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Re-Thinking Stroke Rehabilitation
The Trajectory Framework
The trajectory framework, which purports to describe the experience of chronic illness, has evolved during 30 years of research and observation of practice. The framework as a grounded theory, was developed from an extensive research programme on dying, and was refined in studies that included a range of settings and patient groups (Corbin & Strauss 1992). Since its development the trajectory framework has been applied to a number of patient groups: cardiac illness (Hawthorne 1991), cancer (Dorsett 1992), multiple sclerosis (Miller 1993), diabetes (Walker 1992), and elderly patients with chronic illness (Robinson et al. 1993). However, its application to stroke rehabilitation has received little attention.
The central concept of the framework is e trajectory, or illness course. For individual patients this course represents the cumulative effects of a disabling illness including physical symptoms, and the impact of the illness on an individual's social world challenging perceptions of self-identity, termed biography. Although individual trajectories can only be mapped retrospectively in light of responses to illness, a prospective view of a trajectory can be based on the knowledge, beliefs, values and experiences of patients and professionals (Thorne & Robinson 1988). The key to the utility of the framework lies in the assumption that although each individual with a chronic illness experiences the disease process in a unique way, there are common phases which involve changes in health status and intervention need.
The first stage in a trajectory (pre-trajectory) occurs before the onset of symptoms, and consequently before a formal diagnosis is made. This emphasizes the importance of illness prevention within a framework for managing chronic health problems. When signs and symptoms appear (trajectory onset), these can pose a significant threat to the physical, social or psychological integrity of an individual (crisis phase). The onset of symptoms may precipitate a period of illness that requires active intervention, usually in an in-patient setting, to prevent the worsening of symptoms, or the prevention of complications associated with the effects of the illness (acute phase). Where intervention is effective, a period of stability may be reached which will require varying degrees of intervention to maintain individual health (stable phase). An individual will, however, experience challenges to their recovery either directly or indirectly associated with their illness which require a reappraisal and adaptation of interventions, usually without admission to a hospital setting, to promote coping and stability (unstable phase). Responses to these challenges to recovery will at some point, however, be unsuccessful, and the patient's recovery may deteriorate (downward phase) to such a point that the patient may be terminally ill (dying phase).
The phases of an illness trajectory do not represent a rigid framework for the linear consideration of a patient's response to illness. Each phase, for example, may include several sub-phases which include movement in either direction along a trajectory which can be of considerable duration. This dynamism reflects the continual nature of adaptation that characterizes living with chronic illness (Locker 1983, Chilman et al. 1988).
The purpose of stroke rehabilitation nursing within this framework would broadly appear to be to manage a patient's illness trajectory with reference to the biographical effects of stroke. In practice this requires both the acquisition and use of in-depth knowledge relating to an individual's biography through active participation on the part of the patient and family, and importantly, the provision of rehabilitative interventions geared to the restoration of independence. In this way professional intervention can be appropriate to the individual. According to Corbin and Strauss this may include facilitating the adjustment of biographical and social dimensions of illness to encourage coping and adaptation (Corbin & Strauss 1992).
Robert was 78 years of age and married at the time of his stroke, and had been working part-time as a gardener for a young couple. Discussions about his life before stroke highlighted that he had been diagnosed with moderate hypertension by his general practitioner approximately 3 years before his stroke, and was taking antihypertensive medication. Although he was aware that he was at risk of stroke, the onset of physical symptoms was shocking for both Robert and his wife. Robert had his stroke during the night when he was awake but in bed, and he remembered feeling a sudden onset of numbness, weakness and slurring of his speech. His wife recognized his symptoms, and telephoned the emergency services. He was admitted to an acute medical unit via the hospital accident and emergency department.
The early stages of Robert's admission to hospital were complicated by an extension to his stroke which again he was able to perceive. He described it as ‘feeling his body fall way from him’, and it precipitated tremendous feelings of fear and helplessness. Gradually Robert's condition stabilized with conservative and preventative treatment and he was transferred to the hospital's rehabilitation unit 8 days after his admission. When he arrived on the unit he was unable to weight-bear and had very limited ability in his arm and hand. His speech, although still slurred, had improved to a degree where he could participate in short conversation. He complained of feeling persistently tired.
His stay on the rehabilitation unit was of approximately 3 weeks duration, in which time he received physiotherapy for mobility and arm function, and occupational therapy to improve his ability to dress himself. By the time he was discharged. Robert could transfer between a chair and bed independently, and could mobilize with the help of one person and a walking frame. He was discharged home with follow-up physiotherapy arranged through visits to a day hospital. His wife was able to undertake some aspects of his physical care at home, particularly in helping him to wash and dress. Follow-up assessment by the community nursing services was arranged that aimed to ensure that his wife was coping with Robert at home.
I had interviewed Robert four times whilst he was in hospital, and during the last week of his stay he was enthusiastic: about the prospect of returning home. His wife appeared optimistic about their ability to cope. When he finally did get home, however, things did not go well. Robert became very loathe to use his walking frame and insisted on acquiring a wheelchair from a local voluntary. organization. Although they lived in a flat, his willingness to move between rooms in the wheelchair decreased, and he spent more and more time in one room on a sofa. He was reluctant to go out with his wife, feeling that he was too much of a burden. He did, however, persuade a friend to take him to the local pub once a week in his wheelchair. He felt that this was his way of giving his wife a rest from coping with his stroke.
Although he maintained physiotherapy at the day hospital he was reluctant to practice activities at home. He expressed a fear of his home environment and feelings of anger that his home was no longer a comfortable and welcoming environment. Although over the next 2 months his hand function had not clinically improved, he attained an ability to manage a ‘hand’ of cards at the local pub using a ‘shelf’ constructed by a friend. This enhanced his outlook on his recovery and his motivation to tackle the effects of his stroke.
Although in most respects they were coping with the aftermath of his stroke, it was still an important feature of their life together. His wife, for example, had suffered a chest infection which required a short period of hospitalization. Robert's stroke required a re-appraisal of their usual coping strategies in that their daughter, who lived a considerable distance away, moved in for a short period to help Robert. In this way his stroke continued to shape his life, and his responses to new problems as they arose.
The vignette demonstrates a complex path of stroke recovery: the participant's route to home included three different care environments, emergency, acute and rehabilitation, each with a different intervention focus. Once home, some physiotherapy services continued to be provided in the hospital environment. The return home appeared to represent the most important transition of care and presented considerable challenges to Robert and his family; however, it was anticipated with enthusiasm. The impact of stroke on bath the patient and family was clearly immense, requiring considerable learning, appraisal, adaptation, and the development of effective coping mechanisms. For example, although Robert received formal rehabilitation from a variety of therapists, particular difficulties were experienced in continuing this work at home.
Although there is a growing body of research which describes the physical, psychological and social aspects of stroke recovery, studies have tended to be either cross-sectional in nature or with only limited follow-up of participants over time studies (Mumma 1986, Doolittle 1991, Folden 1994. Häggström et al. 1994). The longitudinal nature of the study from which this vignette is drawn provided the opportunity to capture the considerable work associated with effective recovery after professional input had been reduced. Doolittle (1992), for example, refers to a process of experimentation where stroke patients begin to learn to cope with stroke by trial and error. Much of this experimentation occurs at home, often without recourse to the knowledge and skills of health professionals, and may place considerable demands on the patient and family. This demonstrates the importance of maintaining a prospective vision when designing and implementing therapeutic nursing interventions that aim to promote long-term recovery, and is a central feature of the trajectory framework.
Descriptions of learning, adapting and coping at home by the participant were set within the context of abilities to participate in life activities that had a wider social meaning, for example playing cards. The repercussions of stroke for the social world of this participant and his family were extensive, and were a central feature of responses to a wide variety of issues. For example, the response to his wife's illness was mediated by a requirement to ensure that arrangements were made for his needs. The biographical component of the trajectory framework stresses the impact that illness can have on an individual's ability to participate in his/her social world, and the continual process of self-adaptation required to come to terms with an illness. Where stroke results in some form of disability, this component may, however, promote the adoption of individualistic models of rehabilitation. The emphasis is clearly on helping the patient to adjust their life-course to their disability. This has the potential to neglect the social and environmental causes of disability (Northway 1997).
With respect to the concept of trajectory phases, there are a number of similarities between the participant's recovery path and the framework. These are demonstrated in Table 1. Pre-trajectory issues related to risk-factors for stroke: the participant had hypertension for which medication had been prescribed. Considerable evidence from epidemiological studies highlights the risks of stroke associated with hypertension and smoking (Royal College of Physicians 1989). Corbin and Strauss highlight the importance of health promotion activities as a feature of implementing a trajectory model of nursing, where the focus of nursing care includes both the prevention of chronic illness and the facilitation of coping with the effects of disabling illness (Corbin & Strauss 1992).
The trajectory onset phase of stroke is characterized by the onset of symptoms which may be varied due to the differing types of stroke pathology. Responses to this phase may be mediated by a range of variables that can largely be attributed to the patient, for example where the symptoms were first experienced, the degree of severity of the disease, and the biographical components of the trajectory. In the case presented, the participant's wife was able to recognize the signs of stroke and act accordingly.
The crisis phase of the trajectory framework is defined by a life threatening situation requiring emergency in-patient care (Corbin & Strauss 1902). For this patient, emergency care was facilitated by admission to an accident and emergency facility. This aspect of stroke service provision may, however, be extremely variable. In the UK, initial stroke severity and the beliefs of health professionals about the appropriateness of hospitalization for stroke can mean that stroke patients are not always admitted to hospital (Anderson 1992, Stroke Association 1009), indicating that further study of the trajectory onset and crisis phases of a stroke trajectory is required.
The acute phase is characterized by interventions planned and delivered in an acute care setting, either for active illness or for complications of active illness. In this vignette, the acute phase related principally to active illness and no further periods of in-patient care were experienced during the study time frame. At this time, the principal aims of treatment for stroke from the professional perspective are geared towards diagnosis of the type and severity of stroke, and stabilization of the patient's physical condition, including the maintenance of blood perfusion, hydration and nutrition (Gibbon 1095). Nursing interventions also focus on the prevention of complications including pressure damage and aspiration pneumonia. Analysis of the vignette demonstrates that a stable phase had been reached by the thee of transfer to the rehabilitation unit, and professional rehabilitation commenced. This stability would appear to relate to physiological status as a result of neuronal stability. Stability as defined by Corbin & Strauss (1992) implies that the trajectory of recovery remains on course as a result of a planned package of interventions.
The vignette demonstrates two challenges to the maintenance of the given trajectory: the participant's discharge home and his wife's illness. In both cases, the participant and his wile adapted to the trend of the trajectory without recourse to health professionals. The unstable phase is defined as when the course of illness is not controlled by planned services, but can be managed without recourse to an in-patient setting. The trajectory framework implies that the responsibility to manage a return to a stable phase rests with the professional (Corbin & Strauss 1992), and therefore has the potential to neglect the experimentation and adaptation by stroke patients and carers that often goes on unnoticed (Doolittle 1992).
Although the time frame of the original study was long in comparison to other studies in this area, it failed to capture events and responses which can fit the downward and dying phases of the trajectory framework. Further evaluation is required to clarify and refine the meanings of these trajectory phases for stroke patients. One of the most striking features of the vignette, however, is the persistence of stroke as an important issue for future life, where responses to stressors and challenges are mediated by the effects of stroke. The trajectory framework consequently succeeds in presenting a matrix of concepts that emphasize the long-term nature of recovery from stroke.
The trajectory framework does not imply death to be the final stage of stroke recovery. Indeed, in some circumstances, health may he maintained or improved along the stable phase of the trajectory. What is implied, however, is that the experience of illness will be present until death, and that the individual response to subsequent health problems may be mediated by experiences along earlier trajectories. One of the most interesting points to emerge from this exploration is that patients, having entered the trajectory, do not actually emerge from it over time. The stroke survivor will continue to be a survivor of stroke. This has relevance to the reported psychological trauma of having been through and survived a life threatening situation, and may persist into subsequent acute and chronic illness patterns.
Implications for practice
At a strategic level, the development of a seamless stroke service requires collaboration across a range of professional groups and health and social care providers. The phases of the trajectory framework have the potential to provide an overarching perspective between in-patient and community care settings by focusing on the experiences of patients, rather than traditional boundaries of professional service provision. As the framework is grounded in the patient perspective of illness, it may provide a blueprint for the development of stroke services, without promoting the value-base of any one professional group.
The trajectory framework presents a realistic structure for clinical practice against which treatment and rehabilitation plans and goals for stroke recovery may be set and evaluated. It allows the consideration of a wide range of contextual issues, including patient biography, that affect the recovery path for stroke. This requires effective communication and collaboration with both patients and carers that is capable of eliciting in-depth information of pre-stroke life and patients' social worlds.
Corbin and Strauss (1992) define the process of trajectory management as:
Identifying the patient's trajectory phase and setting goals.
Assessing the factors likely to influence trajectory management (including resource and environmental constraints, and biographical factors).
Determining which factors are to be targeted for manipulation.
Implementing the appropriate nursing interventions and evaluating their effectiveness.
These activities require considerable knowledge of the full range of physical, social and environmental issues that affect stroke recovery, many of which may not easily be amenable to manipulation. Those that will be most amenable to manipulation will focus on the individual perspective, and may result in the reinforcement of individualistic models of disability criticized by Northway (1997). An appraisal of nurses' existing networks with statutory and voluntary organizations that have the capacity to influence social, physical and economic factors that affect stroke patient recovery would be required.
- Burton, Christopher. Journal of Advanced Nursing, Sep2000, Vol. 32 Issue 3
Reflection Exercise #6
The preceding section contained information about rethinking stroke rehabilitation. Write three case study examples
regarding how you might use the content of this section in your practice.
How do Corbin and Strauss define the process of trajectory management? To select and enter your answer go to .