Franz Trautmann, NIAD, Utrecht, The Netherlands
Peer support - Dutch experiences with AIDS prevention by drug users for drug users
The work of drug user self-organizations
Peer Support in the field of AIDS prevention for drug users in The Netherlands has been based on work of already existing autonomous drug user self-organisations. These organisations started to emerge in the early seventies and reached their peak in the early eighties. `Autonomous' does mean here that these self-organisations were and are independent from professional institutions. The Junkiebonden - as for instance in Rotterdam - are a well-known example of this. There have also been initiatives where drug users and ex-users, professionals, doctors and social workers, parents of drug users and people that were just interested in the drug problem have worked together. The MDHG, the Amsterdam interest group of drug users, formed in 1974, is such an organisation (Mol/Trautmann 1991).
The central feature of these self-organisations, which are loosely based on the concept of a (trade) union, has always been that of representing the interests of drug users. Consequently political issues have played a prominent role in their work. In this context it has been a point of discussion whether to call themselves a self-help group or an interest group. Especially the so-called `junkiebonden' have lain strong emphasis on being an interest group and not a self-help group. Using the term `self-help' implies acceptance of the illness-paradigm, which is the ideological base of most of the helping institutions. So by calling themselves 'a self-help group' drugusers (according to the junkiebonden) accept the view that they are sick and need help `to cure their addiction'. (For psychologists this could be a clear case of `over-adaptation' or 'subjection to the aggressor'.) However, one should not neglect the fact that the work of interest groups always contains an element of self-help in the sense that people who join are motivated to re-estimate their situation. Being an active member of an interest group is for many drug users a positive experience enabling them to assess their abilities and to foster their self-esteem.
The political aim of self-organisations is clear: a drug policy based on decriminalisation and normalisation. That means that besides strategies for adequate and accessible drug programmes strategies must be developed against the present policy of criminalisation. The programme of self-organisations is based on the view that a repressive drug policy, as defined by criminal law, is regarded as a fundamentally inappropriate approach to the drug problem. In their view a repressive drug policy can be held responsible for the main part of what is called the 'drug problem'.
Besides these more general political aspects AIDS has become a prominent issue in the work of interest groups. One example is the syringe exchange which was an idea of MDHG and was initially, in 1984, carried out exclusively by MDHG. The drug aid services at the time refused to carry out the syringe exchange, afraid of supporting instead of discouraging drug use. By 1981 the Rotterdam Junkiebond had started to distribute syringes on a small scale, not with the aim to reduce the risk of HIV infection, but primarily to prevent the spread of hepatitis. This and other initiatives were important to make safer use an issue among drug users. It had in itself a peer support or peer education effect. Giving out syringes and needles meant drawing attention to the risk of HIV/AIDS and to the importance of safer use. It stimulated drug users to talk about these issues, to ask questions, to be frank about their fears, etc. Besides the need for information these emotional aspects have played an important role at the beginning of the AIDS epidemic. Drug aid services were (and sometimes still are) not able to deal properly with these problems.
In response to this the MDHG published a booklet with the title 'Positief verder', which can best be translated as 'Going on positive' (Brandsma 1989). In this booklet the experiences of HIV-affected drug users are described and information is given for HIV-affected drug users, family and friends, helpers and drug service workers.
Self-organisations also act on a political level. Various activities have been undertaken to force the responsible authorities to realise adequate facilities in the field of AIDS prevention and care, for example a 24 hours/seven days' a week syringe distribution.
Peer Support projects in The Netherlands
This work of drug user self-organisations has led to an acknowledgement of their contribution to the approach of the drug and AIDS problem, which has resulted in financial support from the Ministry or local authorities for some of their activities. In recent years attention has been paid by the Ministry and some drug aid agencies to peer support as a AIDS prevention method. There are several reasons for this. One has been the finding that such interventions to encourage peer support as a means to subcultural change in IDU communities can be effective in reducing risk behaviour. Inside information, knowledge from personal experience and trust are important features. Another reason has been the finding that AIDS prevention carried out by drug aid services has not been an overall success. There are still drug users who lack information, who simply are not reached by a drug aid programme or refuse to be reached due to - among other things - feelings of distrust. It is this distrust, which makes peer support a worthwhile attempt to get in contact with drug users who cannot be reached by drug aid institutions.
There are four of such peer support projects supported by the Ministry and some drug aid agencies:
* the No-Risk Project
The No-Risk Project in Deventer, a city in the eastern part of The Netherlands was developed by a (low threshold) drug aid agency and a user self-organisation. The project was run by an AIDS prevention team of (ex-)drug users in the period from June 1990 till June 1993.
An average of three to five (ex-)drug users worked - as full paid employees or as freelance staff members - in this project. One of them co-ordinated the office-work. His work did not only include organisational and administrative matters, for the office also served as a place where syringes were distributed or exchanged and other paraphernalia, such as containers for used syringes and condoms. All these things were supplied to drug users free of costs. At the office drug users also could and did come along with questions about HIV and AIDS and for more personal talks.
The other workers did outreach work to get in contact with drug users on the streets and at other meeting points. Special attention was paid to drug users who had not been reached by drug aid agencies and to young people starting or experimenting with (intravenous) drug use. These target groups got information about safer use and safer sex, about the work of the project, about the fact that condoms, syringes and other paraphernalia were available at the office, etc. For specific problems drug users were referred to regular aid institutions.
Besides this outreaching work drug users were invited to attend a three days training course organised by the staff of the project. Main topics in these training sessions - for groups of five persons - were knowledge about and attitude towards safer use and safer sex. An important aim of these trainings courses was how drug users could pass on the knowledge they had acquired in the training course and how they could influence their peers towards safer behaviour. (Dam 1991; Trautmann 1992).
* the Model Project `AIDS prevention for and by prostitutes'
In Nijmegen, a city in the South-Eastern part of The Netherlands, a similar project started in December 1991 for the period of one year. In this project the main focus was on AIDS prevention for (drug using) sex workers. Two sex workers with drug using experience had been trained to counsel other sex workers about safer sex and safer use. Both sex workers had been members of the staff of a drug aid agency. One of them who had worked on the streets focused on outreach work for her peers on the street, the other one, who had worked in sex clubs, focused on sex workers working in clubs. Here, too, special attention was paid to those not reached by drug aid agencies (Kersten 1993; Beer/Trautmann 1993).
* the `Boule de Neige' Project
The `Boule de Neige' (the French expression for snowball) project is a common endeavour of drug aid services in the so-called `Euregio', i.e. the region in the Belgian-Dutch-German borderland. Services in six cities (Aachen in Germany, Hasselt in Flemish Belgium, Liège in French Belgium and Maastricht, Heerlen and Sittard in The Netherlands) take part in this project which started in 1991. Based on the experience of the Belgian `Boule de Neige' project, - started in 1989 - in Brussels, Charleroi and Liège (CCAD ...) key people with knowledge of the drug scenes in the `Euregio' - so-called `animators' - were recruited to contact drug users who could work as semi-professional `jobists'. The task of these `jobists' is not only to encourage safer use and safer sex among drug users but also to "administer the questionnaires collecting information on knowledge, attitude and behaviour concerning AIDS among the target group" (Kaplan a.o. 1993). These questionnaires serve as material for a survey on the actual `state of affairs' and are a basis for adequate policy development. The `jobists' are paid for their work on basis of a well-defined contract. Following a training course (with information about the project, safer use, safer sex, AIDS in general, etc.) is a prerequisite to be recruited as a jobist (Penners 1992).
* the Project `Drugs, Health and AIDS' (DGA Project)
This project, started in 1992, is an initiative of the MDHG and was the result of previous AIDS and drug use related activities of this drug user interest group. Main object in this project is to pay attention - from an interest group point of view - to the health situation of drugusers in general. So, AIDS prevention is not the only objective of this project. The central task of the project is to initiate and support drug user self-organisations in two cities (Utrecht and Rotterdam) by using the expertise the MDHG has built in recent years with their work in Amsterdam. Major elements of their expertise are the mobilisation of drug users and networking. (Otter a.o. 1993; Trautmann 1993) Important steps taken in the DGA project were: introducing the MDHG and (the idea of) the project to the scene, making contact with drug users in the street, identifying drug users interested in starting a self-organisation, identifying issues relevant to the work of an interest group in the field of general health, which may be an incentive to further commitment of drug users, etc. Examples of motivating issues were e.g. criticism of the methadone treatment and the syringe distribution. Since the beginning of 1994 this project is continued as a national platform of support for local and regional drug user initiatives and organisations.
Similarities and differences
There are important similarities and differences between the four projects described above. Peer support is the main point of agreement. Furthermore, the main work of these projects is based on outreach work. The workers are trained in counselling skills, peer education and peer support, outreaching work and basic knowledge about HIV and AIDS. In Deventer and Nijmegen the workers attended the same training courses drug aid professionals attended. This point can be important as an acknowledgement of the professional status of the workers. In the `Boule de Neige' and the DGA project a specific training course was developed.
The projects in Deventer and Nijmegen are based on already existing forms of co-operation between professional drug aid agencies and active or ex-drug users. The aim of both these projects, besides AIDS prevention, was to contribute to the social rehabilitation of the employed drug users. That meant to stimulate and support them in their efforts to lead a life according to their needs and aims, for instance in the field of education, housing and personal problems.
The main difference between the projects in Deventer, Nijmegen and the Euregio on the one hand and the DGA project on the other hand is the fact that the first three are embedded in professional drug aid agencies, whereas the latter is carried out by an interest group. Drug users and ex-drug users involved in one of the first three projects are (have been) working on behalf of a professional drug aid agency. Which means that their influence on AIDS prevention policy is limited compared to the influence drug users working in the DGA project have.
The form in which this incorporation in a professional organisation is realised, however, can vary, as these projects show. The No-Risk Project was a relatively autonomous project which was linked to a professional organisation only for reasons of efficiency and organisational support (less expensive overhead costs, etc.). That meant that the team - solely ex-drug users and drug users - could operate as a more or less independent unit. Decisions about the team policy were made by the members of the team. In Nijmegen the two prostitutes were members of a drug aid team. That means, on the one hand, that their work was more integrated in the professional drug aid network but, on the other hand, that their influence on the policy of the organisation was more limited than that of the employees of the No-Risk Project.
Possibilities, problems and choices
The experience with these projects shows that there are different ways to work out the concept of peer support and that there are a number of aspects which need to be thoroughly discussed in view of its future development. It seems worthwhile to sum up some of the preliminary findings to get a better view of the possibilities and problems of peer support.
- autonomy versus integration
One main question at the centre of the discussion on the subject is that of the choice between peer support by autonomous self-organisations of drug users or by (embedding peer support in) professional drug aid agencies. Although AIDS prevention is in the interest of the drug aid agencies (representing the community's interest in health care) as well as the drug users themselves, this common interest does not mean that a 'joint venture' is the most appropriate approach.
Due to different local situations and different views, different choices have been made whether to embed peer support in professional drug aid agencies or not. There are good reasons for employing drug users within professional organisations:
- * To assure the continuity of the projects. The experience with self-organisations of drug users has shown that most of these initiatives are of a limited duration. The way of life of drugs users - for an important part due to the criminalisation - often appears to interfere with a long term commitment to a job.
* To offer professional support to the drug users involved, on a organisational as well as a personal level, the latter e.g. in the form of knowledge about methods, organisational matters, etc.
* By embedding these projects in professional drug aid agencies the expertise of drug users (about drug use techniques, social values, attitudes, etc.) can be made useful within professional organisations. Employing drug users also means acceptance and acknowledgement of them as competent members of society.
* Employing drug users within a professional organisation can be helpful to getting in contact with drug users who are distrustful of drug aid institutions.
There are, however, also good reasons for choosing for the option of an autonomous organisation:
- * The distrust of many drug users of drug aid services, which cannot simply be taken away by employing drug users. One of the reasons for this distrust is the sometimes negative attitude of professionals towards the contribution of drug users. Another reason is that the interests of these agencies differ sometimes from the interests of drug users. A main issue here can be the question whether or not drug use is accepted by drug aid workers. AIDS prevention in the sense of discussing personal matters such as using drugs and having sex requires trust. For an active drug user it might be difficult to talk frankly about his way of using drugs with a professional who does not accept drug use.
* In view of this possible distrust there is a certain risk that drug users working for drug aid agencies too will not be trusted by their peers, who might regard them as 'traitors'.
* In a situation where drug users are employed by a professional drug aid service, they often have little say in the way they want to work and their influence on the AIDS prevention policy of the service is often quite limited. This may have a negative effect on the motivation of the workers and - once again - cause feelings of distrust. After all, there is a certain risk that drug users employed by a professional organisation, are or see themselves as simply being used as a `means to an end' (to reach the `unreached') or even as an alibi.
* Within the framework of a professional organisation the possibilities to criticise for instance the policies of regular aid services may turn out to be quite limited.
* Professional organisations can be less flexible regarding necessary adaptations of their work to the demands of peer support. To co-operate with drug users it might, for instance, be essential to limit the work not only to the usual 'business-hours'.
- paid or unpaid work
The question of payment comes along with the topic of autonomy or integration: Should drug users get paid for peer support or not. On the one hand there is the argument that the work they perform is in the general interest of public health. Since health workers get paid for their work, why should drug users not be paid for the same work. On the other hand it could be argued that peer support is in the interest of drug users themselves. So why drug users get paid, when work of other interest groups is not paid.
A possible solution could be to pay drug users for their peer support activities only, when they work within the framework of a professional organisation. For it is the organisation that then decides to employ a drug user to perform (part of) its AIDS prevention task.
However, this does, or, should not necessarily mean that AIDS prevention work of drug user self-organisations should be discarded. Peer support from within the scene can be very effective as an intrinsically motivated answer to the AIDS threat. To enable and encourage the work of drug user initiatives support - at least in the area of requirements for running an organisation - should be taken into consideration. There can be no doubt that drug user interest groups are in need of financial backing to be able to pay, for instance, for an office, office material, telephone, stamps, etc.
The experience of different self-organisations in The Netherlands shows that not only financial support, but also professional (training - in knowledge, methods and attitudes - and supervision of the workers) and organisational (team structure, etc.) support can be helpful. This external support - on different levels - is important for the continuity of the drug user self-organisations. It is important to keep in mind that this support should not interfere with the contents of work of the self-organisation.
Regarding the aspect of payment one should not overlook the fact that paying drug users for peer support can have both positive and negative effects. It can undermine their credibility in the sense that drug users who get paid for their prevention work are no longer regarded as being trustworthy by their peers. Their position has changed. On the other hand payment can be of importance for reason of continuity. Payment can also be seen as an acknowledgement of drug users as competent and professional workers.
- `pure' versus `mixed' model
Another important decision to be made is the choice between working only with active drug users or with drug users as well as ex-users. Those in favour of the first alternative - e.g. Anne-Lise Middelthon of the National AIDS Control Programme in Norway - argue that `if you want to change a culture from within, you have to be on the inside. Ex-drug users are normally not part of the drug culture anymore. If they are, there is a danger they may not be regarded as trustworthy. There is also a danger they might be presenting themselves as a superior kind of drug user, or seen as doing so by the drug users, and thus creating a gap between themselves and those currently using drugs.' (Middelthon 1993, p. 15)
However, within the Dutch projects this negative aspect of involving ex-users has not been reported. On the contrary, ex-users generally seem to be well accepted. To some extent they can serve as a kind of role model for drug users. What seems to be crucial here is the attitude of the ex-users towards drug use in general: do they accept it or reject it. If they feel a better human being than active drug users or even despise them, as some ex-users do after therapeutic treatment in trying to protect themselves against a possible relapse, it is evident that they do not fit in the self-organisation we have discussed here.
However, if ex-users are involved, their position or role should be made clear. For the sake of continuity one could say that ex-users - naturally on condition that they accept drug use - should play the role of peer leaders. Although there are examples of projects which have been quite successful in this respect (e.g. the No-Risk Project in Deventer), this aspect has to be subjected to serious discussion (Trautmann 1992).
The aspect of substitution by methadone or other substances cannot be ignored in the light of the so wished continuity. In Germany, in the case of JES (the organisation of Junkies/Ex-users/Substitutees), substitution is seen as the prerequisite for the existence of this self-organisation. Drug users involved state clearly that without substitution they never would be able to do the job. However, the influence of substitution can also be negative. In The Netherlands it is sometimes argued that substitution lessens the motivation of drug users to assert their interests.
- exclusive focus on AIDS prevention
Then there is the question whether a project or organisation should focus exclusively on AIDS prevention. There is reason to doubt that such an exclusive orientation will be very effective in the long run. For peer support to be effective it is better to incorporate the AIDS prevention message in a broader framework of drug users' subculture (for instance in the form of a general interest group) (Friedman 1993). Within the framework of an approach based on social influence of the drug users' subculture a `lifestyle' approach (as developed by Mainline in Amsterdam) can also be effective. Mainline publishes a magazine in which the AIDS prevention message and general information on health for drug users is incorporated in a 'life-style' formula (Boomen 1993).
- personal - political aspects
For a project to function well it obviously has to be `attractive' for drug users to join in. Exclusively focusing on AIDS prevention is not likely to fulfil this requirement. Experience at the MDHG, for instance, shows that very simple things are important for people to come along and get involved in the work. One aspect is that people feel at ease. It is important to create a place where people drop in, get coffee or tea, have a chat or a rest, and get the chance to see what is going on, etc. It is important to give people personal attention. This point is sometimes easily ignored, because of all the work that has to be done. Personal attention can be given in the form of asking how things are, listening to personal stories, showing concern for personal problems, etc. Personal attention is also important as an acknowledgment of someone's work and expertise.
In order to motivate drug users to participate actively in a group or a project it is important for them to have the possibility to influence the policy of the organisation. In other words: the organisation must have a democratic structure. This point has sometimes been a problem in self-organisations, because initiators of these groups are usually strong personalities who find it hard to accept the majority's points of view. Thus, a strong `leader' is not always an advantage to a drug users' group.
Finally, a crucial step in case of a self-organisations to get people involved is undertaking concrete (political) actions. People will then see that it is worthwhile to stand up for their own interests. What action should be taken depends on the actual situation, the aims and needs, etc. Essential features of actions are co-operation and innovation (not again the demonstration in the streets, or the dull writing of letters to politicians).
A good choice of objectives is of vital importance. It is my experience that it is difficult to find a middle course between long term and short term objectives. To concentrate on political struggle, pursuing long term aims such as normalisation or even legalisation only is not enough. These matters are too abstract, too far removed from the daily life of a lot of drug users.
Finally, there is the question of the effect of peer support. Although there is a need for thorough evaluation, not much has been done in this respect in The Netherlands up till now. One reason for this is lack of money. The budget of the peer support projects in Deventer and Nijmegen and that of the DGA project did not allow for an adequate outcome evaluation. In these three cases, however, a process evaluation and a description of the methods used was carried out. (Kersten 1993; Beer/Trautmann 1993; Trautmann 1992). (The process evaluation for the DGA project is still in the making (Trautmann 1993).) However, on basis of registration forms and a number of interviews with people from the target group in these projects at least an indication can be found as to its effectiveness.
In general their is no reason to doubt that peer support does contribute to adequate AIDS prevention with drug users. As with other peer support experience the social influence on the attitude of drug users to safer behaviour, on the one hand, and self-efficacy by role modelling, on the other hand, seem the most important features. This means that giving social information is more important than providing mere facts. Being familiar with the group norms and being trustworthy in the eyes of drug users also serves as a basis for peers to get reliable information about risk behaviour. Elements of factual knowledge which have proved to be important refer to details (e.g. infection risk by sharing the spoon or the filter).
I would like to make a last remark about research methods that are suitable for this type of subject. It should be kept in mind that the influence of drug users on their peers in quantitative terms is hard to measure. (It is questionable whether quantitative research only would make sense in this kind of project.) More qualitative research (field observation, interviews with drug users, etc.) could provide useful material for the authorities who are interested in `new' ways of AIDS prevention as well as drug aid services and self-organisations.
Epilogue: The European Peer Support Project
The Dutch National Institute for Alcohol and Drugs (NIAD) in Utrecht has been involved in the methodological support of (the first) three of the peer support projects named above. Because of the generally positive experiences with a peer support approach the NIAD has started in October 1993 - with financial support of the Commission of European Communities - a European Peer Support Project ('Encouragement, development and support of AIDS prevention by peer support in intravenous user communities') (Trautmann/Barendregt 1994).
The aims of this project are:
- * to encourage, develop and support professional drug aid services and organisations and networks of drug users to extend peer support strategies, especially in the field of AIDS prevention with the aim of reducing risk behaviour;
* to develop methods as skill (safer use and safer sex) training courses for (intravenous) drug users, resulting in training-courses on the spot for peer group leaders in various countries (aiming at a snowball effect) and a training manual;
* to use the expertise in this field, developed in Germany, The Netherlands and the United Kingdom, paying special attention to countries in Southern Europe, i.e. Italy and Spain, and France.
The training course (as well as the manual) contains three elements:
- * the subject of the safer sex- and the safer use message (risks of infection, how to inject as safely as possible, alternatives for shooting up, how to use a condom, etc.);
* methods of delivery (outreach work, training courses, etc.);
* organisational aspects (how to start a self-organisation, how to find professional support, how to set up a local network, etc.).
The manual will and published in October 1994. It be available in Dutch, English, French, German and possibly in Italian and Spanish, too.
For information the author can be contacted.
Beer, M. de, Trautmann, F., Het Modelproject 'Aidspreventie voor en door prostituées': 'peer support als methode'. Utrecht (NIAD) 1993.
Boomen, I'm looking for my Mainline, in: National Committee on AIDS Control, Encouraging peer support for risk reduction among injecting drug users. Amsterdam/Utrecht (NCAB/NIAD) 1993, p. 32-38.
Brandsma, R., Positief verder ... Ervaringen van seropositieve druggebruikers. MDHG, Amsterdam april 1989.
CCAD (Comite de concertation sur l'acool et les autres drogues de la Communauté française de Belgique), "Snow Ball", z.j.
Dam, T. van, Het verloop van de training. Deventer, 8 april 1991.
Friedman, S., Going beyond education to mobilizing subcultural change, in: National Committee on AIDS Control, Encouraging peer support for risk reduction among injecting drug users. Amsterdam/Utrecht (NCAB/NIAD) 1993, p. 4-13.
Kaplan, Ch., Mercera, B., Meulders, W.A.J., Penners, G., Bieleman, B., The `Boule de Neige' Project: Lowering the Threshold for AIDS Prevention among Injecting Drug Users, in: The International Journal on Drug Policy, Vol 3, No. 4, 1992, p. 170-175.
Kersten, S., Eindverslag Modelproject van het Netwerk Prostitutie Nijmegen. Nijmegen (SDN) 1993.
Middelthon, A.-L., Drug users as partners in HIV-preventive work, in: National Committee on AIDS Control, Encouraging peer support for risk reduction among injecting drug users. Amsterdam/Utrecht (NCAB/NIAD) 1993, p. 14-22.
Mol, R., Trautmann, F., The liberal image of the Dutch drug policy - Amsterdam is singing a different tune, in: The International Journal on Drug Policy, 3, 2, 1991, p. 16-21.
Otter, E., Dam, Th. van, Mol, R., Project Drugs, Gezondheid en AIDS. Werkplan 1992/1993. Amsterdam (MDHG) 1993.
Penners, G., Evaluatie-rapport Aidspreventie-project "Boule de Neige", Euregio. Maastricht (CAD Limburg) 1992.
Trautmann, F., Het Aidspreventie-project 'No-Risk': 'peer support' als methode. Utrecht (NIAD) 1992.
Trautmann, F., Procesevaluatie van het MDHG-Project 'Drugs, Gezondheid en AIDS' (draft). Utrecht (NIAD) 1993.
Trautmann, F., Barendregt, C., The European Peer Support Project `Encouragement, Development and Support of AIDS Prevention by Peer Support in Intravenous Drug User Communities'. Interim Report. Utrecht (NIAD) 1994.
This article focuses on the Dutch experiences with peer support in the field of AIDS prevention for drug users. Not only professional drug services have been active in this field. Autonomous drug user self-organisations have played an important role, too. Besides a description of four experimental projects the focus is on a discussion of similarities and differences, of possibilities, problems and choices occurring in these projects.
Franz Trautmann, member of staff at the NIAD, Project `AIDS and drug use', has worked before in different drug aid services and been involved in the work of drug user interest groups.
NIAD, P.O. Box 725, 3500 AS Utrecht, The Netherlands, * 31 - 30 - 341300