Drug Abuse

MINIMISING HARM IN RESEARCH

Fiona McDermott & Priscilla Pyett

Much drug research may bear an inherent risk of damaging the perceived interests of those under scrutiny. McDermott and Pyett examine the ethical questions surrounding drug research, posing the question: Whose harm?

INTRODUCTION

Our project brief was to discover, using action research methodologies, the needs of people in the community who had been dually diagnosed as having both serious psychiatric disorders and problematic drug or alcohol use. The project was funded for a period of 12 months under the auspices of the peak organisation of the Victorian Community Managed Mental Health Services (VICSERV). The money was provided by the Drug Rehabilitation and Research Fund of the Health Department Victoria.

Research is always an intervention. In doing research into the lives and experiences of vulnerable groups the possibility of the research process and product, themselves occasioning harm to the researched is discussed. We then consider the epistemology and methodology which informs our own research and the ways in which the choices we have made can minimise harm to the researched. We draw particularly upon participatory action research methodologies which enable us to 'operationalise' our harm-minimisation criteria.

The two researchers having joint responsibility for this project both have strong backgrounds in research and in the alcohol and drugs field; we have most recently worked together in developing methods for evaluating treatment outcome. We also have a commitment to participatory action research and, coming from the disciplines of sociology and social work, we combine interests in theoretical and methodological concerns as well as direct practice in the areas of social services and human science research.

This research project took place against a background of policies of deinstitutionalisation within the mental health domain, and the policies associated with the National Campaign Against Drug Abuse in the drugs and alcohol field. It also embodied the policy of harm minimisation which formed the focus of the Conference.

There is a burgeoning literature, mostly from the USA, reporting on the incidence, problems and treatment of people described as 'dually disabled' in relation to mental illness and drug or alcohol problems. Such people include those with thought disorders, schizophrenia, affective disorders and personality disorders. Substances of abuse include all known psychoactive agents. Polysubstance abuse is frequently reported within this group (Osher, 1989). People with these 'dual disabilities' are reported to have high rates of hospitalisation, use of acute care services, housing instabili ty and homelessness, violent, criminal and suicidal behaviour; poor medication compliance and poor response to traditional substance abuse treatment programmes are also associated with 'dual disability' (Osher and Kofoed, 1989). In the USA an epidemiological study by Regier and his colleagues ( 1990) reported that 53% of drug users have one or more mental disorders, and that 37% of alcohol abusers have a mental disorder. This study concluded that people with mental disorders are two to six times more likely to develop substance or alcohol abuse than the other way round. In another study, Ryglewicz comments ( 1991, p.79 ): 'This dual-disorder client population is fast becoming the majority of the population in need of mental health services.'

In Victoria, there is very little research available on this group, the number of people affected has yet to be determined and there is an absence of services specifically targeted for them. However, there is a growing realisation that this is a group to which attention must be given. Indeed, the impetus for this project arose out of the realisation and concern of service providers in the community-managed mental health sector that the 'dually disabled' pose considerable problems both to themselves and to existing mental health services and that 'something had to be done'. The first step towards 'doing something' was the initiation of this project which has as its aim the exploration and identification of the needs of the 'dually disabled' in Victoria

OUR UNDERSTANDING OF RESEARCH

In undertaking this project we begin from a position in which we see research as action aimed at discovering the meaning of phenomena and understanding the nature of the relationships between different aspects of social reality. As we see social reality as unendingly complex, we use a variety of different methods to view the phenomena under consideration in order to have the benefit of as many perspectives as possible. While doing this in a systematic way we try to remain sensitive to the ever-changing nature of social reality.

Perhaps even more importantly, however, we consider research as intervention, and that all research in the human sciences is intervention. By intervention we mean many things: engagement; collaboration and dialogue with the researched; enabling an issue, idea or phenomenon to be thought about, named and discussed; encouraging the emergence of different perspectives on the same issue or situation; bringing together the knowledge that is available and increasing our understanding of pertinent issues; facilitating changes in knowledge constructions; opening up the possibility of there being a number of choices for action which can be taken to ameliorate a situation.

Clearly, any intervention has consequences - direct or indirect, known or unknown, intended or unintended, positive or negative: that, of course, is its purpose. What is critical to bear in mind is that research in the research area of the 'dually disabled' is intervention into the lives of (very often) vulnerable and disempowered people Who are more vulnerable than those with serious psychiatric disorders, and drug and alcohol problems

The researchers are 'interveners' and therefore themselves likely to experience the consequence of their research practices. For example, some research projects, because they entail using methods which are distancing and ostensibly value-free, are felt as alienating to those who practise them (see Reason, 1988). Again, the transformation of knowledge (and research) into a commodity to be bought and sold for personal aggrandisement may be harmful to researchers.

SOME CONSEQUENCES OF RESEARCH-AS INTERVENTION

What are some of the consequences of this kind of intervention? What are the consequences of any research? We would like to consider this issue from three vantage points. First, research as a social act; secondly, the epistemological basis of research; and thirdly the methods by which the research process is enacted

Research as a social act

We argue that research is always a social act, which is to say that it is shaped by the context of social life and that social constructions that actors make in explaining and living in the world. Researchers are social actors who bring with them a variety of values and interests, all of which influence the processes and outcomes of the research. Similarly, there are always audiences to research, again enacting different values, beliefs and ideas about the world. The notion that research is never neutral but always value- and interest-driven calls into question the meaning of truth and certainty. Difficulties thus arise when research findings are reified into 'truths', particularly when these so-called truths pertain to vulnerable or marginal individuals and groups.

The questions that are asked are always someone's questions - but whose? Funding bodies, administrators, academics, clinicians, the researched? Research questions cannot but reflect the values and interests of the questioners which may not be the same as those of the questioned. The research question may itself identify, label and stigmatise the researched, for example, our current project is based on the premise that there is a particular group (the 'dually disabled') who need to be t identified and focused upon. What is the consequence of doing this, and in whose interests are these labels applied anyway? Additionally, such labelling may exclude certain groups from participating, i.e. some groups may not apply these labels to themselves. For example, the problem of reaching so-called 'hidden' alcoholics (middle-class women at home).

The research process sets up an exchange of some kind between researchers and researched. For example, researchers need information from the researched; they need access to their environment, their bodies, their perceptions and experiences. It is nearly always assumed that such an intervention will at some point benefit someone, ostensibly the researched. Such an exchange, whether or not it is recognised, is certainly an intervention in which both parties are implicated. Where this exchange goes unrecognised or unacknowledged, the consequences may be evidenced in exploitation or oppression of the researched.

The epistemological basis of research

Research can only proceed from an epistemological basis. The ways in which one perceives the world, categorises experience and understands human action have consequences for research and practice. For example, if one conceptualises alcoholism (or an emotional or cognitive disorder) as a disease then this will lead to very different interventions than from its conceptualisation as reflecting problems in living. Again, the way one proceeds to enquire into human action suggests assumptions about the phenomena being studied and also has consequences for knowledge-building. For example, the wish to measure and control human action while studying it (as in experimental design) arises from very different notions than the wish to understand and interpret its meanings (as in ethno-methodology).

Research methods

Epistemology is closely intertwined with methodology and the research methods chosen reflect the researchers' position vis-à-vis their beliefs and assumptions about human action and consciousness. The choice of methods is also a choice about consequences, both for the researched and for knowledge production.

Many research methods only allow interpretations by researchers, for example, the collection and analysis of statistical data, analysis of case notes, standardised questionnaires. In situations where the researched are not consulted, the assumption may be that the researched, unlike the researchers, are not seen as self-interpreting, nor as having interpretations of 'their own' reality which are of importance. One consequence of such a stance is to make a considerable amount of material unavailable for exploration.

Other methods, such as in-depth interviews, may, while inviting the researched to give their self-interpretations, be both intrusive and disturbing. In human science research, especially in projects such as our own, the researched are already vulnerable and may become distressed. Although recognition is given to the value and importance of their first-hand knowledge and experience, sensitivity to the nature of that experience may require other ways of working with them, e.g. in group rather than individual settings. Again, the nature of the research-subject's experience and situation may limit the number of people who are willing or competent to participate. 'Informed consent' is not a clear-cut notion, nor are there always satisfactory procedures for ensuring that those who participate are able to be informed of the possible consequences that may arise from their involvement. Clearly, attention to this issue may reduce the material that is available for study but must, nevertheless. remain a priority in seeking access to participants.

As we have noted so far in this section, the possibilities for research in the human sciences to have consequences harmful to the researched (and to the researcher) are numerous. There is also, however, the likelihood that the research intervention may be positive. Where the researched are recognised as capable and knowledgeable 'expert witnesses', research methods which enable them to speak and to be heard may not only reinforce their sense of self-worth (for example, follow-up research on recovering alcoholics was seen as helping them maintain sobriety: Sannibale, 1988) but may also be akin to consciousness-raising and provide a springboard for self-help and change.

Further, research that is premised upon a recognition of the complexity, ambiguity and paradoxical nature of human experience has the potential to increase our knowledge. This requires that researchers always be attentive to the impact that the research intervention may have on the researched and on the researchers, and that researchers strive to minimise the opportunities for harmful consequences to ensue. In the following section we will discuss the issues that we confronted in commencing our research and the criteria we adopted as 'harm-minimisation' guidelines for our action.

HARM-MINIMISATION GUIDELINES

Several assumptions underpin our harm-minimisation guidelines. These are:

1. That research is theory- and value-driven and that researchers must make known their theoretical and value position to all interest groups.

2. That research-as-intervention presupposes that the research process is action that will encompass and lead to change.

3. That the researched know a great deal about their own thoughts, ideas and experiences and there fore must be collaborators in the research process.

4. That an ethically based research process which emphasises confidentiality and informed consent is essential.

5. That researchers must locate themselves within the research process, i.e. recognise the importance of reflexivity and the value of self reflection, being aware of power differences in the researcher-researched relationship.

In practice we have adopted the following harm-minimisation guidelines:

1. The use of participatory action research methods, i.e. the crucial importance of engaging in dialogue, exchange and feedback with the researched (see Wadsworth, 1984, 1991; Lincoln and Guba, 1985; Patton, 1986; Reason, 1988; McDermott et al., 1991).

2. The adoption of research methods that are ethically sound and enable the researched to be approached without intruding into their everyday lives.

3. The recognition that the research question is under continuous investigation throughout the research process, leading to the discovery of other questions, the questioning of the question.

4. The identification of those for whom certain questions are important and why they are important.

5. The recognition that there are many audiences to the research, e.g. consumers/service users, service providers, administrators, policy makers, funders, the 'community', other researchers (i.e. the research literature).

6. The involvement of the researched in the interpretation and discovery of meaning in the material collected.

7. The necessity of making the research process and product accessible to the researched.

THE RESEARCH PROCESS

To illustrate the way in which we have used these guidelines in action we will describe our process so far.

We commenced work on the project at the end of August 1991. The first 3 months were spent in trying to come to an understanding of the field, which interest groups have a stake in the project's findings, the ways in which different actors understand the problems of 'dua1 disability', and the meaning of 'dual disability' from the points of view of different interest groups. In short, we have been moving towards formulating the research questions and converting these into strategic action at the same time as we are facilitating the emergence of the range of beliefs, ideas and values which are implicated in it.

Our first task was to come to a fuller understanding of the aims and intentions of the project's steering committee, which was itself made up of a number of people from both voluntary community mental health services, drug and alcohol services and government departments. To this end we held a meeting with the committee during which they 'brainstormed' their ideas concerning: Who are the 'dually disabled'? What needs to be known in order to understand the community-managed mental health sector? Where should we begin our research? This proved enlightening both to ourselves and to the committee as it became apparent that there are many different understandings of 'dual disability' and little consensus on who the 'dually disabled' really were. This began our process of trying to get a clear articulation (,f the boundaries of the project and the research questions that needed to be addressed. It also alerted us to the problem of definitions, the usefulness of the term 'dual disability' and other possible ways of describing this group, in short, discovering who 'the researched' were. From this process we have come to describe the researched as those who have both a serious psychiatric disorder and problematic drug or alcohol use.

In order to identify the different interest groups we began by asking the project's steering committee members who they thought should he involved. From each new person we spoke with we elicited further names of 1 people to contact. This 'snowballing' process has S enabled us to move relatively quickly into discussions with at least 50 key people in various domains: policy, research, advocacy, treatment and care as well as consumers - the people with serious psychiatric disorders 8 and problematic drug or alcohol use. Simultaneously, we gathered as much literature on 'dual disability' as was available, both locally and overseas.

In our discussions it became increasingly apparent y that three main areas of service provision - community managed mental health, drug and alcohol treatment and services for the homeless - were encountering persons with serious psychiatric disorder and problematic drug or alcohol use. We learned that there was little co-ordination between these sectors and, as has been noted, where it occurs at all it is the client group themselves who forge the links between different services (Psycho-social Rehabilitation Journal, 1991, p.3). More often the experience seems to be that many people 'fall between the cracks' and fail to receive services.

This realisation prompted us to organise a seminar to discuss the problems of people with serious psychiatric disorder and problematic drug or alcohol use. Agencies in all three sectors were invited to participate and about 40 service providers attended. The discussion revolved around areas of difference in terms of recognition of the problem, identification or diagnosis, the difficulties which people with both problems posed to treatment programmes, and the inadequacy of service provision for this group. Those who attended shared a concern for this group and an emphasis on the need to improve the co-ordination of services. From the point of view of the research methodology, we see the provision of opportunities for people to talk and think about problems affecting them to be an essential action, opening up the possibility for dialogue, exchange and the generation of ideas.

Feedback was requested from those at the seminar and we also later provided them with our account of the proceedings, what had been discussed, experiences that had been shared. This prompted some of those who attended and others who could not attend to contact us and continue the dialogue.

From the commencement of the project we had placed articles and notices in the newsletters of various organisations - VICSERV, VAADA, Council to Homeless Persons, Schizophrenia Fellowship Victoria, Health sharing Women - explaining who we were and our interest in speaking with anyone who wished to participate in the project. From these various sources we received feedback and a number of requests from consumers and/or their relatives to meet with them. This has provided us with very valuable opportunities to speak with those most intimately involved in the problem and to he able to put a 'human face' to the struggles of those with serious psychiatric disorders and problematic drug or alcohol use.

This broad snowballing approach has allowed us to cover a lot of ground and in the process to uncover several locally based initiatives. Two projects are of particular interest: one is a proposal to form a self-help group made up of consumers, their relatives and service providers who wish to offer a support and resource group to relatives of people in hospital and upon discharge; the other is a community-based group in a Ministry of Housing estate who, on being faced with the placement of people with serious psychiatric disorders and problematic drug or alcohol use in their area, reacted by developing services to enable such people to live in the community rather than organising to evict them. Our response has been to enter into negotiations with both groups indicating our support and offering assistance to describe, monitor and evaluate their initiatives. Such information is generally unavailable and yet of crucial importance in considering the various ways in which the needs of people experiencing both problems may he identified and responded to. It also points to the role of research as an exchange process where not only is useful information obtained but action by those most affected supported.

Since the beginning of the project we have individually kept diaries in which we record the work we have done as well as our reflections and thoughts about what is happening. We see this as a very important aspect of the research process, containing the vital 'interstitial links' between the varied levels on which we are acting by providing a way of contextualising our decisions and insights.

Our plans for the next 6 months include a survey to all relevant Victorian agencies in order to document the existence of services for people with serious psychiatric disorder and problematic drug or alcohol use, the nature and extent of problems agencies face, and suggested courses of action that they might envisage for this group. We are in the process of negotiating for the collection and analysis of statistical data relating to service provision and numbers of clients presenting with both problems to services; we intend to continue our interviews and discussions with different interest groups; and we are continuing to gather and read the available literature.

SOME FINDINGS AND SOME PROBLEMS FOR DISCUSSION

The foregoing is a brief account of where we are up to so far. Given that we are in the early stages of the project we are confident that our somewhat low-key approach is increasing our understanding of the research problem.

There are, however, a number of issues emerging which require consideration.

The question of who the research is for is complex. On one level it is clearly VICSERV, the project's auspicing body which is the peak organisation for the community-managed mental health sector. This is primarily a group of service providers who, although vitally concerned for the well-being of their client group are also concerned with issues surrounding how to manage people with serious psychiatric disorders and problematic drug or alcohol use within their programmes, given that their programmes are designed for those with mental illness not substance abuse problems. Discussions with people acknowledging both their-mental illness and their substance use have sometimes revealed that their substance use is seen by them as beneficial, as a self-medication. The question ten arises as to how these differing perceptions can be accommodated within the research - in whose interests are we to act?

As we have emphasised throughout this paper, we see research as having a critical role in enabling the voices of all those most affected by a phenomenon or situation to he heard and given legitimacy. But what if some groups, particularly those most affected, are not able to be heard, perhaps because of physical or emotional barriers to communication?

As we anticipated at the outset, the problem of labelling is difficult to surmount. On the one hand, the employment of the term 'dual disability', which is recognised by many service providers and in the literature, is useful so long as it is also recognised by those so labelled. On the other hand, if it is not recognised or if it calls out antagonistic responses it may alienate rather than include those who share similar experiences. It is also a term which arises from the medical model and from the discourse of social justice. As such it brings with it the rhetoric of 'illness' and of 'rights'. Our response to this dilemma has been to refer to the researched as those with 'serious psychiatric disorders and problematic drug or alcohol use'. At this point in our research we believe that this term is more encompassing and neutral than 'dual disability' and may be less threatening to consumers.

Fiona McDermott & Priscilla Pyett

Consultant researchers, VICSERV Investigation into Substance Abuse, Victorian Community Managed Mental Health Services Inc, Melbourne, Australia.

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