Paul Pimm is Principal Occupational Psychologist with Scope in the Uk and Manager of the Adult Advisory Assessment Service
A new concept called physiological burn-out is offered. It has been found that cases of premature functional skill loss occur in cerebral palsy, for which no plausible medical or psychological explanation can be found. Four short case studies are used to illustrate deterioration in performance. Physiological burn-out, it is hypothesised, is a condition in which motor function declines in relation to the demands placed upon the physiological system. The greater the demands, the more likely that physiological burn-out will take place. The condition is characterised by reduced physical strength, loss of or significant deterioration in mobility and dexterity, deterioration in speech (dysarthric) and physical exhaustion. It is suggested that the most vulnerable are those who strive to maintain and improve performance, without recognition of the toll this takes physically. Those who are in paid employment and self-supporting in the home may be most prone to this condition.
The definition of the term cerebral palsy is universally accepted as that which covers individuals who are "handicapped by motor disorders which are due to non-progressive abnormalities of the brain" (Crothers & Paine 1988). The condition is characterised by paralysis, weakness, incoordination or other aberrations of motor function; these are caused by "abnormalities of the brain's control centres arising before, during or soon after birth" (Wright et aI 1979). Cerebral palsy is in effect a non-progressive disorder in the sense that the defect or lesion of the brain remains unaltered with time. This does not mean, however, that the condition itself remains static. Rather it is a condition that fluctuates, though the lesion or defect will remain unaltered. It is also a condition that, in some cases, results in premature physical deterioration from which the cerebral palsied person does not recover. It is this issue of premature loss of function that is addressed in this paper. In order to explain this condition I propose to introduce a new concept, that of physiological burn-out.
The concept of burn-out, although a loosely defined term has, since the original academic work on the phenomenon by Freudenberger (1974) and Maslach (1976), being generally accepted as a form of psychological distress that comes from overburdening or over extending the self. Over a prolonged period of time this results in extreme exhaustion, depletion of energy and a deterioration in performance (Maslach 1982: Mather 1983).
The new concept of physiological burn-out that is proposed here is separate and quite distinct from the above definition of burn-out, which is a form of psychological distress. Physiological burn-out occurs when prolonged stress is placed upon the motor system that is already weakened or damaged as a consequence of cerebral palsy and it is manifested by a gradual and premature loss of functional skills. Unlike the traditional concept of burn-out which refers to a form of psychological distress and which may be reversible, physiological burn-out is not a condition which appears to be reversible. However, by good case management and conservation of function, its effects may be delayed or halted.
Over the past eight years a number of cases of individuals with cerebral palsy have - been encountered with premature loss of functional skills. The majority have encompassed spastic forms of cerebral palsy, though a few cases of athetoid cerebral palsy also presented loss of function. It should be noted that the majority of cases seen at The Spastics Society (UK) are of the spastic type. Four cases are - presented to illustrate the nature of the decline. In each case neurological evaluations failed to define the etiology of the decline.
A twenty eight year old male with spastic diplegia and of average intellect who over a period of about two or three years gradually began to lose functional skills. Prior to the decline the individual was able to walk unaided for distances of up to one mile without aids and to climb stairs whilst holding on to the stair rail. He was independent for all aspects of personal care, though fine dexterity was impaired and he required some help with tying laces and fastening buttons. He was employed full time as a clerical assistant, working in a sedentary capacity. This man was highly motivated to work and had a well developed work ethic.
Approximately four years into his employment, performance, both at home and in work, began to decline. Tasks were taking significantly longer to complete, dexterity and mobility were declining and he was becoming increasingly dependent on colleagues at work and his family. Motivation to work remained intact. Indeed, - the individual strived even harder to maintain his previous level of performance. However, this began to prove counter productive, for the more he strived to maintain performance the more physically exhausted he became. Within two years of the decline the individual began to lose time from work and was signed off for - six months due to physical exhaustion. Following a medical assessment which included a neurological examination, the individual returned to work with no medical explanation for the decline. However, performance in work continued to deteriorate even though the individual remained highly motivated. He has now - effectively been considered unfit for work and the employer is considering the possibility of premature retirement through ill health.
A female graduate in her mid-twenties unemployed, who had worked upon leaving university as an information officer. The diagnosis was athetoid cerebral palsy with some spasticity in all four limbs.
She was known before and after her attendance at university. At eighteen years she was able to walk independently, but with an unsteady gait and had sufficient hand control to write. She was independent for all aspects of personal care. Speech was dysarthric though intelligible. Full time employment proved highly demanding, booth physically and mentally. She lived alone and was required to be self-sufficient. For the first two years of employment her work performance was considered acceptable by the employer. However, soon afterwards, her performance began to decline, tasks taking longer to complete, mistakes occurring and fewer tasks could be undertaken during the day. This woman attributed the decline to deteriorating mobility (employment was semi-sedentary and required mobility around the office) and declining physical strength and dexterity. Speech had deteriorated to the point where it was hardly intelligible. She left her employment in order to concentrate on maintaining her independence in the home. Eighteen months after leaving her job previous levels of performance have not been regained. A medical examination failed to reveal any neurological reason for the decline.
A female in her late forties of average intellect with a diagnosis of spastic diplegia. She had been employed in a part time capacity as a clerical worker for most of working life. Whilst there had always been some variability in functional skills, for the most part the ability to walk with the aid of a stick was evident and speech had been intelligible though moderately dysarthric. Hand function had been sufficient for letter writing and coping with all personal care needs. However, she began to experience, in her mid-thirties, increasing difficulty in maintaining previous levels of performance. By her late thirties independent mobility had been lost and a wheelchair was utilised and hand function had deteriorated, both in terms of strength and dexterity. Personal care has now become a cause for concern, it being likely that support will be required to help with some aspects of personal care in the near future. Speech, already dysarthric, was now only intelligible with great care. Although continuing in employment, increasing amounts of support are provided and increased tolerance of poor time keeping is needed. Although investigated medically, no explanations could be found for the decline.
A married man of average intellect with two children in his mid-thirties with spasticity affecting all four limbs. He was employed part time in a clerical/computer operating capacity. He was referred for advice on employment options following his resignation from his previous job. He reported a gradual loss of functional independence over a period of about two years. However, it seemed likely that there had been some loss of function over a longer period. He had a difficult journey to work, often taking up to an hour, in his own specially adapted car. He explained that whilst he coped reasonably well getting to and from work and then coping with his work tasks, he found that he became increasingly tired and exhausted. During the last six months of his employment he began to feel exhausted before he got to work. However, he remained highly motivated for work. Increasing amounts of support and concessions in his office were required. He had contemplated an electric wheelchair because he required to manoeuvre himself around a large open plan office but left the employer before taking any action on this issue. Dysarthric speech became more difficult to understand and public contact using the telephone was discontinued.
This man left his employer twelve months ago and there has been no subsequent improvement in functional skill. He now requires help to cut up his food, to transfer to the toilet and bed and is planning a replacement of his manual wheelchair with an electric model. Medical investigations have revealed no reason for the decline in performance.
These cases are not untypical of those occasionally seen at The Spastics Society. Medical examinations have failed to define the etiology of the decline in physical functioning. Whilst in some cases loss of lower limb function may be secondary to increasing muscle contractures and in other cases loss of upper limb function may be related to acquired cervical spine disease (Reese and Msall et al 1991), there is clearly a group of cerebral palsy individuals for whom no obvious etiology can be defined. When possible medical explanations for the decline in functioning skills have been explored this group appears to remain.
Those individuals for whom no medical explanation can be given for the decline have a number of characteristics in common. These are described below. However, the major characteristic, common to all cases, is a desire to maximise independence. These individuals strive very hard physically to achieve maximum independence, often to the point of exhaustion. They are placing a considerable and continuous stress upon their motor system.
In most of those cases seen at The Spastics Society displaying signs of Psychological burn-out the overriding personality characteristic has been one of great determination to maximise independence. The majority of cases where physical decline has taken place have come from those who are working either full time or part time in paid employment. These are people who are highly motivated to work and to be maximally independent. When the physical decline begins to emerge the individual often strives even harder to maintain previous levels of performance.
There is a group of cerebrally palsied individuals whose functional skills decline earlier than might be expected. This decline can neither be attributed to the ageing process or to physical complications associated with their disability. It is suggested that they are suffering from physiological burn-out. it is hypothesised that the cerebral palsied person's physiological system, continuously stressed and working near to its optimum, becomes over a period of time overburdened and physical functioning, as a consequence, declines. That the cerebral palsied person has to strive and to exert substantially more kinetic energy than his able bodied counterpart, merely in order to perform daily self-help tasks, is well established. When the cerebral palsied individual is also engaged in activities that demand working to time constraints and specific output requirements, as in paid employment, the stress placed upon the physiological system then assumes potentially damaging proportions. Additionally, and depending upon the nature of the condition, there will be in varying degrees increased and decreased muscle tone, involuntary movements, quick and jerky or slow writhing movements of the limbs and tremors. For many people with cerebral palsy the physiological system is in constant turmoil and the potential for physical relaxation is limited.
Whilst this concept of physiological burn-out may be a useful way of describing a hitherto unknown phenomenon, it should not be attributed lightly. It is vital that when loss of function is noted that a full physical and neurological examination be undertaken. The work of Reese and Msall et al (1991) demonstrates, for example, the value of investigating the occurrence of acquired cervical spine disease in some cases of functional loss. Individuals with athetosis, probably because of the excessive rotation, flexion and extension of the head, have also been shown to develop neurological deterioration associated with severe cervical spondylosis and radiculomyelopathy, resulting in loss of functional skills (Fuji et al; Kidron et al 1987).
The value of this new concept of psychological burn-out is twofold. First, it explains a small though significant number of cases for which no medical or psychological explanation can be attributed for functional skill loss. Second, and perhaps more important, it raises awareness of the potential for premature loss of function, which may be with careful management and conservation of function, if not halted then delayed.
A paper by Pimm (1992) discussed the implications of perceiving cerebral palsy as a non-progressive condition. Most significantly carers and the cerebral palsied individual perceived the physical condition as likely to remain static, rather than to deteriorate with time. The major consequence of this perception of the condition was that no attempts would be made to seek professional advice on maintenance of function. The cerebral palsied individual would continue to place excessive demands upon the physiological system and this would be encouraged by carers and professionals. Behind this urge to maintain, develop and demonstrate physical skills was the philosophy that obtaining maximum independence was a necessary prerequisite for being accepted into the able-bodied community. In practice always striving to be maximally physically independent and not recognising this may place an undue burden upon the physiological system, may be counter productive and in the longer term result in less, rather than more, independence.
Identifying cases of physiological burn-out is the last stage in a process that eliminates all other possible causes of functional skill loss. The condition is characterised by :- reduced physical strength, deterioration in mobility and/or dexterity, deterioration in speech (if already dysarthric) and physical exhaustion. A wholly objective diagnosis cannot be reached without a measure of deterioration. In a few cases the physician will have knowledge of the cerebral palsied individual and will be able to make a comparative judgement. In other cases the cerebral palsied person or carer would be the sole source of information. A detailed case history will provide evidence of functional skills before and after the decline. Thus, whilst a physical examination will provide evidence of the present state and be a valuable baseline for judging further decline, retrospective evidence will be necessary from self reports in order to determine the extent of the functional loss.
Medical research is now required in order to determine the mechanisms that underpin this concept of physiological burn-out. Of those cases seen at The Spastics Society, there does not appear to be any significant relationship between the loss of functional skills and cognitive ability, It would, at first sight, appear to be a purely physiological reaction related to the excessive demands placed upon the body. However, this will be for research to clarify. Meanwhile it would be appropriate for those in the field to caution against the pursuit of independence skills at all costs, for any short term gains may be offset by the longer term consequences of premature functional skill loss.