| AIDS prevention through health promotion: Facing sensitive issues |
|PART 3 Increasing the credibility of the message: peers and patients as health promoters|
Part 2 illustrated the difficulty of making allowance for emotional reactions to AIDS in developing health promotional materials. This section examines one approach to solving many of the problems-the use of peers and patients for health promotion against AIDS.
Roger Staub describes a campaign to reduce high-risk behaviour among homosexuals in Switzerland, in which the chief protagonists were self-proclaimed homosexuals. The campaign led to the development of promotional material-booklets, posters-and a type of condom that met the needs of the target group.
Elizabeth Ngugi and Francis Plummer describe a project in Nairobi, Kenya, that brought together prostitutes to learn the facts about AIDS. The most knowledgeable were then recruited to educate others. One aim of the project was to encourage a large number of prostitutes to insist on condoms, so that clients could not refuse to use them.
John David Dupree and Stephen Beck describe how promotional projects are now using people who are HIV-infected, including those with AIDS, as educators. The physical presence of such people and their comments make educational sessions both more human and more effective. While most of the work is currently being done in the United States of America, the technique is also being tried in Sierra Leone, Uganda, and the Caribbean area.
These papers support the argument that in health promotion programmes on very personal issues, such as sexual behaviour, the person designing and delivering the messages and materials must understand the attitudes of the group being addressed. In terms of understanding and sensitivity, people who belong to the group itself may often be the best health promoters.
If the name Switzerland evokes for you images of mountains, cows, yodelling, and chocolate you would not be exactly wrong, but you would miss a large part of Swiss reality. You would be right in thinking of Switzerland as conservative. However, there is a vivid contrast between, on the one hand, the Switzerland of tourist advertising and conservative politics, and on the other the country with one of Europe's highest per capita AIDS rates, an enormous drug problem, and a government with an extremely liberal approach to AIDS.
By March 1991, there were 1778 reported cases of AIDS in Switzerland. The rate of increase in the number of cases in Switzerland is similar to that in the United States of America and Europe as a whole. Switzerland, however, together with France, has the highest per capita rate of AIDS cases in Europe. The rate of HIV infection among male homosexuals is estimated to be between 10% and 20%.
The Swiss AIDS Foundation, established in June 1985 by all the Swiss gay organizations, has played an important role in the initiation of action to prevent HIV infection. Its intention from the start was to combat AIDS in all population groups rather than just among gays. It has become the national umbrella organization for gay groups, drug users, prostitutes, people with haemophilia and others interested in combating AIDS, as well as for the many local AIDS organizations in all Swiss cities.
The Hot Rubber
By the end of 1984, AIDS and the rumours about it began to cause great alarm, above all in the homosexual community. Certain groups in this community wanted to take swift preventive measures. They began to talk to other homosexuals about condoms, since it was already known that anal intercourse was a major mode of transmission of HIV. Homosexuals had previously perceived no need to use condoms.
The first thing the groups did was to distribute a simple booklet on safer sex, which pointed out the dangers of penetration without protection. To help gays make their choice in what was to them a new area, this advice was accompanied by an advertisement for a well-known brand of condom. The meeting between these two worlds was effected through exchange; the manufacturer paid for the advertisement, not in cash but in condoms, thus enabling 5000 condoms to be distributed with the booklet.
Gays were not very keen on the idea of using condoms. They felt a sort of repugnance for them, having, they thought, consigned them permanently to oblivion. But even though this first experiment was not a great success, it did show the way ahead; it would be useless to try to exploit fear or to ask people to abandon an established practice. The change called for must appear simply as an adaptation, so that it would be widely accepted.
It was thus decided to direct efforts towards a publicity campaign aimed at making the condom familiar and even smart and fashionable. Gays in the advertising profession joined forces with the initial group to help with this campaign. They recommended that information should be supplemented by a marketing campaign based on solid realities. That would mean having the best product, the best design, and as many easily accessible sales outlets as possible. As a back-up to all this there had to be continuous publicity designed to reach all segments of the homosexual population.
Finding the right product required no more than a little common sense. What professional prostitutes used with success could be just as useful for others. So the product existed, but it was of a rather clinical whiteness (Fig. 1). A number of tests had to be conducted to develop a suitable marketing approach. The first attempt failed because the homosexual population did not accept it, but the second achieved very wide acceptance; it had an attractive design and packaging, which did not lend themselves to too many connotative interpretations (Fig. 2). An English name was chosen to cope with the problem of Swiss multilingualism and to appeal to the cosmopolitan attitudes of gays; a trademark was chosen and a distributing firm set up-the Hot Rubber Company, owned by the Swiss AIDS Foundation. In November 1985 the Hot Rubber Company began selling Hot Rubbers in their definitive form at the price of one Swiss franc for two. The entire profits of the company were reinvested in the prevention campaign. Although those who tested the product during its development had not been impressed, when they tried it in its final version they found it finer and safer and the level of sensation high. In a word, they were won over; the Hot Rubber was made for them.
The next step was to bring the product to the people concerned. Bars and saunas, meeting-points for gays, were obvious distribution points. The first stage was to persuade the managers and owners to agree to sell Hot Rubbers in their establishments. After more than two years of effort it is now possible in certain bars to order "a beer with", and be served beer with two condoms. Some saunas make them available free of charge.
Constant efforts are exerted on the publicity front. Every month a new poster comes out, intended for bars and saunas. The regular renewals, adapted to the season of the year and sometimes very amusing, facilitate a wider and more personalized identification with and acceptance of the message and also provide a topic of conversation among the gays. Examples of the many posters produced in the last three years are shown in Fig. 3.
Effects of the campaign
In addition to observations of the reactions of the people concerned, some spot evaluations were carried out. A survey conducted in gay circles in Bern after one year of campaigning asked the question, "What is a Hot Rubber?"; 90% of those polled answered "a condom" or "the gay condom".
The trend of sales figures also speaks for itself (Fig. 4).
The product came on to the market in November 1985. In 1986, 125000 condoms were sold. The 1987 sales stabilized at around 300000. This levelling-off of sales may be accounted for by the fact that in the same year the national AIDS information and prevention campaign was getting under way. Major supermarket chains then began to sell products comparable in price and quality with the Hot Rubber. It was at last possible to purchase condoms anonymously, like milk or chocolate.
In summer 1987, the Lausanne Institute for Social and Preventive Medicine, on behalf of the Swiss Federal Office of Public Health, conducted a scientific survey of behavioural changes among homosexuals. Eight hundred questionnaires and 50 personal interviews were evaluated. Most of those questioned were promiscuous homosexuals, and the survey, although not truly representative, can be considered indicative of the real situation.
More than 50% of those questioned lived alone, 25% lived with a partner, and the remaining 20% considered themselves bisexual or were living with a woman.
Some 50% claimed not to have had anal intercourse in the three months preceding the survey; 30% said that they always used condoms during anal intercourse, 20% that they did not. Concerning the last group, it was not determined whether or not the contacts involved steady partners.
Eighty-five percent claimed to have changed their sexual behaviour; 75% said that they bought condoms and 66% stated that they consistently observed the safer sex rules.
On the basis of these data we may assume that one out of five homosexuals continues to be at risk. It is important to note that knowing a person with AIDS was associated with positive behaviour change, but it was not the only factor. We also found that men with many partners, independent of whether they knew anyone with AIDS, adopted safer sex practices more rapidly than other men at risk. It seems that all groups are familiar with the prevention message and appear to follow its rules. In saunas, unsafe sex is rarely practiced. in public toilets and parks it is more frequent.
Three problem groups remain:
• Bisexuals often do not think of themselves as homosexuals, and consider that a message addressed to homosexuals does not affect them. They were reached more effectively by the "STOP AIDS" campaigns aimed at the general public.
• Adolescent homosexuals, as they make their first tentative steps into the subculture, are too preoccupied to pay much attention to messages about preventing AIDS.
• Older homosexuals who do not easily find partners are more inclined to dismiss the warning "if it's with me it's with a rubber".
It appears that many gays who find difficulty accepting their homosexuality have problems in changing their sexual behaviour. Prevention efforts should therefore include improving the image of homosexuality and the climate within the gay community. We intend to initiate pilot projects towards this end, specifically targeted at these groups, particularly adolescents and older homosexuals.
The use of the existing structures of an established community-specifically bars and saunas-has certainly been conducive to individual acceptance of responsibility. Thus, instead of being panicked into deserting such places, the gay community has been given an opportunity to change its behaviour. Last but not least, it was self-proclaimed gays who took responsibility for informing their community, and this certainly contributed to the fact that the instructions on safer sex were accepted as preventive and not repressive.
Clearly the campaign has to continue, the object being to increase to 100% within a short time the percentage of condom users among homosexuals in Switzerland who practice anal intercourse. It should, however, be stressed that the Hot Rubber campaign is only part of the preventive work being carried out among that population. It is just one of the Swiss programmes being conducted under the slogan "STOP AIDS".
Elizabeth Ngugi and Francis Plummer
Prostitutes are usually hard to reach. In Kenya, our multidisciplinary health team walked through mud, rain, and hot sun in an effort to meet these women where they live and work and to establish a rapport with them based on mutual trust and confidence.
Before the team started working with the prostitutes towards better health, it was important for the members to go through a "self-awareness" exercise. This enabled them to shed their biases and myths and close the gap between themselves and the prostitutes. Members of the health team asked such questions as:
• How do you manage to work with prostitutes?
• What do you say to them?
• Do you actually sit in the same room with them?
• Aren't you afraid of them?
This calls for an analysis of feelings and attitudes towards prostitutes and prostitution, in order to see the situation without imposing value judgements. Only then can the health worker enter into a useful relationship with the prostitutes that helps them to learn.
The initial contact
How did we find the prostitutes? It is not easy to know who is a prostitute where prostitution is illegal, so we looked at the register of the Skin and Special Treatment Clinic, to which the majority of persons suffering from sexually transmitted diseases are referred. It showed that most of the women and their contacts with such diseases resided in Pumwani. Accordingly we made that area the operational target, following the principle of taking services to where the people concerned live and work. We made brief visits to the homes of the women, introducing ourselves as health personnel interested in working with them to reduce the prevalence of sexually transmitted diseases. We approached them as we would any other group of women. We did not call them prostitutes. They told us what they were.
We believe that it was because they understood that we were going to work with them, and help them learn how best to reduce the sickness due to sexually transmitted diseases, and that they were going to be active in the process rather than being told what to do or how to behave, that as many as 300 came to the first baraza (public meeting). Once we had got to know each other they brought us a wealth of practical knowledge. The fact that they had been accepted as human beings needing support was a tremendous source of motivation for them.
The evolving programme
During the baraza, the prostitutes told us what their needs were in relation to the control and prevention of sexually transmitted diseases. There had been no reported cases of AIDS in Kenya at that time. We explained to them how HIV infection is transmitted and what its effects are. We told them how infection could be prevented and invited them to register at a new clinic established specifically to serve them, to distribute condoms, and to provide counselling, diagnosis, and treatment as well as follow up.
The women showed enthusiasm for protecting their own health, and elected a leader and a committee to represent the three villages in which they lived. We trained the committee members in community mobilization and basic communication skills in order to promote condom use. They acted as informal health educators for the rest. We told them that HIV detection and surveillance activities were to commence and invited all the women to take part. The leader was given condoms to distribute to those whose stock ran out between clinic sessions.
The village health committee met the health team every two months, and barazas took place every six months. At one of them, attended by about 300 women, we told them that our studies showed that some of them were infected with HIV or with other sexually transmitted diseases. We explained that those who were infected were likely to transmit the infection to their clients, and that those not infected were at risk of becoming infected. The best thing they could do, we told them, was to give up prostitution; the next best was to insist that their clients used condoms.
We used several educational methods. One was a questionnaire testing the women's knowledge of AIDS, of their ability to prevent it, and of how they could teach others to avoid becoming infected. About 250 women completed this questionnaire. The ten giving the best answers were invited to address the other women at the next baraza (see Box). They shared with them their knowledge and impressed upon them the nature and consequences of infection with HIV.
Another approach was to use sketches and role-plays reinforcing earlier messages, performed by members of the village committee. A song was also sung by members of the village health committee at a baraza.
In addition, group and individual counselling enabled the women to discuss with us their problems and how best to solve them. It emerged during counselling that most of the women wished to change their life-style and give up prostitution. They asked for a rehabilitation programme to train them for other suitable work, as a starting-point for a new life.
The result of these joint efforts was a dramatic increase in condom use. At the beginning, 8% of the women occasionally insisted that their clients use condoms. After a year, more than 50% were making their clients use condoms all the time and a further 40% did so occasionally, with a mean of 72% by mid-July 1988. A small number of women also informed us that they had given up prostitution. These changes, occurring after only a modest educational input, are remarkable since condoms are not readily accepted as a method of contraception in Africa. The outcome of all this was a threefold lower rate of HIV seroconversion among the women insisting on condom use, than among those not insisting on such use.
The ten best replies to the question "How would you teach others to prevent the spread of AIDS?" were as follows:
1. I would teach a group of men and women:
(a) that they should see a doctor every two months to be examined for sexually transmitted disease;
(b) that men should use a condom during casual sexual intercourse;
(c) that all should maintain good personal hygiene by washing with warm water and soap after every sexual encounter;
(d) that all should wash any towels used to clean their genitalia after intercourse.
2. In order to prevent sexually transmitted diseases:
(a) women should clean the vulva with warm water after sexual intercourse;
(b) they should attend a clinic/doctor regularly;
(c) men must always wear condoms in casual sexual encounters.
3. Sexually transmitted diseases can be prevented by:
(a) the use of condoms;
(b) washing with warm water after sexual intercourse;
(c) taking medication prescribed by the doctor when infected.
4. To prevent sexually transmitted diseases, it is necessary:
(a) to see a doctor;
(b) to follow the advice given by the doctor;
(c) for men to use condoms before engaging in casual sex.
5. It is necessary:
(a) that men should use condoms;
(b) that women should go to the doctor/clinic from time to time;
(c) that they should take medicine as prescribed.
6. It is necessary:
(a) to teach men to use condoms;
(b) to see a doctor from time to time;
(c) to take medicine as prescribed.
7. It is necessary:
(a) to go to a doctor/clinic immediately when you have a problem;
(b) to take your sexual contact to the doctor for treatment. If you do not do this, treatment of just one person is useless.
8. It is necessary to require men to use a condom.
9. It is necessary:
(a) to advise men to use condoms;
(b) to take preventive medicine.
10. If you know that you are suffering from any sexually transmitted disease, go to the hospital immediately, so that you do not infect other sex partners.
We believe that the main factor that made this programme so successful was the fact that the women themselves were responsible for the programme. This was reinforced by the methods we used: taking services to the people and mobilizing the community. The community responded with a high level of participation, and the prostitutes themselves became the educators of their peers.
Making condoms easily available was another important factor. This depended greatly on the support of the health education services. A third factor was that we succeeded in reaching the clients indirectly through the women, who thus proved to be agents of change for the men.
It is gratifying that even women who were already infected with HIV insisted on the use of condoms. They had been educated to such a level that they appreciated the need to protect their clients.
Because of the encouraging results of this programme there are now plans to train multidisciplinary health teams in four other sites as a preliminary step towards implementing the programme on a national scale.
John David Dupree and Stephen Beck
According to numerous study reports, one of the most significant factors influencing knowledge, attitudes and behaviour in relation to AIDS is acquaintance with someone who is known to be infected with HIV, or with that person's family, friends, and fellow workers. For instance, a study reported at the Third International Conference on AIDS in Washington, DC, in 1987 found that one of the factors significantly associated with adopting low-risk behaviour was the visual image of deterioration of AIDS patients and the impact of the disease on individuals known to the subject (McKusick et al., 1987).
Many people do not acknowledge that AIDS could affect them and their communities until they see the impact of the disease on individuals and their families and friends. Studies in Ghana and Zimbabwe to determine the content of AIDS prevention programmes for Africa indicated that people want first-hand evidence of how people with AIDS look, how they and their loved ones deal with HIV infection, and how society reacts to them (Gordon et al., 1988).
Similarly, one of the most significant predictors of how well people adjust to their own HIV infection is whether they have known someone with HIV (Tross et al., 1987).
Unfortunately, the urgency of AIDS prevention programmes precludes waiting until everybody has a friend or family member with AIDS. By that time it could well be too late for major portions of a generation in some of the hardest-hit areas of the world; many people who could have been saved with timely information on AIDS prevention would have become infected and died.
Early AIDS prevention programmes in Europe and the United States of America took advantage of this personal knowledge factor by applying the peer educator" model, using people with AIDS, their families, and their friends in public statements and programmes on the disease. The model has been used successfully in other health promotion campaigns. For example, women who have had breast cancer are among the most powerful and convincing advocates of regular self-examination. Similarly, those who have overcome alcohol dependence are effective in providing support for others attempting to do the same.
It followed, then, that teenagers with AIDS might be most effective in reaching high-school students with messages about AIDS prevention, gay men with AIDS in reaching other gay men, black women with AIDS in reaching other black women, and so on. Because HIV does not discriminate on the basis of race, sex, religion, socioeconomic status, sexual orientation, political persuasion, or geographical location, use of people with HIV infection helps combat the stereotyped ideas of who can get this disease.
On many occasions, however, attempts to inform people and combat stereotyping have been thwarted, for example by a resistant school board, an uninformed technical crew at a radio station, or a group of parents afraid of infection. The perceived threat usually dissipates, however, when the objectors are brought face to face with ordinary human beings who have HIV infection.
Evaluations of AIDS prevention workshops consistently show that people are informed and inspired by such encounters. For instance, written comments on workshops conducted in Trinidad and Tobago indicate that the "People with AIDS" panel was one of the most effective sessions on the agenda. Similarly, a 3-hour session on the psychosocial impact of AIDS, at the First National Workshop on AIDS in Freetown, Sierra Leone, with a panel consisting of an HIV-infected Sierra Leonean and a Sierra Leonean who had three friends with AIDS, was evaluated as one of the "most useful" presentations.
The issues involved in implementing this "peer educator" concept in both developed and developing countries can be discussed from the viewpoints of (a) the public; (b) the AIDS prevention programme; (c) the individual with HIV infection; and (d) the spouses, family, friends, fellow workers, and other acquaintances of people with HIV infection.
People with HIV can be among the most effective educators about AIDS. In nearly every society, government officials, educators, community leaders and others have discouraged people with HIV or their loved ones from talking in public about the effects of the disease on their lives. Some of the reasons for this are based on misinformation or stereotyping; others merely camouflage prejudices or "moral" positions. Examples of directly stated or indirectly inferred reasons for resistance include:
• fear of acknowledging that there are people with HIV in the area;
• inability to recognize people with the disease as a potentially valuable resource for prevention activities;
• unrealistic fear of contagion if the infected persons or their carers are in a public place;
• fear of the loss of individual or family privacy;
• fear of the loss of an individual's employment, housing, insurance, or civil rights;
• fear of stigmatization and social rejection of the individual or family;
• fear of violence against the infected person or his or her family;
• fear of "bad press" and/or a loss in tourism or foreign aid if citizens speak publicly about their disease;
• fear that, by spending time on providing education, the person will suffer increased stress and waste energy needed for fighting the disease;
• contempt for the individual, who is perhaps perceived as deserving of the disease and unworthy of public sympathy;
• fear that such public statements will include explicit discussion of taboo subjects, such as drugs, disease, death, sexuality and sexual practices, by people who are not suitable role models.
Some employers have terminated the employment of productive people with HIV because of threats to the business once it is publicly known there is an HIV-infected employee. In addition, families have rejected infected people, churches have excommunicated them, the military have discharged them, and courts have removed their children from their custody. So the decision to admit publicly to HIV infection is not one to be made lightly, or without some protection being guaranteed at the policy-making level.
In many countries the process of making AIDS-related policy decisions has become controversial and emotionally charged. Because AIDS is primarily a sexually transmitted disease, its prevention necessitates talking about taboo subjects like sexuality and specific sexual practices, as well as drug use, disease and death. Defending the rights of a person with HIV infection can be complicated when the person is seen by many as a symbol of aberrant disease-causing behaviour and therefore unworthy of respect-certainly not someone to be invited to speak to children in schools or members of church congregations.
Public fear of this new disease may be accompanied not only by this syndrome of "blaming the victim", but also by the conviction that "it cannot happen to me or my family", since none of "us" do those unspeakable things. The distancing necessary to maintain such a posture is frequently gained at the expense of the individuals or groups of individuals thought to be at highest risk. This inability to see AIDS as a human problem can close the hearts of otherwise compassionate people and prevent them from dealing responsibly with the threat to themselves and their families.
The AIDS prevention programme
Some of the issues faced by public and private agencies involved in AIDS prevention campaigns appear to be virtually universal; others vary from country to country or from village to village. The dissemination of basic medical facts tends to cause less controversy and be less emotionally charged than attempts to deal with specific sexual or psychosocial aspects of the disease.
An HIV-infected individual may sometimes be prohibited from appearing as part of an AIDS prevention programme by, for example, the policymaking board of a school or other institution. When this happens, AIDS educators should continue to lobby and educate the policy-makers and the community to have the policy changed. Interim strategies for such action include:
• "humanizing" the AIDS epidemic by arranging meetings between opponents and proponents of the policy and people with HIV infection and their families and friends;
• inviting the policy-makers to attend talks given to other groups by people with HIV and their families and friends, in as nonthreatening a situation as possible;
• recruiting health care workers and counsellors working with HIV-infected individuals to deliver the sexual and psychosocial messages through story-telling and perhaps some sharing of personal experiences;
• recruiting spouses, family members, friends, and fellow workers of HIV-infected individuals to discuss how the disease has affected them and their loved ones in their daily lives; such people can be very powerful and moving advocates of safe sexual behaviour and the sharing of information on prevention with others.
Ideally, however, the personnel of the programme will need to tailor campaigns to particular groups, using HIV-infected people, their families or their friends, depending on the specific situation. In deciding who would be most effective in a given situation, several factors should be considered, including sex, age, race, socioeconomic status, religion, and political outlook. People are more likely to be motivated to take action if they can identify closely with the presenters. For instance, women with HIV may be more successful in overcoming resistance in a women's group, blacks with AIDS will probably be listened to better by a primarily black audience, young people will pay more attention to another young person with AIDS, and religious groups have been observed to be more moved by hearing the story of people from their own denomination. The fact that people from a similar background as the listeners are affected by the HIV virus also helps counter the dangerously stereotypical view that only certain types of people get AIDS.
When people are recruited or volunteer to act as AIDS educators, it is important that they are made fully aware of, and encouraged to discuss, the potentially negative effects of their participation. While candidates may have already thought about these factors, they should be encouraged to consider in particular the disapproval or rejection that they may encounter, as well as the possible loss of job, family, status, etc.
It is also important that the people organizing the public appearances of infected individuals should maintain as much control as possible over the proceedings. Prior to their presentation, the facilitator might thank the panelists, note that they are taking a personal risk by being there, and strongly suggest that the audience respect the panelists' privacy by maintaining a policy of confidentiality outside the room. While the audience should be encouraged to ask any questions, even embarrassing ones, panelists also need to be free not to answer questions that seem too personal.
Once the panelists have been introduced, the facilitator might suggest that the audience be allowed to ask questions after the panelists have finished their presentations. One effective tactic is for the facilitator to start by asking general exploratory questions of each of the panelists, including variations of the following:
• Can you talk about your life before AIDS? What were your hopes, your dreams? What were your relationships like? What did you do for fun? What were your plans? What did you expect to do with your life?
• People have a wide range of reactions to information about life-threatening illness. Can you describe what your life was like during the weeks before and after you were informed of your own or your loved one's HIV infection or the diagnosis of AIDS?
• Families and friends respond in various ways to the news of life-threatening illness, ranging from total acceptance to total rejection. What has been the reaction of your family and friends to this news? Give both positive and negative reactions, if possible.
• Many adults with HIV infection or AIDS have experienced a loss of identity. They are no longer a social worker, doctor, athlete, mother, or soloist in the church choir, but a person with AIDS. How have you or your loved ones experienced this loss of identity?
• Medical expenses can be devastating, even if a person has a well paid job. What has this been like for you or your loved ones? How have your finances been handled?
• One of the most cruel "punishments" that some parts of our society would inflict on people with HIV is withdrawal of intimacy and sexuality from their lives. Some infected people are even accused of deliberately spreading HIV through unsafe sexual practices. What has been the reaction of your sexual partner(s) to the news of your HIV infection or AIDS? What intimacy is there in your life today?
• You or your loved one has had to face the possibility of premature death. Some people describe themselves as being on a roller coaster of depression, hope, anxiety, denial, exhilaration and despair. Others have embarked on new explorations of their spirituality. Can you describe how you or your loved one is dealing with the possibility of early death?
• Can you talk about your current health status? Are you taking any medications or participating in alternative therapies?
Once the audience starts to ask questions/ a vital human bond can be and frequently is formed. The instructor of a university-level course on AIDS prevention reported, for instance, that a man who had been openly hostile to and critical about people with AIDS for six weeks in the class appeared to change his opinions dramatically after taking part in a class session with three infected panelists. He approached the instructor afterwards, apologized for his previous behaviour, and obtained a referral to an agency doing volunteer work with people with AIDS. Usually audience members approach the panelists afterwards, thanking them and/or expressing their appreciation through some physical gesture, such as a handshake or a hug.
Face-to-face encounters appear to be extremely effective, since people can take part in a dialogue with the individuals. Members of the USAID-sponsored AIDSCOM project have found, however, that the screening of films can provide an acceptable substitute when personal contact is impossible to arrange. The Ghanaian film, AIDS: Need for action now, for instance, which shows a young woman in Accra in the end stages of her disease, has been an effective substitute when local people with HIV are not available. The common thread that binds us as human beings usually motivates people viewing the film to want to help prevent such devastation in their own communities.
People with HIV infection
For people with HIV, deciding whether to admit publicly to the infection is rarely easy. Their health status is a major consideration, since nobody can be expected to make an appearance in public or on film if not feeling well. If the willingness and energy are there, people with HIV form a ready pool of educators able to speak about their experiences, because often they have the time and a deep interest. In addition, studies have consistently indicated that long-term survivors with HIV infection often continue to contribute to society in a meaningful way. The idea that sharing personal experiences can help prevent other people from becoming infected may also contribute to a sense of well-being and a positive self-image, both vital for coping with the disease.
People with HIV commonly became infected through voluntarily taking part in high-risk pursuits. Because of this, they can personify risk and effect. In face-to-face encounters, panelists can give audiences an authentic and comprehensible discussion of risky acts. They may have a good grasp of the language commonly used by people with high-risk behaviour patterns, and of ideas about the most effective prevention messages.
It is important that people's concern about safety and privacy should be respected during their public appearances. Some may want to use pseudonyms, wear a disguise, or prohibit the presence of the media and/or photographers so as to feel secure in a society where harassment and discrimination are common. Since loss of control can be a major issue for people with HIV, it is important that the limits they set should be respected.
If a support group, an association or a clinic is involved in the recruitment and training, and in making arrangements for speakers, scheduling can be more predictable. Because of the vulnerability of HIV-infected individuals to variations in health status, having back-up speakers ensures that scheduled events can go ahead. Having the group evaluate the presentation subsequently provides the speakers with the kind of feedback that makes this activity most worth while for them. If funds are available, speakers frequently appreciate a small payment, particularly those with lower incomes.
Spouses, family, friends, co-workers and acquaintances
Spouses, family members and friends of people with HIV often form groups for mutual support, particularly if they feel that their regular support systems do not provide sufficient assistance. Because of the stigma associated with AIDS, many of the people involved in the care of a person with the disease experience discrimination and rejection. In addition to regular meetings to discuss their feelings and coping mechanisms, groups of such people can share information, deal openly with their emotions, celebrate when celebration is possible, and mourn with other people in similar situations. Holding a party to celebrate the fact that your HIV-infected child will lose the sight in only one eye instead of two, for instance, is something that people uninvolved with AIDS might not understand. Some members of these groups may decide to educate the public about how AIDS can ravage a family, a church, or a community. Because they so frequently feel alone, many find it therapeutic to share their frustration, anger, joy, sorrow and pain with others by becoming involved as AIDS educators. They, too, must be aware of the potential repercussions of their public involvement in such a sensitive area. Some are embarrassed by the unpredictability of their own emotions and others may be nearly immobilized by grief or by anticipatory sorrow at, for example, the prospect of outliving one's child. Since nearly everybody in the audience is likely to be involved in some kind of family or relationship, they are potentially capable of being touched by such a story, whether or not they have previously felt compassion for people with AIDS.
Revealing the human aspects and emotions involved in the AIDS epidemic is vital in motivating people to take personal, professional and political action, particularly in those parts of the world where the incidence of AIDS is low or not generally known. If individuals or decision-makers can see and meet people who are affected by the epidemic, particularly people with whom they can identify in some way, they are more likely to see the problems as their own.
Gordon, G. et al. (1988) Using focus group discussions to generate content and scenarios for an AIDS feature film for African audiences. Paper presented at the First International Conference on the Global Impact of AIDS, London, March 1988.
McKusick, L et al. (1987) Prevention of HIV infection among gay and bisexual men: two longitudinal studies. Paper presented at the Third International Conference on AIDS, Washington, DC, June 1987.
Tross, S. et al. (1987) Determinants of current psychiatric disorder in AIDS spectrum patients Paper presented at the Third International Conference on AIDS, Washington, DC, June 1987.