All sites were visited prior to commencement of their projects and interviews were conducted with staff and consumers. The baseline interviews were aimed at identifying current levels of consumer participation, understandings of consumer participation, interest in consumer participation, awareness of the project, expectations of the projects, training and capacity building needs, and perceived barriers to consumer participation. In addition, the baseline interviews were included to provide data to measure any changes as a result of the demonstration projects.
5.1.1 Awareness, understanding and interest in consumer participation
5.1.3 Ex-drug users
5.1.4 Capacity building and training
5.1.5 The role of consumers in organisational decision-making
5.1.6 Expectations of the projects
5.1.7 Limitations and risks
5.1.8 Power and consumer participation
5.1.1 Awareness, understanding and interest in consumer participationThe term 'consumer participation' did not resonate with many service users — few had heard of the term. Service staff were more likely to have heard the term 'consumer participation', but only a few had any prior experience with consumer involvement in the drug treatment field.
While few treatment service users had heard of the term 'consumer participation', the majority of service users interviewed said it would be a positive shift if consumers had a voice within the treatment services they access, as the following examples suggest:
'It sounds like a good thing...yeah for sure. Because we're the ones that are using it so that makes sense.' (Male consumer)
'You need a service that is run by workers and what-not, but I really think the service would benefit more from people who are currently in that position ... consumer reps can be a sort of focal point between the guy that runs the service, like between the workers and the people who use the service. I also feel like we're a good resource to help the community understand services.' (Female consumer)
Top of pageIn one instance, and in response to an invitation from the service, the local drug user organisation had organised and delivered training workshops for both service staff and consumers around the theme of consumer participation. Here the notion of 'consumer representative' (as 'advocate') began taking hold:
'To give those a voice that don't feel they have one, and a plane to voice it on that is like them... like they come to me instead of coming to a staff member, they can come to someone who's been there and done that, even if the staff member has been there and done that it's still a bit intimidating to people... it's to advocate for them.' (Consumer)
Indeed, as will be reiterated throughout the report, those services that involved their local drug user organisation as a means of improving knowledge, implementation and support vis-a-vis 'consumer participation', demonstrated consistently higher levels of understanding among their consumers than those services that did not. In the instance cited above, a key staff member later described the drug user organisation's involvement — including their assistance recruiting the consumer representative — as a highlight of the demonstration project, commending their 'highly professional' approach. As the following comment suggests, even the distribution of printed resources assisted consumers' awareness, not only of consumer participation but of their relevant user organisation:
'And I got a folder [of information from the drug user organisation] ... I've sort of gone back through the folder and had a bit of a look at it, and I sort of relate to what they're trying to do for people... So it was really good to sort of finally realise that there is an organisation that's trying to help people in getting their needs met.' (Consumer)
The majority of staff also supported the concept of consumer participation and believed it offered a range of potential benefits, for example:
'...So like it's one thing to give a service, but if it's actually not a service that is useful to consumers then it's futile. So therefore I see them [consumer representatives] as actually directing us to make sure that we are providing proper services...' (Staff member)
Some staff felt services would gain new and alternative ideas about the service from their consumers:
'You just get, you just get different views... the client views as opposed to what, you know, we can try and think that we would know how they are thinking or how they felt. See they can, they might come up with completely different ideas of how to better the service... To get just like stuff that we might not think of that they would think was good, or stuff that we do that actually irritates them, they could bring it [to] our attention. I mean obviously we can't change everything but just new eyes.' (Staff member)
The majority of sites, while committed to consumer participation, did not currently have consumer participation at the organisational level. Further, most services and their staff had little engagement with the service users outside of clinical interactions. One community drug treatment service did have a drop-in centre where staff and other consumers could meet and talk. This service also offered programs for their consumers that were not explicitly treatment orientated, but included sport and art activities.
The residential rehabilitation service did offer many opportunities for staff and consumers to interact on a daily basis. The staff and mangers of the residential rehabilitation service described their service as having a range of consumer activities. Indeed, unlike the other services, they considered that all aspects of their service were informed by a consumer perspective.
Treatment service consumers and staff were asked what skills and characteristics consumer representatives were likely to require. These included good communication skills and experience with drugs and treatment, and having a capacity to communicate with staff and consumers was regarded as central, as the following example illustrates:
'A good candidate... someone who is a good communicator. I don't mean written skills, I mean someone who can talk to people. Someone who... I guess it is a lot of the things we look for in our staff. Rather than employment qualifications, we're looking for people who get along with our client group - not everyone can - and can communicate effectively with us. And someone that's been around long enough to know what the issues are and have a bit of perspective on them.' (Staff member)
Other qualities highlighted included being non-judgmental, having determination, courage and confidence:
'Well, good people skills, communication skills and to be confident within themselves as well as having the inside knowledge of what's going on. And I think confidence is a big thing and the ability to articulate exactly what you mean.' (Female consumer)
The notion of confidence seemed particularly crucial, with consumers often interpreting their peers' 'bad', defensive or antagonistic behaviour within treatment settings as symptomatic of a lack of confidence. This interpretation of others' behaviour was not pejorative but rather proffered as further evidence of the (perceived) advantages of consumer participation — in this instance via a consumer representative:
'I think because the main thing I've noticed with people on methadone is the, you know, the 'scuse my language, but they're always like "oh these people are cunts, they don't listen, they're fuckin' dogs, you know, they don't let me get my dose, (even though I haven't been there for three days)". But you know, and I just think by giving them the confidence to come to somebody and talk, it may help them to have the confidence to improve their life as well.' (Consumer)
Top of pageA significant number of consumers believed that other consumers were able to provide real-life experiences of drug use and treatment and were therefore likely to offer treatment services opportunities to enrich their programs and services in ways that would be beneficial to their consumers. It was common for consumers to compare knowledge derived from lived experience with drugs and drug treatment positively in comparison to knowledge developed through formal education and training:
'...some people that aren't in the scene wouldn't have a clue... Like you have new people coming straight out of school that have never bloody used the drugs. And like how are they going to be able to tell you anything... Whereas us on the other hand, we're in here and we know...' (Female consumer)
'"...You wouldn't really want someone representing you that had to train to represent you because it comes back to the experience thing and they'd be learning out of a text book.' (Male consumer)
The TSU Project: Phase Two aimed to develop organisational consumer participation; however it was not uncommon for staff and consumers to frame their project aspirations in terms of support and self-help and not in terms of organisational decision-making.
Knowledge of the TSU Project: Phase Two was minimal among staff and consumers. In most cases consumers had no prior knowledge of the demonstration projects before the interview and in no cases were consumers consulted or included in the development or writing of the project proposal.
This was also the experience of staff who were often only hearing about the project just prior to the interview or at the interview. In many cases, a manager or one or two staff interested in consumer participation had written the project proposal in isolation and not discussed it with other staff:
'"... If you are not involved in the planning it can have the effect of resentment, because the people that often end up doing the groundwork are workers like myself. They're not the high level where you can have the ideas and the vision and all that. But the people who tend to have to run with it and implement it are the people that may, and do in some instances, have the least say.' (Female staff member)
The model of consumer participation used in the TSU Project: Phase Two notes the importance of involving staff and consumers from the outset. While this may be ideal, very few of the sites had degrees of engagement with their consumers to make this practicable. The nascent state of consumer participation in the drug field will likely require staff or managers with a particular interest to play a central role in initiating consumer participation.
While failure to engage consumers from the outset may be able to be explained by low levels of existing engagement, it is less clear why some services did not seek to inform and engage their staff in the early stages of developing the projects. However the failure to include staff and consumers from early in a project may have ongoing negative impacts — as staff and consumers feel disengaged and imposed upon.
One site had actively involved staff from the outset and, although not all staff were interested, a number of staff chose to become actively involved in the project, working together to develop the proposal. While they did not expect to achieve a great deal in six months, they were committed to continuing to build consumer participation with a long-term aim of changing the service culture.
5.1.2 StabilityAmong both staff and service users interviewed at baseline, the subject of 'stability' was interpreted exclusively as a question of consumers' suitability for roles as representatives or advocates. Both service users and staff proposed that consumers who took on roles as consumer representatives or advocates would need to be 'stable'. While the definition of 'stability' invariably reflected the service's treatment ethos —typically 'abstinence' or 'harm reduction' — it was nonetheless used and understood as an attribution belonging to individuals.
What constituted an individual's 'stability' thus varied between individuals and drug treatment services. Staff who worked in services that promoted harm reduction were, for example, more likely to frame stability in terms of reduced use or being on pharmacotherapy. Services or staff who were committed to abstinence as the goal of drug treatment tended to define 'stable' as relating to no longer using drugs or pharmacotherapy. During baseline interviews the range of views regarding stability was similar among both staff and consumers, including among those individuals identifying as current 'users'. As one consumer remarked:
'Well it depends on your lifestyle as to your commitment level.' (Consumer)
Top of page
5.1.3 Ex-drug usersStaff and consumers were also asked what, if any, role they felt ex-users had to play in consumer participation. Many of the consumers felt that ex-users would bring valuable experience to the role and were therefore broadly supportive of their involvement. However, some consumers felt that ex-users eventually preferred to cut ties with the drug-using community and therefore could end up disconnected from current users and not really representative of their needs.
A number of staff at one service were negative about the inclusion of ex-users on the grounds that they often had strong preferences for abstinence-based and 12-step approaches to drug treatment and were opposed to harm reduction approaches. They were concerned that if ex-users were involved in consumer participation a diversity of views and needs would not be considered, in particular the voices of and the issues for consumers who continued to use drugs.
5.1.4 Capacity building and trainingWhile some staff believed consumer representatives would need some training, others did not identify specific training or support needs. Staff tended to focus on support in dealing with other consumers, and very few staff identified the need for the management and staff to undergo training. The following example is fairly indicative of attitudes among staff:
What skills do you think will be needed to be developed among both staff and consumers?
'Oh I don't know, I think the skills are just... I think the skills are there, people [staff] just have to work their head around... yeah I think... I'm not... I don't know about the consumers, although I think the skills are probably largely there anyway. A lot of people have done a lot of stuff with treatment programs and support groups and stuff.' (Male staff member)
For some staff answering the same question, the issue of additional training was less important than attitudinal change:
'I think it's attitude. Yeah, I think because they... what the staff have been doing here, I think it's sufficient for... like for how they do things.' (Female staff member) 'Maybe a bit more open just to try, see how it goes.' (Male staff member)
5.1.5 The role of consumers in organisational decision-makingStaff were asked whether they would be comfortable having consumer representatives on interview panels and staff development reviews. Initially, many staff expressed concern, particularly in relation to performance reviews, which is consistent with the findings from the TSU Project: Phase One. In this phase, however, few staff were completely opposed to the idea and a small number saw it as having a range of positive benefits:
What would you think about having a client or consumer involved in staff recruitment?
'"I would be quite favourable. But it would depend on, I mean I just know from my experience there are some clients that wouldn't be in a position to make an informed decision. But there would be a couple that if they had some experience in the organisation, did some mentoring, they would certainly be valuable in that role.' (Staff member)
When recruited to his current position, one senior staff member recalled positively the presence of a consumer on his interview panel some nine years ago, noting the strong message this had conveyed to him that he would be there to work not just for management but for the service users.
Nonetheless, such support for higher level consumer participation was not uniform, particularly around the issue of staff appraisals. One worker at another service was asked how she would feel about having consumers involved in staff performance reviews:
'Would I like them to review me? If it was current residents, it would definitely make me uncomfortable.' (Female staff member)
Top of page
5.1.6 Expectations of the projectsStaff and managers were consistently circumspect in their expectations regarding the possible short-term benefits of the demonstration program. Opinions varied more widely, however, with regards to its longer-term possibilities. The following examples illustrate the optimism and sense of possibility felt by some staff regarding the latter:
'... right across the board I think the benefit is that people [consumers] might well see that the service is theirs and that they have an ability to speak about what they need. And, of course, then the service gets feedback about things that you don't necessarily see yourself and the process of that, if it works successfully, is empowering.' (Male staff member)
'I would sort of hope is that, at the very least, what we would get is a better rapport or connection to the, you know, the consumer group, which gives us better insight into programming and the consumer group gets better programs.' (Male staff member)
Assessing consumer expectations at baseline was difficult, given the low levels of awareness among service users regarding consumer participation generally and the demonstration project specifically. The notable exception to this was the service where consumer representatives had already been recruited and were able to be interviewed at baseline. As the following example illustrates, initial expectations and aspirations were high:
'Well I believe that what'll achieve is, it'll achieve being able to break down communication barriers between the service providers and clients. It'll help by us having a voice and speaking up about issues. It'll help, hopefully to better the service, so that it's not so narrow-minded. It'll be able to be broader.' (Consumer)
Importantly, this optimism was coupled with a sophisticated and sensitive understanding of the role the consumer representative might conceivably play. As touched upon earlier (in the brief discussion of 'confidence'), the consumer representatives interviewed demonstrated an empathetic understanding of the institutional vulnerability of their peer population:
'To give those a voice that feel they have none, and a plane to voice it on that is like them... like they come to me instead of coming to a staff member, they can come to someone who's been there and done that, even if the staff member has been there and done that it's still a bit intimidating to people... it's to advocate for them.' (Consumer)
5.1.7 Limitations and risksWhile many participants did not see any significant risks associated with consumer involvements, others did identify a range of potential risks:
'There is some risk that if people have had a negative experience then they are not going to be able to, in some situations, step back and be objective.' (Female staff member)
Other staff, particularly those supportive of the demonstration projects, expressed concerns about the 'institutionally' vulnerable and tenuous status of consumer participation. Their primary concerns were two-fold: Firstly, that should something go awry during the demonstrations then future support from higher management/external authorities for consumer participation would be withdrawn; and secondly, that the consumers themselves were particularly exposed and any such 'failures' could jeopardise consumers' investment in the project and the hard-won trust built up between service users and staff. Concerns were also identified by some staff regarding the potential negative repercussions for individual consumers who had assumed additional responsibilities during the projects; not merely in terms of possible project 'mishaps' but more generally in the advent of unintended consequences, such as those outlined below.
Some consumers were concerned that consumer representative roles could produce conflict and mistrust among users:
'Jealously and just spitefulness, and lies and power of people: "I want that job, I can do that job." All the bad side of the consumer could come out. But there would be a lot of good stuff too.' (Male consumer)
To some extent such fears were borne out during baseline interviews held at the service where consumer representatives had already been recruited:
'Sort of outcasting me because I'm a so-called worker. Some people were saying "she's a worker now"... It was weird. It was almost like going against the whole aim, in trying to keep it sort of, peers working with peers. A lot of them were seeing me as not a peer any more, one of them.' (Consumer)
It is important to acknowledge that for some staff the 'risks' identified with consumer participation were associated with what they believed to be a possible threat to their role as 'staff members'. Both the following examples cite staff speculating about the fears of their colleagues:
'... if they [staff] don't think it [consumer participation] is a good idea because may... maybe it's a power thing. They feel they... some staff feel there should be more power than clients...' (Female staff member)
'... it's quite intimidating to think that members of that client group are going to have access to us at a level where they're not on the other side of a counter.'(Male staff member)Top of page
5.1.8 Power and consumer participationParticipants were asked to consider the issue of power dynamics and its potential impact on achieving consumer participation. In some cases staff challenged the idea that there was an imbalance. For example, some staff in a residential therapeutic community cited the fact that people were voluntary and free to leave at any time as evidence of shared power. Some staff in other services were uncomfortable with the question as they felt it ignored the strong personal relationships they had with consumers.
Others were aware of this issue and sought to balance it through communication and being clear and honest with consumers. For example, alerting a consumer prior to mandatory reporting:
'Look, I suppose that the rules are set out fairly thoroughly and people are aware that there is a framework and there are guidelines, and there rules. And if they were really informed about that and aware of reporting requirements... I think if there is clarity from the beginning and people know that there are certain procedures that are implemented and have to be followed then it should be possible.' (Female staff member)
While some consumers were less certain that issues of trust and power could be readily overcome, at least one elected consumer representative reported this transformation:
'I mean, I've noticed with me, like I feel like I'm more — I'm like one of them [staff]... I've changed my way but my perspective of staff has changed a bit, but not for the bad, like I have a bit more respect for their position now. I know what I'm going to be doing.' (Consumer)
Perhaps the most apposite reflection on the merits of consumer participation vis-a-vis 'power' was the following made by a senior staff member:
'... right across the board I think the benefit is that people [consumers] might well see that the service is theirs and that they have an ability to speak about what they need... Then the service gets feedback about things that you [staff] don't necessarily see yourself and the process of that, if it works successfully, is empowering.' (Male staff member)
What is important here is the recognition that 'power' and 'empowerment' do not have to exist as phenomena that one 'side' or group possesses at the expense of another. That, in fact, the empowerment of consumers does not necessitate the disempowerment of staff but rather may contribute to the betterment of both groups in co-existence.
This is a central issue if consumer participation is to develop successfully in the drug treatment context and will therefore be explored further in the follow-up analysis and in the final report.