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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

    
 

Stigma and HIV/AIDS in Africa

Review of issues and responses based on literature review, focus group discussions and Stigma-AIDS email discussion forum

Nadine France, Health & Development Networks

Methodology

This 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.   

This 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.

General

Since the beginning of the AIDS epidemic, HIV/AIDS-related stigma has been recognised as a problem[1].  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[2].  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. 

Given 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?

We 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 .

Stigma 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.

Definition

In every interview conducted for this review, people’s first memory of HIV was associated with fear and denial. 

Stigma itself was defined as:

Shameful because of its relation to sexual intercourse and promiscuity, most often being associated with particular groups such as sex workers.  Other 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.

Participants in one group said:

Stigma takes away hope, friends, family, your way of life and your expectations for the future[3]

Another participant in the e-mail forum said:

Stigma will follow me, and my brothers and sisters for the rest of our lives. Sometimes it even accompanies us into death [4]

Characteristics and similarities across the region

In 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.

In 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).

In 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[5].  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[6].

Most people interviewed cited a change in levels of stigma as the AIDS epidemic has progressed – saying that stigma has lessened as time went on. 

Similarities 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.

HIV 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.

In many countries, HIV is seen as having a poor face.  It is poor people who get HIV[7].

Another common trend is the finding that if treatment was available, more people would come forward and the stigma would be less.

A 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.

Many languages include popular metaphors for AIDS - in Swahili, a usual expression when speaking about contracting AIDS is “stepping on an electric fence”[8].  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)[9].  It is only by using qualitative research that we can capture and understand these rich cultural differences.

Health care setting

Consistent with studies on stigma in other parts of the world[10], 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. 

The existence of stigma in the health care setting poses a serious threat to HIV/AIDS prevention and care efforts because it prevents people from:

·         ·         seeking early care for TB and other HIV-related opportunistic infections;

·         ·         seeking treatment for other sexually transmitted infections;

·         ·         seeking counselling/testing or returning for results;

·         ·         accessing and receiving good quality care and treatment;

·         ·         adhering to treatment, for example for mother-to-child transmission.

As 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”[11]. 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 [12][13] [14]. One group of people living with HIV/AIDS in Tanzania said “they are the worst because they don’t attend you and won’t touch you[15]. 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.

Reasons cited for stigma in the health care setting include:

s         s         Attitudes and lack of knowledge and skills;

s         s         Personal judgemental reaction (not related to being a health care worker);

s         s         Fears of contagion;

s         s         Perceived fear about not being able to handle a patient’s emotional reaction to a positive diagnosis;

s         s         Being reminded daily of one’s own vulnerability to HIV infection;

s         s         Helplessness resulting from poor counselling skills, lack of time or lack or treatment options;

s         s         Work overload

Strategies to reduce stigma need to be aimed at four levels – the care provider, the client, hospital management and the community/family.

s         s         At 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.

s         s         At 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. 

s         s         At 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. 

s         s         At 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[16]

One 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 avoided.  This 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 own observations[17].

Finally, 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[18]

Interviews 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[19][20]. 

Voluntary counselling and testing (VCT)

Throughout 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 of HIV/AIDS[21].

The 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.

These views suggest the need to ask the following questions:

s         s         What is the impact of stigma on VCT: uptake, quality of counselling and outcomes?

s         s         What is the impact of VCT on stigma?

People living with HIV/AIDS

Stigma is a powerful and discrediting social label that radically changes the way individuals view themselves and are viewed as persons.

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.

Self-stigmatisation 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[22].  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.

Such 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:

Some 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[23]

Disclosure 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: 

s         s         The first level is disclosure on an intimate level, disclosing to one’s partner, family or friends.

s         s         The second is disclosure in order to access social, spiritual or health care.

s         s         The 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.[24]

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[25][26].

 

At the community level, even in communities where there is a high HIV prevalence, it seems common that no one is living openly with HIV[27] [28].  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 [29]. .  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 are stigmatising[30][31]. 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[32] [33] [34].  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 interventions.  The following are just a few questions that require structured investigation:

s         s         Do all HIV-positive people experience self-stigmatisation? If not, how do people avoid this vicious cycle?

s         s         What can be done to help people move more quickly through the stages of realization and toward full and productive lives as positive people?

s         s         What are the effects of HIV-related stigma, including self-stigma, on the productivity of an HIV-positive individual?

s         s         Is perceived stigma worse than actual stigma and do both require different approaches in terms of understanding, research and interventions?

s         s         To 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 uninfected?

s         s         What are the reasons that HIV-positive people go public with their positive status[35]?

s         s         Given 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?

s         s         Do 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)[36]?

s         s         What is the relationship between stigma and secrecy vs. shared confidentiality?

s         s         What is the relationship between the greater involvement of people living with HIV/AIDS (GIPA) strategy, support groups PLHA associations and stigma?

s         s         What is the relationship between stigma and risk perception?

s         s         What is the link between provision of effective care/treatment/nutrition and stigma or stigma reduction?

Religious sector

It 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 –affected communities.

Failings 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. 

If 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.

As one 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”[37]

Participants 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[38] [39].  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 with HIV.

·         ·         Congregations 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.

·         ·         Individual initiatives to provide care and support to people with HIV should be encouraged within the structure of the religious community.  Personal 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.

·         ·         Recognising 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[40].

The 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[41]. 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[42]. 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.

Of the 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][43] [44] 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 exploration

·         ·         What are indicators for stigma within a religious group, and what makes these indicators unique to the religious group?

·         ·         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 years?

·         ·         What is the relationship between strict moral teaching and stigma?

·         ·         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 do not[45]?

Empirical research is needed both to describe the variety or responses by organised religion and their evolution over time[46].

Communication

In 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[47].  In many countries, the media has succeeded in associating AIDS with death, with promiscuity and with specific groups such as sex workers and homosexuals[48].  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[49]. It is not uncommon for TV programmes and photographs to use images of famine victims describing them as people living with HIV/AIDS[50].    

The 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[[51]. 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 the findings[52]. 

New 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”.  From 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.

Some of the key areas for operational research identified have been:

s         s         How does the media perpetuate stigma?

s         s         What types of media messages and images perpetuate stigma? What types of media messages and images reduce stigma?

s         s         What role do mass media have to play in the AIDS information, communication and education challenge, with special focus on stigma?

s         s         How can the infected and affected people be involved in the information and communication process to influence the desired change?

s         s         How can we promote appropriate HIV language among the media?

s         s         Can targeted and appropriate media campaigns reduce stigma?

s         s         To what extent does media coverage promote/foster myths about HIV/AIDS, including inappropriate prevention and care strategies?

Children

Alongside 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[53].  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)[54].  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[55].  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 immediately identifiable.  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[56]

Political leaders

In 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[57].  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 itself[58]. 

s         s         What 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?

Measurement and indicators

Based 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.

Indicators 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 stigmatising. 

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.

To understand prevailing stigma in a specific community, setting or culture, learning about the practices and beliefs of that context is vital.  Cultural 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 insights.  More 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[59].