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The bereavement model has been incorporated into the stroke literature through texts aimed at professionals and caregivers. One example of this incorporation appears in a medical text written by Wade and his colleagues which draws on the authors experience of providing care in one of the early stroke treatment units at Frenchay Hospital in Bristol. Wade and his colleagues organize their account of rehabilitation around the losses which survivors experience, i.e. cognitive deficits, communication difficulties, physical loss and emotional and social losses. In their discussion of the emotional and physical losses they start by explicitly equating stroke with death: ‘A stroke is a small death.’ It comes on suddenly, often hitting someone who is quite well for his age, and leads to obvious physical loss. The victim is rendered helpless ‘at a stroke’, and is robbed of his dignity and independence.
In Wade’s text the underpinning of the bereavement model is made explicit. Wade and his colleagues cite the bereavement literature before utilizing a four-stage model derived from the work of Holbrook.9 Holbrook’s work was based on two follow up studies of stroke survivors and carers in 1975 and 1980 and described the social and emotional outcomes of stroke and mapped the stages of adjustment to stroke. Holbrook’s first stage is crisis, which is characterized by shock, confusion and high anxiety. This is followed by a treatment stage in which survivors and families develop high expectations of recovery, denial that disability is permanent and periods of grieving. The third stage involves the realization of the real level of disability with associated feelings of anger, rejection, despair, frustration and depression with the final stage being adjustment to or acceptance of a new reality as a disabled person. Wade and his colleagues describe the third stage in the following way: "This stage usually coincides with discharge from hospital or from active treatment. This is the stage that most closely resembles true bereavement, and it is characterized by extreme anger coupled with feelings of despair and rejection. The patient is both frustrated and depressed by his disability and his inability to alter it. The process of realization is complete, and is followed by anger and a search for the lost self. The patient and his family tend always to relate the current state to the state before the stroke; the comparison is usually depressing." Wade and his colleagues argue that this framework provides professionals with a way of understanding how an individual is adjusting to his or her stroke and to help them adjust through counseling.
Stroke As A Loss
The professionals also saw stroke in terms of loss. A number of them considered that stroke was an exceptional illness because of the suddenness of onset, the uncertainty of the future and the length of time it took to make a recovery. They felt that the shock of the event itself and the initial residual difficulties made it difficult for survivors to fully understand and appreciate what had happened to them. An occupational therapist who had worked in a specialized stroke unit describes the impact from her experiences: "You were a fully, functional individual with no problems, perhaps and no physical problems and something like this happens and it just shatters people’s lives. . . I think it is that from one day to the next your life has completely changed, that’s the devastation. . . There is always some individual deficit left, some weakness and there is also this overhanging potential for you to experience another stroke. . .Yes it is this complete change in your life role."
Professionals argued that the loss associated with stroke, especially the ways in which stroke undermined the taken-for-granted nature of the world had psychological implications, survivors tended to lose confidence and trust in themselves and their abilities. A community nurse suggested that this loss of confidence stemmed from an experience that went right to the core of their being: "Most of the patients I deal with say they don’t ever feel themselves for quite a while after the stroke whatever ‘themselves’ is. . .. I think it is the whole of them really you know. Well yes, yes, who they are and what they are." She explained that people she visited were adjusting to an altered body image and a changed identity, life with a disability. Burton found that each new stage in the treatment, especially discharge home, left survivors feeling unable to plan because of the uncertainty. Two thirds of the practitioners in the study identified depression as a common consequence of stroke that impacted on recovery as it affected motivation. As Dowswell et al. note, the severity of the stroke does not necessarily determine the impact on the person. This view was evident in our interview with a speech therapist who described the impact of a mild stroke on a client: "I’ve worked with clients with very very mild problems and really on any form of assessment we would do they are very mild and yet, and I’m thinking of one individual in particular, absolutely devastated his life."
While both survivors and professionals accepted that stroke was linked to loss, there was a difference in the way they presented this loss. Professionals tended to see similarities and commonalties both in the pattern of loss and in the psychological implications generalizing from their practice using such phrases such as ‘most patients’ or ‘clients I have worked with’. In contrast survivors tended not to generalize, their responses were narratives of their own experience. They were not seeking the general but concerned about the specific. Thus their loss was personal and only made sense in context of their personal biography. While survivors’ narratives identified losses they were often specific personal losses. For Mrs. Garrett cooking was important and an important part of her recovery was re-establishing her ability to cook: "I like cooking, I like making cakes and I was getting in an awful state because I couldn’t do it and then I thought, I need it lower (the work surface) and my friend had an old stool so she brought it along and as I say, I now do all my mixing on a stool. I make a dreadful mess but that doesn’t matter, it can be cleaned up but I do it.
Mr. Jones, who had previously led an outdoor life, was supported by his family in his goal of learning to walk again but was not entirely satisfied with his progress. When walking, supported by his wife and daughter, he did not feel that this was ‘real walking’, and therefore did not value it. He was suspicious of those assessing his progress, such as the physiotherapist, judging that encouragement and praise was not always realistic about his performance and progress. In spite of support and positive re-enforcement and strong motivation on his part, Mr. Jones remained unconvinced about his achievements and was left with a feeling of disappointment.
Survivors’ context-specific evaluation of loss resulted in one of the paradoxical findings of our study. Survivors could both recognize that they had experienced a loss in their personal biography but also that they were fortunate or lucky (15 out of 26 interviews). Mrs. Garrett maintained: And I don’t, a lot of people, I know they’re in a lot worse state and I think. I don’t suppose lucky is the right word or it could be, but I was fortunate enough. . ..
While ‘luck’ was based on a comparison with others less fortunate, it could also be defined in terms of some fortunate aspect of events or treatment, it could have been worse. Mrs. Roberts, an elderly lady felt fortunate in some aspects of her daily life such as having a carer but missed other parts: She give me a nice shower of a morning and that and I’m lucky that I’ve got those things. I’m grateful really but I wish I could do other things really, like be independent.
While both professionals and survivors in our study recognized that stroke involved some loss, the nature and consequences of this loss were seen in very different ways. Professionals tended to see loss in general terms and to see the consequences, especially the psychological consequences, in similarly general terms. Survivors saw loss in a highly personal context, as a specific loss, such as the loss of control over a limb, which only acquired meaning in the context of their personal biography, for example that of a good cook or a competent driver.
At one level such differences are a product of the research process. We invited stroke survivors to tell us about their personal experience of stroke and we asked professionals to talk generally about their experiences of stroke survivors. However at another level the research process simply drew on and reinforced everyday practice. In everyday life stroke survivors are asked by friends, relatives and professionals about their personal feelings and experiences. In contrast professionals are ‘experts’ who are expected to draw on collective professional knowledge developed by generalizing from individual cases to general underlying and abstract processes. The application of such knowledge involves a process of decontextualization, the disregarding of ‘irrelevant’ unique features to concentrate on ‘relevant’ general features of a specific case so that appropriate care and support can be provided. However in this process there is a danger that features considered irrelevant by the professional may be considered highly relevant by survivors.
Rehabilitation, Normalization and Progress Towards Goals
Mr. Bryant, who was housebound, described the goals he set himself in the following way:
His immediate goal of walking a short distance was in fact the means to an end, a way of achieving other more complex and valued goals. Mrs. Dalton, an older lady listed her personal goals:
All the practitioners in our study viewed rehabilitation as a process of assisting individuals to work towards an optimum level of independence, enabling clients to fulfill their maximum potential. However, the way they viewed this process differed, with some professionals emphasizing functional or clinical aspects while others were more concerned with the social or personal aspects of rehabilitation. The minority of professionals (3 interviews) who emphasized the clinical approach used clinical terms, such as ‘function’ and ‘activities of daily living’ (ADL): Well I think rehabilitation is about maximizing your functioning, function and your role. It is about being able to reach that maximum degree of function (Occupational therapist), and: Getting them back to as near their original mobility and all their functional ADL’s but realistically (Physiotherapist from a community team).
Such definitions created an impression of being distanced from the client’s wishes and aims, more a process of ‘doing to’ than ‘with’. The other approach, which was evident in four interviews with practitioners, tended to frame rehabilitation in non-expert or lay language and emphasized rehabilitation as being person-centred, enabling and encouraging the service user to set the parameters: I think that [it] is a really personal thing. For me it is where the patient wants to be and where the patient wants to get to you know so you are following and putting in place what they want to do and not what you think should happen along the way. . . (Community support nurse) This support nurse had the benefit of working with service users in their own homes and maintained that until individuals got home that it was not possible for them to decide what was really important for them to achieve. Two other aspects of this approach centred on returning to normal, ‘a process of getting back as far as possible to where you were before’ or ‘really getting back what you had before’. One therapist who gave a person-centred definition spoke of rehabilitation being a very ‘subjective thing’ and in her experience, stroke survivors tended to confound the ‘realistic’ expectation of professionals through their achievements.
Professionals using the person-centred approach emphasized broad adaptations to life. The achievement of specific goals was a means to this broader end. Survivors and professionals accounts of changes and adjustments to life after stroke, did have the same starting point. Both recognized the importance of setting goals. However there was a difference in the ways in which these goals were defined. Survivors were primarily concerned with their unique personal goals and these were set in the context of their own biographies, especially in terms of their identity and activities prior to their stroke and the ways in which their goals could contribute to the establishment of a new competent identity. Some professionals did recognize this process and incorporate it within a person-centred approach to rehabilitation but others did not, seeing rehabilitation in terms of achievement of specific functional goals. In such a context there was scope for disagreement over the nature and achievement of goals and it was within this context that we identified the use of bereavement models.
-Alaszewski A; Alaszewski H; Potter J; Disability And Rehabilitation, 2004 Sep 16; Vol. 26 (18), pp. 1067-78.
Reflection Exercise #7