An analysis of
the policies, pronouncements and programmes on
HIV-related
stigma and discrimination in Nigeria
By
M. O Ukpong
For
Journalists Against AIDS (JAAIDS) Nigeria
November 2003
Acknowledgement
The author is
immensely grateful to all who have contributes in no small measure
to the success of this project. This includes all those who were
interviewed, all those who provided resource materials and all those
who helped me make valuable contacts for this project. Most
importantly, I would like to thank all persons living with HIV and
AIDS who agreed to be interviewed and have their voices erred in
this project. I would also like to thank Yanana Mshelia who provided
with me with so many reference materials with which I was able to
grasps the basic understanding of stigma in all its contexts and
forms. I acknowledge the wonderful suggestions of Matt Greenall
which improved the quality of this project as well as the
opportunity, time and efforts of Mr Omololu Falobi in editing and
giving directions for the writings. Finally, I thank Mr OA Orifowomo
who made me understand all the legal jagon and the writings of the
Nigerian judiciary.
An analysis of the
policies, pronouncements and programmes on HIV-related stigma and
discrimination in Nigeria
Introduction
More than two decades into the
HIV/AIDS epidemic, stigma and discrimination against people who have
HIV/AIDS (PLWH) or are affected by HIV continue unabated. Although
the global pandemic has shown itself capable of triggering responses
of compassion, solidarity and support, bringing out the best in
people, their families and communities yet stigma and ostracism,
repression and discrimination continue to be reported in both the
rich developed and poor developing countries of the world. Herek et
al reported that AIDS remain a highly stigmatized condition in the
United States though the form of expression has changed over the
years. Similarly, reports in the literature from Thailand, India,
Uganda and Zimbabwe discuss HIV-related stigma in various context
and forms in these countries.
The international community had long
recognized the limiting effect of HIV-related stigma and
discrimination on the control of HIV/AIDS. It is known to undermine
the ability of individuals, families and societies to protect
themselves and provide support and reassurance to those affected,.
To this effect, various declarations and resolutions had been made
at regional and international for a recognizing the delectating
effect of stigma on mitigation efforts of HIV prevention and control
programmes. The making of these various declarations of commitments
had spanned over 15 years with the recent ones including the
resolution 49/1999 of the UN Commission o Human Rights which
affirmed that
“Discrimination on the basis of HIV or AIDS
status, actual or presumed, is prohibited by existing international
human rights standards and that the term ‘or other status’ in
non-discrimination provision in international human right text
should be interpreted to cover health status, including HIV and
AIDS”.
In recent years, the paragraph in the
Abuja declaration on HIV/AIDS, tuberculosis and other related
infectious diseases made in April 2001 states in point 12 that
“We are aware that stigma, silence,
denial and discrimination against people living with HIV/AIDS
increase the impact of the epidemic and constitute a major barrier
to an effective response to it. “
Also, the Declaration of Commitment
on HIV and AIDS made during the UN special session on HIV and AIDS
on the 27th of June 2001 noted in paragraph 13 that
“Stigma, silence, discrimination and denial as
well as lack of confidentiality undermine prevention, care and
treatment efforts and increase the impact of the epidemic on
individuals, families, communities and nations and (this) must be
addressed”.
The session finally went on to make
resolutions (paragraphs 58-61) which should help in the realisation
of human rights and fundamental freedom for all so as to reduce
vulnerability to HIV infection in view of stigma and discrimination
associated to the infection.
Despite all these declarations of commitments
and call for action made over the decade, the full understanding of
what drives the epidemic of stigma remains an enigma. Fundamental
questions still remain about its causes and persistence despite
increasing awareness and knowledge about HIV and how to effectively
confront it.
This report describes a study, which
tries to unravel some of the issues surrounding stigma in Nigeria.
It had tries to investigate the forms HIV–related stigma takes, the
context it occurs and its various determinants in Nigeria. It
then uses this to analyse existing policies, pronouncements and
programmes in the country to identify their successes, gaps and
barriers they create in HIV and AIDS control and mitigation efforts
in the country. Finally, the study comes up with recommendation for
future actions and directions.
Background
HIV-related stigma and discrimination
has been identified as a universal phenomenon which occur in every
country and region of the world. It was identified as the ‘third
epidemic’ early in the history of HIV by late Jonathan Mann; the
first being the hidden but accelerated spread of HIV while the
second was the visible rise of AIDS cases.
Stigma continues to be potentially
the most difficult aspect of the HIV epidemic to address. However,
addressing it would likely be the key to overcoming/reducing the
impact of HIV/AIDS in its various ramifications and the key to
tackling the first two epidemics identified by late Jonathan Mann.
In recognition of the potential
importance of combating stigma and discrimination, the worlds AIDS
campaign for the year 2002 – 2003 focuses on stigma, discrimination
and human rights. The main objective of the campaign is to prevent,
reduce and ultimately eliminate HIV-related stigma and
discrimination wherever it occurs and in all its forms.
HIV-related stigma and discrimination
is triggered by many factors. These include a lack of understanding
of the disease. Many do not understand that HIV and AIDS cannot be
transmitted through everyday contact. Myths also exist about HIV
transmission. Lack of treatment, irresponsible media reporting on
the epidemic, the fact that AIDS is incurable, social fears about
sexuality and fears relating to illness and death are factors that
further fuel the epidemic of HIV-related stigma.
Unfortunately, this has led to shame
and secrecy associated with the epidemic all over the world both at
individual and government levels. It has also led to fear and
silenced open discussions about the causes of HIV and AIDS and the
appropriate response that needs to be taken at all levels. There is
also increased vulnerability of individuals infected and affected by
HIV and AIDS. Individuals feel guilty and ashamed leading to
depression, lack of self worth, despair. In extreme cases, premature
death through suicide has been reported. Individuals feel guilty and
ashamed, are unable to declare their serostatus openly and express
their views and opinions, which could positively contribute to the
control of the HIV epidemic. This secrecy in turn had led
governments, politicians and policy makers continue to deny that the
need for urgent actions,. The various regional and international
declarations are often not backed up by national legislations and
programmes. The picture of the global epidemic therefore continues
to appear gloomy especially in developed countries.
Presently, 70% of the total global
population of 40 million lives in sub-Saharan Africa. 90% of all
people infected with HIV and AIDS live in the developing countries.
AIDS has reduced the life expectancy of the region by 15 years.
Stigma still remains one of the most significant challenges in this
region for all HIV/AIDS programmes across the prevention to care
continuum. It has continued to increase the vulnerability to
infection as fear of being identified with HIV keeps people from
learning about their status and seeking for treatment. It also
prevents those at risk of infection and some of those affected from
changing their behaviour to prevent infecting others in the belief
that behaving differently would raise suspicion about their HIV
serostatus. Access to health care services has also been limited by
stigma, as many health workers do not understand that the adoption
of simple precautionary measures can prevent transmission of
infection.
Unfortunately, the vulnerability of
women, young adults and children is most often increased in these
same developing countries due to cultural norms and practices,
existing social prejudices which had discriminately related with
these vulnerable group of people. Women are erroneously perceived as
the main transmitters of STIs including HIV infection and are often
treated differently from men. Whereas men are excused for their
behaviour that resulted in infection, women are not; they are
rejected by wider family members and are blamed for the AIDS related
death of their husband. These all, together with stigma,
provide highly combustible fuel for the epidemic.
The resulting impact of HIV-related
stigma and discrimination then becomes astronomous. If affects the
capacity of societies to respond constructively to the devastating
effect of the epidemic; silence continues to prevail and action
remains slow. In Nigeria, a community wherein HIV-related stigma is
strongly felt, the prevalence rate had continued to increase. Life
expectancy had fallen from 53 years in 1990 to 5 years in 2002
largely due to AIDS. Resources needed for care and support by the
health sector would soon exceed 35% of the health budget with
mounting effect on hospital bed utilization and there are an
increasing number of orphans generated by the epidemic (about
900,000 orphans were reported in 2001).
This catastrophe calls for more to be
done. Part of the response lies in addressing the existing
widespread stigma and discrimination, which still remains poorly,
understood particularly in developing countries. Internationally,
there has been a resurgence of interest in HIV/AIDS related stigma
and discrimination triggered at least in part by the growing
recognition that negative social responses to the epidemic remain
pervasive even in seriously affected communities.
A review of abstracts from peer
reviewed studies, regional and international conferences show that
very few studies on HIV related stigma in developing countries had
looked at the forms, consequences, context and determinants of
HIV-related stigma. A few studies had studied the result of stigma
interventions with results showing that programmes, which foster
direct contact with PLWHA, are more effective. However, very little
has been done on analyzing the effects of policies and
pronouncements on HIV-related stigma and discrimination. Rarely are
there studies, which examines notions of stigma and discrimination
interrogating them for their conceptual adequacy and their
usefulness in leading to the design of effective programmes and
interventions. Similarly, not much appears to have been done about
policies and its effects on HIV-related stigma.
This study tries to address some of
these gaps. It tried to identify successes, gaps and barriers
created by existing national policies and government designed
programmes in Nigeria and makes appropriate recommendations for
future policy/programme review and design/redesigning. Specifically,
it
1.
Firstly, it tries to identify the forms HIV-related stigma
takes in Nigeria, the context it occurs and its various
determinants.
2.
Secondly, it appraises the link of HIV-related stigma in
Nigeria to broader inequalities, injustices and denials of
individuals’ realization of human rights and fundamental freedom.
3.
Thirdly, it analysis existing government policies,
pronouncements and programmes in terms of how it has/can efficiently
and effectively tackle the problem of HIV-related stigma
4.
Finally, opportunities for action across each and every
regional/international declaration of commitment made by the
Nigerian Government to tackle HIV-related stigma are identified.
Theoretical framework
Defining stigma and discrimination:
Stigma is often described as a significantly discrediting attribute
possessed by a person with an undesired difference. It results in
the reduction of a person or group from a whole and reduces the
person to a tainted and discounted one. It is a quality that
‘spoils’ an individual/groups identity rendering them ‘unworthy’ in
the eyes of others. Those stigmatized are regarded negatively while
stigmatizing individuals or group conforms to their own ’normalcy’
and legitimizes their devaluation of the ‘other’.
Stigmatization is actually a dynamic
process of devaluation and has ancient roots in long existing
cultures that branded people/groups as outcasts. It exists within
the context of power wherein individuals/groups targeted are
identified and labeled ‘tainted’ from the usual people by
associating negative attributes with the labeling. This results in a
separation of ‘us’ from ‘them’. The stigmatizing response that
results is that the ‘them’ are perceived as non-persons with the
‘them’ eventually losing status and been discriminated against.
Parker and Aggleton suggest that
stigma is a product of relationships based on power control in which
the dominant group legitimizes and perpetuate inequalities thereby
limiting the ability of the stigmatized to resist because of their
entrenched marginal status. The resulting effect is that of
reduction in life chances of the stigmatized through the process of
development of negative thoughts, which leads individuals to do
things or omit to do things that harm or deny the stigmatized
services or entitlements. This is called discrimination.
Discrimination occurs when a
distinction is made against a person that results in is or her being
treated unfairly and unjustly on the basis of belonging or being
perceived to belong to a particular group. Discrimination is a
negative act that results from stigma and serves to devalue the
stigmatized. Because of the link between the two concepts - stigma
and discrimination - this work does not conceptualize the two terms
as separate entities.
HIV-related stigma and
discrimination. This had
arisen out of a response to fear, risk or threat of HIV infection
been incurable, highly contagious and can be deadly. The HIV
epidemic spreads rapidly with so much uncertainty about how the
disease spread, threatening community values. This evokes a
stigmatizing response as stigma is used to enhance or secure social
structuring, safety and solidarity and to reinforce
societal/community values by excluding divergent or deviant ones
HIV-related stigma becomes more
intense as it builds upon and reinforces earlier negative thoughts.
It reinforces dominant ideologies of good and bad with respect to
sex and illnesses, proper and improper behaviour as HIV infection is
believed to arise from deviant behaviour and caused by individual’s
irresponsibility. PLWH are often believed to be deserving of
whatever fate befalls them, because they have done something
perceived by the community as wrong. Oftentimes, these ‘wrongdoings’
are linked to sex especially ‘improper/pervasive’ forms of sex and
the infection is therefore a form of punishment. Men who become
infected may therefore be seen as having patronised sex workers
while women with HIV infection are viewed as promiscuous or are sex
workers.
The family and community often
perpetuate stigma and discrimination partly out of fear, partly out
of ignorance and partly because it is convenient to blame those who
are affected first as it is seen to bring shame on the family and
the community. PLWHA and those affected by the infection are
therefore denied the love and friendship of family and friends.
Oftentimes, they are ostracized from homes and communities with
little or no care and support.
In the workplace, PLWH lose their
jobs because of perceived increased vulnerability of colleagues to
HIV infection when working together. The employers also feel that
HIV infection translates to increased man-hour loss, increased
tendencies for health benefits and compensations. This therefore
manifests as discriminatory hiring and promotion practices,
establishment of unfair benefit packages, limiting coverage for HIV
positive employees and in a number of case, outright dismissals.
The government also perpetuate stigma
and discrimination through enactment of rules, laws and legislations
which prohibit PLWHA from occupations and types of employment,
limits international travels and migration, restricts certain
behaviours such as sex work and homosexuality, and compulsory
screening and testing of groups and individuals and failure to
respond to the care and support needs of PLWHA. This in turn leads
to a false sense of security and complacency of those not belonging
to the stigmatized group.
HIV–related stigma has been further
distinguished as felt and enacted stigma. Felt stigma
is more prevalent and this is described as the feelings that
individuals habour about their condition and the likely reactions of
others. This often makes the individual react negatively to society
with a feeling of shame and guilt oftentimes resulting in depression
and withdrawal symptoms. The tendency for this increases in the
African culture which is predominantly collectivistic; individuals
are defined as part of a group such as families rather than
independent entities. A HIV positive status therefore castes a
negative reflection on the group and not on oneself. This increased
the feeling of guilt, shame and loss of face. On the other hand,
there is the enacted stigma, which refers to the actual
experiences of stigma and discrimination.
There are also reported cases of secondary
stigma wherein people associated with PLWH become stigmatized. These
include children, spouses, friends, relatives and carers. They end
up also experiences discrimination as they are erroneously assumed
to be infected.
Many also who had had to face stigma
before the HIV epidemic now faces reinforced stigma during the
epidemic when infected with HIV thereby compounding pre-existing
stigma. HIV/AIDS justify further marginalisation of such people
enhancing deeply rooted prejudices. Unfortunately people who often
experience dual/compound stigma often have fewer resources to cope
and resist stigma. For men who have sex with men, sex workers and
intravenous drug users – groups of people with high-risk behaviour –
HIV infection compounds the already existing institutional stigma
problems
In conducive environments, PLWH may
face positive discrimination wherein an infected individual is
selectively selected out for undue favour and favouritism because of
his/her health status. They are related to as the ‘weak one in the
pack’ who is entitled to all forms of luxuries and exigencies
otherwise not merited.
Although the images associated with
HIV/AIDS vary just like the virus itself, they are patterned to
ensure HIV-related stigma reinforces existing societal inequalities
and the solution remains as elusive as a cure for the infection.
Implication for enquiry
The dynamic and ever evolving nature
of HIV-related stigma makes it complicated to tackle. This study
tries to understand HIV-related stigma and its effects in the
Nigerian context, taking it from the starting point of stigma being
a discrediting attribute and moving on to conceptualise stigma and
discrimination as intimately linked to the production on social
differences; social differences wherein group of people are
identified as ‘good’ in reference to the ‘bad’ stigmatized group. It
would be discussing how adept policies and programmes on HIV-related
stigma can be formulated/redefined based on analysis and
understanding of its forms, context and determinants in Nigeria.
Study design and method
The project described here studies
the forms, context and determinants of HIV-related stigma in Nigeria
in an effort to analyse and provide suggestions and directions to
programmes and policies that tackle stigma in the country. This
project was conducted over 6 weeks between September 2003 and
October 2003. Data was collected through the use of open ended
questionnaires designed to elicit specific information from persons,
personal key informant interviews, telephone interviews of key
respondents and the use of e-mail based discussions.
The key components of the study are:
1.
Baseline survey to determine key issues: factors and
determinants of HIV-related stigma and discrimination in Nigeria.
2.
Analysis of key policies, pronouncements and programmes on
HIV/AIDS stigma and discrimination in Nigeria
3.
Compilation of case studies of best practices from the African
and global context.
HIV activists, PLWH, persons affected
by HIV/AIDS, women infected and children of infected parents, home
base care providers, men who have sex with men, religious leaders,
health professionals, educators, journalists, lawyers and employers
were interviewed.
Information was sought on
individual’s understanding of HIV-related stigma, those who are
affected by the stigma, those who stigmatise, where HIV-related
stigma occur, its possible causes and its varied effects. The study
also sought suggestions on possible ways of tackling HIV-related
stigma.
An analysis of reports in the print
media was also included so as to assess whether or not there was a
link between the language used by the media and a fueling of the HIV
related stigma crisis. The study also tried to assess whether there
was a link between the language used by the press and the derogatory
language used by people in the community when referring to PLWH.
All existing key national policies were
analysed. These included: the 2003 edition of the National Policy on
HIV/AIDS, the 2002 HIV/AIDS workplace policy, the 1996 National
Health policy, the 2001 National Policy on Reproductive Health, thr
2001 draft National policy on Women, The 2001 draft National Policy
on Population and sustainable Development, the 2002 National Policy
on the Elimination of Femal Genital Mutilation in Nigeria, the 2002
Children and Young People’s Bill and the 1995 National Adolescent
Health Policy.
All existing regional and
international/regional conventions and declarations of commitment
and pronouncements, which Nigeria ratified, were analysed to examine
for its possible inclusions in the national response activities.
These included the UNGASS declaration of April 2001, the UN special
session declaration of commitment of June 2001, The International
Convenant on Economic, Social and Cultural Rights 1966 and the
International Convenant on Civil and political Rights 1966.
A review of the 1999 Constitution of
the Federal Republic of Nigeria and the Criminal Law of Nigeria were
also undertaken to assess how the law relating to the bill of right,
grants and pensions, insurance, health, children and criminal law,
protects the human rights of individuals against HIV related stigma
and discrimination.
The HEAP, which strategically
outlines the national plan of action for HIV/AIDS over three years
from 2001-2003, was also analysed for possible HIV-related stigma
reduction activities.
The author subscribed to an e-mail
listserv discussion on stigma (AF-AIDS)
and HIV so as to be able to learn about practices from other nations
in controlling HIV-related stigma. Extensive reviews of reports of
from other nations were also undertaken. These include a study of
the report from the International Centre for Research and Women’s (ICRW)
on HIV-related stigma in Ethiopia, Tanzania and Zambia (2003), a
study on Uganda and India reported by UNAIDS (2000), studies in
children and youths infected and affected by HIV/AIDS in South
Africa by Save the Children (2002), and studies in the workplace
reported by the Global Business Coalition on HIV/AIDS (2003).
Finally, the author undertook a
review of all abstracts that popped up during an electronic search
using the Medline search engine. The Key word entered for the search
was HIV-related stigma. A review of a compilation of all abstracts
and articles published by the data bank of the Nigerian Institute of
Medical Research, Lagos was also reviewed. Published peer reviewed
articles downloaded from various referenced websites were also
reviewed for this project.
Results
1. The Concept of stigma
Stigma continues to be defined in
different ways by different people. The various definition of stigma
helps to understand the different conceptualization of stigma.
Recurrently, stigma has more often been used as a language of
attribute rather than relationships23 and subsequently,
practice has often transformed stigma or marks into attributes of
persons. The stigma or mark is seen as something in the person
rather than a designation or tag that others affix to the person. It
develops from cultural stereotyping which then gives rise to the
development of prejudices that lead to an emotional reaction.
Discrimination is the behavioural consequences of prejudice.
Stigma as defined by many experts
also varied but reflected a single concept. Examples of some of the
definitions are:
“Attaching bad names, bad feelings or
shameful meanings to a situation that may appear not to be agreeable
to ones feelings or value”
Femi Soyinka, NELA,
Ibadan
“It is a negative social label that
cast aspersion on an individual or group of persons. It could be a
thought, belief, action or utterance based on preconceived notion”
Lekan
Olufodurin, Media Development Network, Lagos
“Stigma is a negative labeling of
some sort”
Bunmi Lawal, Nurse, Educationist, Ile-Ife
“Stigma is a bad label on something you do not know about”
Dare
Odumuye, Alliance AIDS Initiative, Ibadan
“It is a powerful and debilitating
way of treating a particular group due to perceived thought about
them. Stigma often breeds negative reaction against some people as
such people are shunned, rejected and treated with disdain”
Ebenezer Durojaiye,
Centre for the Right to Health, Lagos
“It is an evil and bad happening
attached to someone”
Stephen
Kitchener, Nigerian Medical Association
“A conscious or subconscious
manifestation of negative attitudes towards people on the grounds of
an assumed or actual difference”
Matt
Greenall, International AIDS Alliance, UK
“Society constructs specific
norms/values in order for it to function. Anything that disrupts
society is stigmatized. HIV/AIDS …. pose a threat to the security of
societal norms/values and this is society’s way of protecting itself
– by blaming a specific group of the problem of infectious diseases
– this attitude gives a type of self imposed safety attitudes
towards itself”
James Hoyt, HIV political activist and researcher, USA
The concept of stigma as defined by
the various individuals connotes that stigmatization is a negative
concept with an associated negative action.
It is however important to define HIV
related stigma from the perspective of people living with HIV/AIDS.
This is because studies could be conducted from the vantage point of
theories that are uninformed by the lived experience of the people
they study. When little priority is given to the words and
perceptions of people studied, misunderstanding of the experience
results and there is continued perpetuation of unsubstantiated
assumptions. HIV-related stigma as defined and understood by some
people living with HIV/AIDS include:
“Stigma is an act of abandonment or
rejection of someone“
Kenny Akintifonbo, Living Hope Care, Ilesa
“Stigma is something that puts fear in the
heart or makes an individual to isolate his/herself from the
community”
Kehinde Omotoso, Living Hope Care, Ilesa
“Stigma is a negative branding or
labeling which leads to a feeling of unworthiness, devaluation,
shame and disgrace. It often results in spoilt identity and
discrimination”
Rolake Nwagwu, Treatment Access Movement, Lagos
These definitions do not differ
significantly from the conceptualization of stigma by researchers in
terms of content. In all, the term stigma tends to be applied for
situations where elements of labeling, stereotyping, separation,
status loss and discrimination co-occur in a power situation that
allows the components of stigma to unfold25. It may occur
without knowledge. Oftentimes, it is an unreflective action which
comes from unconscious inputs from events encouraged by multiple
factors such as culture. Thus in studying and understanding stigma,
one needs to focus on both the stigmatized and on those who do the
discrimination – the producers of rejection and exclusion.
2. Forms, context and determinants of
HIV related stigma in Nigeria
Varied forms of HIV-related
stigmatization were identified during the study. It includes
employment loss, reduced access to health care, rejections from
friends and family. There are also ranges
of contemporary behavioural responses to HIV related stigma. This
varies from withholding of help, to avoidance including landlords
who will not lease houses to people infected with HIV or employers
who would not hire people living with HIV. Cases of segregation had
also been recorded as well as coercion (mandatory treatment or
criminal justice behaviours). There have been nationally reported
cases of children of people living with HIV/AIDS expelled from
school and a person living with HIV denial access into a court room
because of her status.
“I have had to face stigma from a
sister-in-law. My parents and siblings know of my HIV status and
care for me but my sister-in-law keeps her distance from me along
with her children. Her embarrassing acts made me leave the house we
were living in together. I had to take up a new place of my own.”
Sikirat Lasisi,
NELA, Ibadan
“There was the case of a
serodiscordant couple. The husband was HIV positive. As soon as he
learnt of his status, he informed his wife so that she could also
get tested. She however tested negative. Following the test, the
wife has been treating her husband so shabbily even when other
members of his family show him love and care.”
Kemi Adejumo, Home Base Care provider, Ibadan
“I was stigmatized when I was
receiving medical care in the University College Hospital, Ibadan. I
developed ear and eye problems following my diagnosis. Once when I
went to the ear clinic, the consultant informed me that I needed to
wash my ears and she wondered why that had not been done. On reading
my case note, she decided to place me on drugs and never discussed
the ear wash again. The same thing happened at the eye clinic.
Despite the fact that I kept complaining of deterioration, I was
never slated for surgery to remove my cataract even when others had
surgery done for them. I kept using drugs, which were not working. I
finally stopped attending the clinics”.
Tajudeen Raji,
NELA, Ibadan
“I worked with Pacific Freightliners
Limited, Ojota, Lagos, for 10 months before being laid of on the 12th
of October, 2001 after testing positive for HIV. The company got to
know about my status because they had to report back to the company
on every staff that received medical treatment from the hospital. I
presently find it difficult to get any new employment. My only
alternative is to resort to farming as a source of livelihood. I
find this quite difficult after been gainfully employed for 11
years”
Femi Ibitayo,
Living Hope Care, Ilesa
“I have been ejected out of my house
twice because of my HIV status. I have gone public about my status
and so I am easily recognised in the community. Presently, I live
within the hospital where I have a corner to myself. At the end of
each day after counseling new clients diagnosed with HIV in the
hospital, I go to sleep in my little corner.”
Titi Adeniyi, Living Hope Care, Ilesa
“In the course of my work, many of my
clients who come to us to seek legal advice have experienced stigma
from various sectors. There was a case of a young man who complained
of been denied an opportunity to marry his partner because of her
HIV status despite the fact that he was willing to marry her”.
Ebenezer Durojaiye
“Once a television service
cooperation in Nigeria refused to allow the Ambasadors of Hope
Mission participants (people living with HIV/AIDS) to enter the
television house for a programmed event for recording and
broadcasting”.
Femi
Soyinka
“I recall the case of a lady living
with HIV who was relieved of her duty as a Sunday school teacher in
the Children’s Department in church because the parents fear that
their children could be infected.”
Lekan Otufodurin
Cases of associated secondary stigma
also occur. This usually occurs with home base carers and relatives
of persons living with HIV/AIDS. Although the level of stigma for
the care givers is less than for those infected, nevertheless, they
are also stigmatized.
“There was once I noticed that people
started watching and noting houses I go to visit. It was assumed
that any house I enter, the occupant must be infected with HIV. One
of my clients once asked me to stop visiting her at home because my
presence was causing a lot of suspicion in the neighbourhood about
her possible HIV status”
Bola Oke, Home
base carer, Ile-Ife
“People appear to have stigmatized
our institution. They do not want to be associated or seen in the
building. They feel that people coming to our organization have AIDS
or have relatives living with AIDS”.
Femi Soyinka
Usually when people are identified as
being infected with HIV, they tend to be sneered at, talked to in a
derogatory way or isolated. Feeding utensils are separated even in
the homes and in some cases; there is outright neglect and
abandonment.
“There is a 28year old lady, a member
of our support group, who was isolated by her family members because
she was HIV positive. She was put in a room and given all necessary
household utensils for her sole use. When the public started getting
to know about her status, she was then sent packing from the house.”
Kehinde Omotoso
“There was once a young girl in
Ejigbo (Osun State) who was diagnosed HIV positive. She was quiet
ill at the time of diagnosis. Once the parents learnt of the
serosatus, she was moved from the main house into the uncompleted
building at the back of the compound. She was fed like a dog. It was
when the home base care team started visiting that their attitude
gradually changed.”
Ibiyemi Fakande,
Home Base Carer, Ilesa
Although quite a number of forms in
which stigma is enacted by the various sectors in the community were
enumerated, self-stigma was also identified. This
self-stigmatization occurs as a result of enacted stigma, which
affects labeled persons in important ways. Many people who are
infected with HIV are aware of the HIV related stigma. Like the
public, some agree with the stigma and apply it against themselves.
The individual then avoid social behaviours and processes that
increase the chance of identification as a person living with HIV
and thus a potential object for stigmatization. One person
living with HIV reiterated:
“I do not subscribe to the
antiretroviral programme of the organization even though I can
afford it because daily intake of the medical pill would make people
suspicious about my HIV status. I still want to marry”
S.F., Living Hope
Care, Ilesa
Apparently, women are worst affected
by stigma in the community. The Nigerian culture and value system
increases their vulnerability. This is because of the long-standing
ideology that women are the direct and indirect vectors of STIs.
This influences the way family and community members react to HIV
positive women. Most times, people living with HIV/AIDS receive care
and support from their immediate families but there are a number of
reports of women being ill treated by their husband’s relatives who
outrightly accused them of being the source of infection of their
son’s infection. One of the home care provider interviewed reported:
“Because women are already culturally
disadvantaged in the country, they are easily accused of infecting
their husbands with HIV/AIDS”
Ebenezer Durojaiye
Other groups of people were equally
identified to be badly affected by HIV related stigma because of
their increased vulnerability. These are the sex workers, prisoners
and men who have sex with men.
“Sex work is criminalized under the
Nigerian law. The society already has a negative impression about
sex work. Sex workers become further stigmatized when they become
infected with HIV. The perception of the society is that an HIV
positive sex worker needs no support since she is merely reaping the
fruits of her promiscuity. Prisoners are seen as dishonoured members
of the society. Therefore, when they become HIV positive, the
society tends to shun them the more.”
Ebenezer Durojaiye
For many, it is believed that fear
arising from poor knowledge and understanding about the possible
sources of infection is a main course of stigma. The belief that HIV
infection is as a result of a lifestyle not acceptable or in
conformity with the acceptable norms/values of the society further
reinforces the process of stigmatization and discrimination of
people living with HIV/AIDS. The fear of death arising from a
communicable disease that has no cure further heightens the tendency
for discrimination and ostracization of people infected with or
suspected to be infected with HIV.
“Many of those who stigmatise people
living with HIV/AIDS lack adequate and correct information about
HIV/AIDS. Ignorance about the epidemic is not limited to the
uneducated. It also exhibited by the elites. For instance, a High
Court judge had ruled that unless expert evidence is provided that
the courtroom will not be infected by the plaintiff who is HIV
positive, she could not enter the court.”
Ebenezer
Durojaiye
“Many usually think it affects only
people who are promiscuous. Because of their level of ignorance
about the disease, many are not too comfortable relating with PLWH.
Even in religious circles, they are sometimes treated as outcast
without much care and support.”
Lekan
Otufodurin
An association between stigma and
ignorance has long been demonstrated though the nature of the
relationship is unclear. Educational programmes do create
enlightenment but often do not take care of people’s deep fears. A
further understanding of the possible causes of HIV related stigma
may give insights into how to best tackle this epidemic. Other
perspectives to the possible cause of HIV related stigma include:
“HIV stigma arises because the
disease is incurable
Stephen Kitchener
“The feeling of righteousness or
superiority – spiritually, socially or financially – encourages
stigmatization.”
Femi
Soyinka
But then, stigma associated with
discrimination and ostracisation has had an enduring history in the
country long before the HIV epidemic. The Nigerian legal system had
long labeled groups of people as ‘bad’.
“Section 214 and 215 of the criminal code of
Nigeria label men who have sex with other men, commercial sex
workers and intravenous drug users as ‘bad’ people by criminalizing
their choice of lifestyle. The people in the ‘good’ group then point
fingers“
Ebenezer Durojaiye
Also, the Nigerian culture has a long
history of labeling. The culture has in many ways instituted the
violation of human rights. In Igboland, Southeastern Nigeria, there
is the “osu” caste system where people from a particular lineage
were meant to be sacrificed to the gods and are not fit to marry
other ‘normal’ citizens. People with diseases such as epilepsy and
psychiatric illness had long suffered stigmatization. HIV related
stigma has only built on a system that readily stigmatizes and
discriminates as a justifiable means of societal preservation when
ignorance and misconceptions prevails. The tendency to stigmatize
readily increases in a society like Nigeria that readily judges and
condemns actions with capital punishment.
“Ignorance is often cited as the main
cause of stigma but I think stigma can also be created and aided by
culture where there is attack on the dignity of people and where
references are made to specific groups and behaviours in judgmental
ways in particular; where there is lot of talk of morality”
Matt
Greenall
Even though societal prejudices had
encouraged HIV related stigma, certain factors further promoted its
propagation. One of these factors includes media reports of the
Nigerian Journalists on HIV related stories. Over the last 4 years,
the print media had reported more false information and negative
reports on HIV/AIDS than it had done correcting misinformation,
misconception and reducing stigma. A look at the table below
would give a picture of the print media reporting on HIV news.
“To a large extent, negative media
reports on HIV/AIDS contributed to stigmatization of people living
with HIV/AIDS. The media remains the main source of information for
the public. Unfortunately, they hear and read about the largely
negative slants on HIV/AIDS projected by the media. Pictures of
people dying with AIDS were often projected creating a hopeless
state in the campaign against the virus. Even now that there is
improvement in the quality of reporting on the virus, the general
public still indulge in stigmatizing of people living with HIV/AIDS
because of past reports and persitent negative reporting still
persisting in the media.”
Lekan Otufodurin
|
Year of Report |
Total number
of HIV/AIDS related stories |
Number of
reports with false information, negative reports and use of war
metaphors |
Number of
reports on HIV related stigma and discrimination |
|
1999
2000
2001
2002 (second half)
2003 (Jun 10–Aug 10) |
144
263
875
332 |
25
18
18
51
|
2
2
3
41
23 |
Also the war language often used by
the media in reporting HIV stories creates a sense of emergency
action and need for self-preservation. Unfortunately, the people
take the war to people living with the virus and not the virus
itself resulting in discriminatory actions against people living
with the virus. These reports, in an attempt to create a sense of
emergency, unconsciously promote stigma and discrimination.
The language used for reporting may
however be a reflection of the attitude and predisposition of
journalists to HIV. A survey carried out as part of a pre-training
assessment during a workshop organized by JAAIDS for leaders of the
Nigerian Union of Journalists (Southern Zone) in September 2003,
revealed that 50% of the participants did not believe that HIV/AIDS
was real (8 out of 16) while 31% (5 out of 16) strongly felt that
HIV infection was caused by promiscuity.
“A report on the MSM convention by Nasir
Dambatta of the Weekly Trust newspaper published on the 24th
of October was highly stigmatizing. The reported was not at the
convention yet he wrote an extensive report on the convention based
on personal bias. Unfortunately, Nigerians take the reports of the
media as wholesome truths. This kind of bias reporting only aids
stigmatization of MSM”
Dare Ogunmuye
Nationally designed programme can
also promote stigmatization. Often times, the national HIV
prevention and control programmes direct their actions to high risk
groups and not people with high risk behaviour. This concept of
programme planning and design further reinforces the notion that
certain groups of people are the cause of HIV infection rather than
the notion of high-risk behaviours which may be applicable to all
persons as the risk factor. In addition, awareness-raising messages
also help to perpetuate negative images of HIV/AIDS and risk
re-enforcing stigmatization of persons infected with HIV.
“The IEC materials are often of poor quality.
In particular, they attack the dignity of persons living with HIV.
They make reference to specific type of people and behaviours in
judgmental ways; they talk about morality and they promote
abstinence as the best approach to prevention – abstinence for good
people and condom for bad people “
Matt Greenall
Religion had also helped to fuel the
HIV related stigma epidemic. The reference to HIV infection as sin
and punishment from God helps with the further alienation of the
‘bad people’ from the ‘good people’.
“Religion plays an important role in
HIV related stigma. Many religious preach that if you are ill, that
is God’s way of telling you that you have done something wrong and
that you need to get back on the right path.
James Hoyt, HIV political activist and researcher, USA
“People often talk about health care
settings as a stigmatizing setup but I think there is a need to take
care not to give the impression that health professionals stigmatize
more than other people. Perhaps the results of their stigma have
more immediate effects. I think many religious institutions create
HIV related stigma perhaps not so much as against people living with
HIV/AIDS but against people who have sex outside marriage in
general, highly affected groups in particular”
Matt Greenall
HIV related stigma, like other causes
of stigma, might actually be an attitudinal problem with a cultural
context to the stereotyping process. Various triggering factors may
then be responsible for its expression. This attitudinal concept of
the origin of all forms of stigma is further corroborated by the
reports of MSM.
“Even within the organization, members who are
HIV positive are castigated by those who are not”
Dare Ogunmuye
Despite the unfolding understanding
of stigma and stigma related behaviour, a lot still needs to be done
to further understand this complicated issue. This is moreso in
Nigeria where some geographical variation are noted in its context
of expression.
“I noticed that more people are open
about their HIV status in the Southern part of Nigeria than in the
North. This may be because there is more awareness about the disease
in the South unlike in the North where a lot of myths about the
disease still prevail. “
Lekan Otufodurin
“There is less stigma attached to HIV
infection in the Hausa area (North). This may be because of the
attitude of the people which overlooks issues and explains it off as
God’s wish.”
Stephen Kitchener
Presently, research on HIV related
stigma in Nigeria is very sparse. The use of a search engine, the
Pubmed, for the listing of abstracts of peer reviewed and published
articles on HIV related stigma yielded only 85 articles. None of the
articles reported about HIV related stigma in Nigeria. Also, a
review of publications by Nigerians on HIV/AIDS over the last decade
compiled by the Nigerian Institute of Medical research showed that
only 31(6.03%) of the 514 article enumerated were identified to be
on Human rights, politics, commitments and action. Of this, 3(9.7%)
were on human rights and ethics. The need for more country specific
HIV related stigma research cannot be overemphasized in view of the
need to identify indicators for stigma which would be used to
develop multidimensional measures appropriate for the local context.
There is a need to understand the ways stigma is perceived and
measured in the various Nigerian cultures as this would enable
planning of appropriate strategies and interventions which would
mute the self interest that drives HIV related stigma.
3. Consequences of stigma
Stigma, when applied to health
conditions, is a globally pervasive problem threatening
psychological and physical health at the individual and group level.
The poor treatment of an individual because of stigma leads to poor
outcomes and perpetuates other adverse health, social and economic
consequences for the individual, families and communities often
beyond their prevalence in the population. Such consequences
include:
a.
Poor access to
medical care:
There are varying reasons for poor access to medical care one of
which is stigmatization of people living with HIV/AIDS by health
care workers. Stigma is not new to public health neither is it
unique to HIV/AIDS. Reports of prejudices, discounting, discrediting
and discrimination to persons who are ill or perceived as ill in the
health setups have often been reported with infectious diseases that
are poorly understood. People are highly attuned to health care
workers attitude are less likely to seek treatment for HIV related
opportunistic infections in a timely manner in environments they
have experiences – or fear that they might experience – discounting,
discrediting or judgmental attitudes from health care providers and
their staffs26. This in turn limits the effective
treatment of HIV/AIDS, predisposes to late diagnosis and encourages
further spread of the infection.
Secondly, stigma leads to poor
utilization health care facilities even when available. The use of
specific health facilities may potentiate the labeling of people who
access health care services there. Hence potential customers may opt
not to access care as a way to avoid labeling and the resulting
discrimination.
“I know of a lady who developed
cardiac failure as a complication of her HIV related status. We
encouraged her to go to the hospital for treatment, as she would
require specialized care. She continually refused this because of
her past negative experience in the hospital because of her HIV
status. She could afford the cost of treatment and she had so much
will to live but she refused to go to the hospital. She later died
at home as a result of cardiac failure.
Ibiyemi Fakande
For Nigeria, the effect of stigma
even limits the success of the ARV programme. For many months after
the initiation of the Nigerian Government’s programme on ARV wherein
the cost of treatment was heavily subsidized, most of the 25 centres
which administered the drugs could not fill its quota of recruiting
and managing 25 HIV positive client. Yet the country has an
underestimated 3.5million adults living with HIV. Stigma is
recognized as one of the factors limiting access to these services
“I know of a couple who would not
start the ARV treatment on our center because they refer patients
down here for treatment. There is also a societal elite diagnosed at
the center who decided to relocate and access treatment somewhere
else outside Lagos. She would not want to be seen accessing HIV
management.”
Taiwo Adewole,
Nigerian Institute of Medical Research, Lagos
Thirdly, even when health facilities
and services are accessed, stigma may result in poor compliance with
treatment regimens.
“There is a high drop out rate for
the ARV treatment programme here. Many drop out because they cannot
afford the cost of the drug regimen. A number drop out because of
stigma. We however do not have the statistics to corroborate this
because follow-up of clients at home is a task the center finds
really hard to combine with our patient’s clinical management
programme.
Taiwo Adewole
Conversely, the increasing
accessibility of persons infected with HIV to treatment and
antiretroviral therapy would drive the HIV epidemic further
underground. This is because stigma prevents people from opening
living with their status and with ARV therapy, individual health is
improved and so would be the tendency to live in secrecy about HIV
status.
“I have clients on antiretroviral therapy who
are less likely to declare their status because of stigma. They are
much healthier and have everything to lose by telling people they
are HIV positive”
Femi Soyinka
b.
Interference with
prevention programmes:
Stigma may influence HIV risk behaviour. Lowered self–esteem that
results from self-stigma may negate motivation for self protection
(consistent practice of safer sex) leading to multiple sexual
encounters in an attempt to seek self-validation. Also, it may lead
to use of alcohol or substances that impair judgment and interfere
with a person’s ability to negotiate and practice safer sex. This
all leads to interference with prevention programmes. For many the
fear of receiving a positive result remains a potential disincentive
to voluntary counseling and testing.
“In a research I conducted, more than
70% of the 221 women I interviewed were ready to do a VCCT. However,
over 90% of the other 30% who were not willing to do a test said
stigma was the reason for not wanting to know their status ”Ebun
Adejuyigbe, Paediatrician, Ile-Ife
This result is similar to that of the
study by Msobi et al done in Dar es Saleem. Although stigma may not
be the sole contribution to many individuals not testing, clients
are however more likely to seek out and follow through with HIV
testing services they perceive to be non-judgmental26.
The Center for Disease Control and Prevention unequivocally asserts
that stigma hamper prevention and there is need to work towards
minimizing these negative consequences. This is even moreso for
stigmatized groups and individuals whose HIV positive status would
worsen their plight in the community.
“Stigma and discrimination feeds the
secrecy in which MSM live and socialize. Taking a test and finding
out one’s HIV status may mean disclosing one’s sexual orientation,
facing stigma as an MSM and as been HIV positive. Non friendly
services and an unfriendly legal environment increase the tendency
for not taking an HIV test.”
Dare Ogunmuye
For some that know their serostatus,
non-disclosure even to relevant relations such as spouses, have been
a major identified way of coping with the possibility of HIV related
stigma. This may negate the practice of safer sex and in turn,
interfere with prevention efforts.
“We had a person living with
HIV/AIDS in our organization who never disclosed her HIV status to
her husband for over 3 years after diagnosis until he died. She felt
the stigma she would face from her husband and the family would be
more than she can cope with.”
Ibiyemi
Fakande
c.
Status loss:
With stigma, the stigmatized is placed lower in status hierarchy.
This in turn can have an effect on the individual’s life chances
because the lower status itself becomes the basis of discrimination.
Low status may make a person less attractive to socialize with, to
involve in community activities. In this way, stigma can have a
cascade of negative effects on all manners of opportunities for the
stigmatized.
d.
Effect on business:
Whether woven into company policies or unintentional, stigma can be
pervasive in the workplace and discriminatory HIV practices hamper
company operations. Because of stigma, HIV positive persons do not
apply for jobs because they fear discrimination and feel they will
not be hired based on their status. Even with a company policy in
place, the attitudes of fellow workers can also have a negative
impact and hampers the use of company organised health care
facilities because of concerns of confidentiality and privacy. This
results in compromised employee health. Unfortunately, many
employees fail to acknowledge the possible effect of HIV on their
business presently or in the future. Denial was the order of the
day.
e.
Effect on HIV
related activities:
Stigma also has its negative consequences and effect on activities
of oragnisations working towards mitigating the impact of HIV/AIDS
in Nigeria.
“As a journalist, HIV related stigma
adversely affect my job because more people are not willing to
openly decal re their HIV status. The media is therefore forced to
continue to use pictures of the same few individuals out of the over
3.5 million infected Nigerians who openly declare their status. In
the Nigerian situation where many do not believe about the existence
of the virus until they hear personal testimonies, the job of the
media is then made difficult.”
Lekan Otufodurin
“Stigma affects my work as a home
base care provider. Unfortunately, this often emanates from the
people living with HIV/AIDS that we work with and their family
members. They often refer to us as vultures who use their plight and
situations to make money. This can negatively affect the zeal to
work.”
Kemi Adejumo
“People living with HIV/AIDS become
more difficult to access and work with, making intervention
programmes harder to introduce and sustain.”
Bunmi Lawal
f.
Effect on children
of people living with HIV/AIDS:
Stigma makes disclosure of parent(s)’s status to children difficult.
This is worrisome, as parent(s) cannot prepare the children for
their death or prepare them to be card for by others. This only
increases the children’s vulnerability. Less than 20% of the people
living with HIV discussed with during this study had disclosed their
status to their children.
“I did not tell my daughter about my
HIV status because of her possible reaction.I live with my parents.
My siblings and father had shown very little care and support for
me. My child might also react negatively if she knows"
Toyin Idowu,
Living Hope Care, Ilesa
“My child comes with me to support
group meetings but she does not know my status. I have not discussed
about my status with any of my children because of what I saw a
neighbour go through after informing her children about her status.
She was completely abandoned. I do not want to go through that
harrowing experience. They would know about my status when I become
very ill”
Florence Adeyeye, Living Hope Care, Ilesa
“I only told my children about my HIV
status recently following the advise we received during the support
group meeting. I had kept the knowledge away from them for so long
because I wanted to limit the number of those who know my HIV status
and prevent stigmatizing action of people. But I told them not to
tell anyone about it.”
Afusat Fakayode, NELA, Ibadan
4. Coping with stigma
Many persons living with HIV use different
strategies for coping with the experience and impact of stigma. Some
cope by disclosing their status in order to get support of family
friends and health care workers
“I disclosed my status to all members of my
family because that way I can get help and support from them”
S.O NELA, Ibadan
Another coping strategy is denial and
non-disclosure of status. The Nigerian culture that is
collectivistic causes stigmatization of the group and not the
individual. This increases the feeling of shame. In this culture,
concealment of one’s seopositivity is made even more attractive as
this helps to protect against stigma and discrimination.
“My status is a secret. I have not told any of
my family members or my in-laws. If I tell them, I do not feel I
would face any stigma from them but I would rather keep it a secret
than find out what anyone may do”
Afusat Fakayode
