and HIV/AIDS in Africa
of issues and responses based on literature review, focus
group discussions and Stigma-AIDS email discussion forum
France, Health & Development Networks
review is based on three approaches aimed at broadening the
participation of key stakeholders in the development of an
operational research agenda on stigma and HIV/AIDS for the
East and Southern African region.
The first was a literature review of published and grey
literature. The second was focus group discussions and key
informant interviews with health care workers, including
doctors, nurses, counsellors and traditional healers, people
living with HIV/AIDS, religious groups and the media.
The majority of focus groups participants and key
informants were from Botswana, Tanzania and South Africa, but
also come from interviews with people from Ghana, Malawi,
Rwanda, Lesotho, Uganda, Zambia, Cameroon and Zimbabwe.
Finally, the third was collecting perspectives by
establishing a time-limited, moderated and structured e-mail
discussion forum called “Stigma-AIDS”.
1230 people took part in the forum with about 85 –
90% coming from the Africa region.
Through this last approach, perspectives on stigma were
collected from many countries including Burundi, Cameroon,
Ethiopia, Eritrea, South Africa, Swaziland, Botswana,
Zimbabwe, Zambia, Tanzania, Ethiopia, Uganda, Malawi, Lesotho,
India, Taiwan and some from Europe and the US.
paper attempts to summarise and present these diverse views in
an objective and informed way.
It also forms the framework for a larger issues paper
that will be developed taking into consideration the outcomes
of the Consultation on Stigma and HIV/AIDS in Africa: setting
the operational research agenda.
the beginning of the AIDS epidemic, HIV/AIDS-related stigma
has been recognised as a problem.
Nevertheless, stigma related to HIV/AIDS has not been
extensively studied by social and behavioural scientists.
A better understanding of the social, cultural and
psychological roots of stigma is needed to inform politicial
and religious leaders, health care providers, people living
with HIV/AIDS and the media.
Research on stigma needs to be action research, so that
the goal of the research is to immediately translate findings
into programmes and policies to reduce stigma.
that stigma is a complex and deep-rooted issue and social
phenonomen, there is unlikely to be a simple solution to
reduce it. However,
while people can live with HIV for many years, they cannot
cope if they have to live with stigma, shame, denial,
rejection and isolation.
This is the reason why there is an urgent need to
understand the causes of HIV/AIDS-related stigma, why people
stigmatise, what types of people stigmatise and what types of
people are stigmatised?
know that stigma is such an issue because many positive people
go to their grave without disclosing, neither to their partner
nor closest friend, even in families where other siblings have
already died of AIDS. We
know it is complex because AIDS counsellors themselves, with
all their knowledge of modes of transmission, all the advice
they give every day about how to tell partners and family, and
how to live positively, die themselves of AIDS without their
own families, friends or colleagues knowing.
We know it is complex because AIDS touches on human
fears of dying and notions of death, with deeply ingrained
moral and cultural beliefs about sex and sexual behaviour.
We know it is complex because it touches on emotions of
shame, shame imposed by the self, and most of all shame
related to the family. Stigma
is complex because we do not consciously internalise .
poses the biggest challenge, not only to effective HIV/AIDS
prevention and care, but for us – to be able to unpick
stigma related to HIV, break it up into manageable parts and
find solutions to reducing it. The task is not easy, but it’s a vital one.
We need to be radical in our thinking and not be afraid
to challenge ideas and programmatic approaches that are firmly
established in the response to HIV – if they are
stigmatising then they are not working.
every interview conducted for this review, people’s first
memory of HIV was associated with fear and denial.
itself was defined as:
because of its relation to sexual intercourse and promiscuity,
most often being associated with particular groups such as sex
words used over and over again include rejection, fear –
being afraid of people and people being afraid of you, shame,
isolation, judgemental, gossip, rumours, feeling threatened,
uncomfortable, socially unacceptable, negative, low
self-esteem, paranoid, abandonment. Interview participants
said that stigma is perpetuated by lack of knowledge and
ignorance and often related HIV/AIDS-stigma with witchcraft.
in one group said:
takes away hope, friends, family, your way of life and your
expectations for the future”
participant in the e-mail forum said:
will follow me, and my brothers and sisters for the rest of
our lives. Sometimes it even accompanies us into death”
and similarities across the region
different countries, there are varied cultural practices,
traditional beliefs and religious beliefs.
Stigma is firmly rooted in these factors and the causes
of stigma can vary from country to country.
However, there are similarities and we should not use
difference as an excuse for non-action.
all countries represented in the focus groups and key
informant interviews, HIV/AIDS-related stigma exists (even in
Uganda where stigma is perceived and reported to be low).
almost all interviews, women were cited as suffering more from
stigma – “they are blamed for the spread of HIV by
their partners and families which is related to notions of
promiscuity. Women suffer because they come out whereas men
hide their status and blame women”.
“If a women is HIV+, she is blamed for infecting
the man. If the man is sick it is seen as an unfortunate stroke of
luck – he is given sympathy and not blamed”.
people interviewed cited a change in levels of stigma as the
AIDS epidemic has progressed – saying that stigma has
lessened as time went on.
are also striking when South Africa, Tanzania and many other
countries in the region are consulted regarding the death of
prominent government figures or politicians. Suspicion and
intrigue has led the general population to think that
political figures had died of AIDS, despite the fact that this
has almost never been verified.
The important point in this instance is not the fact
that these figures, if any were indeed HIV-positive, but that
popular opinion believes they died of AIDS and sees this as
denial and secrecy that perpetuates stigma from a high level.
In this regard, many interviews clearly stated that
political figures should come out openly about being HIV
positive, and that this would make a big difference to
reducing stigma. It
was also acknowledged that disclosing at this level would be
difficult as the higher up a person is, the more they have to
loose if they disclose.
has clearly been set apart from other diseases in many ways,
not least because of the drive for voluntary counselling and
testing that does not exist for other terminal illnesses.
Many participants in interviews and on the e-mail forum
said that people should be made more aware that HIV is just
another fatal disease of which there are many – such as
cancer, malaria and tuberculosis.
many countries, HIV is seen as having a poor face.
It is poor people who get HIV.
common trend is the finding that if treatment was available,
more people would come forward and the stigma would be less.
sentiment that ran throughout many of the interviews was a
disassociation from the group (s) who were the most
stigmatising – so nurses frequently citied religious
leaders, counsellors cited the media - without thinking most
groups “blamed” another group.
This points to the need to acknowledge that all of us
are stigmatising, whether conscious or unconscious.
languages include popular metaphors for AIDS - in Swahili, a
usual expression when speaking about contracting AIDS is
“stepping on an electric fence”.
Each cultural setting clearly has differences in the
origins and first perceptions of HIV, some related to certain
groups, to witchcraft and others related to clothing. For
example, in Tanzania – AIDS was called Juliana (a type of
shirt that came from Uganda – all those who wore the shirts
were thought to have AIDS).
It is only by using qualitative research that we can
capture and understand these rich cultural differences.
with studies on stigma in other parts of the world,
the health care setting was identified as the most frequently
cited context for experiencing stigma by positive people in
Botswana, Tanzania and South Africa, as well as by many
contributors to the e-mail forum.
Many health workers and related service providers
express negative attitudes towards people living with HIV/AIDS
and would demonstrate a preference not to treat them.
existence of stigma in the health care setting poses a serious
threat to HIV/AIDS prevention and care efforts because it
prevents people from:
early care for TB and other HIV-related opportunistic
treatment for other sexually transmitted infections;
counselling/testing or returning for results;
and receiving good quality care and treatment;
to treatment, for example for mother-to-child transmission.
was said by one participant on the e-mail forum, “health
care providers have a crucial role to play in reducing stigma
in society at large, since their behaviour with patients is
keenly watched and used to justify stigma by others because
they are professionals – they ought to know better”.
The response of health workers will also deeply influence a
newly diagnosed HIV-positive person as this is likely to be
the first point of contact as well as the first experience of
being HIV positive. If
stigma is rife in this setting, in addition to perpetuating
stigmatising attitudes and beliefs in the population at large,
it will impact on the persons’s ability to cope with their
positive status and influence their ability to share their
diagnosis. Within the health care setting, nurses were
frequently cited as being the worst perpetrators of stigma  .
One group of people living with HIV/AIDS in Tanzania said “they
are the worst because they don’t attend you and won’t
This was qualified in most instances, however, by the
acknowledgement that doctors never have to touch people with
HIV-related conditions – they simply look at their charts
and pass responsibility to the nurses.
This could explain, in part, the experience of greater
association of stigma with nurses rather than doctors.
cited for stigma in the health care setting include:
and lack of knowledge and skills;
judgemental reaction (not related to being a health care
fear about not being able to handle a patient’s emotional
reaction to a positive diagnosis;
reminded daily of one’s own vulnerability to HIV infection;
resulting from poor counselling skills, lack of time or lack
or treatment options;
to reduce stigma need to be aimed at four levels – the care
provider, the client, hospital management and the
the level of the care provider, promoting openness about HIV
so as to normalise it, but at the same time maintaining
confidentiality at the individual level.
the level of the client or patient, discussing at an early
stage in the counselling process the options for sharing and
disclosure (shared confidentiality), whenever a client is
ready and involving the significant other.
Also supporting HIV support groups.
the level of hospital management, seeking to normalise HIV by
giving adequate support to counselling services for patients
but also for staff. Encouraging
all health staff to know their serostatus.
the level of the community and family, normalising HIV by
supporting ongoing channels for dialogue and support, and
engaging the community in care and prevention activities
promising model to address stigma in the health care setting
has been developed by Sharan and the Population Council in
India. Their operational research project aims to provide the
‘gold standard’ in caring for people with HIV/AIDS –
so-called PLWA-friendly hospitals.
A series of PLWA-friendly checklists have been
developed for use at the institutional, staff and patient
levels within the hospital.
The checklists focus on areas such as access to
services, testing and confidentiality, infection control and
quality of care. Together with clear outcome indicators, these
checklists provide a way of monitoring the care received by
people living with HIV/AIDS and ensuring that stigma is
approach can also be adapted to the home care setting.
Home-based care providers could have a checklist for
home visits to assess how the patient is being treated at home
– they could ask the patient, the family and rely on his/her
in the regional context of East and Southern Africa,
traditional healers are an important category of health care
providers. As one
contributor to the e-mail forum said “most people in
African communities walk that fine line between Western and
traditional culture and it is just as important to recognise
the influence of traditional healers as well as other health
care providers in hospitals and homes.
Their ways of dealing with and treating HIV often
brings communities together instead of using their influence
to ostracise those living with HIV/AIDS”
with traditional healers from Zambia and Uganda emphasised
that traditional healers are primarily hope providers.
One informant said “because traditional healers
believe there is hope, the expression on their faces, as well
as their words, give hope to patients”. For medical
doctors this is difficult because they believe there is no
hope, no cure. Traditional
healers have plenty of time with the patient, taking an
holistic view, which helps patients understand and deal with
self-stigma. However, there are also practices which may be stigmatising,
such as consultation in groups, where status is diagnosed or
revealed with others from the community.
counselling and testing (VCT)
the interviews and debate on the e-mail forum, VCT has been
proposed by some as a strategy to reduce stigma, while others
claim that testing perpetuates stigma.
The more familiar debate is why VCT is important and
how it contributes to reducing stigma. Some groups said that
stigma would be lower if more people had been through the
internalising process of testing.
For this reason they suggested that people should be
encouraged to test, especially all those working in the field
more contentious stance about testing increasing stigma needs
further clarification. Participants
in interviews in Tanzania and South Africa suggested that the
real stigma only begins when a person is labelled HIV-positive
– i.e. after being tested.
The alternative proposed was to develop strategies that
encourage everybody to live positively with HIV/AIDS rather
than single out those who have been tested –people in
general should try to live as if they were infected.
views suggest the need to ask the following questions:
is the impact of stigma on VCT: uptake, quality of counselling
is the impact of VCT on stigma?
living with HIV/AIDS
is a powerful and discrediting social label that radically
changes the way individuals view themselves and are viewed as
well as the stigma experienced by people living with HIV/AIDS,
the whole area of self-stigmatisation has been highlighted,
both in the interviews and the through the e-mail discussion
forum, as an issue needing further attention.
after diagnosis is common where an individual internalizes his
or her social stigmatisation and comes to believe that she or
he is truly inferior to others in society.
As a consequence of this belief, the individual
separates him or herself from society and thereby reinforces
his or her own stigmatisation and social exclusion, battling
with feelings of shame, guilt and isolation.
If an HIV-positive person accepts a societal judgment
that he or she has behaved in a morally reprehensible or
sinful fashion, then that individual will believe that he or
she is responsible for the illness.
This belief is at the heart of self-stigmatisation; and
once this belief is established, the vicious cycle of
stigmatisation gains momentum.
intense feelings of guilt inevitably lead to depression and an
accompanying decline in physical health. For this reason,
self-stigmatisation cannot be ignored.
Each individual must face his or her internal battle
with stigma and cut it down at its root.
As one HIV-positive man from Botswana said:
PWAs invite stigma. They
fill themselves with self-pity and think that they cannot be
accepted – it is just their perception.
Since being open about my status I have had many
positive experiences, made many new friends, learned how to
value life and respect values”
as a tool to combat stigma was frequently cited in current
literature, by participants in the interviews and on the
e-mail forum. However,
full and unconditional disclosure for all people living with
HIV/AIDS was cautioned. Rather, varying levels of disclosure were described that
would obviously require different strategies:
first level is disclosure on an intimate level, disclosing to
one’s partner, family or friends.
second is disclosure in order to access social, spiritual or
third is public disclosure, where people with HIV are asked to
give their personal testimonies and discuss publicly the
impact of HIV on their lives.
In order for self-disclosure to work as an effective
tool against both internal and external stigma, HIV-positive
individuals must carefully examine the mental stages through
which they have passed since diagnosis.
Psychological preparedness for disclosure is critical.
Several contributors noted the importance of support
groups in helping individuals prepare for disclosure and to
deal with the feelings of shame and guilt. Once these negative
feelings have diminished, individuals can begin to understand
their HIV-positive diagnosis, and move ahead with their lives.
As this process moves forward, disclosure at different
levels of personal and professional interaction comes as a
natural “next step.” However, stigma should not be looked
at in isolation – we should look at all the possible
barriers to HIV disclosure that include stigma.
This point is an important one to consider as we
address disclosure as a tool for the empowerment of people
living with HIV/AIDS. If
an individual can disclose his or her status in an anonymous
setting, but cannot do so in closer quarters, has self-stigmatisation
actually been reduced, or merely reinforced?
This exact situation has been described during
interviews in South Africa in rural and urban areas.
the community level, even in communities where there is a high
HIV prevalence, it seems common that no one is living openly
with HIV .
At the level of the family, stigma poses one of the greatest
challenges for those living with HIV/AIDS.
After the health care setting, the family was most
often cited in the focus groups and interviews as being the
worst place for stigma in Botswana, South Africa and Tanzania.
It was also cited as the most debilitating and subtle
form of stigma. One group in Tanzania said: “Within the family the
stigma is the worst. There
are quite a few cases [here] where families don’t want to
share food. They give their AIDS relative separate rooms, only leaving
the door open a little. They
just look but won’t sleep near the patient.
Some wash their clothes in the toilet or use a stick to
wash the clothes. Even
after the death of the patient, their clothes are burned and
their mattress. Families
will place the patient next to a toilet and there have been
some cases where they have not fed the patient because of the
resulting diarrahea because they don’t want to have to
handle faeces. Many
patients become depressed as a result of this stigma” . . This
sad story is not unique to Tanzania – interviews from
Botswana and Malawi described a similar experience, adding
that families stigmatise even more because they say that they
are providing new utensils and towels because the person is
special but use it as a way of disguising the fact that they
Interviews in Botswana, Tanzania and the Cameroon described
situations where people disclosed their HIV-positive status to
their family members only 3 – 4 days before they died  .
While in the workplace, a rights-based approach can be
very useful, tackling stigma at the family level and in the
home will require a psychological and social approach.
Research is needed to better understand and design
following are just a few questions that require structured
all HIV-positive people experience self-stigmatisation? If
not, how do people avoid this vicious cycle?
can be done to help people move more quickly through the
stages of realization and toward full and productive lives as
are the effects of HIV-related stigma, including self-stigma,
on the productivity of an HIV-positive individual?
perceived stigma worse than actual stigma and do both require
different approaches in terms of understanding, research and
what degree is disclosure an effective tool in HIV prevention?
Do public testimonials of HIV-positive individuals
influence sustained reductions in risk behaviours among the
are the reasons that HIV-positive people go public with their
the fact that stigma exists on various levels within all of
us, how can we face this reality collectively by developing
strategies for working through stigma, rather than attempting
to abolish it?
people experience different levels of stigma when they are
healthy and living with HIV and when they are sick with AIDS?
(conditions would need to be clearly defined, conditions of
looking healthy and various conditions of sickness)?
is the relationship between stigma and secrecy vs. shared
is the relationship between the greater involvement of people
living with HIV/AIDS (GIPA) strategy, support groups PLHA
associations and stigma?
is the relationship between stigma and risk perception?
is the link between provision of effective
care/treatment/nutrition and stigma or stigma reduction?
was clear from the focus group discussions and the e-mail
forum that that as well as being instrumental in the creation
and reinforcement of the stigma surrounding HIV, great
potential exists within the religious sector to provide care,
comfort, and unique spiritual support to HIV-infected and
of the religious sector to date center around the
ostracization and marginalization of people living with
HIV/AIDS, and the refusal by the clergy to turn inward and
confront their own attitudes toward the epidemic and toward
the social behaviours that are associated with the spread of
HIV. The Church
has not yet comprehensively addressed the ambivalent and often
negative interpretation of sexuality that is common in
religious dogma, and this ambivalence has been transformed
into widespread fear of people with HIV and cruelty towards
them. Yet, even as many religions across Africa continue to
insist that HIV is a well-deserved punishment for sinful
behaviour, religious leaders are finding ways to adapt their
ministries to current social conditions.
congregations are able to effectively serve people with HIV
and AIDS in the future, their efforts will make huge strides
toward reducing stigma against positive people across Africa
in the future. This
sentiment was echoed in the words of numerous contributors.
contributor summarized, “It is [the] wonderful values of
our religions such as love, compassion, unconditional support
and hope that we need to capitalise on. We need to get rid of
the judgmental attitudes that perpetuate stigma”
in interviews and the e-mail forum outlined possible
stigma-reducing interventions that faith communities should
pursue if they are indeed serious about changing the negative
culture surrounding AIDS in the religious sector.
These interventions included the following
Religious leaders must take a public stand in support
of people living with HIV/AIDS.
Religious institutions must support their own responses
to the HIV epidemic, similar to strategies adopted by the
Salvation Army and Catholic AIDS Action .
By creating its own response mechanisms, such as
integrated care packages for people living with HIV/AIDS, the
religious community will institutionalize a positive approach
to HIV/AIDS, thereby encouraging individuals and other
non-sectarian organizations to support and care for people
should introduce faith-based support groups for people with
HIV/AIDS and families affected by the epidemic.
Faith provides a strong pillar of support for people
living with the disease, and people with AIDS have expressed
relief and happiness at being able to find solace and
expression within the folds of their religious communities.
initiatives to provide care and support to people with HIV
should be encouraged within the structure of the religious
faith is often the strongest force that drives individuals to
work in support of people with HIV, and should be valued as
such at the institutional level.
the role that religious leaders play in the second level of
disclosure described above (social, spiritual and health).
Many have the special gift of being able to alleviate
fears about dying, instilling hope and providing compassion
when it is most needed.
group interviews showed that in the eyes of the church, we are
all sinners. In
the Christian church, for example, there is a need to focus on
fundamental values of hope, forgiveness and compassion.
In the Islamic religion, getting HIV is seen as a trial from
God. If you have
been tried by God and repent, you are nearer to God and more
respected in your faith.
Those who have not been tried are further away from God.
The need to emphasise the difference between judging an action
and judging a person was expressed as well as the need to
emphasise that Jesus was a compassionate carer, a healer of
many who never condemned.
many areas that were indicated by participants in the groups
and the e-mail forum, the following research questions were
echoed in the comments of several participants[xliii] 
An important and recurring theme among these diverse ideas is
the notion that faith and religious doctrine must be respected
within the context of any HIV-related intervention.
That notion, in and of itself, requires serious
What are indicators for stigma within a religious
group, and what makes these indicators unique to the religious
What are the differences in stigmatization between
religions, such as Christianity and Islam?
Do we have examples of religious groups where stigma is
minimal or has substantially decreased over the past two
What is the relationship between strict moral teaching
Within the local community experience, how can personal
faith be explored, respected, and affirmed as a fundamental
strength for community response and destigmatization?
What are the characteristics of an integrated care and
prevention approach that allows for conflict resolution and
results in stigma reduction?
Regarding partnerships of the religious sector with
other non-sectarian agencies, how can theological principles
and identity be expressed respectfully, and linked to
practices that are encouraged by the partners (such as
counselling, behaviour change interventions, harm reduction,
family protection, etc.)?
What evidence exists that organizational response can
be accelerated by community participation approaches that
involve people, including leaders, from the religious sector?
Can we compare levels of stigma in different
communities by having one community where religious leaders
talk openly, for example, about condoms and another where they
research is needed both to describe the variety or responses
by organised religion and their evolution over time.
the absence of an effective medical cure for AIDS, education,
information and communication have become a critical component
of what can be done overall, particularly in breaking down
myths, beliefs and practices that fuel the spread of HIV as
well as challenging irrational ideas and behaviours prompted
by HIV/AIDS such as stigma”.
In many countries, the media has succeeded in
associating AIDS with death, with promiscuity and with
specific groups such as sex workers and homosexuals.
Reporting on AIDS continues to be insensitive,
sensational often uses inappropriate victimising language.
IEC messages continue to focus on AIDS as a killer and
instilling fear at large, despite the lessons of the past.
It is not uncommon for TV programmes and photographs to use
images of famine victims describing them as people living with
media also has an important, although often hidden, role to
play in reducing stigma by focusing on messages of hope and
people who are living positively with HIV and AIDS[.
Linking humour to HIV/AIDS, as in the Soul City series, is a
relatively new strategy that could also help to reduce stigma.
Good reporting needs training and the media need to be
involved in HIV/AIDS prevention and care efforts.
One group in Tanzania said “the media need to be
involved as stakeholders [in HIV/AIDS] not just seen as useful
to report news – they have opinions and ideas.
Media should design research, carry out and report on
communication channels such as the Internet and e-mail
discussion forums also provide a unique channel for education,
discussion and debate. As
one contributor to the Stigma-AIDS forum said “I wish
more people living with HIV were able, particularly within the
African continent, to speak openly for themselves.
Nevertheless, I am certain such noble initiatives will
encourage more people to open up about how they perceive
HIV/AIDS, both from an infected and an affected perspective”.
the comments of people on the Stigma-AIDS forum, we have to
recognise that facilitating open discussion in this way is an
intervention in itself – the challenge is how to measure the
impact and modify the approach accordingly.
of the key areas for operational research identified have
does the media perpetuate stigma?
types of media messages and images perpetuate stigma? What
types of media messages and images reduce stigma?
role do mass media have to play in the AIDS information,
communication and education challenge, with special focus on
can the infected and affected people be involved in the
information and communication process to influence the desired
can we promote appropriate HIV language among the media?
targeted and appropriate media campaigns reduce stigma?
what extent does media coverage promote/foster myths about
HIV/AIDS, including inappropriate prevention and care
women, children were cited as particularly vulnerable to
stigma in interviews conducted in Botswana, Tanzania and South
Africa. In schools, children who have a relative living with HIVAIDS
or infected themselves are teased, bullied, threatened and
isolated. In Botswana, stories of children not being allowed
in to day centres until they could prove their HIV-negative
status were described.
In Tanzania, participants described scenes where after
much deliberation, HIV-positive children were allowed into the
school but on the condition that they wore a distinguishing
mark (either a red ribbon or red star on uniforms).
In South Africa, children of HIV parents are considered
a threat by teachers and other parents and are often sent home
for minor sicknesses, teased and bullied.
In Tanzania, donor driven agendas have been highlighted
as perpetuating stigma. Some
donors insist on providing AIDS orphans with new school
uniforms every year which means that AIDS orphans are
This causes stigma related to HIV but also resentment
on the part of foster families, many of whom are too poor to
provide uniforms to their other children.
Despite pleas by NGOs in the field to provide support
to foster families as a whole rather than individual children,
the donors persist
the same way as engaging religious leaders is important, the
support of political leaders is vital. The lack of political
will and commitment to talk about HIV is a significant factor
fueling the stigma surround HIV/AIDS.
If political leaders show no concern for HIV then why
should their people? By discussing HIV openly, sensitively and
rationally, leaders can make a difference.
One network of people living with HIV/AIDS said that
not one national leader has come to visit the organisation
since 1993 – they viewed this an indicator of stigma in
has the impact been on stigma in a country where political
support and personalisation has been pervasive since the
beginning of the epidemic compared to a country where this
support and openness has been lacking?
on the findings of the group discussions and key informant
interviews, developing ways to measure levels of stigma will
be another of our greatest challenges.
This was clearly echoed in the e-mail forum discussions
and recognised as very difficult because stigma is an abstract
and social phenomenon.
are needed to measure stigma and to be able to demonstrate
impact of interventions in reducing it.
Priorities for operational research will need to come
from the perspectives of those being stigmatised and those
Global indicators would be invaluable in comparing
programs cross-nationally and in applying lessons learned in
new settings. However,
we know that the manifestations of stigma vary considerably,
from one context to another.
Globally applicable indicators or blueprint
questionnaires may be difficult to develop.
It may be easier to develop global “dimensions” or
aspects of stigma.
understand prevailing stigma in a specific community, setting
or culture, learning about the practices and beliefs of that
practices that may be perceived as stigmatizing in one culture
might not necessarily be viewed as stigmatizing in another.
This is why qualitative research will provide unique
specifically, participants from the e-mail discussion
forum indicated that research should be participatory action
research (PAR). PAR
provides a "way of creating knowledge that involves
learning from investigation and applying what is learned to
collective problems through social action" . That is, the
people experiencing the problem are directly involved in the
research process; from formulation of the research question,
to methods of inquiry, and to creating social change.