Haritiana Rakotomamonjy - July 2010
Combating stigma and discrimination against people living with HIV in Burkina Faso
Case study paper: UNICEF Learning Programme on Advances in Social Norms and Social Change
July 30
1. Introduction:
HIV&AIDS infection remains a major public health issue in Burkina Faso. In 2008, the
national HIV prevalence among adults aged 15 to 49 years was estimated at 1.6%,
categorizing Burkina Faso as a country with a generalized epidemic.
There are great
prevalence differences between urban and rural areas. Prevalence in urban areas peak at 4%
whereas it hovers around 0.5 in rural areas. As a result, there are an estimated 130,000
people living with HIV in the country, 51% of whom are women.
Thanks to an exemplary high-level government leadership and a vibrant network of
community-based organisations, the country has made substantial progress in preventing new
infections and in increasing access to care and support for those who are infected with the
virus. As of December 2009, about 25,000 adults and children were on antiretroviral therapy.
Nonetheless, stigma and discrimination still plague the quality of life of people living with
HIV and often leaves them marginalized and ostracized by families and community
members. In addition, stigma contributes to hindering optimum access to prevention-ofmother-to-child transmission services; as of December 2009, only about half of all pregnant
women had access to HIV testing.
After a brief definition of stigma and discrimination, this paper will analyse the effects of
stigma and will examine the different schemata underpinning the practice of discriminating.
Afterwards, this document will attempt to critique the main approaches used so far in Burkina
Faso to stem stigma and discrimination. Lastly, this paper will propose new strategies to
address the issue of stigma and discrimination better.
2. Describing stigma and discrimination against people living with HIV:
2.1 Defining stigma and discrimination:
A 2009 UNAIDS-commissioned review of the most recent HIV literature found that stigma
and discrimination is still pervasive in many countries (UNAIDS, 2009). UNAIDS describes
stigma as a dynamic process of devaluation that “significantly discredits” an individual in the
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eyes of the others (UNAIDS, 2005).
HIV-related stigma may affect those infected or
suspected of being infected and those affected by AIDS. Discrimination is when stigma is
acted upon through actions. Discrimination refers to any form of arbitrary distinction,
exclusion or restriction affecting a person by virtue of an inherent personal characteristic, in
this case being living with HIV.
2.2 The effects of stigma and discrimination:
Whereas discrimination is a clear violation of the Human Rights (Article 2), it must be
regarded as a public health issue as well. In fact, it is an obstacle to the provision of
information on the risks of transmission; it makes people less willing to learn about their HIV
status; it makes infected individuals deny that they have the disease and less likely to seek
treatment. In addition, when health workers discriminate, it limits the ability of the health
system to meet patients’ needs. Finally, whereas it definitely affects the quality of life of
those infected, discrimination may increase the social vulnerability of individuals and their
families and thus indirectly increasing the vulnerability to the risk of HIV re-infection.
In Burkina Faso, there have been numerous accounts of pregnant women chased away from
their homes or of young children abandoned because of their HIV status. These accounts of
stigmatization and rejection are backed by the 2003 Demographic and Health Survey data,
where only 75% of women and 81% of men said that they were willing to care for a family
member sick with AIDS.
2.3 The schemata and scripts underpinning stigma and discrimination practices:
Based on programme experience and literature, discriminating practices against people living
with HIV appear to lie on different and diverse schemata. These schemata may be coexisting and/or reinforcing each other. Some of these schemata are described below:
The first schema is that HIV is seen as a disease coming from elsewhere, a “foreign disease”,
with the near-universal representation that otherness is dangerous.
Stigma would then
reinforce the fear of outsiders and other vulnerable groups such as prisoners and migrants.
Those who practice the behaviour would then do it as a means of protecting their own social
group.
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The second schema is linked to metaphors associating HIV with death, guilt, punishment and
other crimes. In this scenario, there is a categorization of the individuals living with HIV as
deserving their HIV positive status as a result of a failure to observe social norms of
behaviours or have done something “wrong” and punishable. The religious ideas of sin can
also sustain and reinforce the perception that HIV is a punishment for a deviant behaviour
(UNAIDS, 2005). Because of its links with behaviours related to sex and blood, HIV
infection particularly lends itself to this interpretation legitimizing rejection and
condemnation.
This second schema is also related to the negative association of HIV with already
marginalized behaviours such as sex work, drug use and homosexual practices. The media,
particularly in the early nineties, may have helped to reinforce the blame using languages that
suggest HIV as a “gay plague”.
A third schema lies on gender inequalities underpinned by ideas about masculinity and
feminineness that have historically resulted in women being blamed for the transmission of
sexually transmitted infections (venereal diseases – Venere in Latin/meaning Venus) of all
kinds. As a result, guilt has been imputed to women out assumed “promiscuity”. Once
again, the media, particularly in the early nineties may have helped to reinforce the blame
using language that suggest HIV as a “woman’s disease”.
A fourth schema is grounded on the fear of contagion. Many people shun infected persons so
as to avoid transmission by direct or indirect contact. Infected persons in this way suffer
daily marginalization. For example, this could be the rationale for denying access to school.
Such case is also frequent in the Burkina Faso’s health system as health facilities are not
sufficiently equipped to protect health workers from work-related HIV exposure. While some
of the behaviours based on this schema could be improved through education, skills
acquisition and personal protection equipment for health workers would be crucial for
improving the situation.
A fifth schema seems to stem from a sense of helplessness induced by caring for AIDS
patients when no medicines are available. Here the schema is not built on a matter of
contagion or moral condemnation but rather on avoiding a sense of helplessness and the
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prospect of death. In this case, ensuring access to antiretroviral drugs would be the only way
of restoring hope (Desclaux, 2005).
Lastly, research in Burkina Faso, has shown that economic challenges are one of the
underlying rationales of discrimination as families who find themselves in dire straits quickly
arrive at the limits of the “obligation of solidarity” (Desclaux, 2005). Specifically, some
modest families are faced with the social dilemma of having to choose between putting a
family member living with HIV on a further course of treatment, in the knowledge that there
is no cure, or abandon him to his fate so as to have some hope of feeding the other members
of the family.
Again on the economic rationale, employment may be denied to a person living with HIV
with the premise that a person living with HIV may be less productive as he/she will have
frequent illnesses, and that he/she will end up costing the company too much.
In addition to the above, the schemata could become even more complex when they are
analyzed at different levels (family/community, institutional, national). An example of a
national level schema is the travel ban that some countries (until recently the USA, China,
and Namibia) have imposed on people living with HIV. In this case, the rationale for the
legislation has been mainly to “protect public health”. As of today, UNAIDS still counts 51
countries/territories that continue to impose some form of restriction on the entry, stay and
residence of people living with HIV based on their HIV status; and 22 countries even deport
individuals once their HIV-positive status is discovered.
Another worth noting and rather common situation is people living with HIV practicing selfdiscrimination. The persons would be isolating themselves and would be retracting from the
society because of perceived or anticipated discrimination from family and community
members. In this case there are strong empirical expectations involved.
With regard to scripts, a common one is when a wife discloses her HIV status to her
husband. The husband then accuses her of unfaithfulness and blames her for bringing the
disease in the household. He beats her and then chases her away from the house together
with her children. The husband passes away after awhile. Still the woman’s in-laws continue
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to ostracize her and often verbally and physically abuse her. The woman ends up living a life
of social exclusion and extreme poverty.
2.4 Is the act of discriminating against people living with HIV a social norm in a given
community?
An analysis of the theories underpinning the act of discriminating will assist programme
managers understand what makes people obey the norm, and under which condition they
will abandon the norm. In this effort, data on agents’ mutual expectations must be
gathered. Quantitative and qualitative research could be conducted in the communities
where the behaviour of discriminating will be addressed. Through in-depth interview,
data on people’s practice will be gathered. Specific questions will test the existence (or
non existence) of a social norm.
These questions would be, for example:
a) “Do most people in your community avoid talking to or avoid interacting with
people who are living with HIV?” (Testing the existence of empirical expectations);
b) “Do you think that other people in your community think that you should avoid
talking to or avoid interacting with people who are living with HIV?” (Testing the
existence of normative expectations); and
c) “If someone in your community talks or interacts with someone who is living with
HIV, will he/she be punished”, and “if yes, how”?
If the data finds that there are some mutual normative expectations in the discriminating
behaviours, then we could conclude that discriminating against HIV positive people is a
social norm in that community. If it is a social norm, effective programme interventions
will have to focus on draining the empirical expectations in order to shift the normal
expectations. This means we will have to help community members behave differently
through collective discussions, common pledges and help each member believe that a
sufficient number of their peers is moving along doing things differently.
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2.5 Describing the desired outcomes:
The most important desired outcome will be the introduction of a new social norm:
considering people living with HIV just like any other person with a chronic disease. People
living with HIV should be free to live a normal life just like anybody else. In order to
achieve this, there must be a re-categorization of people living with HIV: the community
will have to understand that people living with HIV are not necessarily promiscuous and have
not necessarily failed to follow some norms. In addition, the interventions could build on the
strong large family ties and strong spirituality in the Burkinabe society to strengthen the
traditional values of caring for one another even in difficult situations.
3. Reviewing the work so far: lessons learned
As part of the national response against the HIV pandemic, national authorities and civil
society in Burkina Faso have implemented different interventions to curb stigma and
discrimination.
A law punishing any act of discrimination towards people living with HIV was introduced in
2008. As of today however, the average Burkinabe is not aware of the existence of the law
nor is aware of its content. In addition, there is no functioning system for law enforcement.
If we compare the situation with Antanas Mockus’s example of regulatory mechanisms, one
could say in this situation that the legal norm against discrimination, the moral norm and the
social norm of discriminating would have to be harmonized through strategic interaction and
communication.
In an effort to raise awareness among the general public and to create a supportive
environment for people living with HIV, a national media campaign involving a few highlevel authorities such as the President and the highest ranked traditional leader was
implemented in the early 2000. While the partnership with Burkinabe leaders is a positive
one, the approach used was mostly directive. The programme had the merit of being very
visible, however it does not seem to have been sufficient to reach a critical mass of people
who have changed their attitude and behaviour. Later on, smaller scale partnerships with
traditional and religious leaders were also fostered.
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Another prevailing strategy is the use of peer-support groups and associations of people
living with HIV for mutual encouragement and support, particularly for reinforcing
adherence to complex treatments. The gatherings also offer precious social and moral upkeep
and help people living with HIV address issues of discrimination as a group. The negative
side of this approach however is that it is mostly an “in-ward” approach that is perhaps not
sufficiently “open to others” who are not HIV positive, thus not tapping into other social
networks for bringing about change.
In general, interventions undertaken to date have been on a small scale, not sufficiently
coordinated, not strategized, seldom evaluated, and mostly ad hoc. Most importantly, these
programmes are not sustained over time and thus fail to achieve meaningful changes in
people’s attitude and actions towards those living with HIV.
4. Moving forward: adopting modified strategies
In light of the theories about social norms and social change, strategies used so far to address
stigma and discrimination would have to be modified to be more effective. New strategies
could include the following:
4.1 Introducing a new social norm: considering people living with HIV just like any other
person with a chronic disease. People living with HIV should be free to live a normal life
just as anybody else. People living with HIV would have to be re-categorized as already
mentioned in paragraph 2.5; PLWA are not necessarily promiscuous and have not
necessarily failed to follow some behavioural norms.
4.2 Addressing some of the schemata through education, social protection, and
strengthening the quality of health care services.
4.3 Adopting a non-directive, more collective approach to stop discriminating behaviours
rather than an individual approach. Fostering a community-led approach rather than an
externally driven one. The community-led approach could be facilitated through
community dialogues that build common knowledge.
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4.4 Aligning regulatory mechanisms: legal, moral and social norms.
4.5 Better publicizing good behaviours, and rewarding good behaviours with visible signs.
Introducing public declaration/pledges for non-discriminating particularly from
influential and respected traditional and religious leaders. Such public pledges could then
be displayed through wearing a pin with a recognizable logo and colours. This could be
particularly useful for health workers for instance.
4.6 Strengthening the understanding of social networks through network analysis (snow ball
approach) and using the identified network to bring about social change:
For instance, two distinct types of networks could be used to diffuse information:
The “grins de thé”: Previous researches in Burkina Faso have identified the “grins de
thé” as nodes for spreading information and “gossip”. “Grins” are regular gathering of
men, usually of the same age groups and socio economic status, to drink some tea under a
tree. They hold general discussions about life.
Religious groups: Spirituality is strong in Burkina Faso, and both Muslim and Christians
regularly attend worship services. Many Burkinabe participate in church-based activities
and have strong networks within church groups. Such networks could be used to diffuse
information.
4.7 And finally, introducing multi-year programs that are sustained over time to allow for
changes in attitudes and behaviours to reach a critical mass of people practicing the new
behavior thus reaching the tipping point towards the social adoption of the new norm.
5. Conclusions:
5.1 stigma and discrimination practices still pervasive
5.2 the schemas are multiple and very diverse
5.3 Need to rethink approach based on evidence (more research) and based on a collective
approach to change social norms. Also rethink approach based on theoretically more solid
strategies and design multi-year programmes that are sustained overtime.
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5.4 The “new” Positive Health, Dignity and Prevention global campaign of people living with
HIV sets higher standards of living and participation of people living with HIV in care for
themselves and would also hopefully contribute to less stigma and discrimination.
Bibliography:

HIV-related Stigma and Discrimination: A Summary of Recent Literature, UNAIDS
2009

A. Desclaux, Stigmatization and Discrimination : What does a Cultural Approach Have
to Offer?, 2008

Fatoumata Ouattara, Marc-Eric Gruénais, Pierre Huygens & Abdoulaye Traoré, Sida,
Stigmatisation et exclusion, Étude anthropologique au Burkina Faso (Bobo-Dioulasso,
Banfora, Niangoloko, Orodara), Agence nationale de recherches sur le Sida, (ANRS), 2004

Moussa Zongo, Le calvaire des veuves séropositives, l’Evénement, 2001
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