Service-User Participation in Coordinated Planning: Power, Possibilities, and Responsibility

The decision-making power of others is clearer than that of the service-user

There are examples in the interviews of others having decision-making power over the service-user, for example descriptions of the service-user’s dependence on decisions of others.

They are quite vulnerable… they often wait for others to make decisions for them. … if you’ve applied for something, you’re waiting for someone else to decide whether you’ll be granted it by the municipality … there are many situations where you’re waiting for others to decide what’s best for you, or what you need and what you’re entitled to. (Social worker, region)

The importance of service-user consent is emphasized in all interviews. For example, a psychologist from the region emphasizes several times that ‘it is the patient who decides on CIP [Coordinated Individual Planning]’, and says that without the patient’s consent, coordinated planning cannot take place. Service-user consent – agreeing to a plan or saying yes to a particular type of care – could be interpreted as decision-making power. However, several examples indicate that coordinated planning does not always happen because the service-user wants it, but because others think it is necessary. A municipal social worker illustrates this by describing a situation where the purpose of coordinated planning was to influence the service-user’s behavior, saying that the meeting ‘is really not because the person feels he has to have a meeting’, but because ‘the person doesn’t get things done’. The service-user’s consent to coordinated planning is described here as the result of persuasion and pressure.

Guardians and relatives are also described as having decision-making power over the service-user by deciding whether the person should be asked for consent.

That’s where we have difficulty accessing him, because we often hear from guardians that … ‘no, Kalle doesn’t want to’ or ‘there are too many people’ … we only hear that Kalle doesn’t want to participate from the guardian, and sometimes from the parents, (Social worker, municipality)

Another municipal social worker says that ‘if there’s a parent, that voice has more weight any day of the week [over the service-user]’. Parents and guardians can therefore prevent professionals from obtaining the service-user’s consent to coordinated planning or to a particular type of care, by referring to the disability. In this way, service-users become dependent on their guardians’ or relatives’ assessment of their capacity to give informed consent.

Professionals have power in the form of authority and formal mandates

The professionals’ decision-making power differs, and this can be linked to differences in authority, mandate, and hierarchies between organizations and professions. In his or her professional role, a person is perceived as automatically having decision-making power over certain issues. A municipal nurse says that being a nurse means ‘I’m responsible for medical matters’. There are also examples in the interviews of overstepping what is perceived as the authority and mandate of a particular profession or organization.

I think it’s hard when psychiatry says we have to decide on a place for this person to live … it’s kind of like saying you have to start giving this medicine. … you get into each other’s professions, and that’s not cooperation. (Social worker, municipality)

The interviewees perceive that there are hierarchies between the participants in coordinated planning, with some having more power than others. This is partly about the relationships between organizations where professionals in the municipality feel they often must adapt to decisions made in the region.

Hospitals are quick to say, “we’re done, the patient can leave the hospital”. But the rest of us … don’t have our work mapped out and the patient hasn’t even been asked what he wants. (Nurse, municipality)

It is also about hierarchies between professions with clear decision-making mandates. A region nurse explains how the doctor makes medical decisions, while the nurse’s role is to ‘inform, explain, and clarify’. In this way, the decision-making power lies with the doctor, who meets the service-user less often, while the nurse must carry out the decisions.

Accommodation is dependent on professionals’ knowledge of the service-user

Accommodations to promote service-user participation are considered a prerequisite for highlighting the service-user’s will and preferences, and thus their interests, in coordinated planning. Preparing together with service-users is described as particularly important, for example to give them time to think about their wishes.

The patient may not get the optimal solution because the patient has not had time to think through ‘what is important to me’ … as well as ‘what do I need’ or ‘what can I manage by myself’ (Nurse, municipality).

The importance of general knowledge about intellectual disabilities and clarifying pedagogy, as well as knowledge about service-users and their needs for making appropriate accommodations is emphasized. The convener of the meeting is described as responsible for how the planning is done. According to the interviewees, it is most common for a municipal social worker or qualified professions (e.g., nurse, physiotherapist, psychologist) to convene a coordinated meeting. The interviewees from these professions describe their role in coordinated planning mainly in terms of representing their organization. They also describe difficulties in making appropriate accommodations because they do not know the service-user well enough and may lack general knowledge about intellectual disabilities.

Those who provide day-to-day support (support workers, assistant nurses) instead describe their role in coordinated planning in terms of the relationship with the service-user. One support worker believes that ‘you’re mostly with the user … giving support when things get difficult’. An assistant nurse from a psychiatric ward says that ‘you’re just the patient’s extended arm’. Unlike the professionals who usually convene coordinated planning, they consider themselves to have good personal knowledge of the service-users and the accommodations that are needed. But the interviewed professionals from these professions say that they rarely have enough information to be able to prepare the service-user well.

We talked about going to this meeting and roughly, maybe also what it is about…roughly. I didn’t know everything. Because we hadn’t received any information about that (Support worker, municipality).

One reason for the lack of information may be the fact that support workers have limited access to the IT system that is used to convene, and document coordinated planning.

In the interviews, there are examples of professionals’ non-decision power to use, or not use, knowledge about how best to prepare and adapt meetings. For example, one municipal social worker does not use knowledge about communicative support in coordinated planning because ‘I just call the meeting’ and does not feel ‘brave enough’ to use this knowledge. Another example is that the convener takes help from others who know how to accommodate service-user participation.

Staff who are around [the service-user] have a different understanding of the current situation, what works and what doesn’t work and so on… so I try to work more from the perspective of others (Social worker, municipality).

In this way, whoever convenes coordinated planning can still be responsible for involving service-users in a meaningful way, despite lacking knowledge about the service-users’ needs.

The interests of others can overshadow the service-user’s voice

Professionals can influence the agenda through the role of convener or by choosing whether to attend or not. Even though it may be mandatory to come when you are invited to a coordinated planning meeting, according to a regional social worker, it happens ‘relatively often’ that invited parties do not come. This affects what issues can be raised and what decisions can be made. Those who do attend the meeting can influence the agenda by choosing what is presented and by limiting the options for decisions. A region nurse says ‘You can’t present everything because you can’t really offer it either. You must see what’s relevant, both to the patient’s health status and to the resources you have’. The nurse believes that only feasible alternatives should be presented and refers to her medical competence in assessing which alternatives are best.

Although the non-decision power of professionals to limit the questions and options presented in coordinated planning are problematized in some interviews, it is also considered a prerequisite for service-user participation. A municipal social worker illustrates this in a story about a coordinated meeting where several conceivable options were presented to a client who had difficulty understanding the consequences of the choices. The social worker says, ‘You can’t sit in a meeting with this person and bring up five different options … I tried to explain it several times, but somehow it didn’t work out, and after each meeting the person was in a state of dissolution’. In contact with other participants, the social worker tried to explain that the number of options was too great, and that it hindered the client’s decision-making capacity.

All interviewees say that people with intellectual disabilities often depend on others to look after their interests. One municipal social worker believes that ‘people who have guardians are not included to the same extent [in coordinated planning] and thus do not always make their voice heard’. In these cases, someone else advocates for the service-user, often a guardian, a relative or a support worker. The professionals in the study mention the risk that people representing or interpreting the service-users may have their own interests that influence their interpretation.

It’s what Pelle thinks, not what the staff thinks Pelle should have. That’s how it is sometimes with relatives too, so maybe you start with what I want as a relative. … the mother has chosen something … and now he wants it … but what does HE really want? (Social worker, municipality).

Another example is that service-users are sometimes described as part of a unit with someone else, often a relative or a support worker, rather than as a unique person with their own interests. One region social worker says that ‘since they themselves called about the need, they had a pretty clear idea of who [should be invited]’. Lumping together the service-user and the relatives as ‘they’, makes it unclear whose interests are being represented and who decided to seek support, the relative who contacted the social worker or the service-user. One reason for this grouping may be the perception that people with intellectual disabilities lack the capacity to make their own case or to pursue their own interests.

If you can speak for yourself and have a good ability to express yourself, then of course you will have a different position in a meeting like this. Then you can have more power, if you dare to use it (Social worker, region).

This suggests that the interests of others sometimes determine which issues and alternatives are discussed in coordinated planning and that the interests of the service-user may be overshadowed.

Ideological power affects professionals’ actions

Several of the interviewees find it difficult to explain their opinions and why they act as they do. When asked why participation is central to the legislation on coordinated planning, a municipal nurse says, ‘I can’t answer that because I think it’s obvious to me in a way that you should respect everyone, even people with a disability’. The nurse finds it difficult to justify something that she takes for granted. An example of unreflective action is given by a municipal support worker, who describes how a service-user was given support during a meeting in the form of reassurance and help with raising questions. When asked if the service-user wanted this form of support, the support worker replies, ‘No, I don’t remember that. I guess so. It feels like, no, I can’t answer that. I don’t know’. The quote illustrates how the support worker perceives the service-user as needing support, even though the person has not expressed this.

There are also examples in the interviews of how the professionals accept their role in the existing system. Some of these are cases where professionals describe the naturalness of their own or someone else’s role, e.g., a support worker who says, talking about who attended a meeting, ‘of course there was a social worker there too. I forgot that, but of course’. Others are about hierarchies between professions that are expressed as self-evident, e.g., a nurse who says that the doctor is always there because ‘I don’t make any decisions myself’.

The unconsidered opinions and actions, and the acceptance of the way things are can be interpreted as a result of the ideological power exercised by those who decide on legislation, organizational routines and working methods. In some interviews, professionals reflect on how these structures can shape and limit their work with coordinated planning, for example, how the IT-system used to document the coordinated plan controls the content through its headings.

My mental well-being, or my health, is the heading [in the IT-system]. But then you must describe what the person can do, and that’s not always easy. ‘I have poor mental health’, how do you turn that into something positive?… what works less well, or however it’s written, it’s a kind of strange wording, but it doesn’t say anything about what I need (Social worker, municipality).

Professionals are in this way exposed to ideological power that influences their actions. The interviews also provide examples of how the professionals’ opinions and actions do not always reflect their actual beliefs.

I’m much bolder when we have network meetings, but that’s also because I’ve been appointed to lead this meeting… And I have the right to – ‘now you’re getting off topic, so let’s move on’ – to sort of lead things back. I manage breaks… But when I’m calling a coordinated meeting, then I have a piece of the pie (Social worker, municipality).

The social worker above compares coordinated planning with another type of meeting called a network meeting where the facilitator has a clearer mandate to control the proceedings. Skills for creating the best conditions for service-user participation cannot be fully utilized in coordinated planning because then you are ‘part of the machine’, representing the organization ‘involved in the case’. The example illustrates how rules and perceptions about coordinated planning undermine the professionals’ certainty about the best way to conduct planning and promote service-user participation.

Professionals exercise ideological power to achieve compliance and desired behavior

Better compliance by service-users and relatives is described as a positive outcome of coordinated planning. The interviews describe various ways of achieving compliance and desired behaviors among service-users.

They are kind of forced to do things. Yes, sure, it’s an offer, but they’re at a disadvantage … they have to agree to things they’re not motivated to do, because somehow it becomes a requirement, a condition for something else… but deep down, it’s not what they want (Support worker, municipality).

The quote above illustrates how a service-user is coerced into a desired behavior through conditions set by others, such as having to take prescribed medication regularly to be discharged from psychiatric care. The interviews also include examples where the very purpose of the coordinated planning is to intervene and influence the service-user’s behavior.

Sometimes we have had a pre-meeting … maybe when there are sensitive things to discuss … a girl with a lot of excess weight and how we should deal with that. How can we begin to talk about that in the best way? … that you have some kind of strategy (Nurse, municipality).

By preparing the meeting in this way, the professionals can agree on strategies to bring about the behavioral changes that are considered desirable. During the meeting, they then work together to influence the service-user to want the desired change.

There are also examples in the interviews where professionals reflect on the boundary between coercion and motivation when striving to respect service-users’ choices and wishes, on the one hand, but seeing that their choices and wishes are not good for them, on the other. A nurse from the municipality believes that ‘there are people who may not really understand the consequences’ and that it is important to ‘get people to understand’. A physiotherapist says that ‘if you want to get a person on track and, for example, implement a change, it must come from within the person. In this case, you must motivate them’. The distinctions between coercion, persuasion and motivation are difficult to define, but in the interviews, they are all motivated as being for the good of the service-user.