Why educate HIV positive people?

HIV positive people need HIV / AIDS education to provide help and support for them, enabling them to understand and to cope with the knowledge that they are infected with HIV. Education for HIV positive people should also help to prevent the onward transmission of HIV.

When receiving a HIV positive test result, many people feel that they have been given a death sentence. HIV / AIDS education and counselling for HIV positive people has several main goals:

To help people to cope with the trauma of a HIV positive test result.
To inform HIV positive people about the nature of HIV and AIDS.
To help them to confront any discrimination they may face as a result of being infected with HIV.
To enable them to lead full and healthy lives.
To enable them, should they wish to, to have an active sexual life without passing the infection on to anyone else.
To ensure that the infection isn't passed on by any other means - the sharing of injecting equipment, for example.

Most people who are HIV positive have acquired the infection from another person, whether sexually or via injecting equipment. Just as people who are not HIV positive must take responsibility for their own protection, so must people who are HIV positive take responsibility for ensuring that they do not pass the virus on to anyone else.

When to educate HIV positive people?

Work with HIV positive people should start ideally as soon as they receive their test results, although unfortunately this is often not the case. People can react to learning that they are HIV positive in many different ways, but counselling is an important part of helping people to deal with the result and informing them about what it means.

A post-test counselling session is a crucial opportunity to have one-to-one contact with a HIV positive person, and should incorporate a measure of education. Having just received a HIV positive test result, however, a person can't be expected to be in the frame of mind where they are most likely to be receptive to information. This initial counselling session, where possible, should be followed up by at least one further session. At this stage support and education are intertwined, and during this first session, the main aims should be to ensure that the person returns for a second session, and that they don't transmit the infection to anyone else during this time.

After this, the person will need continuing education and advice. Health services and doctors form the front line of contact for many people, and often they can refer people to other organisations, often run by HIV positive people for HIV positive people, which can provide longer-term support and information.

How to reach HIV positive people?

A mass media education approach for educating HIV positive people on how to avoid transmitting HIV would not usually be appropriate, as this could also have the effect of demonising them in the eyes of the population as a whole. More targeted methods are better ways of getting information across. Education can come from support or healthcare services used by HIV positive people, and a doctor is often the first point of contact. Given their differing places in society HIV positive people will have differing education needs, and, beyond general health information their needs are quite different.

Peer education works well at addressing these needs, and many educators who work with HIV positive people are themselves HIV positive people. This method of reaching people can be even more effective when educating people in specific risk-groups, such as single mothers or injecting drug users. Peer educators often reach people through the services they access - a HIV positive injecting drug user, for example, might be offered education through a needle-exchange scheme.

What do HIV positive people need to know?

HIV does not discriminate. While some groups have been more affected than others, people across all sectors of society are affected by HIV. This means that some HIV positive people will have little more in common than the fact that they are HIV positive. Beyond their healthcare requirements, they will have very different needs and will need different types of support, services and education. One person who tests HIV+, for example, may need advice on how to cope with discrimination at work, whilst another may need support and help to stop injecting drugs, and yet another advice on how to get a mortgage.

Everyone who is HIV positive needs to know the basic facts about their condition.

They need to know the difference between HIV and AIDS, and to be informed about both. In spite of the HIV / AIDS education which has been done in the past, misconceptions still exist. A HIV positive test result can be very distressing, and many people feel that they have been given a death sentence. People in this situation need to know whether their HIV infection has progressed to AIDS and that being infected with HIV does not necessarily mean that a person has AIDS. It can take many years for people with HIV to develop AIDS.
People need to know what happens next, what tests they will need to have, and what the results mean. Depending on these test results, the person can be told whether they need to take any medication.
They need to know that they may have to change their behaviour. Partaking in the same activities that caused them to become infected could infect another person in the same way. They could also put themselves at risk of becoming infected with additional sexually transmitted infections, which could increase the progression of their HIV infection towards an AIDS diagnosis.
People also need to be informed about the type of lifestyle which could help to keep them healthy. They need to know that their body will require good nutrition, if possible, in order to fight infection. They need to know that smoking, drug and alcohol abuse can weaken the body's immune system, making them more prone to opportunistic infections.
Education needs to focus on how to insist on safer sex. Many HIV positive people around the world, especially women, may not fully be in control of how they express themselves sexually.
Safer sex must be practised with other HIV positive people, too. There's an attitude of 'if we're both HIV positive it doesn't matter' - this isn't the case, as there are different strains of HIV, some of which have become resistant to some of the drugs used to treat AIDS.
They need to know about their rights in society and what to do in the event that they experience harassment or discrimination.
They will also want to know what they can expect from the medical care available in their country, if they will be able to access AIDS medication, and if so, how to go about it. In some countries the health service or medical insurance may provide medications, in other places people may have to attempt to be accepted onto clinical trials as the only way of accessing medicines.

HIV positive people who are informed are better equipped to decide if they will let people know about their HIV status, and better equipped to challenge discrimination and stigmatisation.

Talking to partners and families

This is a very difficult subject and it's one which is going to be different for everyone. It's a matter of choice for individuals how they go about this, and there are many factors involved. Some of these may include - the manner in which they were infected, whether they were infected by a partner, whether they may have infected a partner or partners, when or if to tell children. Sometimes, there may be the possibility that children have been infected by mother-to-child transmission. Ultimately, it is each person's own decision who they are going to tell, and when, but education and counselling can help to resolve these difficult decisions.

The other reason that it can be important for HIV positive people to talk to their partners and families is that they may need support from their families, and perhaps, ultimately, for them to understand what medical care they require and why. In many cases, a HIV positive person's family will be the 'front line' of their emotional support.

In order to prevent the onward transmission of the virus, education with HIV positive people must include discussion of safer sex and methods of safe injecting, if appropriate. HIV positive people need to know that they have an obligation, both moral and legal, to prevent transmitting the virus to another person. Criminal prosecutions have resulted from situations where people who knew they were HIV positive went on to have unprotected sex with others who later became infected.

Education to challenge discriminations

In some countries people who are living with HIV or AIDS don't know about their rights in society. They need to be educated so they are able to challenge the discrimination, stigma and bias that they meet in society. Laws, charities and government organisations can help people to challenge discrimination and to be aware of the organisations that can provide them with the help and support they need to do this.

HIV positive people have an important role to play in educating the rest of the population, and many HIV positive people have provided role-models for other people who have HIV, and made the general public aware of the fact that HIV can affect anyone.

HIV positive people supporting each other

Much of the counselling, education and peer education work which is carried out with HIV positive people is conducted by HIV positive people. Many projects are shaped by HIV positive people themselves, given the insight they have into what it is like to live with HIV / AIDS. A good example of such a service - run by HIV positive people for HIV positive people - is TASO in Uganda.¹

Living in a town of less than 1,000 people and a county of less than 10,000, I did not know how I would deal with living with HIV. Fast forward to today, November 09, 2003. I am still alive, amazingly healthy and a public volunteer educator in my area. I went "public" with my HIV positive status on World AIDS Day 1995, and have since gone out and told my story and what it is like to live with this disease and that it can happen anywhere and to anyone. I have lost so many friends over the past 12-14 years, but I continue to fight for them and for those like myself still living to try and educate and to end the stigma that goes along with HIV/AIDS. Haroldⁱⁱ

Some HIV positive people who use voluntary counselling and education services will themselves go on to become educators.

HIV positive people educating others

In many places, HIV positive people are involved in community education with people who are not HIV positive, giving talks in schools, churches and companies, informing people about the realities of living with HIV. This has multiple functions - it can help to prevent the spread of HIV in a much more effective way than a poster campaign might by showing people the 'real face' of HIV. People can listen and speak to a person from a similar background to themselves, hear how people can become infected from risky behaviours such as they might themselves participate in, and see that HIV is not a distant thing heard about in the media.

I now get to tell my story to Junior High and High School kids In my home town . This gives them the opportunity to meet some one living with AIDS not dying from AIDS. Michaelⁱⁱⁱ

People can tend to have the impression that it is easy to identify someone who is infected with HIV - thinking, for example, that a HIV positive person looks pale, tired and ill. When they see that someone who is infected can appear to be just as healthy as they themselves are, they also see that it is not possible to assume that a potential sexual partner does not have the virus just because they look well.

Another function of this type of education is to prevent the stigmatisation of and discrimination against HIV positive people. The group can see that they are speaking to a 'real' person with feelings, relationships, and emotional needs. When people see that someone with HIV is a person just as they themselves are, they are less likely to discriminate against them than they might if they just had a vague, media-generated of someone who perhaps 'brought it on themselves'.

Over the years, a number of famous people have 'come out' as being HIV positive. Amongst them are Magic Johnson, Rock Hudson, Eazy-E, Derek Jarman, Liberace, and Freddie Mercury. The South African version of Sesame Street now has a HIV+ character.

In the early years of the epidemic, this was a very good thing - it made people more aware that HIV could affect anyone, combated discrimination, and it provided role-models for HIV positive people. Later on, however, other famous people 'came out' as being HIV positive, but emphasised that they had been infected through medical procedures or contaminated blood-products, referring to themselves as the 'innocent victims' of the epidemic. This was extremely unhelpful, as the assumption that there are 'innocent victims' implies that there must be 'guilty victims', and that people from certain risk-groups deserved to become infected with HIV.

Every day around the world, people who are not famous also announce their HIV positive status. In some countries this is a very brave act, as the discrimination they face can result in their deaths, as happened to Gugu Dlamini, a health worker and AIDS activist, made her HIV status public on World AIDS day, and was stoned to death by a mob which included her own neighbours^iv. Many HIV positive people are keen to share their stories, as many do on this website, often telling their stories of how they became infected to warn people who are not HIV positive about the risks they may be running. They also work to give support to other HIV positive people, letting them know they are not alone. Everyone who is HIV positive has their own reasons for wanting or not wanting to let people know about their infection, but each HIV positive person who is open about their HIV status helps a little to address and correct the misunderstandings, fears and prejudice often experienced by people who have HIV.

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