6.4.1 'Stability' and consumer representationThe concept of 'stability' was raised by both consumers and staff at baseline and evaluation. Those who raised this as an issue appeared to place a good deal of importance on 'stability' and many seemed to regard it as being a critical factor for successful consumer participation in drug treatment settings. However, finding a working definition of 'stability' that took into account the diversity of opinion on this issue was very difficult. While there were some common themes and characteristics consistently referred to in the evaluation interviews as being the hallmarks of 'stability' for a consumer representative, there were also some fundamental philosophical differences in the views expressed on this issue.
For some staff and consumers, 'stability' specifically related to a state of being, such that the person — the consumer representative — is considered 'stable' in relation to their current drug-using patterns. For others, it was a much broader concept that included current drug use patterns but also seemed to include other lifestyle issues and attitudes, such as having a stable place to live, being employed, taking care of their children, and having a 'commitment' to what they are doing.
Among consumers, the concept also seemed to vary depending on the type or types of services they had experienced in the past or were currently utilising. Consumers from residential rehabilitation services held a common view that 'stability' meant total abstinence from drug use of any kind for a specified period of time. Whereas consumers from pharmacotherapy services were more likely to view 'stability' as including drug use patterns but not necessarily requiring total abstinence to be 'stable'. In many ways this dichotomy is not surprising, as for the most part it reflects the overarching therapeutic approach or philosophy of the respective services.
Staff also invested in the concept of 'stability' as a valued attribute for potential consumer representatives. As with the consumers, there was no real consensus among staff about this term and how it should be applied in the context consumer participation. There is some evidence in the evaluation that the concept of 'stability' was applied (albeit in an ad hoc manner) by some of the project sites when consumer representatives were selected. The high level of importance placed on this concept of stability was highlighted in one project where the selection of a consumer representative was significantly delayed due to concerns on behalf of the service that the person needed to be 'stable'. The service concerned claimed that despite an extensive recruitment process they were unable to attract or indentify a suitable current treatment consumer for the position. However, at evaluation at least one current consumer from that service stated they were and remained very interested in the position but were not informed or encouraged to apply when the position was advertised.
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Given the potential for this issue to have a significant impact on consumer participation opportunities, there is a need for further discussion about the utility and relevance of this concept for consumer participation in drug treatment settings. In particular, there needs to be discussion about how 'stability' is defined and characterised; how stability is determined, and who should judge the 'stability' of an individual consumer; and how 'stability' is managed over time in the context of a project or ongoing paid position. These questions will need to be identified and addressed in discussions with both staff and consumers before this concept can be usefully applied in this setting — or, indeed, abandoned.
The concept of 'stability' is already well-ultilised in clinical practice in the illicit drugs treatment sector as its corollorary, 'chaotic'. In this context, too, the concept has been the subject of much deliberation and debate. One of the main applications of this concept has been for clinicians to determine eligibility for take-away or unsupervised doses of opioid pharmacotherapies such as methadone and buprenorphine. Victoria is one of the jurisdictions that has developed a tool to assist clinicians in decision-making in relation to stability and eligibility for take-aways. Although this tool is considered useful in the context of clinical practice, its complexity and the individualised nature of the advice provided both serve to highlight the difficulties associated with attempting to use this concept in a systematic manner in consumer participation (Victorian Department of Human Services, 2006).
The concept of 'stability' and associated beliefs and assumptions about the levels of consumer interest in consumer participation was highlighted in the TSU Project: Phase One. Of interest was the fact that both staff and consumers held strong beliefs, largely based on generalisations about stability and capability, that most consumers would not be interested in consumer participation (AIVL 2008, pp. 86-87). These generalisations did not hold up when individual consumers were interviewed, but it did raise important questions about how assumptions, beliefs and generalisations among staff and consumers can act as a barrier to consumer engagement and involvement.
As a highly marginalised group in the community, beliefs about the capacities, skills and interests of illicit drug treatment consumers can often be driven by discriminatory attitudes and stereotypes. As highlighted in the policy audit for the TSU Project: Phase One, in areas of health service delivery to marginalised communities (such as drug users, people with mental health issues, etc), the relationship between attitudes and consumer participation is circular. In fact, in mental health, negative attitudes held by service providers have been shown to act as a barrier to genuine consumer participation (Mental Health Council of Australia, 2000).
Entrenched and internalised stereotypes about the capacities of other drug treatment consumers often drive consumer comments about the role of 'stability' in consumer participation. This is evidenced by comments from consumers in the TSU Project: Phase Two that suggest the 'stability' and, therefore, the 'suitability' of particular consumers to act as a consumer representative is associated with the type of treatment they are accessing. For example, as explored above, some consumers expressed the view that people who were in treatment for alcohol-related problems would make better consumer representatives than potentially less 'stable' opioid pharmacotherapy consumers.
Problems with the concept of 'stability' as a static measure for suitability and effectiveness are also highlighted by comments from consumers who are new to consumer participation. Consumers referred to how their capacity and interest in being involved in the demonstration projects changed over time with changes in their personal circumstances and growing awareness of the value of consumer participation. These comments show the need for flexibility and openness when considering and selecting consumers to act as representatives. Assessing people against a 'one-size-fits-all' concept of stability at a single point in time could not only result in a service overlooking an effective consumer representative but does not allow for change in people's lives.
As found in the TSU Project: Phase One, the most effective consumer participation is based not on assumptions, judgments or beliefs about person's capacity, interest or stability, but on open communication and accessible pathways for engagement. Consumers of drug treatment services are a diverse population with different needs and a variety of skills and experiences to offer. Services need to ensure they have a range of engagement points and different types and levels of participation to suit the diverse needs of their consumers. This also means resourcing for consumer participation as core business rather than an added extra on the workload of an already over-stretched staff member. It means creating the physical spaces to allow engagement with consumers outside of one-on-one clinical interactions where concepts such as 'stability' take on very different meanings and can often act as a barrier to genuine communication. Finally, it also means providing opportunities for consumers to consult each other and build the skills necessary for effective consumer participation.Top of page
6.4.2 Being 'fit' for serviceOne of the more interesting developments that emerged across the two evaluation points was a shift in the focus of comments about the concept of 'stability'. In baseline interviews many staff focused on a perceived need for consumers to be 'stable' if they were to be effective consumer representatives. By evaluation however, this focus on the 'stability' of consumers had effectively dropped out of the data to be replaced with more of a focus on whether the service itself had the level of stability required to effectively involve consumers. This shift seemed to indicate a growing awareness among staff and services of the level of commitment and systems required across the entire organisation to effectively carry out consumer participation projects. In short, there seemed to be a shift away from whether the consumers were 'fit' to be consumer representatives to more of a focus on whether the services themselves are 'fit for service' — 'fit to conduct consumer participation projects'.
While this shift was not evident in all services, those projects that experienced difficulties certainly reflected this change of view. For example, comments by staff in evaluation indicate this growing level of awareness included comments on the lack of stability in staffing, lack of stability in organisational memory, projects passing through many hands, financial systems unable to cope with the requirement to pay consumer representatives in a timely fashion and a lack of appropriate record keeping for the projects.
Indeed, the difficulties encountered by one service in paying the promised reimbursement to consumer representatives placed this person in a highly vulnerable position if they chose to take issue with the service. Previous research has documented how clients of drug treatment services (particularly pharmacotherapy) perceive that their access to treatment is fragile and that staff can be punitive in their response to client distress or dissatisfaction (Treloar, Fraser, Valentine, 2007). It is conceivable that there may have been negative implications for the consumer representative if they had become upset or visibly distressed at the failing of the drug treatment service to meet its obligations.
This concept of services and systems being 'fit for duty' has also been examined in the area of HIV treatment adherence among injecting drug users in a development context. This work highlights that while much of the focus has been on the ability of the individual to adhere to treatment regimens, there has been little focus on the capacity of the treatment systems themselves to provide accessible and integrated treatment services that are responsive to patient needs. In his work on this issue, Wolfe states:
Labelling active drug users as socially untrustworthy or unproductive, health systems can create a series of paradoxes that ensure confirmation of these stereotypes (Wolfe, 2007).
One of the main implications of this reframing of 'stability' to be, in the first instance, about services being 'fit for duty' rather than commencing with a focus on whether consumers are 'fit to be consumer representatives', is that it offers services an opportunity to reflect and consider what they need to create an environment of engagement. This capacity assessment needs to occur before services consider undertaking consumer participation projects and should include:
- Training and capacity building for management and staff;
- Adequate resourcing for consumer participation activities;
- Commitment at all levels of the service to involving and valuing consumers; and
- Engagement with local drug user organisations.