AIDS & Young People | AIDS booklets, schools

The HIV/AIDS Education & Young People Project

This project based at Christ Church College, Canterbury aimed to investigate young people's knowledge and beliefs about HIV and AIDS, their attitudes towards people with HIV and AIDS and the aspects of their behaviour which placed them at risk of infection.

The first phase of the work was a survey in the spring of 1988, of 1,000 young people, fourth, fifth and sixth formers in four secondary schools in the south of England, with the young people completing a carefully constructed anonymous questionnaire. Some of the most interesting results concerned their sexual behaviour, with a surprisingly high percentage claiming to have already had sexual intercourse with a person of the opposite sex.1 As a result of this work the researchers were able to make some important recommendations regarding HIV/AIDS education for young people, including the fact that education on HIV disease must be started before pupils begin to be sexually active, i.e. before the fourth year of secondary school.

The questionnaire had to be extensively discussed beforehand with the schools, who were quite prepared for young people under the age of consent to be asked whether they had already had sexual intercourse. But the researchers were refused permission to include any questions about masturbation or oral sex.

At the end of the questionnaire a space was included in which the young people could write any remaining questions they had about HIV/AIDS. Following the government campaigns it was not expected that this would be widely used, but many young people took the opportunity to say all the other things they wanted to know. What could we do with this extensive information that came directly from young people and could we use it to educate other young people? The answer was that we could through the booklet that became widely known as the "Yellow booklet".

The AIDS & Young People Booklet

The first version of AVERT's AIDS & Young People booklet 1989

The first version of AVERT's AIDS & Young People booklet 1989

The booklet was written by Stephen Clift, one of the researchers and edited by myself during 1989, and it made extensive use of the comments written by the young people who took part in the survey. The answers to the young people’s questions were given in as straightforward and honest a way as possible. The booklet was also designed to be attractive to young people with a bright yellow cover. But what made it really attractive to young people was that it answered the questions that they really had, including such questions as whether having oral sex put you at risk of getting HIV.

The booklet was popular from when it was first printed in October 1989. Over 250,000 copies were distributed in just the first six months and more than 1.6 million were distributed between 1989 and 2000.2 Many were given away, but the majority were sold at a very low cost, because to have given away even more for free would, as with the "AIDS & Childbirth" leaflet have cost far too much for such a small organisation as AVERT.

The booklet was described as "excellent" by the World Health Organisation, who sent a copy to the government of every country as an example of good practice in educating young people about HIV and AIDS.3

The booklet was regularly updated, and although some of the changes were minor, there were to be 12 different editions and reprints between 1989 and when the print version of the booklet was finally discontinued in 2000.4

The early years 1986 - 1988

It is hard now to describe what it was like in those early years. The fear, the uncertainty, the sickness and the deaths. But it also brought together people who had a common aim of overcoming the problems, people whose lives would never otherwise have crossed.

Sometimes there were things that were said that were to stay with me for a very long time. One such example concerned Leo, a gay American, whose bedside I sat next to as he lay in terrible pain dying of AIDS. He said to me:

"If there is one thing that is worse than dying of AIDS, it is watching your partner dying of AIDS, knowing that you were responsible for passing the virus on to him."

If ever there was a motivation for continuing with the HIV prevention work that was it.

The early HIV & AIDS Medical Research

The uncertainty and the lack of knowledge concerning HIV and AIDS, contributed to it being a remarkable time for medical research. The major medical research grants that AVERT provided in 1986, together with some others provided in the next year or two, were generally grants that allowed the researchers to carry out their work for several years.5 However, although the sums were large for AVERT, in several instances being for £30,000 a year or more, they were amazing in how much knowledge was gained.

In 1988 there was a particular focus by AVERT on understanding more about mother to child transmission of HIV. A further grant was given to the City Hospital Edinburgh, to use a new technique called PCR, that required new equipment, but which it was believed could be important in discovering whether new born infants were HIV positive, and not having to wait for eighteen months to find out if they were going to loose their antibodies.

We also provided about £100,000 for the first three years of a major study to take place at the Institute of Child Health.6 The study that was going to be carried out in collaboration with the Royal College of Obstetricians and Gynaecologists was to be a national study collecting information on all HIV positive pregnant women in the UK, as well as collecting information on their children as they were born.

The study was to be lead by Professor Catherine Peckham and I remember the day in 1988 that I first went to see her and we talked about the study. As I left our meeting and walked down the road to the tube, I remember feeling both delighted and astonished that it was being left to such a small charity as AVERT to fund such a major and important study.

The first international conference

The First International Conference on the Global Impact of AIDS 1988

The First International Conference on the Global Impact of AIDS 1988

The first international conference that I went to was in 1988, when I attended in London the First International Conference on the Global Impact of AIDS. It was truly both horrifying and inspiring.

Horrifying because of the deaths and suffering that were expected, and inspirational because of the belief that we could all play a part in alleviating the suffering.

I also learnt so much that I wanted to start going to some of the main AIDS international conferences that were starting to be held each year, although they were generally not in the UK. But clearly if I was going to do this there was going to be an issue about the cost, as I knew from our funding of researchers to attend these meetings, how very expensive they could be.

Spreading the word in 1988 - 1989

When any type of research is funded it is important that the results of that research are made public in order that other people can benefit from the knowledge gained. By early 1989 more than nine major papers had been published in peer reviewed journals as a result of the social and medical research funded by AVERT.7

The research into the effect of pregnancy on women infected with HIV very quickly turned out to be important. A paper giving the initial results that in Edinburgh the HIV positive women were generally remaining well, was presented at the International AIDS Conference in Stockholm in June 1988 where it created enormous interest.8

However, despite the importance of the research projects, at times in 1988 and 1989 the educational work seemed to dominate the work of the charity. In excess of half a million leaflets and booklets were produced and distributed as well as educational reports, and we also developed the teaching pack "Working with Young People".9

Working with Young People

Although we had produced the "AIDS and Young People" booklet, we knew that in addition there needed to be really effective AIDS education in schools. We knew that it was not sufficient for young people to be provided with information, they also needed to be helped to develop the skills needed to translate this information into effective action which would protect their health and the health of other people.

The second phase of the HIV/AIDS Education & Young People project involved documenting the progress made in the provision of school based education on AIDS for young people, and identifying areas where further resources and training were needed.10 It was found that, amongst other things, most schools were introducing education on HIV/AIDS too late, and over a third of schools did not have a teacher responsible for coordinating HIV/AIDS education.11

However, it is not only in schools that young people need to be offered a chance to discuss how AIDS affects their lives. A great many young people were meeting in a variety of non school environments such as youth clubs, drop-in centres for young people and youth and community projects. Many of the adults working with young people in these environments had a willingness to help young people understand how AIDS affected their lives.

So in 1988 we started a project at Bristol Polytechnic to develop the teaching pack "AIDS – Working with Young People" which used and promoted a participatory style of health education, and which was published by AVERT in 1990.12 13 Together with a background text the pack involved using exercises, group work, open discussion techniques, games and role plays, to help young people clarify what they already knew and felt about HIV and AIDS, and to consider the consequences of this information in their relationships with other people.14 Widely disseminated the pack was used in many different countries and with many different groups of young people.15 When we could we sold the pack, but when we couldn't and the pack was much needed we gave it anyway for free, such as when we sent a dozen copies to South Africa for use by community organisations working in townships.16

As it was so successful a second version was later developed for use in schools.17 The Norwegian government so liked it that they translated it into Norwegian so that they could use it in their schools as an official government publication, and they paid us royalties for doing so.18 The illustrations were done by Tamsin Wilton, and were not only responsible for considerable education, but also at times considerable amusement, with Tamsin saying that:19

"They [the illustrations] provoked much mirth over the photocopier at the University"

When we were piloting the teaching pack, the issue arose of how support needed on occasions to be provided for the youth workers. As one such worker explained, there can be some traumatic occurrence such as:20

"A young woman asks, in front of the whole group, if it is possible to 'get AIDS from someone who is sexually abusing you?', and then turns white when they realise it is possible, highly unlikely but possible. Having left the youth club late, after contacting parents etc etc, the worker who lives on his/her own is very distressed"

The third and final phase of the HIV/AIDS Education & Young People project at Christ Church College, Canterbury was completed in 1992. The result was a comprehensive guide to HIV/AIDS education in secondary schools for classroom teachers, health education co-ordinators, and others concerned with the teaching of AIDS in secondary schools.21 The Times Educational Supplement said about this book:22

"This book is a must for all secondary schools … and anyone else with an interest in seeing that our young people get the best education about HIV/AIDS that we can give them."

AIDS Related Dementia

After the success of the "AIDS & Childbirth", and "AIDS & Young People" booklets, we decided to produce some booklets on the medical aspects of HIV disease. These booklets would primarily be for HIV positive people but we also hoped that they would be helpful for health professionals and carers.23

AIDS Related Dementia booklet 1990

AIDS Related Dementia booklet 1990

We did at the time write to some pharmaceutical companies asking for help with the production costs of the booklets. They weren’t prepared to help, but we did in any case then decide that AVERT wouldn’t accept money from any company, or indeed individual, where accepting the money might affect AVERT’s reputation and/or make us appear less independent than we actually were.24

The first booklet was, rather surprisingly looking back on it, on "AIDS related Dementia", a subject of great concern to people living with HIV. As with all the medical booklets I had to find a doctor willing to write the booklet, and I then usually edited it so that people with limited medical knowledge could understand it. Written by Dr Agnes Kocsis of St. Mary's hospital, the "AIDS Related Dementia" booklet was first printed in May 1989.25

A Major Gift

As we got more and more involved in AIDS work, Peter and I felt that we wanted to concentrate our charitable efforts on AIDS, and:

we therefore decided in 1989 to give the whole of the Bucklebury Trust to AVERT, amounting to some three million pounds.

We knew when we made the gift, that for tax reasons we would not be able to be paid if we worked for AVERT, but we were prepared to remain as volunteers.

The Bucklebury Trust gift did not mean that AVERT could stop fundraising, because the money was to be kept as an endowment with the income available to be used by the charity. It would provide AVERT with financial stability and it would mean that we could fund projects that it would be otherwise be extremely difficult to fund such as work concerned with prostitutes and prisoners.26

1990: Projects, publications and a conference

HIV Infection amongst prisoners

It was not just medical research, but also social research that AVERT was involved with, gaining a better understanding of people’s behaviour and circumstances and how this might or might not put them at risk of HIV infection. Prisons and prisoners were a regular topic of conversation and in 1989 we funded a small study looking at injecting drug use amongst prison inmates in Saughton Prison in Scotland.27

However when it came to prisons in England we were always told that the Home Office would not allow any researchers to go into prisons. In February 1989 I attended the third conference on the "Social Aspects of AIDS" and I was on a panel with other funding bodies, and yet again the subject of prisons came up.

"Well if you can’t interview people in prison why don’t you interview people who have just come out of prison?"

was my response to yet another researcher talking about a lack of Home Office consent.

The following day I got a phone call from a researcher, Kate Dolan, and this led to AVERT in 1989 funding a study to investigate the risk of HIV infection in prisons in England.28 Four hundred and fifty ex-prisoners throughout England were interviewed, and were asked about their behaviour before, during and after imprisonment.

An HIV prevalence rate of 10 per cent was found for the drug injectors in the study, and it was also found that there were high levels of drug use in prison, and high levels of the sharing of injecting equipment. The project report received considerable attention in the media, in Parliament, and amongst practioners and researchers, and in 1992 a major conference was held on the subject of "Prisons, HIV and AIDS".29 30 There were also a number of papers published in such journals as the BMJ and AIDS Care.31

Women talking about AIDS, and other booklets

Tamsin Wilton 1952 - 2006

Tamsin Wilton 1952 - 2006

In 1990 we produced the first edition of our "Women Talking about AIDS booklet". At the time almost all of those who publicly talked about being HIV positive were men, and almost the only time that women were discussed in relation to HIV was regarding pregnancy. I wanted to change that, and with the help of the late Tamsin Wilton, who was known for her writing on feminist issues, we set about contacting women who were prepared to tell us their stories of how HIV/AIDS had affected them.

In the introduction to the booklet we explained that AIDS had become the leading cause of death for women aged between 20 and 40 living in cities of Western Europe, the United States, and sub-Saharan Africa and to some people in the UK, who perceived AIDS as a disease that still only affected gay men, this was an astonishing statistic.32

A particularly moving account in the booklet was "Ruth's poem". Widely distributed at the time, it was a poem written by an HIV positive woman about the difficulty of talking to her child about HIV and taking the antiretroviral drug AZT, and it began as follows:

  • "Here I am, a few years on
  • It was hard enough explaining where Daddy has gone
  • She knows there's something wrong with me
  • How can I explain about HIV?
  • I see the sadness, the fear in her eyes
  • Each time I have to be hospitalised,
  • And I see the way she looks at me
  • Each time I take my AZT"

Another booklet produced initially in 1990 was one on the "Medical Treatment of HIV disease". Initially written by Dr Susie Forster at St. Mary’s Hospital Paddington, the booklet was to quickly go through a number of different editions as there began to be rapid changes in treatment.33 We also regularly had to change authors as doctors became too busy to write, or they no longer had sufficient up to date information themselves. Between 1990 and 1996 we printed and distributed nearly 90,000 copies of the booklet.34

The San Francisco Conference

Information handed out by ACT UP at the 1990 San Francisco AIDS conference

Information handed out by ACT UP at the 1990 San Francisco AIDS conference

Since the start of AVERT we had funded many medical people to attend conferences, but I began to realise how much people learnt, and how much of it could be understood by a lay person with limited medical knowledge. Major AIDS conferences were being held every year as new information about AIDS was being discovered so quickly, and so I decided to attend the San Francisco conference in 1990.

There were a few practicalities, such as who was to look after our children, but the ever supportive Pete volunteered to be the one to stay at home whilst I went to the conference. This is perhaps the place to say that without Pete, not only would AVERT never have started, but it would not have achieved even a fraction of what it has, if he had not been there, often behind the scenes, supporting me as well as often providing practical help and advice.

So I went to the conference and the amount I learnt, and the atmosphere was truly amazing. There was also a plan to have a march, a peaceful march of thousands of people to protest that not enough was being done by the authorities, both in terms of funding for research and support for those living with HIV. But the authorities had vetoed the march, fearing it would turn violent, and so they banned it, and the San Francisco police were out in force, many on horseback.

A badge encouraging people to see the AIDS quilt

A badge encouraging people to see the AIDS quilt

So it was the end of the conference and the final session, and the speakers on the platform said they were going to march, and they invited the audience to march with them. As the conference speakers turned and walked out of the hall, almost everyone there, including myself went with them. It was scary confronting the police on horseback, but as we reached the police lines they parted and we walked through and held our march.35 36

It was also at the San Francisco conference that I saw some of the panels from the AIDS quilt for the first time. I was to wear the badge on a number of occasions afterwards because, at that stage of the epidemic, when you saw the panels you really did understand.

References

  1. The HIV/AIDS Education & Young People Project A Summary of Findings from Phase 1
  2. AVERT Report and Accounts 1990
  3. The Best Hope Yet AVERT leaflet circa 1990
  4. Publications printed by AVERT 1989-2000
  5. Major Research Project Grants 1986 - 1988
  6. Letter to Professor Peckham 5th December 1988
  7. AVERT Annual Report & Accounts Year Ended April 1989
  8. AVERT Annual Report & Accounts Year Ended April 1989
  9. Childright June 1990
  10. A survey of AIDS education in Secondary Schools, David Stears & Stephen Clift, 1990
  11. Findings from a survey of AIDS education in Secondary Schools, 1991
  12. Letter from Annabel Kanabus to Peter Aggleton 13th July 1988
  13. AVERTing the spread of AIDS 1990
  14. AVERT Young People & AIDS Project 1988
  15. AVERT Young People and AIDS Project Evaluation 1990
  16. AVERT Director's Report December 1998
  17. AIDS: Working WIth Young People A Resource for use with Young People in Secondary Schools, Colleges and Community and Youth Groups
  18. AVERT Trustees Meeting 29th April 1992
  19. Letter from Tamsin Wilton to Annabel Kanabus 19th April 1993
  20. Letter to Annabel Kanabus 24th April 1993
  21. AIDS the Secondary Scene 1992
  22. Times Educational Supplement 18th September 1992
  23. Letter to Bristol Myers Squibb 24th May 1990
  24. Letter to Bristol Myers Squibb 24th May 1990
  25. Quote from Cameron Lindsay Advertising 4th May 1989
  26. AVERT Annual Report & Accounts Year Ended April 1990
  27. Stephen Dye, Chris Isaacs, Intravenous drug misuse among prison inmates: implications for spread of HIV, BMJ 22 June 1991
  28. Letter from Annabel Kanabus to Gerry Stimson 17th July 1989
  29. The Centre for Research on Drugs and Health Behaviour Annual Report 1991
  30. AVERT Trustees Meeting 29th April 1992
  31. Papers published as a result of projects funded by AVERT, AVERT Accounts 5th April 1989
  32. Women Talking about AIDS October 1990
  33. Letter to Dr Susie Forster 6th April 1990
  34. Publications printed by AVERT 1989-2000
  35. Conference Bulletin Sixth International Conference on AIDS June 23rd 1990
  36. Los Angeles Times June 20th 1990

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