The complexity of shaping self‐management in daily practice

Abstract Background and context Many countries are giving patients a more active role in health care, on both the individual and collective level. This study focuses on one aspect of the participation agenda on the individual level: self‐management. The study explores self‐management in practice, including the implications of the difficulties encountered. Objective To gain insight into the complexity of self‐management practice. This is crucial for developing both self‐management interventions and the participation policy agenda. Methods Qualitative semi‐structured interviews with experts (n=6) and patients with a chronic condition (n=20). Results In terms of level of involvement and type of activity, shaping self‐management in practice depends on personal and social dynamics, patients’ ideas of the good life and their interactions with care professionals. Clashes can arise when patients and professionals hold differing ideas, based on different values, about the level and type of patient involvement. Discussion The discussion on self‐management should account for the fact that how we define self‐management is very much a normative issue. It depends on the norms and values of patients, professionals and underlying health‐care policies. Differing ideas present professionals with ethical dilemmas which they should reflect on. However, professional reflection alone is not enough to deal with these dilemmas. The participation agenda needs far wider ranging reflection on how participation relates to other values in health care.

attention. 15 Because of the importance attached to the concept, it is vital to understand self-management well and its possible consequences for health-care practices.
The literature with a more critical stance towards the practice of self-management points to several tensions. First, although selfmanagement is often proposed under "nice" labels such as patient autonomy, patient-centred care and patient choice, it is on the neoliberal agenda to shift responsibility to citizens with the aim of reducing public spending. 2,5 This shift in responsibility has important consequences. For example, it may give patients the opportunity to become active but it also implies that they are to blame when they do not live up to the ideal and fail to self-manage properly. Such focus on individual responsibility disregards the social context that determines whether and how patients can become active. Here, the way freedom is imposed on individuals can lead to patient abandonment and inequality. 2,3,11,[16][17][18][19] Second, despite the emphasis on self-management and the creation of myriad interventions to support it, power relations remain firmly in place giving professionals the upper hand over patients who want to make their own decisions. This limits patients who want and have the capacity to become active. 12,20 The third aspect of self-management practice that causes tension goes beyond the question of becoming active or not. It is about what the activity should entail. These tensions are closely connected to different interpretations of self-management. While both academic and political debate commonly use the term self-management, it is not a clear-cut concept. 1,2,5,21,22 The common denominator is "the involvement of patients in their own care process." However, the extent and focus of involvement differ among definitions, 23,24 ranging from taking over medical tasks and following medical regimen to making autonomous decisions on living with a certain condition and dealing with all its emotional and social consequences. 2,5,21 The various definitions have an important impact on the organization of care and division of responsibilities. For example, definitions that focus on taking over medical tasks and compliance to medical regimen, as professionals tend to use, grant power to the professionals and focus on medical outcomes. 1,2,20,25,26 On the other hand, patients often have a holistic approach to self-management and focus on living the good life.
Managing their medical condition is part of that but there is more, causing patients to make choices that benefit their quality of life but go against the medical regimen. 2,[27][28][29] The question then becomes how patients and professionals should deal with these differences in interpretation.
The tensions identified above show that the debate on selfmanagement is normative. It confronts health-care professionals with ethical questions, such as what to do when patients cannot become active while this is expected of them or what to do when patients make choices that go against medical norms. 1,25,[30][31][32] The aim of this study was to combine and build on these critical insights by exploring the way patient self-management is shaped in practice, including the implications of the difficulties encountered. This insight is important to develop self-management interventions that recognize the complexities of self-management practice. Moreover, insight into everyday experiences is crucial for the future development of the participation policy agenda.

| METHODS
We conducted a qualitative study. First, we interviewed experts (n=6, Table 1), asking them to reflect on the concept of self-management, the underlying values and how these might conflict with other values in health care. These respondents had expertise based on extensive experience as researchers in self-management or medical ethics or as employees of organizations of professionals and patients. Previously, to gain insight into clinical practices, we interviewed nurses providing self-management support (n=15). The results of these interviews are published elsewhere 1 and used as input for the interviews conducted with patients. We interviewed patients with chronic conditions (n=20, Table 2). In four cases, a family member took part in the interview.
Respondents were contacted through the organization that provided their care. They were purposively selected on the criteria: (i) variation across medical conditions, (ii) variation across health-care settings (outpatient hospital care, home care or a combination of these) and (iii) variation in ethnic background. The last criterion was considered relevant because cultural background may influence perceptions of self-management. [18][19][20][21][22][23] The first and second criteria met the exploratory nature of the study and offered the opportunity to be sensitive to differences between conditions and settings that might arise from Interviews were recorded and transcribed verbatim. Data analysis was a combination of induction and deduction. First, we openly coded our data. We then compared our codes to insights from the literature on self-management. We paid specific attention to patients' ideas of good care, how they related to self-management and the possible conflicts or frictions that respondents reported as due to the differences in the ideas of patients and the professionals they encountered.
This led to the following themes: (i) perceptions of self-management,

| RESULTS
I think that self-management is not a static concept. This quote summarizes the complexity of self-management in practice from the patient's perspective. Having a chronic condition means that one has to self-manage living with that condition, no matter what.
Not managing a chronic condition is not an option. However, the meaning of such self-management differs between patients. In the following sections, we describe the complexity determining how self-management of patients is shaped in practice, both in terms of (i) the level of involvement and (ii) the type of activity patients perform.

| Shaping self-management: personal and social dynamics
How self-management is shaped partly depends on personal and social factors such as the skills patients possess, their social network and the stage of their disease. We will go briefly into them in turn.
First, respondents point out that to reach higher levels of involvement, one needs certain skills to be able to understand and process information and make decisions about one's health accordingly. • Impact of the condition on respondents life.

Self-management
• Activities (now and in the past) to manage condition (medical, social, emotional).
• Relationship with professionals.
• Support received from health-care professionals to manage condition.

Values underlying good care
• What is important in health care.
• Example of a good experience in health care.
• Example of a bad experience in health care.
• Influence experienced on care and treatment, evaluation of level of influence.
• Access to care, health-care costs.
stops them from doing so. In that case, they need professionals to take over. Evidently, the way self-management is shaped in practice not only differs between patients but also for individual patients at different stages. This quote already shows that the way self-management is shaped in practice is further determined by the interactions patients have with their professionals. We turn to this subject next.

| Shaping self-management: interactions with health-care professionals
Patients and professionals may share the same ideas of the preferred level of involvement in which case the professional can facilitate the preferred role. If desired, the professional will take decisions for patients who do not want to be involved in decision making, as we saw in the example above, or appreciate patients who are actively involved in decisions. Clashes like these can have important consequences for patients.
One respondent was frustrated that he was discharged home quickly after a kidney transplant and had to take care of himself. This made him lose faith in the medical system.
My trust is gone. Even when someone says to me now: "I want to help you" I wonder if they really mean it.

(P17)
Another respondent points out that inequality may be the effect of the current focus on activating patients.
Thirdly, clashes on the active role of patients not only concern the preferred level of involvement but also the preferred type of involvement. The above quotes again show the influence of personal/social dynamics and ideas on the good life. The factors discussed in our results are therefore intertwined in important ways.
In conclusion, the interactions between professionals and patients shape self-management to an important extent. Different ideas on the preferred level and type of involvement can cause clashes between the two sides, which can impact negatively on the experienced quality of care. In the next section, we discuss what this and the other presented results mean for the discussion on self-management and the broader participation agenda.

| DISCUSSION
Many countries have placed patient participation on both individual and collective levels high on the agenda, with equally high expectations of what this participation can achieve. Confronted with the fact that participation is not yet delivering the right results, it is often concluded that the effort should be intensified to ensure that patients become equal partners in decision making. 12 However, this conclusion does not do justice to the complex practices of participation. 2,14,[33][34][35] This study add insights into this complexity by focusing on how self-management is shaped in practice.
As said in the Introduction, there are many definitions of selfmanagement. 21,36,37 This is not just a theoretical discussion. Our analysis shows that in terms of both level and type of involvement, selfmanagement is shaped in practice and is influenced by a number of intertwined factors. First, self-management is shaped by personal and social dynamics which are partly outside the patient's domain of influence. Skills, the social network and the stage of the disease all influence patient self-management. 2,3,5,38,39 It is difficult to generalize on the characteristics that might explain the differences between patients. 5,14 The only difference that stood out in our study is that patients with a non-Western background report that the language barrier limits their playing an active role. 40  is also concluded that professionals should change their ways and value patients input much more. 12,47,48 Other researchers emphasize that not everyone is capable of being an active self-manager to the same extent, and it should be recognized that some patients cannot perform an active role. Therefore, health-care policies should not be based on the expectation that everyone can and wants to be active as this can cause inequalities between patients who can play such an active role and those who cannot. 2,3,11 These recommendations seem to limit some of the problems identified in this study. However, our analysis shows that they do not do justice to the complexity of shaping self-management. This discussion should go beyond dealing with the differences between active and passive patients. The differences reported in this study warrant a fundamental rethinking of the consequences of this discussion on self-management.
The discussion on self-management should account for the fact that how we define self-management is very much a normative issue. 1,3 First, it depends on the norms and values patients adhere to. Whereas active patients stress the importance of their autonomy, less active patients value a paternalistic model of the professional-patient relationship 49 and trust professionals to make the right decisions. Second, it depends on the norms and values of professionals-including listening to patient preferences, following medical norms and preventing