| AIDS prevention through health promotion: Facing sensitive issues |
|PART 1 Starting with ourselves|
This section looks at the strong emotional influences experienced by health promoters in dealing with HIV and AIDS. Maeve Moynihan poses a number of questions that could be asked to illustrate how emotions can influence the professional judgement of health workers. Hilary Dixon and Jane Springham take the exercise further. From their experience of training professionals to respond more effectively to AIDS, they are aware of the strong emotional reactions that may emerge in response to the concepts of death, promiscuity, anger, sexuality and pain. They provide examples of how confused or unrecognized values and feelings can impede education, and they offer practical suggestions for overcoming those barriers.
The current situation
As the problem of acquired immunodeficiency syndrome (AIDS) affects more and more countries and greater numbers of people, provision of information and education has become a major weapon against the disease, and a way of encouraging appropriate reactions to it.
One of the lessons to emerge from the health promotion programmes that have been functioning for some years is that, at each stage of planning and implementation, decision-making tends to be affected by the emotions that AIDS arouses. Each programme has its own reactions to contend with as well as those generated by the press, by government announcements, and by the many interest groups within the community. Examples of decision-making that seems to be governed more by feeling than by thinking can be found at almost every level of society.
At the government level, examples can be found in decisions concerning the testing of visitors for the human immunodeficiency virus (HIV). Several national authorities require visiting students from some countries to be tested for HIV antibodies, but not students from others. Elsewhere, HIV antibody tests are required for new immigrants, but tourists, businessmen and diplomats are usually granted exemption. Elsewhere, decision-makers may attempt to minimize the extent of the domestic AIDS problem for fear of reducing the inflow of tourists. It is difficult, from a public health perspective, to see how these different measures can lead to reduction in the spread of HIV. The decisions seem rooted in an assessment of the political impact of interest-group reactions and popular sentiment rather than in considerations of public welfare.
There are also numerous examples of over-reaction among health professionals. In one country a group of senior nurses have refused to do thick blood smear tests for malaria. Elsewhere, nurses have refused to care for
dying AIDS patients. Both groups know that their duties do not put them at risk if they observe simple precautions, but knowledge is not enough; their fear is so great that it prevents them from acting rationally.
Similar examples can be found at the community level. People who are at little risk may have an exaggerated fear of acquiring HIV infection, insisting on the imposition of rules tantamount to punishment for infected people. In one country, a schoolgirl who contracted HIV through a blood transfusion was enclosed in a glass box while she was at school. In another, a man dying of AIDS could not sell his car, because potential buyers were afraid of infection; the man was also asked to stay at home and not mix with his neighbours.
Fear gives rise to a need to apportion blame. In some countries blame has often been attached to homosexuals. Indeed, AIDS has sometimes been portrayed as happening only to white homosexual males. The people who insist on viewing AIDS in this way often claim to be at no personal risk at all.
People who engage in high-risk behaviour often use the same defence mechanisms. In some countries, men do not consider themselves to be homosexual if they have sex with women as well as with men. By identifying the same group-white, male, and homosexual-as the people to blame, others can deny that the disease has anything to do with them. They may even avoid seeking information about AIDS for fear that their self-image will be threatened.
This combination of denial and blame has been found to operate among decision-makers also. Certain community leaders have claimed that their communities are completely risk-free (and by implication, blame-free) and have stopped ail discussion of sexual behaviour in general and AIDS in particular. Similar patterns of denial and avoidance have been found among some communities of prostitutes (Schoepf, 1988).
These brief examples of the way people have reacted in different cultures cannot indicate the great complexity and variation of the reactions. Each country, and each group and person in the country, develops an individual approach to the disease, depending not only on the numbers of patients and spread of the disease, but also on reactions and adaptations to it. In addition, the situation in any given country is continually changing.
However unique it may seem, AIDS is not completely different from other public health problems. Brandt (1988), writing on the history of sexually transmitted diseases (STDs) and the lessons they might have for those working with AIDS, made four important points:
• The emotion that the disease arouses has influenced and will continue to influence medical approaches and public health policy.
• Promotional activities that attempt to stop undesirable sexual behaviour on the basis of fear alone do not work. However, those that combine a judicious amount of fear with a practical way of modifying high-risk sexual behaviour (which in STD control usually means promoting the use of condoms) can have some success.
• Compulsory testing, cordons sanitaires, and other similar measures are not effective.
• Even when treatments and vaccines become available, they will not easily modify or end the pandemic.
These points have a direct bearing upon the subject of this publication, and indicate the path that health policy-makers must take. Health promotion activities are of central importance to efforts to prevent and control AIDS. If the right approaches and policies are to be adopted, professionals must somehow learn how to handle strong emotions that may be only half-consciously recognized.
Reactions of health professionals
It may be thought that the professional judgment of health workers is never clouded by emotion. One way to gauge this is to ask the questions listed below-recognizing that the area is one where there are few right answers-and monitor the person's emotional reactions.
The health workers should be asked to imagine that they are visiting a hospital outpatient clinic and see two mothers with babies; one baby has measles, the other has AIDS, acquired from the mother, who is HIV-infected.
• What is their first response to the two mothers? Is it the same for both?
• What if the mother was infected with HIV by a blood transfusion rather than by sexual contact? Does their attitude to her change?
• Will they put more effort into treating the baby with measles because he/she will live? Is there very little that can be done for the baby with AIDS? Will they become frustrated by spending time and effort on a child who will die?
• What about the mother who is HIV-infected? Would they have delivered her baby?
• Do they think that there is any possibility that they might be infected? How do they feel about their own death?
Next, the health workers should be asked to imagine that they have been asked by a voluntary organization to talk about AIDS to a group of teenagers who have dropped out of school.
• Do they know the common words used in the street for the male and female genitalia, for different sexual activities, and for condoms? Do they feel at ease using those words in situations where they are necessary for instruction? Can they discuss such things with their children or with their partners? Are they at ease demonstrating how to use condoms to a group of the opposite sex?
Finally, they should imagine that their AIDS programme has limited funds and they have to consider requests for support from three organizations-one working with people with haemophilia, one with homosexuals, and one with drug injectors.
• What are their criteria for setting priorities? Do they feel that one group has more moral worth?
The health workers should then consider whether answering these questions has provoked any feelings in them? Have they spotted issues that are sensitive for them? Most people would say yes; if health promoters admit to being influenced by their emotions, then it is worth while asking when and where this occurs. In the health promotion planning cycle (see Fig. 1), the health professionals' own objectivity and ability to learn might be most affected at step 2, the initial assessment, when information is obtained on AIDS epidemiology, people's knowledge, behaviour, culture, and environment, and at step 5, when strategies, messages and educational material are developed. As the cycle continues, the emotional reactions of the target audiences themselves come into play (WHO, 1989).
Brandt, A. M. (1988) AIDS in historical perspective: four lessons from the history of sexually transmitted diseases. American journal of public health, 78(4): 367-371.
Schoepf, B. G. (1988) Community-based risk reduction support. Paper presented at the First International Symposium on Education and Communication on AIDS, Ixtapa, Mexico, 1988.
WHO (1989) Guide to planning health promotion for AIDS prevention and control. Geneva, World Health Organization, 1989 (WHO AIDS Series 5).
Hilary Dixon and Jane Springham
What are the barriers?
Loss of employment
In our experience of health promotion against AIDS, issues such as those listed above are likely to be raised in some form or another. For most people, merely reading the list probably conjures up emotive pictures or elicits an instinctive response.
Some of the subjects are taboo and rarely talked about even within an intimate relationship. Some elicit uncomfortable feelings we may prefer to avoid. Still others are associated with recollections from childhood, such as the way we were touched and spoken to, the atmosphere at home, the family, the physical environment, school, our peers, our religion. Our feelings about them have been shaped by the values and attitudes to which we were exposed when we were young, and gradually modified as we have gained experience ourselves. The values and attitudes of those around us were in their turn shaped by the whole range of religious, moral, legal, ethical, and social mores of the society in which we live. All of us bring these feelings, values, and attitudes into our relations with others, and what we say and do are greatly influenced by them.
In our professional lives, we cannot simply set aside this complex web of feelings, values, and attitudes for the duration of the working day, picking it up again when we go home. The planning that is essential to the success of any work must therefore include some personal preparation. This involves becoming aware of the areas and issues that are difficult for us, beginning to work on them, and identifying support for dealing with them. If we do not do this, our own feelings, values, and attitudes are likely to become entangled with those of the people with whom we are trying to work. This will certainly create confusion and may entirely negate the value of any work we do.
It is important also to recognize that the people we work with have their own feelings, values and attitudes. If we hope to bring about any change we will need to acknowledge this, feel at ease with emotions, and develop the skills to handle them appropriately.
This preparation is necessary for all forms of health promotion against AIDS whether we are providing information, examining feelings, values and attitudes, or developing skills.
The information we give and the way we present it are value-laden. Decisions such as the weight to give to conventional medical treatment as opposed to holistic approaches, the emphasis to give to condom use, or how to mention oral and anal sex are all influenced by our personal value systems. Health workers employed by an agency that specifies clearly what may or may not be said in health promotion will have to censor certain information and have other information specifically approved.
We need to monitor the way we present information and be aware of the reasons for presenting it in the way we do. To what extent are we influenced by external factors, about which we can often do little? To what extent are we influenced by internal controls we impose on ourselves or by personal opinions? Two examples may help to illustrate this situation.
• Betty is a teacher. She feels uncomfortable with the issues raised by HIV infection and AIDS, but they are part of the syllabus and she is required to teach them. In talking to her pupils, Betty explains about the high-risk behavior practiced by many prostitutes, intravenous drug users and homosexual men. The young people get the impression that AIDS has nothing to do with them. Betty is saved the embarrassment of any difficult questions.
• Martin has been invited to provide a training session for volunteers on an AIDS helpline. They are discussing sexual activity in terms of high, medium or low risk. He suggests that anal sex is much more risky than vaginal sex. One of the group challenges this and asks for the evidence. Martin feels uncomfortable; he is not sure what the evidence is, he just "knows" that it is true. Afterwards, he wonders why he felt so uncomfortable. Was it just because somebody had challenged him or had it to do with his belief that anal sex is dirty and unnatural?
Both Betty and Martin were uncomfortable about an aspect of what they were talking about. If they had prepared themselves both professionally and personally they might have handled the information very differently. Betty might have understood how important it is in health promotion not to isolate young people from the very real problems that may affect them. Martin might have checked his information and recognized that, in this case, his beliefs happened to be factually correct. However, beliefs often get in the way of evidence. He could usefully have discussed this phenomenon with the group.
In presenting information we need to ask ourselves four questions:
• Why am I presenting this information?
This will enable us to clarify objectives for a particular group. For some groups only the most basic information is necessary about the nature of the disease, the transmission of the virus, and methods of protection. For other groups it may be necessary to discuss specific concerns, such as occupational risk or drug injecting.
• What do I want the group to get from the information?
Some groups, such as young people, need to understand that the information is of direct relevance to them. In other cases, it may be more appropriate to reassure the group that the likelihood of their becoming infected is very small. The way the information is presented will determine its effect.
• How can I best present the information?
Each group responds differently, and consideration needs to be given to the most effective method of presentation, quiz, video, or question-and-answer session.
• Am I at ease in communicating this information?
If we experience any discomfort or find ourselves censoring our responses to any of the above three questions, we have some preparatory work to do. Discomfort about any of the information will certainly be transmitted to those listening. If we censor certain information we are influencing the quality of the education given to the group.
Examining feelings, values, and attitudes
In working on issues related to AIDS, we need to go beyond mere information. Most educators now recognize that feelings, values, and attitudes must be taken into consideration in encouraging change in behavior and providing sensitive care for people infected with HIV.
To help others explore their feelings, values, and attitudes, it is essential to remain objective, to empathize without becoming emotionally involved, to listen with respect, and to challenge where necessary. This is not always easy, and thorough preparation, support, and external supervision are necessary. Practical experience also helps in approaching a group with confidence.
• Peter is exploring attitudes towards homosexuality with a group, and they have just seen a video tape that looks at society through the eyes of a homosexual. One of the group rushes from the room in tears. Some of the group want to go and find the person, others accuse Peter of being insensitive since he does not go himself.
• Jenny is just coming to the end of a training session for first-aiders when one of the group says that none of the information he has been given will change his opinion, he would not give first aid to a drug addict or a homosexual. The group turns on him to demand an explanation, to question what he says, and to ridicule his attitude. Jenny has ten minutes left to deal with this situation.
Both these situations are difficult to handle. Peter is probably right not to go and find the person, who may well be thinking only of himself or herself by leaving a session that was in some way painful. At a suitable break he may inquire about the person and offer to listen if he or she wants to talk. Very often the person will be ready to rejoin the group. However, Peter will also need to talk to the group and reach agreement to continue.
If Jenny is to be an effective health promoter she will need to challenge the statement that has been made, while acknowledging the fear underlying it. At the same time she will need to deal with negative responses from the rest of the group. If Peter and Jenny are thoroughly prepared they will be aware of the difficulties that may arise, will have talked about various ways of handling them, and may well have observed other trainers in the same situation. They will then feel less threatened when difficulties arise.
Groups can be extraordinarily reluctant to look at emotional issues and may use a wide range of avoidance techniques. Health promoters need to be aware of this avoidance behavior and have the confidence to confront it when it arises.
• Ann is running a session with a group of medical students on attitudes towards HIV infection and AIDS, and holding a quiz on transmission of the virus. She is attempting to make the discussion personal, and to focus on the group's own perception of risk-taking. The more she tries to do so, the more the students want categorical answers about what is and what is not risky. Finally, one of them says, "Look, all we want to know is whether we are at risk from patients."
• Tony is working with a group of young offenders. Somebody asks where the virus originated. The group quickly lapses into speculation, anecdote, and media-inspired stories. In a short while, they are looking for scapegoats and blaming others for what has happened. They all feel better now that they do not have to take any personal responsibility.
• Sheila is running a two-day course for health visitors. She gradually becomes aware that the group does not regard AIDS as a problem that affects them. There is an implicit assumption, which everyone appears to have adopted, that as educated, married, sexually faithful, law-abiding citizens none of them is at risk and that the problem is one that affects only uneducated, unmarried, promiscuous, irresponsible individuals.
In all these situations the group became uncomfortable with the subject under discussion. If Ann, Tony, and Sheila permit the group to distance itself from the issues they will not be carrying out effective health promotion. They need to confront the situation by describing what they observe, suggesting why it is happening, and asking the group to reflect on whether this is a useful approach. They are more likely to recognize what has happened and have the confidence to challenge it if they have themselves been part of a similar group.
Our own feelings, values, and attitudes also influence any skill training we offer. We may need to work with groups on decision-making, communication, negotiation and assertiveness skills, or on practical skills such as how to use a condom effectively. Croups may also need to practice how to communicate these skills to others. If we lack confidence or feel uncomfortable with any of these skills, it will show in the way we teach them or avoid teaching them. As educators we must be able to help others to overcome fear and embarrassment.
• Pam is an AIDS trainer and has just completed a series of sessions for workers in a drug rehabilitation centre. She talked about the important role condoms play in the prevention of HIV infection, handed out leaflets about condoms, and left some sample packets on the table for people to look at. When she made a follow-up visit to one of the drug centres, she was surprised to find that no-one was demonstrating effective use of condoms to the clients. With much embarrassment, one of the workers admitted that he did not know how to demonstrate their use, and another said she had never actually handled a condom.
• Chris was working with a group of social workers who were considering their own attitudes towards HIV infection and AIDS. They several times raised the issue of assertiveness. One woman said she would find it very difficult to negotiate with a man what kind of a relationship she wanted with him, and this met with general agreement. Chris did not follow this up; she knew she was not very assertive herself, and these social workers seemed very confident to her. She thought that they might recognize her own lack of assertiveness.
In the first example it was clearly not enough for Pam to lecture or to distribute leaflets and condom samples. The group needed to talk about their own anxieties, ask questions, gain confidence, and handle condoms. In the second example Chris did not take up the issue of assertiveness because she lacked confidence herself. In both cases the educators needed an opportunity beforehand to deal with their own anxieties and embarrassment.
Overcoming barriers in ourselves
It is relatively easy to recognize that there are barriers, both in ourselves and in those we instruct; it is much more difficult to overcome them. How do we prepare ourselves personally for AIDS health promotion and at the same time establish support and supervision?
The most valuable preparation is to form a resource group with fellow workers. These may be colleagues in the same organization or like-minded people in a similar field. Such a group has three useful functions.
• It provides a forum for discussing methods and materials. It can assess the usefulness of material produced locally, nationally, or even internationally. Group members can be encouraged to bring material they have produced themselves. The creativity of the group can be used to devise new methods and materials. A simple resource a picture, for example can be developed in many different ways into a story, a play, a puppet show, or a discussion.
• It provides an opportunity for testing methods and materials. A good working principle is never to use any method, material, or exercise that you have not tried out yourself; you may not realize how powerful or disturbing the experience can be. Testing activities with colleagues also leads to useful discussion about presentation skills, the value of the activity, and the way in which it is carried out.
• It provides an opportunity for discussing sensitive issues in a supportive environment. By taking part in the group's activities you may become aware of what you yourself find hard to deal with and so be alerted to potential difficulties. It may be appropriate to deal with such issues together with the whole group or with a single partner. In the latter case you may find listening techniques useful. In conversations we often do not register all the information being given because we are preoccupied with preparing our response. Equally, when we are talking we may speak quickly for fear of being interrupted, or avoid a sensitive issue in case the discussion becomes emotionally difficult. Practising listening to a partner for five or ten minutes without interrupting or judging can help you hear and absorb what is being said, and ensure that the other person has the opportunity to explore an issue in depth.
Sometimes you may not want to use such a group for personal exploration; you may want to take time alone to reflect on aspects of your own life or on an issue that has created difficulties for you. Occasionally you may need more help than the group can offer. If so you might consider consulting a professional counsellor or a medical or health professional.
Clearly the resource group can continue to offer support throughout the health promotion programme against AIDS. However, there are additional ways you can seek support once you start work.
• It can be a valuable experience to work with a partner. This allows tasks and expertise to be shared and provides support. When something goes badly it is useful to have someone with whom to commiserate, to analyse what went wrong, why it went wrong, and what you could do differently next time. On the other hand, your partner can praise and encourage you when things go well.
• Monitoring and evaluation of the health promotion programme can provide useful information. Opportunities for participants to reflect and discuss in pairs or as a group help them to assess what they have learnt and how they are responding. However, you will probably also need to use formal evaluation techniques. Pre-test and post-test questionnaires designed to measure changes in knowledge, attitudes, and behavior are useful. In an area subject to rapid change, it is important to monitor constantly the suitability of what you are doing. It is very easy to become complacent and continue to deliver the programme that worked well last year but may not be suitable this year.
You are unlikely to be able to influence greatly the support given by your supervisors, but if you have responsibility for other staff it is important to recognize the need to support them. Providing services for people with HIV infection or AIDS, and for their friends, lovers, and families, is stressful; the atmosphere is often emotionally charged and resources may be in short supply. Health workers can lose sight of their own needs in an effort to make things easier for their clients. Regular informal staff meetings are essential for good communication between all levels. Managers need to arrange supervision sessions with individual staff in which difficulties can be identified and stress dealt with before it escalates. They also have a responsibility to ensure that staff have sufficient free time.
It is clear that all this is no easy task. All of us learn through our mistakes, and only through action can we gain experience and become more effective. If we have prepared ourselves thoroughly, both personally and professionally, and have adequate support and supervision, we have at least begun to demolish the barriers to effective health promotion against AIDS.