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After Stroke Developing the Winner's Mindset
Issues in physical recovery
Initial personal experiences of stroke: Informants generally viewed their stroke as an intensely personal experience, although there appeared to be a tendency to view the physical effects as being detached from their body as a whole. Few references to an affected side or limb were prefixed with an adjective: “At the time, it all seemed to come over me all of a sudden. Now it's really just this one here [pointing to leg].”
The profile of physical recovery was, although complex, similar between study informants. The initial stroke was experienced in a number of ways, depending on the type of stroke, but feelings of suddenness and overwhelming catastrophe were evident. Two informants reported sensing their stroke in progress, as if their bodies were disappearing from beneath them, whereas for others the fear of not knowing what was going on proved overwhelming. The nature of stroke onset has been described before, where stroke sufferers have identified a complete loss of control, or complete disability, although clinically the stroke involved only part of the body (Doolittle 1991). Healthcare professionals have tended to regard a stroke as neuronal in nature, and tend therefore to refer to a one-sided paresis or weakness. All those in the study sample were admitted to hospital as a result of their stroke and received rehabilitative care and therapy. In the United Kingdom (UK) stroke patients are increasingly likely to be admitted to hospital. The most recent estimate of the hospital admission rate for stroke patients is 85% (Stroke Association 1999). After admission, three informants continued to perceive a worsening of their condition, despite being fully awake and alert. One informant described this as feeling that: “Everything continued to get worse. It was as if bits kept closing down. I felt that this couldn't really be happening... not in hospital.” This provoked feelings of fear, especially not knowing when and where the process of experiencing the stroke was going to stop. There was a strong sense of disappointment that this was happening even though they were in a hospital environment and were receiving care and treatment.
Early recovery: The first steps towards recovery were usually experienced in terms of increasing sensation, or progress towards goals. Goals in this instance were usually set by professionals. The inability to plan ahead in the early stages of stroke was highlighted by one informant: “I didn't really know what I was supposed to be doing. All I could think about was what I used to be able to do. I didn't know where to start.” There were significant differences in the way that individuals experienced initial recovery, for example improvements in speech, sensation and movement, dictated usually by the physical effects of their stroke.
Slowing down: At different times throughout their recovery, all informants experienced periods when they felt that their recovery was halted. For most this was perceived in one of two ways -- either that their existing level of function was the best that it could be, or that their condition as a whole was worsening. What was clear, however, was the lack of preparation that informants had for these instances, and the negative feelings this precipitated. The slowing down of recovery was often associated with feelings of despondency and frustration, and evoked reflections on pre-stroke life: “I wanted to get to the chair by the window. I just couldn't get to see the garden. It was always in the same place that I stopped. I just could never seem to get any further. I thought I had been doing well.” A common feature of the path of recovery from stroke described by Doolittle (1991) is periods of stability in physical functioning, described as 'plateau periods'.
New challenges: The long-term nature of stroke and recovery from stroke was strikingly evident within the data: “You can't get away from it. If you've had a stroke, then you've had a stroke. Its always with you.”
All new problems and situations which the individuals in the sample experienced were mediated by the fact that they had suffered a stroke. The ability to deal effectively with these situations was often affected by the features of physical recovery. When new coping mechanisms had been established and were perceived to be successful, informants felt more able to do things even though the clinical level of function remained constant: “The hand doesn't do any more than it did. I'm just coping better with it. I'm able to do a lot more now.”
This would suggest that actual adaptation in discrete physical activities was not of prime importance, rather it was the ability to cope with physical limitations that was valued by informants.
Issues in emotional recovery
Uncertainty: The initial overwhelming nature of stroke onset precipitated feelings of immense uncertainty in study informants. Individuals felt unprepared for their stroke: they feared what was happening to them, and that they were going to die. For those who perceived a worsening of their stroke in hospital, these feelings appeared to be most strongly marked. The development of the stroke left them feeling uncertain about the future. Each new transition of care, and especially discharge home, left informants feeling unable to plan and unsure about the future. Uncertainty was often perceived as extending into the future, when responses to problems or crises could not be visualized or anticipated: “Well I always thought I would be able to cope. With the stroke I don't know what I would do if [the family] moved away.” An evaluation of a community stroke service, undertaken from a medical anthropological perspective, supports the recognition of uncertainty as an important area on which nurses might focus their efforts (Hart 1998).
Hope: Hope appeared to be a major feature of emotional recovery in the first few weeks after stroke, with two informants identifying early physical recovery with the possibility of full recovery at a later stage: “By the time I got to the rehab unit I seemed to be doing OK. I thought that this wasn't going to be as bad as I first thought it would be. I suppose that gave me a push in there to do well.” Nilsson et al. (1997) identified that hope may be an important feature of early post-stroke recovery due to the potential for rapid and spontaneous recovery during the first few weeks after stroke. Any early recovery can help to reinforce the possibility of full recovery in time. Progress towards goals set by professionals appeared to be important in helping informants to be hopeful about recovery, although this was challenged by the reduction of professional rehabilitation input after discharge home where informants no longer had daily access to therapy services.
Loss of control: All informants reported a perceived loss of control over their bodies and their individual circumstances. These feelings were again anticipated for aspects of their future lives. Although physical loss could be attributed to a specific and discrete functional activity, this tended to be translated by informants to a total loss in a major area of an individual's life: “I can't grip properly with this hand. It means that I can't do anything. I mean if I go the [the pub]. What would be the point?” This translation may reflect the overwhelming nature of stroke. It is interesting to note that as recovery progressed, some informants appeared to focus on positive aspects of their life which they felt they had control over: “[Friend] comes with me. We've worked out this way for me to have a game of [cards]. I think they can see them and cheat. I suppose it's worth it though. Better than not going at all.”
In the early days of their stroke, particularly in those who experienced a stroke in evolution, the loss of control appeared to relate both to uncertainty about the immediate situation and the future. During later recovery, however, the focus of control appeared to relate to feelings of being dependent on others. Feelings of needing help and direction to perform mundane tasks, such as dressing and sitting, provoked negative reactions in all informants.
Anger/frustration: The loss of control associated with the aftermath of stroke, both in physical and social activities of life, provoked a strong sense of frustration in study informants. This linkage between control and frustration appeared to be most strongly related to the physical effects of stroke. Often, frustration was directed towards the parts of the body affected by the stroke: “At first nothing seemed to work. Now it's just this [holds up hand]. I could cope a lot better if it would just do a little bit more. It drives me up the wall.” A number of informants reinforced this frustration by making comparisons with their pre-stroke life. One patient appeared to be particularly bitter about his stroke, and the impact it had on all aspects of his life. All informants recounted a sense of being unable to prepare for their stroke, and that the suddenness and unexpected nature of their illness had prevented them from coping better.
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