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Living with Stroke: A Phenomenological Study
Issues in social recovery
It was clear from the data that each informant's stroke had profound implications that pervaded all aspects of their social world. Two of the informants had been forced to give up part-time employment. Balances in family and social networks were disrupted, and informants expressed concern and difficulties in re-defining their perceived contribution to social and family life. Each stroke had precipitated immense changes, the repercussions of which appeared to be never-ending.
Changing roles: Some informants felt resigned to accepting a passive role in interaction with hospital staff, particularly in the early stages of their stroke. This appeared to be mediated by perceptions of the importance of knowledge held by the professionals who were working for them. Informants who had continued to work after retirement expressed particular difficulties in coping with this situation: "I felt stupid. You know. Being taught to chew my food. I mean I know why. [speech therapist] told me why we were doing this, but it didn't really help." All informants reported that their roles and responsibilities were threatened, notably in areas of work, finance, family and social networks. Although perceptions varied between each individual, a pattern was recognized in the data involving the continuous appraisal and re-appraisal of social role: "I had always driven us to [supermarket] on Friday evenings. I couldn't do it anymore. I suppose it's daft but it was what we did together. Not any more. I help put the things away. Well as much as I can. But it's not the same." Re-appraisal did not necessarily imply an acceptance of the new situation, rather than an adjustment of role. Often these adjustments were evaluated in terms of pre-stroke life, and only rarely in terms of a positive step on the road to recovery.
All informants at some time in the study referred to feeling as though they were isolated or stuck in a cage: the cages ranged from their bodies, to the hospital and their homes. All references to this were accompanied by feelings of frustration and anger. Waiting appeared to be a key feature of this isolation; waiting for help, waiting for family and friends to come: "I always feel that I'm just stuck in this chair, waiting for something to happen. It's really difficult."
Reflections on previous life
Informants often felt that their new lives were essentially unfamiliar. Some activities previously enjoyed no longer appeared to give them pleasure. No informants referred to their present life on a par with their pre-stroke life. Even when specific activities had been re-mastered, the social meaning of those activities appeared to be missing: "I could manage to hold [pack of cards]. I suppose I enjoyed doing it again. But when I think back to [card parties] it wasn't the same." All informants reported that they would not be able to forget their stroke, and that it would be an important issue for the rest of their lives. They felt that the stroke would have an impact on all aspects of their future lives. It appeared that the 'real' work of recovery began when informants felt that they were on their own, and professional input had been stopped. Some reported that professional input was artificial, where the context of therapeutic activity that was designed to help them undertake specific activities bore little resemblance to their own home environments: "They teach me how to do bits again. But then I go out and look at [the local environment] and it's all so unreal." The clinical environment differed substantially from the reality of informants' own social environments. Informants seemed to have little support in facilitating the adaptation of skills learned with staff in the hospital.
Conclusion And Recommendations
Understanding how patients experience illness is an essential prerequisite to the development of appropriate strategies to facilitate recovery. Most studies have tended to describe stroke recovery using an incremental linear model. Doolittle (1992), for example, details recovery as phases which relate to the time frame of her study. As a result, her interpretation of recovery from stroke can be seen to infer a two-stage model comprising of acute and rehabilitation phases. The limitation of this approach is that it supposes a normal path of recovery, with phases of stroke that have a core content. Application of this description of recovery to the development of nursing rehabilitation interventions necessarily focuses attention on the physical domains of recovery within a time-frame largely dictated by the boundaries of professional service.
The study described here details the experiences of recovery from stroke into the long-term by tracking patients for at least 12 months. Whilst the descriptions of some experiences relating to the early stages of stroke reinforce those of other researchers, the nature of individual definitions of recovery may require a re-appraisal of existing models of stroke service provision. This study suggests that stroke is an intensely personal experience, involving the rebuilding and restructuring of an individual's world. The real work of rehabilitation described by informants was the translation of learning from the institutional setting to their home environment. The social context of recovery was extremely important where the focus of recovery was enabling participation in the social world through adaptation and the development of coping skills, rather than improvement in discrete physical function alone.
The complex nature of recovery and the range of possible stroke sequel identified in this study highlight the considerable challenge that stroke sufferers and their carers can face. Rehabilitation programs must equip stroke sufferers and their carers with the support, skills and knowledge to shape their future lives in a meaningful and fulfilling way. A recent survey undertaken by a stroke patient advocacy group suggests that there is much to be done in improving the appropriateness and utility of existing service provision (Stroke Association 1994).
Implications for practice
Existing frameworks to consider the development and delivery of stroke services tend to be underpinned by professional interpretations of recovery, and may have limited relevance to the concerns and experiences of the individual. Rather than focusing on acute and rehabilitation services, new strategies that reduce existing boundaries of service provision and help patients and their families adapt to life with stroke need to be explored.
It would appear that any new strategy should include at least three features. The co-ordination of service provision requires an over-arching perspective from stroke onset into the long-term. To be relevant this perspective must be underpinned by an appreciation of patients' experiences of stroke. The expansion of nursing interventions aimed at the development of coping and adaptation skills at home after discharge from in-patient services requires consideration. Lastly, the importance of the social context of recovery after stroke should be recognized. This would require the imaginative integration of hospital and community rehabilitation services, for example through hospital out-reach or community in-reach, to enable them to be able to respond flexibly to patient and caret need.
- Burton, Christopher. Journal of Advanced Nursing, Aug2000, Vol. 32 Issue 2, p301-309, 9p
Reflection Exercise #2
The preceding section contained information about living with stroke: a phenomenological study. Write three case study examples
regarding how you might use the content of this section in your practice.
Why did some stroke patients feel resigned to accepting a passive role in interaction with hospital staff, particularly in the early stages of their stroke?To select and enter your answer go to .