Sadoh, W. E., Oladimeji, A. O. and Sotiloye, O. S. (2006). Attitudes
of Healthcare Workers to HIV / AIDS. Afr. J. Reproductive. Health 10 (1): 39 – 46.
Appendices:
QUESTIONNAIRE
Dear Respondent,
I am a student of the above named institution undergoing a research on issues of discrimination among
people living with HIV/AIDS (PLWH/A) in Amukoko area of Ajeromi/Ifelodun LGA of Lagos State.
The following questionnaires are designed for the academic exercise only; all information will be treated
confidentially. Therefore your maximum cooperation is highly appreciated by ticking the answer that you
think is correct.
THANK YOU
SECTION A: Demographic data
Instructions:
Tick in appropriate box provided
1) SEX: male female
2) AGE Group 18 – 35
36 – 45
46 – above
3) Marital Status: Married Single Widowed Divorced
4)Occupation: Unemployed
Civil Servant/other type of employment
Business, Petty trading, artisan
Apprentice
5) Religion: Christianity Islam others
6) Educational Status: None Primary School Secondary Tertiary
7) Ethnic group: Igbo Hausa Yoruba Esan Efik Benin
Ibibio Ibira Nupe
57
SECTION B: Knowledge
8a) what does HIV stands for?
Human immune Deficiency Virus
Human immuno-deficiency Virus
Human Infectious Virus
No idea
8b) What does AIDS stands for?
Active Infections Disease status
Acquired Immune Deficiency Syndrome
Acquired infectious deadly symptoms
Acquired infectious diseases syndrome
9) Is HIV same thing as AIDS yes No Don‟t know
10) Approximately what % of the Nigerian population live with HIV/AIDS 1-3% 4-8%
10.6% 20% 21% and above
11) Will you know somebody that is positive by looking at him or her yes No Don‟t know
12) Can a healthy looking person transmit HIV? Yes No don‟t know
13) HIV can be found in:
YES NO DON‟T KNOW
SPERM
URINE
SALIVA
VAGINAL FLUID
BLOOD
BREAST MILK
14) Does the use of condom during intercourse protect against HIV/AIDS. Yes No
Don‟t know
15) HIV can be transmitted through sexual intercourse yes [ ] No [ ]
16) It can be prevented by keeping to my spouse yes [ ] No [ ]
17) Taking ARV drugs will help to make HIV positive person live longer yes [ ] No [ ]
18 HIV can be cure using alternate medicine. Yes [ ] No [ ]
19) HIV can be transmitted through
Yes No Don‟t know
A kiss on the mouth
Shaking of hand
Using the same tooth brush
A mosquito bite
Toilet seat
Vaginal sex
58
Oral sex
Anal sex
Receiving untested blood
SECTION C: Attitude – Answer the following with honesty by ticking the one you feel is the answer.
20) Have you ever been discriminated against because of the HIV Status yes [ ] No [ ]
21) If yes, where: Workplace [ ] family members [ ] market [ ] hospital [ ] Government [ ] other places [ ]
22) At workplace: Retrenched [ ] Redeployed [ ] Isolated [ ] Verbal Ridicule or Abuse [ ]
23) By Family members: Isolated [ ] Spoon and Plates separated [ ] Close contact avoided [ ] Ridicule or
Abuse [ ]
24) By Government: Sacked [ ] Transferred [ ] Isolated [ ]
HIV –related stigma is define as all unfavourable attitudes, belief and practices/policies directed
toward people perceived to have HIV/AIDS as well as towards their significant others and loved ones.
25) Have ever experienced stigmatization Yes [ ] No [ ]
26) If Yes, Rejected by social circle and community [ ] Receive Quit notice by Land Lord [ ] Subjected to
Violent Assault [ ]
27) Have you disclosed your HIV/AIDS status publicly. Yes [ ] No [ ]
28) If Yes, TO WHOM ………………………….
29) If No, WHY..............................
30) How were you infected? Husband [ ] wife [ ] blood transfusion [ ] Friend [ ] hospital [ ]
31) Have you ever experienced other social consequences like loss of husband/wife?
[ ] loss of psychological support [ ] Not yet [ ]
32) Do you have support from Non Governmental Organization? Yes [ ] No [ ]
33) HIV positive people should be allowed to continue working. Yes [ ] No [ ]
34) People should use condom if they don‟t know partners HIV status yes [ ] No [ ]
35) A HIV positive staff should be treated like any other staff. Yes [ ] No [ ]
36) A child who is Positive should be in the same school with others who are negative. Yes [ ] No [ ]
37) My sin made me to be HIV positive. Yes [ ] No [ ]
38) If your partner makes you positive, will you like to infect others? Yes [ ] No
39) There is no hope for someone who is HIV positive. Yes [ ] No [ ]
SECTION D: PRACTICE
40) It is good for families to discuss issues of HIV/AIDS yes [ ] No [ ]
41) Our HIV status does not matter in life. Yes [ ] No [ ]
42) Testing positive in life is due to ancestral course yes [ ] No [ ]
43) It is a taboo for someone to test positive. Yes [ ] No [ ]
44) PLWHA does not enjoy any known human right. Yes [ ] No [ ]
45) PLWHA deserves to live yes [ ] No [ ]
59
46) People who are positive should be paid by government yes [ ] No [ ]
47) There is legislation protecting PLWHA in Nigeria yes [ ] No [ ]
48) Everybody should know about such legislation yes [ ] No [ ]
49) As HIV positive I can do any job like every other person. Yes [ ] No [ ]
50) I don‟t care what people say about my status, I live my life positively. Yes [ ] No [ ]
51) Adequate diet will help to build my immunity and prevent other opportunistic infections yes[ ] No[ ]
COMMUNITY QUESTIONAIRE
SECTION A: DEMOGRAPHIC DATA
Instructions: tick in appropriate box provided
1) Name of street:
2) SEX; male [ ] female [ ]
3) AGE GROUP: 18 – 35 [ ] 36-45 [ ] 46 and above [ ]
4) Marital status: married [ ] single [ ] widowed [ ] divorced [ ]
5) Occupation : unemployed [ ] Civil servant/other type of employment [ ] Business, petty trading, artisan [ ]
Apprentice [ ]
6) Religion: Christianity [ ] Islam [ ] others [ ]
7) Educational status: None [ ] primary school [ ] secondary school [ ] Tertiary [ ]
8) Ethnic group: Igbo [ ] Hausa [ ] Yoruba [ ] Esan [ ] Efik [ ] Benin [ ] Ibibio [ ] Ibira [ ] Nupe [ ]
SECTION B: KNOWLEDGE
9) Is HIV same thing as AIDS yes [ ] No [ ] Don‟t know [ ]
10) Approximately what % of the Nigerian population live with HIV/AIDS? 1-3% [ ] 4-8% [ ]
10.6% [ ] 20% [ ] 21% and above[ ]
11) Will you know somebody that is positive by looking at him or her yes [ ] No [ ] Don‟t know [ ]
12) Can a healthy looking person transmit HIV? Yes [ ] No [ ] Don‟t know [ ]
SECTION C: ATTITUDES
13) A person with HIV should not be in the same house with me. Yes [ ] No [ ]
14) I can eat/sleep/live with anybody that is HIV positive. Yes [ ] No [ ]
15) A HIV positive child cannot play with my child. Yes [ ] no [ ]
16) I will discontinue my marriage if my partner is HIV positive. Yes [ ] No [ ]
17) HIV positive people cannot by my tenants. Yes [ ] No [ ]
18) it is better for them to have a separate community like the leprosarium. Yes [ ] No [ ]
19) I will like to know any of my family member who test positive Yes [ ] No [ ]
20) I will kill myself if I test positive. Yes [ ] No [ ]
SECTION D: PRACTICE
60
21) Why do people stigmatize and discriminate HIV positive people?
Yes No Don‟t know
Because they are dangerous people.
You can infect yourself by body contact
They carry bad luck
They can easily die
22) What in your opinion could be done to reduce stigma and discrimination?
Yes No Don‟t know
Show them love
Give them job
Identify with them in every thing.
Create awareness