Client participation at the conferences
The extent to which client participation was highlighted by the programme management team varied by project. The programme leader of ‘Social psychiatric care’ said that the nature of the project made it impossible to ensure client participation, as social psychiatric care attempts to find clients unwilling to receive care; obviously, they would not be likely to participate in a professional team. In other projects, client participation received more attention. During the intake procedure, the topic of client participation was always addressed and teams were urged to involve clients.
In addition, client participation often came up during lectures and discussions at national conferences. For example, when the programme leader of ‘Not (only) the mind but (also) the body’ discovered that only one client was present at the starting conference, she said that this should be ‘improvement action number one’. ‘Clients should be members of the teams and should attend the conferences’, she said firmly. Interestingly, however, she gave no reason for client participation, as if the practice and relevance were self-evident. This was repeated in many of the projects. During presentations, different people – from programme managers to project leaders – summed up the factors contributing to success of their project, but rarely did they mention the participation of clients. Apparently, client participation was not seen as a project success factor, despite the sometimes urgent attention to the topic.
Furthermore, the conferences seemed to be not adjusted to client participants. Some enjoyed the trips to the conferences and perceived them as an ‘outing’, but for many clients the conferences were ‘long and exhausting’ days, as both clients and professionals expressed, and were therefore often too demanding for clients. Other teams reported that, although clients were on their teams, they did not find the information and programme interesting enough to join them at the conferences. In general, there was no well-developed structure for client participation in the programme.
Yet, at the conferences, team members were continually asking each other whether clients actually approved the improvement actions. For example, one team wanted clients to manage their own money, and another immediately asked: ‘Is that a wish of clients themselves?’ This was one of the main comments from other improvement teams when a team presented its project and it shows how client involvement – or at least client approval – in developing improvement actions was set as the ideal. It sometimes also seemed to illustrate a fear of exerting power. Although professionals did not often use the term ‘power’, some of them seemed to be fully aware of professional power because of its presence in professional language, standards and attitude and therefore tried to avoid all ways of exerting power.
Such a fear of exerting power could already be observed sometimes in programme management. For instance, an expert team member of ‘Health and medication safety’ was asking what kinds of people, in terms of profession, were present at a conference. She did not mention clients, and a question from the audience consequently was: ‘And experts by experience?’‘Oh, I’m sorry, I forgot the most important ones’, the expert said, apologizing a few times. The point here is not that she forgot clients – which may seem only logical given that clients were rarely present at the conferences – the point is that she felt the need to apologize and call the clients ‘the most important ones’. The example illustrates the fear of exerting power. At the same time, it is also the ‘doing’ of power. She first does not refer to them, and when reminded of this, calls them ‘the most important ones’ when, obviously, they are not the most important ones at the conferences. Including clients so explicitly demonstrates and reproduces the fact that they are excluded.
The fear of exerting power was also present in some of the improvement teams, mostly in ‘Recovery-oriented care’. At almost every meeting of this project, professionals were cautious not to do anything that might be perceived as ‘coercive’ or ‘imposing’. They even accused each other of exerting power on clients. For example, in a project leaders’ meeting, a leader said that in her organization an ‘expert and knowledge group’ was established to ensure recovery-oriented care throughout the organization and ‘define the boundaries of this process for all departments of the organization’. Other project leaders immediately reacted, because recovery does not fit with words like ‘boundaries’, as such words seem to start from a professional or organizational perspective and thereby imply that recovery is not owned by clients themselves. Almost scrupulously, professionals investigated their own and other’s words and behaviour to reveal possible power exertion. Power then was seen as being negative, restrictive and something that should be avoided in all cases.
The examples also show that, on the one hand, professionals struggle with ‘new’ concepts like recovery and client participation and therefore engage in ‘self-disciplining’ behaviour and, on the other hand, work in a professional and organizational context that also brings with it a particular normative framework and professional values – for example, recovery vs. the need to establish a uniform organizational policy. The examples thus show the existence of powerful and sometimes competing normative frameworks of professional work. Furthermore, because client participation has become a dominant policy goal, professionals reflect upon their behaviour in a different manner, showing the ‘panoptic’ function of stressing these concepts. In the panopticon, subjects are both observed and aware of being observed, which makes them change their behaviour and internalize certain norms44,45, like the norm of client participation.
Inclusion and exclusion
In some cases, clients did participate as team members. To explore the participation process, we start with an observation of a meeting of one improvement team. We focus on this meeting in detail as we want to explore if discourse analysis reveals only power discourses that render clients disabled or if we can find counter examples within the same meeting. We first report on examples of exclusion and then give some counter examples.
This team participated in ‘Recovery-oriented care and social participation’. It consisted of a quality employee, two managers, two care professionals and one client. During the meeting of the team, there were some moments indicating the exclusion of the client. For example, the client raised the issue of whether the team would continue after the official project ended: ‘This will stop, won’t it, or have you no ideas about that?’ The use of the ‘you’ indicated that she did not perceive herself to be in the position of having the right or the role to contribute to discussions concerning the future of the team.
In addition, the client said that she had a hard time following the discussion, as she was unfamiliar with many of the terms. During the meeting, many terms of the organization and health care in general were used, like ‘the HKZ’ (a Dutch accreditation system). Although the terms were probably not deliberately used to exert power, they decreased the opportunities for this client (and outsiders more generally) to participate in the discussions, and therefore, these terms can still be seen as forms of power in which the client is thus (partly) excluded from the discussion.
Hence, if we were aiming to detect professional power and had not looked any further, we would have come to the conclusion that indeed professionals and managers set the agenda and determine what is being addressed. But let us first examine some other moments of the meeting.
At one point, the team members were discussing whether or not to allow programme management of ‘Recovery-oriented care and social participation’ to take five anonymous care plans of clients with them to assess them in terms of client centeredness and recovery goals. The quality employee had already assented to their viewing the plans, but not to taking them out of the care institution. After discussing this point for a while, a care professional asked the client for her opinion. The client asked whether the team members knew where the plans were to be taken and, if not, then she would like the plans to stay within the care institution. The quality employee agreed and said she would formulate the answer in the proposed way to programme management. So, in this case, the clients’ perspective was solicited and used to reply to programme management. On the other hand, we could still say that professionals decided whether or not the clients’ perspective came to the fore. Furthermore, the decision eventually made was the one that professionals planned to make before they solicited the client’s opinion.
In another moment of the meeting, the question of who was to attend an upcoming national meeting of the project was raised. The client was not asked whether she would like to attend (although one of the care professionals was not asked either). Later in the meeting, however, the client spoke about the delicious lunches served at the meetings, after which she was asked to join the improvement team in attending. Either deliberately or unconsciously, the client was thus exerting power to join the conference. ‘Yes, I’d like you to join us’, the quality employee said to the client, ‘also for reasons of equality’. Yet, this equality was not about the client–professional balance but, as it became clear, the balance of gender. The client’s attendance made the composition of the group two women and two men rather than one woman and two men. The gender equality sought by the quality employee had the effect of undoing the inequality that is usually implied in the client–professional relationship. By explicitly referring to the client in terms of her gender, other differences are temporarily undone.30 Moreover, it emphasizes the similarities between them.
So examples of both exclusion and inclusion of the client were found during the meeting. By focusing only on how power excludes clients, other consequences of power that were also at work in the meeting might not have been taken into account.
Although there seemed to be not one coherent power discourse at work in the team meeting and the client claimed to feel equal to other members, the entire improvement team struggled with the specific role of the client. The client said that the idea was for her to think along with the improvement team and listen critically to the discussions. Furthermore, the idea was for the client to benefit from having a position in the team. And indeed it did her a tremendous service. She was asked to tell her story at one of the conferences, which, along with the positive reactions from the audience (often from professionals), increased her self-confidence. She became more convinced that at some point she would be able to write a book, fulfilling a long-term wish.
On the other hand, she critically questioned her own function and the contributions she was able to make. She wanted to represent the client group, but it had not been formulated as her role nor did she find herself able to do so. ‘I do not have the idea that I have a particular contribution to make’, she said in an interview. ‘I think [being a team member] is very interesting for myself, but I think it is problematic when I’m sitting here representing the client. (…) I think the information is interesting, the conferences are fun, but if I am here as a representative of clients I think my task... that I should be more active, and my role has to be clearer’.
In interviews, all team members remarked that the clients’ role was not clear. The quality employee for example confessed that she had ‘no answer’ to the question concerning the client’s role. ‘To express it crudely, we could say ‘Hurrah, hurrah, we have a client participating’, while it would of course be great if she had a clearer role’. So both the client and other team members were having a hard time creating a function through which the client could contribute to the improvement processes.
On the other hand, by always emphasizing the client’s ‘special’ role, the team members emphasized her separateness from others. One of the managers, for example, wondered whether they had to emphasize the client’s background. However, by not acknowledging differences, it becomes less clear how clients can contribute to the improvements. If clients participate because of their experiences with mental health care but that background is explicitly de-emphasized, the value of client participation could decrease.
What speaks out of these fragments therefore is not (only) professional and managerial power and client powerlessness or exclusion. Rather, various people seemed to be engaged in a situation that renders them all powerless in terms of client contribution. The client was unfamiliar with the terms used in the meetings and furthermore struggled to find a way to add value, all the while trying to represent other clients. The manager, caregiver and quality employee admitted that the role of the client was not at all clear and that they were unsure how to make it clear without, as the manager added, emphasizing her background.
The function of clients was a struggle in other teams, too; there were many expressions of this mutual powerlessness. While some teams remarked that they began to ‘look with different eyes’ because of the clients, these teams were the exception to the rule. A former client in the expert team of ‘Recovery-oriented care’ organized a meeting for all client team members in the project, and the main complaint concerned role ambiguity. In reaction, a project leader expressed her powerlessness by saying that she, too, felt ‘thrown to the lions’. In different teams from different projects, clients questioned the value of their role and were often quiet during discussions, perhaps because these were often framed in medical and professional terms and hard to follow for ‘outsiders’. As these examples illustrate, encouraging the practice of client participation without devising a good structure for their involvement can lead to ‘mismatch’ practices that are not deliberately created, but that lead to costs on both client and professional sides.2,9