POBREZA RURAL Y DETERIORO AMBIENTAL
LAS PRESIONES SOBRE LOS RECURSOS NATURALES EN MOMBIN CROCHU
Self-managing to be engaged in meaningful roles and a meaningful life Self-managing parts or whole activities Self-managing stroke consequences
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and life’ (chapter 6). A difference between Eilertsen’s26 study and our study is that they present the phases as being related to a certain timeframe. For example, in Eilertsen’s study, the second phase where stroke survivors focused on activities is presented as taking place 2-6 months post-stroke. We did not relate the phases to a timeframe because we heard too much variation in participants’ stories and because the phases fluctuate. We also compared our findings on the three phases with the work of Corbin and Strauss,28 who described medical, role and emotional management as dimensions of self-manage- ment. Our first phase of self-managing stroke consequences can be viewed as medical management23, 28 and as a way to control the illness.24, 29 The second and third phase, self-management of activities and roles and life, may be related to role management.23, 28 Emotional management is less explicitly described in our phases, but the stroke survivors and their spouses actually needed it throughout the entire process.7 Emotional management is described in more detail in theories on how people react to trauma or crisis.30-32 Horowitz31, for example, described how after an event people initially experience bewilderment, helplessness, denial and go on with life after each other, and that, finally, the event is integrated in a life narrative. The process is considered as ‘working’ and has reached completion when the event is no longer at the forefront and when people experience emotional balance and go on with life. As in both the other longitudinal studies26, 27 and ours, the last phase of this process is also about going on with life. Different levels of self-management was another a topic that the participating spouses and allied health professionals in the focus group studies discussed. They talked about levels of self-management mainly from the perspective of independence. Independence is still an important goal of rehabilitation, and professionals working in rehabilitation encourage patients to regain as much independence as possible.4 Independence is also a desired initial outcome of self-management for many stroke survivors.33, 34 From the perspective of independence, self-management might be viewed as a higher-level goal than co-management. However, patients with chronic illnesses ultimately value autonomy and the ability to live meaningfully with an illness above independence.24 It is more important for them to be in charge of their lives, to re-engage in valued roles, and restore continuity in a meaningful life, than to perform activities independently.35-38 Our longitudinal study also identified that participants’ beliefs regarding support changed. At a certain moment, they accepted support from others because it helped them to engage in meaningful activities and roles. These considerations suggest that professionals should discuss beliefs about independence with stroke survivors and their spouses, first to understand how their beliefs might affect their reasoning about self-management in general, and second, how their beliefs might affect their reasoning about receiving support from others.
4. Self-management as negotiation
An alternative way to understand the findings of this thesis is to consider that within each phase of self-management, stroke survivors are in ongoing negotiations with different aspects of relevance when they manage themselves. In chapters 6 and 7 we mainly described how the participants negotiated with their inner selves (What is meaningful? What do I want?), their beliefs about support (What kind of support do I want?), and how they negotiated with their spouses. These negotiations can be viewed as part of the deci- sion-making process of self-management.39 People negotiate and make decisions against the background of several aspects, such as assessing the effects of self-management, evaluating their own capacity, perceiving normality, meaningfulness, and experiencing support and access to external resources.39 In this negotiation the different aspects might conflict: for instance, during a birthday party of a grandchild. We use this situation, which we borrow from an example that was described by a participant of the longitudinal study, to reflect on negotiating and decision making in self-management. On one hand, a birthday party is a meaningful activity that might lead to the strong feeling that one wants to go. On the other hand, stroke survivors might be aware that the situation could give too much sensory input that challenges the management of stroke consequences, or that they need too much support from family members to travel to the birthday party, which might challenge their ideas of normality and independence. Depending on their awareness of the situation’s challenges, the possible self-management strategies, and the negotiation between the different aspects, a stroke survivor will consider different aspects and prioritize certain activities over others. One day, this may result in the decision to visit a birthday party and to take rest before or afterwards (because they feel it is possible and normal to do so), while on other days the decision might be not to go to the birthday party because they have other priorities.
5. Self-management and the value of everyday activities
The findings from the studies presented in chapters 6 and 7 highlight how the doing of everyday activities provided the participants with different experiences in relation to their sense of self-management and being in charge. This finding relates to what the literature often refers to as a perceived success or failure in certain activities.40 However, from the findings of the studies in chapters 6 and 7, doing can be viewed as more than performing activities and experiencing mastery. Doing also gave the participating stroke survivors an impression about their sense of agency, the meaning of the everyday activity and their sense of self in the context of the post-stroke situation, which confirms ideas presented in other literature about the value of daily activities.41-43 Furthermore, the literature described how everyday activities helped stroke survivors recapture and reclaim feelings of belonging, enjoyment, autonomy and independence.37, 44
A question worth considering is why daily activities, or more simply, just ‘doing’, can have value for the development of self-management. The findings from the studies in
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chapters 6 and 7 showed how experiences received through doing were important for the development of self-management and could be even stronger than the insights participants received through verbal or written information. From the perspective that ‘knowing’ does not mean that people can change and self-manage,45 our research findings suggest that doing can be viewed as a way to receive additional experiences about one’s own capacities and limitations with regard to the self-management of activities.
In the context of self-management, doing may give stroke survivors the arena to develop their self-management: they can try out, experience and make meaning through doing; negotiate through doing; and decide to adapt activities, use resources, stop or go on with (new) activities when managing.37 Figure 2 depicts this process of doing in relation to development. Through doing, stroke survivors can explore, consider occupational challenges, and re-evaluate the personal meaning of everyday activities.37, 46, 47 Doing helps people to give meaning to certain situations by making links between meaning and action.48, 49 Experiences through doing can give stroke survivors new possibilities and may help them to negotiate with their inner selves or about other aspects and make their own decisions.44 Doing in this context gives them the optimal situation for what David Krech50 calls ‘perfink’, meaning that people perceive, feel and think simultaneously when they act.
Furthermore, doing might also provide the relatives of stroke survivors with important impressions. Through doing, stroke survivors may show others how they successfully self-manage in certain activities and situations, which can help relatives adjust their expectations in regard to their partners’ self-management skills. This can support dialogue
Figure 2 The process of doing in relation to self-management
The process of doing in self-management:
1. Trying out, experiencing and meaning making through doing 2. Negotiation through doing
3. Decision to adapt, to use resources, to stop or to go on with (new) activities
1
2
and negotiation between stroke survivors and their relatives about abilities, limitations, and responsibilities in activities and roles.
The value of engagement in everyday activities may inspire health professionals to use the ‘doing and perfinking’ in programs to support the development of stroke survivors’ self-management and to create dialogue between the stroke survivor and relatives about self- and co-management. As occupational therapists are experts in enabling people to participate in everyday activities, they may be involved in the development of such programs.51
Methodological considerations
This thesis aimed to explore self-management post-stroke from the perspectives of stroke survivors, their spouses, and health professionals. The studies in this thesis employed a variety of samples and qualitative designs. We consider this to be a strength because it made possible, using different methods, the exploration of personal experiences and reflections about the way people made sense of their self-management in everyday life. This has increased the credibility and confirmability of the findings within this thesis.52-55 Furthermore, these qualitative studies have yielded a wealth of findings that could not be easily collected through quantitative studies. The findings are not generalizable as is the case with quantitative studies; however, ‘generalization through the recognition of patterns’56 might be possible. The findings and conclusion may be recognized by professionals and may be applied to other stroke survivors or contexts. In addition to discussing the methods in the previous chapters, we would like to reflect on some other methodological issues.