| AIDS prevention through health promotion: Facing sensitive issues |
|PART 3 Increasing the credibility of the message: peers and patients as health promoters|
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.