Barriers to drug service access by minority ethnic populations in the European Union and how they can begin to be dismantled

Jane Fountain, Jagjit Khurana and Susan Underwood

Abstract

Across the European Union, there are common barriers to drug service access by members of minority ethnic communities: lack of cultural sensitivity by the service, distrust of confidentiality, language, a lack of knowledge of drugs and drug services by members of these communities, stigma, and the failure of drug services to target minority ethnic drug users. Fortunately, there are some initiatives throughout the European Union that are success-fully engaging minority ethnic communities in needs assessments. The Com-munity Engagement Programme in the UK is one such example. This project trained and supported members of minority ethnic community organisations to conduct drug service needs assessments in their own communities in or-der that barriers to drug service access can begin to be dismantled. Al-though the research and needs assessment reports were an important out-come of this project, of equal importance was the process of building the skills and capacities of the individuals and community organisations in-volved. This paper focuses particularly on the support needs of the commu-nity organisations, arguing that, with support mechanisms in place, commu-nity members can conduct effective and far more relevant research into their needs than traditional needs assessments conducted by external researchers.

1. Background

This paper begins by reporting on the results from two major research projects conducted in 2002 by the Centre for Ethnicity and Health at the University of Central Lancashire in the UK. The first was a review of the knowledge base of drug use and the related service provision amongst Black and minority ethnic populationsl in England [1]. The second was conducted on behalf of the European Monitoring Centre for Drugs and Drug Addiction (EMCDDA), with the aims of collecting data on the drug use amongst minority ethnic populations throughout the European Union (EU) and Norway, and examining the consequences and correlates of the situation [2].

2. Methods

For the literature review on the lcnowledge base in England, a thorough search was conducted in order to identify relevant publications. Almost 150 academic joumal papers, articles in relevant 'trade' magazines, re-search and conference reports, and book chapters were reviewed. Many of these documents can be defined as 'grey literature' (research reports and commentaries not published in peer-reviewed journals) much of which has used qualitative research methods and has often been con-ducted by those with unique access to the minority ethnic community un-der investigation. Whilst individually, some of this research may be lack-ing academic rigour, collectively, over the last fifteen years, grey literature has produced largely consistent, valuable snapshots of drug use and the related drug service issues amongst minority ethnic groups.

An overriding influence on the choice of method to collect data for the EMCDDA project was that the existing knowledge base is extremely sparse: drug use amongst minority ethnic groups in the European Union (EU) is an under-researched and under-reported issue. Therefore, the aim of this study was to collect as much information as possible, from as many sources as possible, and synthesise it order to construct the founda-tions of an overview and to identify issues for further research. The methods are described in detail elsewhere [7], but in summary, question-naires based on the information already available to EMCDDA [3] were constructed for each of the 15 EU countries and Norway. Potential infor-mants were identified from a range of disciplines, not necessarily directly concerned with drug use. A total of 1,122 questionnaires were distributed and the response rate was 1 in 3.5 (322). The study yielded valuable information from those contacted, and made it possible to construct an overview of drug use amongst minority ethnic groups in the EU (com-prising 15 member states at the time of the study) and Norway and the re-lated service provision. However, it should be repeated that the study was only the first stage in investigations that should, ultimately, aim at pro-ducing comparable data across the member states (now totalling 25) by the use of more rigorous data collection methods.

3. Results

A thematic analysis was performed on the data collected for the two stud-ies, according to the themes that most consistently arose. Common to both was the finding that minority ethnic drug users are under-repre-sented as clients of drug services (ranging from clinical treatment to drugs education) and that members of these populations face many barri-ers to accessing the services. The analysis identified the main barriers as a lack of cultural sensitivity by the service; a distrust of confidentiality; communication problems because of language; a lack of knowledge about drugs and drug services; the stigma surrounding drug use within some minority ethnic communities; and the failure of drug services to target these communities. This paper presents an overview of the evi-dence on the existence of these barriers and comments on an innovative method by which they can begin to be dismantled.

3.1. Lack of cultural sensitivity by the service

A lack of cultural sensitivity by drug services was specifically noted as a reason for their lack of uptake by various minority ethnic groups by some informants from almost every country across the EU. Examples include the lack of consideration of the significance of the family in some minor-ity ethnic communities, and how drug users' families could be incorporated into drug treatment programmes. For instance, in the Netherlands drug workers thought that not including families in treatment pro-grammes was one of the reasons for a high drop-out rate of minority ethnic clients, and to support this, it was reported from Portugal that Gypsy drug users are much more receptive to family, rather than individual, therapy.

Other examples of the implications of cultural sensitivities include that some minority ethnic groups in Sweden attach stigma to seeking any help from social services, but especially for drug use; in the UK, that Turkish, Turkish Cypriot and Kurdish people are not familiar with the concept of counselling, and counselling may not be acceptable to South Asians, who see it as an intrusion into their pri vacy; and, in the Netherlands, that male drug users from some minority ethnic groups are ashamed to accept help from a female drugs worker.

One of the components of cultural sensitivity in drug services is the eth-nicity of their staff, and this was noted in the Netherlands, Norway and the UK. However, in the UK, the ethnicity of drug workers has been shown to be a more complex issue than simply employing those who are from the same ethnic group as clients and potential clients. The complex-ities include that it should not be assumed that clients want to see a worker from their own ethnic background: in some cases, this would ac-tually be a barrier to access because feelings of shame would be ampli-fied. It was also reported from the UK that this strategy has not been a success where minority ethnic drug workers have been employed on short-term contracts and expected to single-handedly attract all members of their ethnic group to the service or to be culturally-sensitive to the needs of every non-white client, without appropriate and adequate sup-port, and without their work being embedded into planning and opera-tional structures.

3.2. Distrust of confidentiality

The second barrier to drug service access by minority ethnic drug users is the fear that services will not maintain the confidentiality of their clients. This was given as reason for the under-representation of minority ethnic drug users in drug services from Finland, the Netherlands and the UK. A distrust of confidentiality is a particular problem for illegal immigrants who, obviously, do not want to come to the attention of 'official' institutions. It was noted from the UK that, in some minority ethnic communi-ies, the concept of confidentiality is simply alien.

3.3. Language

Language as a barrier to drug service access was noted in relation to the Turkish community in Belgium, Russians in Finland, Chinese in Italy and minority ethnic groups generally in the Netherlands and the LTK. Ob-viously, communication is a problem if drug service workers do not speak the same language as their clients, but it would be impossible to have translators on hand for every language and their dialects spoken in a particular area: in one district of London, for instance, it has been calcu-lated that 193 different languages and dialects are spoken.

The choice of translators needs careful consideration. It has been re-ported from the UK that there are many instances where a members of drug users' families have been used as translators for drug services, and in some cases these translators have been children. A translator for a drugs service should have some knowledge of drugs, drug services, and the related issues, or problems discussing concepts and technical terms may arise. From the UK, a simple example of the value of this is that, in Urdu, there are no words for 'oral sex' and when this was translated (in the context of HIV prevention), the client was told that talking about sex meant they risked contracting HIV.

Another consideration is that, despite good intentions, simply translating existing leaflets about drugs or drug services into another language may be ineffective, because the target minority ethnic audience cannot read their own language.

3.4. Lack of knowledge about drugs and drug services

The lack of knowledge about drugs — including a recognition of problem-atic drug use — was reported as a barrier to drug service access for some minority ethnic groups in the Netherlands, Spain and the UK. Of course, this lack of knowledge is not exclusive to minority ethnic groups.

A lack of knowledge about the process of accessing drug services and what the services actually do was reported amongst minority ethnic groups generally in the Netherlands and the UK, and amongst Black Af-ricans in Spain. This situation is not only a barrier to drug service access, but also leads to unrealistic expectations by those who do access services, who may believe that drug problems can be quickly 'cured.' It was suggested from some informants from the Netherlands and Norway, for example, that these unrealistic expectations were responsible for a high drop-out rate amongst minority ethnic clients.

3.5. Stigma

The failure of minority ethnic drug users and their families to admit to a drugs problem and ask for help from drug services because of the associ-ated stigma was reported from all the EU countries and Norway, espe-cially amongst the Roma / Sinti in Austria and Germany; Moroccans and especially Turkish people in the Netherlands; Gypsies in Portugal and (especially if the drug user is female) in Spain; Iranian males in Sweden; and amongst several minority ethnic groups in Norway and the UK.

3.6. The failure of drug services to target minority ethnic drug users

In some EU countries, establishing a service for a particular ethnic group is constitutionally forbidden — for example, in France and in Portugal. In other countries, the issue of cultural diversity appears to be barely ad-dressed in relation to drug services — in Germany, the Netherlands, Spain, and Sweden, for example. Nevertheless, there are examples of good prac-tice throughout the EU, including in those countries listed above.

Another aspect of the failure of drug services to target minority ethnic groups is that some attempts have been made, but failed, due to inade-quate needs assessments. Traditional needs assessment processes do not involve the communities whose needs are being assessed, beyond using members as interviewees. The needs assessment often benefits the re-searcher more than the community whose needs are being assessed: the (usually white) researcher 'parachutes' into the community, asks about drug-related needs, thereby raising expectations that there may be some change, then disappears to produce a report and academic papers with no long-term impact. Some minority ethnic groups have experienced this process many times, with the result that they may be reluctant to co-oper-ate in the future. This is succinctly pointed out by Hall [4]'

I have a reluctance about entering once again into what seems to me a terribly familiar and recurring cycle. The cycle goes something like this. There is a problem that is followed by a conference; the confer-ence is followed by research; the research reinforces what we already know, but in elegant and scholarly language, Then nothing happens.

4. Engaging minority ethnic groups in social research — an effective model

Fortunately, there are some initiatives throughout the European Union that are successfully engaging minority ethnic communities in needs assessments and these can be used as examples of good practice. This pa-er continues by presenting and discussing one such example — the Com-munity Engagement Programme — in more detail.

In 2000, the UK Government's Department of Health (DH) funded the Centre for Ethnicity and Health (CEH) at the University of Central Lancashire (UCLan) approximately E 1.8 million to conduct research into the drug use needs of England's minority ethnic communities. However, they were not funding a traditional needs assessment: community organi-sations were paid to research their own communities with support and training from the CEH.

Although the research and needs assessment reports were an important outcome of this project, of equal importance was the process of building the skills and capacities of the individuals and community organisations involved. The project was carried out using a pioneering Community En-gagement model developed by UCLan, and a report on the process [5, p.5] discusses its aims:

The project aimed to increase community capacity to raise awareness about drug use issues within the participants' own communities, to assess the needs of the communities, and to articulate that need to those responsible for planning services. Crucially, in doing so, the project also engaged service commissioners and providers with the community members that they serve, in some instances introducing them to communities whose existence they were unaware of increas-ing their capacity to address diversity, particularly ethnic diversity, within their services.

The practicalities behind the model include:

•    The 1.8 million awarded by the DH was administered as grants of between E 7,500 and E 37,000 to minority ethnic community organisa-tions.

•    Invitations to apply for these grants were placed in both mainstream and minority ethnic-specific press.

•    In response to these invitations, UCLan received over 500 expressions of interest from community organisations across England.

•    Because the ethos of the Community Engagement approach was to support organisations from the outset, the CEH set up a telephone helpline in order to address any queries relating to the application pro-cess and to the research.

•    UCLan received over 200 completed application forms, from which 47 community organisations were selected, representing 25 different ethnic groups."From these organisations, 350 individuals were trained by staff at UCLan in research methods and in drugs awareness by external expert trainers.

•    Each organisation was assigned a dedicated project support worker to visit them every two weeks in order to offer advice and support.

•    Drug service commissioners and planners were advised of the initia-tive, encouraged to stimulate applications, and to support successful applicants throughout the project.

The result of the implementation of this process was that the community organisations involved consulted with over 12,000 individuals, including 2,000 drug users, from 30 different ethnic and national groups In addi-tion, the organisations forged strong links with local agencies, services and Drug Action Teams (DATs),2 and many of their findings and recom-mendations were fed into local drug plans. At the end of the six months allocated for completion of this research, 51 local and two national re-ports were produced [5, 6]. Since completion, around one in five of the 350 individuals trained to undertake the needs assessments have gained employment in related fields, none of whom had previous e experience in those fields.

In recognition of the scale and impact of the Community Engagement process, the DH have given a farther E 5.3 million to the CEH to under-take this process with an additional 120 community organisations over a three-year period. Les sons learned in the first phase have been incorpo-rated into the second, and include a rigorous evaluation; more training for the community organisations in research methods, not only to ensure better quality research, but also to enable individuals to gain a university qualification via training accredited by UCLan; and more involvement and support for drug planning and commissioning services, whilst main-taining the community-led ethos of the project [5, pp.18-21].

5. Supporting communities to research communities

The type of support for community organisations summarised above is to a great extent unstructured and reactive. In supporting numerous different organisations from communities traditionally viewed, in research terms, as 'hard to reach', the CEH has successfully worked with people from Somali, Turkish, Iraqi, Yemeni, African, Chinese, and South Asian cul-tures, to name but a few.

Community research, and specifically researching 'hard to reach' com-munities, is not a new idea, but is usually done to communities. How-ever, being researched has limited appeal: individuals and communities can suffer from 'research fatigue' whereby they have continually had in-formation taken from them without getting anything back. This process can be likened to an organism being studied objectively in laboratory conditions, examined by outsiders who have no long-term vested interest in it. In the Community Engagement model, it is the organism (the com-munity) that examines and so determines its own needs. This does not mean cutting the cord that connects the research institution to the com-munity, but it does mean not stubbornly relying simply on the conven-tions of 'objective' and 'scientific' research. The Community Engage-ment model redefines what we mean by 'effective research,' and thinldng beyond our usual terms of reference and conditions such as 'hard to reach.' It means therefore, acknowledging what such communities have to offer beyond their information; building the skills of individuals and community organisations; and supporting those who have the lcnowledge and trust of, and access to, their community.

Support can be given in various ways. As noted earlier, some degree of support was built in at every stage of the original Community Engage-ment Programme, such as telephone support during the application pro-cess, training in key research skills and drugs knowledge, and two-weekly support meetings. In cthinkingbuilding a group of people to con-duct a piece of research — from formulating a hypothesis and designing a research tool, to reporting and disseminating a set of findings and recom-mendations — support is crucial. It is important to emphasise that the ma-jority of particknowledgethe Community Engagement Programme had little or no experience of conducting research, nor of drug-related issues. hi a tight time-frame of six months, these participants underwent training, recruited volunteers, defined research samples, conducted research, ana-lysed data, and reported their findings. Simultaneously, they were asked to build links with their local DATs and other agencies that would help ensure that the research they produced was acted upon locally. To do this when most of the concepts were alien to them requires a particular kind of support, and this was given by support workers, whose role is discussed below.

6. The role of the support worker

The eight support workers on the Community Engagement Programme discussed here were all graduates, with experience in conducting research and of working with minority ethnic communities. The majority were members of m inority ethnic communities themselves.

The role of support workers on the Community Engagement Programme reported here was to meet with community researchers on a two-weekly basis. Briefly, this role involved helping an organisation develop a time-plan for their research, monitoring their progress, and setting key tasks and milestones. The regularity of these meetings is a crucial feature of this type of support as they allow new skills and ideas introduced during the training sessions to be discussed, rehearsed and digested far more ef-fectively. Without that opportunity when working to such tight time-scales, there is endless scope for community-based researchers to become lost in a sea of alien ideas. In addition, support workers often acted as a link between the often very small community organisations and very large bodies such as DATs, often perceived by members of minority eth-nic communities as serving the needs of mainstream white society.

These routine and structured elements of the support role are necessary to enable effective community research to take place. However, because of the innovative nature of the Community Engagement Programme, the support workers also embarked on a process of defining and leaming their roles whilst actually performing them. Much of what was defined in that time was the particular structure of support outlined above, but the job of supporting communities to undertake effective research goes much further. Offering this type of support means being able to react and re-spond. It is crucial to remember here that support workers were working alongside a whole range of different communities who represented a vast array of cultures, languages and beliefs, many of which had not previ-ously been encountered by the support workers. The support workers therefore operated on the basis that they had a great deal to learn from the communities with which they worked.

It is this kind of diversity of cultures and experiences which necessitates having to react and respond individually to those to whom support is given. In acknowledging that, we have then to recognise why it is so cru-cial that people research their own communities in this way. It is only they who possess the knowledge of, and links with, their community. Only they have access to the in-depth knowledge and information about what people from their cultures need. Gaining this kind of access is something that research institutions have tried but failed to do effectively in the past. Predominantly white institutions can bring research exper tise to the research project, but they cannot bring detailed knowledge of and access to, such ethnically diverse communities. It is this that is the es-sence of supporting communities. The Community Engagement model allows research institutions to engage in genuine partnership, recognising that support is a two-way process. Each party brings their particular ex-pertise that combine to produce a piece of work that is beneficial to both.

That supporting communities is a reactive and abstract concept mirrors the difficulties attached to conducting this kind of research. Communities are abstract, diverse and ever-changing. The support that is therefore re-quired needs to reflect that unpredictability. In supporting minority ethnic communities to conduct effective research, there are some very struc-tured and specific skills required, but to harness and mirror the diversity and cultural difference that makes such research necessary requires a flexible and mutually-supportive approach. Communities seen tradition-ally as 'hard to reach' are actually not — things are only hard to reach if the person reaching is too far away. If communities are being reached from within, then the proposition of community engagement becomes far more plausible.

7. Conclusion

There is no 'quick fix' solution to dismantling the barriers to drug service access faced by minority ethnic populations across the EU. Myths, stereotypes, and scapegoats surround drug use amongst these populations.

Examples are that religion and the 'strong family and social bonds' in some communities are protective factors against drug use; that females do not use drugs; and, fuelled by adverse media reports, an over-repre-sentation in criminal statistics, and because they are highly visible to the white population because of their skin colour, that some minority ethnic populations are heavily involved in drug distribution. Due to the lack of research, especially effective needs assessments, these assumptions can neither be confirmed nor denied.

Many minority ethnic populations are already socially excluded: failure to consider their drug service needs exacerbates this situation. There is considerable variation in the drug services provided for these populations both within and between member states, but across the EU as a whole, drug policy and practice r eflect the needs of the white, indigenous popu-lation. Although the data collected for the studies discussed here indicate that the drug-using patterns of minority ethnic groups are not substan-tially different from those of socially-excluded, white, indigenous popu-lations, it does not follow that these groups can simply 'slot into' existing drug services. Responses may have to be different in order that the barri-ers to drug service access can begin to be overcome.

Across the EU, drug services are geared predominantly towards white opiate users. The research projects conducted using the Community En-gagement model demonstrate that many minority ethnic communities do have a need for similar services, but that there is also a vast array of other, specific substance use needs that are unmet. In the Community En-gagement Programme, and with this type of support, communities are re-training and re-skilling, as are we as researchers. The role occupied by the support worker is by no means typical of a research institution-based researcher, yet in partnership with other community researchers, that is what they represent. In order to conduct research that can be sustained and can positively impact upon the very specific needs of minority ethnic communities, we as researchers have a duty to go about working with and accessing such communities without our preconceptions about how to conduct 'effective research.' We need to stop being precious about our skills and positions within institutions. We need to accept that with the support mechanisms in place, community members can conduct effective and far more relevant research into their needs than can we. In so doing, we are developing responses that can contribute to the dismantling of barriers to drug service access.

1. The authors are very conscious that, within the European Union (EU), various terms are used to refer to the many diverse communities living in the member states. In this paper, we use the term 'minority ethnic,' as this appears to be that most understood throughout the EU. However, we prefer the term 'Black and minority ethnic.' This reflects that our concern is not only with those for whom 'Black' is a political term, denoting those who identify around a basis of skin colour distinction or who may face discrimination because of this or their culture: 'Black and minority ethnic' also acknowledges the diversity that exists within these communities, and includes a wider range of those who may not consider their identity to be 'Black', but who nevertheless constitute a distinct ethnic group.

2. Drug Action Teams — bodies responsible for implementing the UK Govemment's National Drugs Strategy at a local level.

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