**3. Findings**

## *3.1. Emotional Burden*

The general and initial orientation of the whole research project was quite conventionally to address the prerequisites and challenges for a successful integration of care for people with multiple complex problems. During the development project and the related research process it became obvious—somewhat unexpectedly in a quite rational and functional framework of integrated care—how strongly care professional related emotions to integrated care for people with multiple

complex problems. The findings of the study showed that the emotional burden of multiple complex health and social problems affects not only clients, but also the care professionals who deal with these people in their work.

The lives of people with multiple complex problems are often very difficult for themselves and for their next-of-kin. The existing disease-based and fragmented care systems do not meet the needs of these clients. This incompatibility causes clients serious difficulties: physical and/or mental illnesses, social and other related problems are a burden as such, and problems experienced with the health and social care system are felt to cause additional burden. In the following, we first describe the experiences of professionals, how and why they often felt these clients to be a burden and the effects they felt this burden to cause—not only to clients, but also to the professionals themselves.<sup>1</sup>

Both in the fishbone analyses and in the interviews, the professionals reported that clients with multiple problems ge<sup>t</sup> lost, become exhausted and wear themselves out in poorly coordinated service systems. In the fragmented care systems, clients are sent from one professional to another. Nobody is responsible for the coordination of their care, and clients have to repeat their problems over and over again to new professionals, who are not aware of a client's medical history.

He had been sent from one place to another ... and now he is a client in very many places ... and the process continues and continues ... it wears out the resources of the client and professionals are also coming to feel the lack of resources. (Care professional Px, not identified from the recording)

The professionals also recognized that people with multiple needs very often feel shame because of their problems. They are ashamed because they feel they lack the ability to cope with their lives. Shame is connected with a fear of being doomed, looked down on or being stigmatized by professionals. It is understandable that it is not easy to discuss difficult or sensitive problems with outsiders. Even asking for help occasionally may be felt to be difficult and degrading. The burden of such feelings multiplies when people have to confront these problems for a long time and explain them over and over again to new care professionals.

All this also leaves professionals feeling frustrated, inadequate and helpless. When clients' problems are complex, especially because this situation goes on and on, an individual professional feels that s/he just does not have solutions for the situation.

... and the feeling of frustration for doctors and nurses ... again ... that very same client is here again and we cannot offer her anything and we are not able to help her. (Manager M4)

Then both parties are exhausted and tired and do not know what to do. (Care professional Px, not identified from the recording)

Alongside the picture of the client who is worn out and ashamed about her or his situation, professionals also outlined another kind of image of this client group. They recounted that sometimes clients with multiple problems are evasive and do not tell about their actual problems, they downplay or deny the problem or the real reason behind the problem. Sometimes clients seem to tell a different version to different professionals.

... the client ... sugar-coats the truth or does not tell everything ... it is terribly difficult to really help that kind of client. (Care professional P2)

... The client is able to play any role whatsoever, if s/he wants to do so. (Care professional P3)

<sup>1</sup> The experiences of the clients interviewed in the study are described in the original research report (Hujala and Lammintakanen 2018).

Professionals even spoke about clients as 'exploiters' of the system. Clients may require services, but they do not want to commit themselves to the care they are provided. They are passive, do not keep appointments with professionals and contribute nothing to their self-management. Some clients appeared to professionals as manipulators, who have endless needs. The professionals reported that nothing is enough for such clients.

... then we have this extreme, we have the clients who want everything. And they, they are ready to take everything and they demand everything, and nothing is enough for them. It is that kind of extreme, we have that kind of 'slough' there, that we have to restrict [giving services] . . . (Care professional P2)

Emotional labor (emotional work) (Hochschild 1983) applied to this context means that care professionals have to be sensitive to clients' emotional burden and at the same time regulate their–often contradictory–feelings and emotions which arise when they confront clients with continuous complex problems. Feeling empathy and feeling compassion were examples of positive emotions, frustration and exhaustion of negative ones. In addition, in particular the 'exploiters' or 'manipulators' evoked quite extreme feelings such as mistrust, annoyance, cynicism and even anger. The findings of the study suggested that this kind of 'emotional dissonance', conflict between expected and experienced emotions, is not restricted to single face-to-face encounters, but the emotional burden may become a permanent state of mind. This not only results in a poorer quality of care for clients but causes stress and affects professionals' well-being; an impact of emotional labor identified extensively in previous research (see e.g., Zapf and Holz 2006).

### *3.2. Pandora's Box: Professionals' Fear of Emotions*

In caring for people with multiple complex problems, one of the critical challenges for professionals is to identify 'shared' clients needing help and support from several care providers and therefore likely to benefit from cross-boundary collaboration among professionals. The professionals emphasized that even if they see that a client seems to have a problem which would require involving other professionals to be solved, it is not easy for the professional to bring the difficult issues to the fore if the client herself/himself is not willing (or is afraid) to talk about them. The fear of emotions creates a barrier between a professional and a client. The professionals described these encounters, for example, as follows.

We do not have the courage and we don't have ways to confront a person, if s/he seems to have a social problem, which is behind everything else. There may be 50 visits [to a doctor or a professional] just because the real reason is loneliness. (Care professional P3)

A lack of time and lack of the 'right' questions are not the only reasons to pass on this kind of situation. One of the professionals interviewed described how she feels when seeing a client in this kind of situation:

It is partly connected to it, that I think that I have only 20 min time [for the client]. What if s/he says something that I should really intervene in? And I do not have time now, because the next patient is already waiting at the door. So how could I do it in a smart way, so that somebody else could talk with her/him later, or call her/him, or something. (Care professional P3)

Thus, the fear of an emotional reaction inhibits the courage to ask the client about the underlying, wider problems. According to the interviewees, a professional may be afraid that the whole situation will break open. It is worth noting, that the professional is not only worried about the client's emotional reaction, but also about his or her own emotional reaction.

... [A] doctor or a nurse working in a practice does not dare to ask–because s/he is afraid that the issue is so sensitive, that the emotional reaction may be anything–either the client's or your own reaction. (Care professional P5)

The BEL project manager confirmed how it became quite clear during the BEL project that even though professionals identify a client with multiple problems, they may avoid asking about those problems.

... [W]e do know the people who traipse to the health center again and again. In a way, we are afraid of opening Pandora's box with the client, because there is no way to go forward. (The BEL project manager in a team interview)

The problem of Pandora's box concerns not only health care professionals and their concerns about patients' social problems. The interviewees explained that also social work professionals, too, may sometimes be too cautious to address 'deeper' problems of clients. They cited an example of a client who comes to see a social worker because of financial problems. It may take time and several visits before both parties are ready to say the underlying reason aloud, which may be, for example, use of alcohol or drugs. The problem of avoiding problematic issues is also recognized in the context of supervising care professionals. Revell and Burton (2016) emphasize the importance of supervision for social workers who confront significant emotional burden in their work, for example in child protection practice. Revell and Burton (Revell and Burton 2016, p. 1596) state, however, that in the same way as professionals also their supervisors may likewise fail to ask about emotionally difficult issues, for fear that they may raise too heavy concerns for discussion.

Difficult matters are tricky to bring out into the open: a professional may doubt his or her own ability to confront the problem. Avoiding an issue is easier, and sending the client to another professional may be a solution—and for the client the vicious circle continues. Integrated care–fixed procedures for multiprofessional collaboration–could be a solution: rather than choosing to avoid emotions by referral of clients, professionals could share the emotional burden by facing the client together.

Professionals may thus lack the courage to ask what is really the matter with the client. However, in the encounters there are always two participants. What hinders the client from bringing problems into the open?

... I think that it is partly because patients are also socialized to act like this ... They know the time is limited, you have to ge<sup>t</sup> to the most important point ... the issue you think is important from the professional's point of view, and it is obviously diseases. It cannot be that the professional would be interested in ... this kind of a social problem. (Care professional P6)

... [T]he client thinks that this is such a trivial issue, not worth mentioning. Then neither of them says a word about the most important issue. (Care professional P5)

The identification of the underlying problems is thus based on reciprocal behavior. The care professional focuses only on the issue the client raises and what she assumes the client expects. And the client behaves as she supposes the professional expects her to behave. They may be unsure, shy or even feel fear of professionals. Both lack the courage to ge<sup>t</sup> to the point and 'Pandora's box' is left unopened. The professionals called this 'half-way interaction': people do not wholly reach the other party in the interaction.

In emotional labor terminology (Hochschild 1983; Grandey and Melloy 2017), instead of so called surface acting (e.g., expressing emotions which are not genuinely felt) or deep acting (e.g., overcoming negative acting, trying to force oneself to feel positive or other appropriate emotions), the fear of emotions resulted in entirely avoiding and ignoring emotions. This is a very interesting point of view from the perspective of integrated care, while in this kind of situation it would be beneficial for all to ask help from other colleagues. As mentioned earlier, the professionals stated that one of the key problems is that clients are sent from one professional to another, which is just the opposite with the goal of integrated care. Here the professionals explicitly addressed emotional aspects as one reason for doing so–because it is easier than confronting the emotions related to problems. During the BEL development project, the professionals practiced concrete cross-boundary collaboration with clients in multiparty teams. A widely shared experience was that collaboration is an efficient way to share the emotional burden due to multiproblem clients. Integrated care arrangements should thus involve practices which encourage professionals to collaborate with other professionals and sectors to share the burden resulting from the demands of emotional labor.
