AIDS action Issue 16 Page 1 2
Issue 16 1992
What have we all been doing - and have we been doing right?
Sharing the Challenge, the theme of World AIDS Day, 1991, invited the question: 'What is this challenge?' What have we all been doing, and have we been doing it right?
Despite increasing public awareness of HIV and its modes of transmission, estimated levels of infection continue to rise, and continue to shock. We know that HIV is most commonly spread through penetrative sexual intercourse. Since there is as yet no cure or vaccine, scientists and non-scientists alike still agree on one key strategy in AIDS prevention: promotion of safer sexual behaviour. This challenge has been taken up by thousands of groups worldwide, responsible; for educational activities ranging from safer sex cabarets in Thailand's night-clubs to anti-AIDS school clubs in Zambia.
What we have learn?
Before AIDS became a major public health concern, health promoters already knew what helps to promote behavioural change (such as stopping smoking or avoiding unwanted pregnancy) and what does not.
Later, those working in HIV/AIDS-specific programmes were to learn many of the same lessons - but unfortunately, valuable time had been lost. It is now generally acknowledged that 'information alone' is insufficient to change behaviour. What does this really mean? Information directed from 'outside' (through leaflets, talks, or mass media and marketing campaigns) towards individuals (members of the public or target group) is not enough for people to act on it.
People change their behaviour because those around them are changing - in the case of sexual behaviour, they particularly change because their lovers are changing: it does, after all, take two to have safer sex!
Although mass media and marketing campaigns undoubtedly playa part, programmes which encourage constant, sustained, inter-personal communication and 'peer' pressure are fundamental. The most effective peer educators of all are those who, like Charles Makumi (interviewed on page 7), are already affected by HIV - so long as such individuals are able to speak out without fear of discrimination.
We know we must find a 'point of entry' in any particular group or community at risk. We must identify those who have influence ('leaders' within a group) and motivate them to use their position to encourage more open discussion about sexuality, death and dying. Cultural 'norms', prejudice and taboos, must all be challenged. By mobilising as many project activities as possible, in as many different peer groups and communities, these social challenges and changes must be made to spread faster than HIV.
But to really persuade group 'leaders' and others that HIV/AIDS is important, we must first address those issues which are of more immediate importance - to a street child in Brazil, this is surviving violence on a daily basis, to a woman selling sex (with or without condoms) in a bar in Nairobi, it may be feeding her children. Behavioural change is dependent on a range of economic, political, cultural and gender-related issues. These issues cannot be changed overnight. The promotion of safer sexual behaviour is a long-term objective, requiring deep-rooted social change.
How, then, can programmes or individual projects evaluate the success or failure of their HIV/AIDS work in this broader context? Looking at longer-term indications (such as changes in rates of HIV infection, or sexual behaviour) as a measure of success in the short-term, is both demoralising and misleading. Demoralising, because long-term goals cannot be achieved in the short-term, and will more often lead to a hopeless sense of failure. Misleading, because those changes which can be observed cannot be attributed to any particular project or activity, since behaviours are affected by a range of external factors - from migration to mass media.
The hard truth is that we cannot know in the short-term what the real impact of current activities is on our long-term goals. And we cannot predict how things would have been, if we had acted differently. But act we must - and based on what we already know. In particular:
Simple approaches to evaluation, and publication of the results, can help us learn from our mistakes, and improve current activities, so long as we start by setting realistic, measurable goals in the first place. Questions to ask in an evaluation are then surprisingly simple: are the stated aims and objectives of a project being met? How is this being achieved? Finding the answers re-quires some research. Three different types of evaluative research design are described on pages 2 and 3.
Conducting small-scale research into current sexual practices, and monitoring changes (through knowledge, attitudes and practice surveys, for example) can be used to inform or improve project activities (see pages 2-3 and 6), even though this cannot be used as a measure of the 'success' of an individual project or activity.
Improved communication between local projects and larger research programmes, can help us to better relate the aims and objectives of small-scale projects to our sharer, longer-term goals.
Community-based projects should be encouraged to operate within much longer time-frames, to better reflect the longer-term nature of AIDS prevention work - many projects currently operate within a two/three year funding cycle.
Most people already 'evaluate' their activities without even knowing it. Personal judgement is a basic form of evaluation - for example, the feeling that a public talk went badly, or a group discussion went well. Often, however, evaluation goes no further, since many believe they need to bring in an outside 'expert'. But evaluation can, and should, involve project workers themselves, since the process itself helps to improve their confidence and expertise.
It must be remembered, however, that evaluation is a means to an end - not an end in itself. All too often, evaluation indicators (i.e. things measured) are selected not because they are the most appropriate, but because they are the easiest to measure. People can end up measuring the wrong things for the wrong reasons.
In any evaluation, we should be clear who the evaluation is for and what are the criteria for 'success'. This is an issue particularly when evaluation is carried out by an external consultant at someone else's request, for example, the donor agency. Although those providing support want to know if their funds are being well spent, and often need to show that results have been achieved, it is equally important for local programmes and projects to evaluate activities on their own terms.
Because of the complex social and economic factors which influence sexual behaviour, a project may change its short-term objectives, and/or strategies, still with the same longer-term goals in mind. This is true of many health-related initiatives, which begin with specific aims and are then forced to confront far broader, social issues. Where funders and project workers begin to differ in their objectives and/or strategies, they will also differ in their definition of 'success' and in the evaluation indicators chosen.
There is one key lesson in health promotion we do not have time to relearn. Many community workers around the world have found health promotion requires deep rooted social change. Sexual health is no different. In measuring the 'success' of any given HIV/AIDS project, therefore, we may find one of the most appropriate indicators is the level of participation in that process of social change.
Special issue on evaluation
practical guidelines on evaluating health promotion activities
measuring behaviour change - a community response
urban primary health care and AIDS - a case study
How successful are your health promotion activities? What has been achieved and how was this brought about? Peter Aggleton describes three relatively simple approaches to evaluation.
Before planning an evaluation, make sure you are clear about the original aims and objectives of the project and that these seem realistic. What strategies and activities did you choose to achieve these objectives? Evaluation simply means carrying out a study to see if the project is achieving its objectives, and how it is doing this. To evaluate particular stages of your project, you will need to choose 'indicators' (i.e. what you want to measure), as a way of showing the effectiveness of your work.
The table below shows the different stages common to most projects, with examples of corresponding indicators. Note that the indicators can simply be a record of what was put into the project (input indicators - amount of human and financial resources), what was actually produced during the project (output indicators e.g. number of staff trained), and the quality of what has happened (process indicators). The final indicators are those which show what short - and long-term impact the project has had on the target population.
It is important to choose realistic and practical indicators. For example, the ultimate objective of most health-related projects is to reduce the number of new infections. However, measuring a local project's impact on levels of HIV infection is, in most cases, inappropriate (see page 1).
Once you have chosen what you want to study and measure, you then need to choose a simple study (research) design. The three types described here are comparative studies, interview and questionnaire work (surveys) and ethnographic investigation. Whichever you choose will also depend on available resources and on what you want to find out.
1. Comparative Studies
This style of evaluation involves identifying the causes of particular changes in knowledge, attitudes and behaviour. This is usually achieved by looking at what happens to those involved in a particular health promotion activity (e.g. a training programme for nurses, or exposure to a new media campaign) and comparing this with what happens to another group of people not involved in this activity. Observation before and after the project activity can reveal whether the project has caused an observable change and, if so, how.
To be sure that the observed changes have been brought about by the particular health promotion activity under evaluation, the two groups of people compared must be as similar as possible. Sometimes this can be achieved by randomly allocating members of a larger group to two smaller groups, only one of which will participate in or receive the health promotion activity. Another way is to create two comparable groups of people by ensuring that each respective group has members who are similar with regard to age, sex, place of work, length of service etc.
In reality, however, it is often hard to create two separate comparison groups which are similar in every aspect except exposure to project activity. The members of one group may talk to (and therefore influence) those in the other, and there may be other influencing factors not common to both groups. There are also ethical problems to consider when deliberately denying one group of people access to potentially life-saving health information, or training.
Outcome / Impact
Amount of human and financial resources put towards a project or activity
How activities are run and impressions of participants
Impact or effect of project activities on a target population in relation to original aims and objectives
Staff costs, volunteer time, cost of educational materials
Extent of involvement of group members in a workshop, relevance of workshop activities
Number of training sessions held, number of staff trained, number of people reached by mass media campaign
Short term or intermediate: number of condoms distributed (and assumed used) or syringes exchanged, or requests for advice / information received. Long term: reported changes in knowledge, attitudes and behaviour; incidence of HIV transmission, or other sexually transmitted diseases
Examples of research design
Make a simple list for reference. What does this say about the level of local commitment or involvement?
Use interviews, questionnaires, or ethnographic research. What does this tell you about the project's
Identify and list - how does this list compare with stated project aims and objectives? Should these be changed in the light of experience?
Use a mixture of all three research designs outlined opposite. How do results compare with original aims and objectives? Were these realistic?
2. Interviews, questionnaires
Face-to-face interviews or written questionnaires are used to collect information from those involved in a project, before and after the project activity has taken place.
This method cannot easily show the cause of a particular change, but it can measure changes over time. For example, interviewing participants involved in a series of discussion groups on safer sex can reveal changes in their knowledge, attitudes and (possibly) behaviour at intervals during the project and at the end. However, we cannot say that these changes were all caused by the discussion groups alone.
This method will also provide information on the process of various activities e. g. how a discussion group was run and how the participants felt.
Care must be taken to ensure that the questions asked in Ian interview, or covered in a questionnaire relate directly to the objectives of the project activity to be evaluated, and to the indicators you have chosen to measure the effectiveness of that activity. In order to check this, it is helpful to pilot (test) an interview process or questionnaire, i.e. carry out a small number of interviews, or get only a few people to fill in the draft questionnaire. The responses will help indicate whether or not the questions are The most appropriate and if they ate clear. Once amendments have been made, data collection on a larger scale can take place.
It is rarely enough to collect information from those who just happen to be around. It is important to use a 'sample' group which is representative of the whole target population for your project. This can be done by choosing every 4th or 6th or nth individual involved in the project.
It is also necessary to make sure that key aspects of your target group are reflected in the sample. For example, if 20 per cent of 200 volunteers trained as HIV/AIDS counsellors over a twelve month period are aged over 40, and you intend to evaluate this training using data from 50 workers, make sure that 20 per cent of these 50 workers are aged over 40.
3. Ethnographic investigation
Ethnographic investigation was first used by anthropologists to gain an understanding of the structure and function of particular societies or groups. Information is collected by an outsider from key informants with whom relationships of friendship and trust are built up over time - often through 'hanging around', chatting, and generally observing.
Applied to health promotion activities, this form of evaluation usually involves a project participant as observer, i.e. there is no need for an 'outsider'. However, good skills in communication and a sensitive understanding of social interactions is usually required. The observer (evaluator) should try to record only the information which appears to relate to the aims, objectives of the project. This type of research often involves taking many descriptive notes, which should be turned into a brief and practical report.
Using this method the evaluator can come to understand, while participating in the project, how a particular health promotion activity works. Detailed observations may be made, for example, of the ways in which nurses relate to patients and their families, or of how a particular community understands the cause of disease, e.g. AIDS. These observations may be supplemented by in-depth interviews with key project personnel/members of the target population. interviews may be carried out individually or on a group basis.
An ethnographic evaluation of a theatre project involving young people, for example, might involve observing how decisions about the play's contents were made, how involved the young people really were, and what reactions the final play produces in the audience. Individual interviews might also be carried out with the adults and young people directly involved, as well as with members of the audience. Similarly an ethnographic evaluation of an HIV/AIDS outreach project providing condoms to young male sex workers might involve observing the quality of interactions between project workers and sex workers, as well as group interviews with the young men themselves.
Participant observation is a qualitative, not quantitative, method (i.e. based on description, not measurement by numbers), and is culturally and locally specific. It is best used to evaluate things which cannot easily be measured in numerical surveys, e.g. people's feelings, perceptions and understandings.
Mix and match
When choosing an evaluation approach, it does not make sense to assess the effectiveness of one approach in terms of the language and concepts of another e.g. by questioning the sample size used in ethnographic research.
Evaluating most HIV/AIDS health promotion activities will often involve more than one approach, since working on AIDS covers an enormous range of issues. Health educators must not only communicate scientific and medical facts about transmission, but also help people act on this information, by dealing with deep-rooted feelings about sex, sexuality, death and dying, and helping people to accurately assess the risks that confront them. A questionnaire survey, for example, will help indicate levels of knowledge about HIV, but for evaluating changes in sexual 'norms' and expectations, a more ethnographic approach is needed.
In conclusion, it is important to remember that evaluation is no more than a tool for improving and further developing activities already taking place.
Peter Aggleton, Director, Health and Education Research Unit, Goldsmiths' College, University of London, New Cross, London SE14 6NW, UK.
More detailed guidance on these and other evaluation techniques can be found in Evaluating HIV/AIDS Health Promotion, available from: the Health Education Authority, Hamilton House, Mabledon Place, London WC1H 9TX. Price: £12.95 + p&p.
|Urban primary health care|
Building a house of health
Rocinha - a district within the city of Rio de Janeiro, Brazil - is the largest shanty town in Latin America. In 1987, the local health post, built and run by a residents' association, diagnosed its first AIDS case. Now four years later, Rocinha has a well-established AIDS control programme, including free distribution of condoms. Hilary Hughes visited the shanty and discovered a vital, new approach to urban health.
Rocinha provides shelter for over 130,000 inhabitants, living in shacks sprawled up the hillside of Dois Irmos. Almost every room is shared by four people. Most adults are unskilled labourers, non-literate, earning around US$50 a month. The spread of disease - particularly respiratory and parasitic infections - is a constant threat. Sexual violence, broken families, teenage pregnancy, male and female sex work, alcoholism and drug misuse further increase the risk of sexually transmitted infections, including HIV/AIDS.
This poor, urban settlement is luckier than most. The local health post, run by the Residents’ Association of Barcellos District (known as the AMABB health post) provides medical care to over 5,000 families, as well as promoting a community response to major health issues, such as scabies and measles The health post is neither private nor state-owned, but was built by residents (with a grant from Memisa Medicus Mundi) in 1983. Routine health services are now financed by an agency under the Ministry of Health, but the post prefers to remain as independent of state funding as possible, given the crisis of the public health service.
The professional health team consists of five qualified doctors, three doctors on residential training, two dentists, ten psychologists (who run various support groups), two phonoaudiologists, all of whom work with a group of local paramedics or health agents.
The central aim of the professional team is to support local participation in community health. Residents and the local media have helped identify outbreaks of measles, have encouraged health post involvement in caring for those whose houses were destroyed by the rains, and have helped promote a high level of community participation in the post's AIDS control programme.
Quality, not just quantity
The health co-ordinator, Dr Joao Claudio Lara Fernandes, explained the team’s general approach to primary health care (PHC): ‘We do not confuse medicine for the poor, with poor medicine. The predominant thinking in poor areas is epidemiological - that is, stopping the spread of disease at the collective level. In the wealthier areas, the focus is on drugs and laboratory examinations for individuals. In poorer communities, individual care is often sacrificed in favour of collective health.’
‘In Rocinha, we are trying to find a “third way” - providing the best individual care possible, as well as encouraging collective action on the prevent ion of ill-health.’
This approach is reflected in the monitoring and evaluation of activities, which is qualitative (assessing quality of individual care) as well as quantitative (such as measuring the incidence of disease or the numbers of patients consulted). ‘We note down everything we do and the results, including how many patients are referred to other centres, and how many are referred back to our centre.’
The health post resolves over 90 per cent of cases without referring, and requests laboratory examinations in only 30 per cent. In Brazil, laboratories are overloaded with requests for tests, which are first assessed before being carried out - this means results can take up to 2 months. By keeping their own statistical records, the AMABB post was able to show it was the most cost-effective client of Lagoa Hospital laboratory i.e. requests for tests were not made unnecessarily. The AMABB post now sends specimens directly to the technicians, receiving results in 24 hours.
Action speaks louder than words
‘It was the year we had a major scabies epidemic. We did not want to carry out public education without also providing medical care - so in our campaign we treated 2,000 cases. AIDS was our next problem; again, treatment was as important as education. That year, we diagnosed a couple from the north-east who had HIV - related illness. The wife soon died, but the husband, once he was feeling better, stopped coming to the health post. This was understandable - we had tried to refer him for specialised treatment, but the public services had nothing to offer. I saw him walking through the streets, almost daily. How many others were unknowingly carrying the virus? What could we do for these people? It was like watching an epidemic advancing before our eyes. We had to do something, but we weren’t going to do mass education without giving people the means to act. That meant free condoms.’
Co-ordinator, AMABB health post.
Urban primary health care
Building an AIDS campaign
In 1988, one of the Directors of the Resident’s Association asked the health team to provide assistance to a man with AIDS, who had been thrown out of the room he rented and was being ill-treated by everyone. He was a courageous patient who faced his situation with clarity and rapidly established a special friendship with the health workers. Interested, he began to attend regular health meetings. In the process, he raised awareness of HIV/AIDS among some residents who, out of solidarity, decided to build him a new house. The patient died before the house was completed, but not before local people had come to see that AIDS was not an abstract fear, but a concrete reality against which it is possible to fight.
Finally, in 1990, support from the regional AIDS control programme and a charitable foundation guaranteed a regular, free supply of condoms (one condom costs 1 per cent of the average monthly salary of residents) and access to state HIV testing services (results are obtained in one month instead of the usual two or three months).
A knowledge, attitudes and belief survey was then carried out, and a mass education campaign encouraged. Events have included a series of public meetings, a school play, local radio programmes and AIDS Lambadas (a popular form of Brazilian dance). In its first year, the programme cost the post only US$100. Part of this money was raised through a donation of musical records; some were sold and the rest were offered as a prizes by Radio Rocinha in a safer sex quiz.
Members of the health team also underwent specific HIV/AIDS training. Collective action to campaign for more specialised care for those already affected by HIV was also promoted, including a public letter asking the government to provide the post with AZT (an anti-viral drug).
Public education activities are complemented by the inter-personal work of volunteer community educators. As one of the residents explained: ‘In a close community like Rocinha, everything you do multiplies naturally. We decided to ensure the multiplication of the right information - and the use of condoms - through community educators.’ These educators make contact with neighbours, and other individuals (including those with high risk behaviour) passing on information about HIV/AIDS, safer sex, and encouraging registration for free, monthly supplies of condoms. They also refer those interested in HIV testing and counselling to the health post.
Jose Luis (not his real name) is one of the educators. A bisexual with an active sex life, he knew others who had died of AIDS and had come to the clinic wanting a test for HIV. He then disappeared for a few months. Eventually he was able to come back and talk more freely about his fears, which he managed to overcome, through the knowledge that he could protect himself, and others, from HIV. Jose Luis turned his fear into action, deciding to become an AIDS educator. He now regularly makes contact with around 20 individuals.
There are ten peer educators in the programme (six women and four men), with more being trained. All have received at least six hours training. Their ’clients’ each receive no more than 30 condoms per month - to prevent selling for profit.
This system not only ensures targeted distribution of condoms, but also the monitoring of their use. Each educator keeps a simple card-index, including details of client age, sex, sexuality and other risk factors, number of condoms taken and date of last contact. Clients talk openly with peer educators about their sexual practices. Because of this, educators feel confident that if the condoms were not being used for their intended purpose, they would know.
Evaluation has shown that the regular and inter-personal contact made by the educators helps promote sustained behaviour change. By June 1991, 138 people were registered by the educator-client condom distribution service. Of these, only one had dropped out of the programme since its start. In contrast, out of 40 additional people receiving condoms directly from the health post, some 18 had since dropped out of the programme.
Known HIV/AIDS cases
A study of available data on HIV infection in Rocinha (from various sources) reveals a total of 25 cases, male: female ratio of 3:l. The AMABB health post alone has registered (as of December 1991) nine AIDS cases, four of whom have died; four HIV infected patients and have noted additional patients with suspected HIV-related disease. Male: female ratio of HIV-infected patients attending the clinic is 1:1.
The success of the Rocinha AIDS programme is due largely to the pre-existence of the AMABB post: its special commitment to community-level disease control and individual care, combined with its cost-effective approach. As Jacques Schwarzstein, a consultant attached to the programme, points out: ‘The Rocinha health post shows the great potential of the Primary Attendance Units i.e. health centres situated within needy communities which can act as sentry posts and bases from which to implement control programmes. While limiting costs to available state funding, and referring (where necessary) to existing state services, they arguably provide better results than centralised programmes.’
Demand for health services, however, means that the AMABB model must expand or be replicated, in order to survive. Building health posts is not the problem: developing the human resources is, such as more doctors trained in PHC. Many doctors currently lack an understanding of the real needs of patients living in under-resourced communities.
As Dr Fernandes explains: ‘The so-called “patient-doctor” relationship often doesn’t exist. What exists is the relationship between the illness and the doctor.’ In contrast, the Rocinha health post is built on a dynamic relationship between a variety of health professionals, the patient and the wider community.
The Rocinha experience illustrates what can be achieved in urban settings when residents take up action for their own health - supported by a team of professionals committed to addressing poverty with more than just a pill.
Hilary Hughes, AIDS Programme Co-ordinator, AHRTAG
Behaviour change - measured by the community, for the community
Salvation Army AIDS programme experience in Brazil, India and Zambia shows how measuring behavioural change is an integral part of 'community counselling.'
John Mweene is a 'community counsellor' from a kinship-based village in Zambia. He has been chosen to promote discussion and action on AIDS care and prevention.
When asked if he felt his work was successful, he answered: 'Yes, the number of people having sex outside marriage has gone down.' Asked how he knew this, he replied: 'Because the number of assaults have gone down. I am connected to the Chief's Council which decides what to do about assault cases. Most are the result of one man sleeping with another man's wife. Since I have been doing community counselling the number of these assault cases has gone down.'
This is one example of how a community has identified its own way of showing changes in high risk behaviour. This is part of the process known as 'community counselling.'
What exactly is community counselling?
This term was first used in the context of the Chikankata hospital home care programme (see AIDS Action issue 8). It is a process where a community is supported to act assertively and confidently in its own interests - in this case to provide support for those affected by HIV/AIDS and to reduce further spread of HIV.
A 'community' can be defined as: a group of people who may be living and/or working in a particular locality but - more significantly - who share the same felt needs and have a commitment to finding common solutions. It is usually made up of people who share some identity and values, and has its own structure and function, e.g. family units living in a poor urban settlement, who share the same municipal facilities. Communities with which the Salvation Army works include kinship-based villages, commercial farms, and those in industrial towns and poor, urban settlements.
'Counselling' can be defined as: a facilitated process through which a community recognises problems (in this case associated with HIV/AIDS), and becomes willing and able to make its own decisions and find solutions to these problems. It may initially be facilitated by individuals who come from outside the community. Trained health and social workers in Salvation Army programmes are an example, as Roy Mwilu, from the Chikankata programme, explains: 'in two years of community counselling we have had some success in helping communities to clarify the facts about HIV, identify risk activities, and come up with strategies for prevention.' This process involves the community in electing its own 'community counsellors' to continue the process from within.
How does this process start?
Hope is fundamental, since there has to be belief in finding alternatives. This hope may come from within the community, or may be stimulated by outside assistance, by offering practical help, training or other resources. Providing care and practical support for people who are already affected by HIV/AIDS, or who are at high risk of HIV infection, is a vital starting point. This is particularly true if care is visibly provided in the community setting, e.g. in the family home instead of in hospital, or some other form of community centres for example, the shelter and rehabilitation programme for sex workers in Aizawl, India, which provides health screening, treatment and referral.
Care and support helps generate a sense of self worth and confidence. This in turn is a strong motivation among the recipients for taking personal responsibility for preventing further spread of HIV e.g. many sex workers receiving support in Aizawl, then become motivated to educate their friends on the street.
Care provided by a programme does not stop with the clients or patients. As in the Chikankata and Aizawl examples, families and sex workers are affected as part of the wider community. Care helps to stimulate awareness and demonstrates a commitment to non-discrimination against those affected, or at high risk. This may in turn lead to a request for more information about the problem, in context where community members can be helped to find common solutions.
A commitment to measuring, or monitoring, changes in high risk behaviour is a key aspect of community counselling.
The whole process involves:
identifying high risk behaviours occurring in the community (e.g. sex outside marriage) and choosing strategies for prevention (e.g. faithfulness in marriage);
identifying and recording ways of showing that these high risk behaviours are changing (e.g. rate of sexually transmitted diseases among the married, number of assaults due to adultery, rate of divorce, rate of remarriage, and frequency of drinking parties connected with sexual activity. Community counsellors usually need some training in measuring data. Indicators can be measured in fairly simple ways, e.g. by developing standard ways of recording conversations or referring to local government statistics.
The role of the community counsellor is crucial. It is sometimes thought that community volunteers are suitable counsellors simply because they show commitment. But this is not necessarily true. The 'helper' must become the 'facilitator' - the true role of the counsellor is to clarify choices available to people, and their communities. Failing this, AIDS programmes will remain merely 'interventions'. While evaluation data will look impressive (in terms of educational materials distributed, or talks given) the results that really matter will not happen: that is, behaviour change within the community, measured by the community.
Although community counselling may be initially facilitated using skills and training from outside the community, the content is decided by the community. This process not only helps a community decide on behavioural change, but also allows monitoring of that change and a way of sustaining it.
For further information, write to: Dr Ian Campbell, Medical Advisor, The Salvation Army, 101 Queen Victoria Street, London EC4P 4EP, UK.
Educator and activist
Charles Makumi (not his real name) was one of a few African delegates at an international conference for People with AIDS, held in the UK in July 1991. He talked to Chris Castle, AHRTAG's AIDS Information Officer.
What you were doing before you found out you were HIV positive?
I was 25 years old and working as an environmental health technician in Zimbabwe. This means working in community development, for example, controlling disease through improvement of water supplies and sanitation. When it became known in my place of work that I had the virus, it became unbearable.
How did your family react to your diagnosis?
Well, some of them still don't know...but my young brother doesn't worry about it. There hasn't been any change in our relationship.
Did you make any major changes in life after your diagnosis?
I started looking at life, you know, trying to fulfill some of my aspirations, not putting off things and saying I'll do it later. Initially support was lacking, but then I was put in touch with the AIDS Counselling Trust in Harare. I became a very active member of the support groups. It was the Trust who got some funds together for me to attend the fourth international conference for PWAs held in Madrid, 1990.
What effect has attending international conferences for people with AIDS had on you?
The attitude of people with HIV and AIDS wanting to get involved, being able to support each other, being involved in campaigning has given me quite a different image to the 'AIDS kills, AIDS equals death'; images I had been surrounded with.
How do your experiences in Zimbabwe compare to those in Europe?
In Zimbabwe, there is not much discussion on sexuality [i.e. around hetero or homosexuality] because in general Africans believe men and women are heterosexual. Gayness [men having sex with men] might exist in Africa in some situations but women who have sex with women are unheard of.
But gayness is not as open in Africa, is it? You wouldn't see two men holding hands, or there wouldn't be a gay bar, for example?
In our situation, there is nothing wrong about men holding hands, or hugging, it's never associated with sexuality - just that they feel close.
So before you came to Europe the first time, were you prepared for discussions about homosexuality, were you shocked?
Yes, I was shocked. But...it was good in that it stopped me from being judgmental. I learned to take things as they are. There was also a lot of respect for my sexuality - as a heterosexual man, married with two young children.
What did you do with your new increased awareness when you re-turned from Madrid to Zimbabwe?
I became more actively involved with the AIDS organisations. For example, I am currently working to change AIDS information messages from 'AIDS kills' to 'AIDS makes you suffer'. I also facilitate AIDS awareness sessions, as a person with AIDS.
So, in a presentation you say, 'I am a person with AIDS? '
I tell people in selected situations, in a way that I can control. Where their doubts, and confusion, can be dealt with. It really personalises the AIDS problem, helps people to believe when somebody is standing there, saying, well I have it...
If you could take a message to other PWAs in Africa, what would your message be?
Think positively! There is a lot more to life than ending it with HIV/AIDS.
For further information on PWA support groups worldwide, write to AHRTAG.
AIDS action Issue 16 7 Page 8
Publications / Letter
This book tells the story of Noerine Kaleeba - of how her husband died of AIDS, how she found the courage to deal with this, and how this led to her founding the AIDS Support Organisation (TASO) in Uganda, which now provides over 6,000 people with HIV/AIDS and their families with counselling, information, medical and nursing care and material assistance. A collaborative publication, copies available from the Women and AIDS Support Network (WASN) Zimbabwe and TASO, Uganda. Price: within Africa US$5, outside Africa US$10. Write to: WASN Book Project, c/o PO Box HG 54, Highlands, Harare, Zimbabwe.
I was encouraged to read about work among male sex workers in issue 15, AIDS Action. In Morocco most of these men are looking for sex regardless of money, driven to streets and cafes because there is no other way to find other gay men; if discovered, they are scorned by their families. In this atmosphere, how do you begin a conversation? The solution lies in Mr. Longo's method in Brazil. You have to attract the people you want to talk to. [Our project] showed prevention work is possible; one of the men contacted wanted to continue the work himself - making sure others stay alive and healthy.
R. Neal, Peace Corps, Morocco.
Managing Editor: Kathy Attawell
Executive Editor: Hilary Hughes
Production: Katherine Miles
Editorial advisory group: Calle Almedal (Norway), Professor E M Essien (Nigeria), Professor K McAdam (UK), Dr A Pinching (UK), Dr P Poore (UK), Barbara Wallace (UK), Dr M Wolff (Tanzania), Guest advisor: Dr P Aggleton (UK).
With support from HIVOS (Netherlands), ICCO, Memisa Medicus Mundi, Misereor, Norwegian Red Cross, Oak Foundation, ODA, Oxfam, Save the Children Fund, SIDA and WHO/GPA.
The International Newsletter on AIDS Prevention and Care
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