Stroke: The silent Cinderella!
Isobel Hubbard DipApScOT, MOT; Program Coordinator, Allied Health Researcher.
Isobel Hubbard, Postgraduate Studies in Stroke Management, School of Medicine and Public Health, University of Newcastle, Callaghan, New South Wales 2308, Australia. Email: firstname.lastname@example.org
Australia's National Stroke Foundation (2004) states that a stroke occurs every 11 min and that it is one of the leading causes of disability in adults. Stroke is a chronic disease, which, with our ageing population, is going to make increasing demands on occupational therapists and stroke services. The search is on for improved outcomes for stroke survivors and improved interventions in stroke management, prevention and health promotion. Dr Graeme Hankey, a world renowned Australian medical specialist in neurology and stroke, nominated stroke as the ‘Cinderella’ in health care, and went on to say that ‘progress in stroke management has been hindered by ignorance, nihilism and negativity’ but that this ‘has all changed in the past decade’ (preface) (Hankey, 2002). For Australian occupational therapists, perhaps the most noticeable change in stroke management in the past decade has been the very recent proliferation of what are being referred to as ‘stroke units’. A stroke unit has been defined as ‘any unit or ward within the hospital/trust that is designated by local agreement as a stroke unit either for the acute care or for the rehabilitation of stroke or both’ (Irwin, Hoffman, Lowe, Pearson & Rudd, 2005, p. 307). This proliferation has been a direct result of one of the most significant items of evidence concerning stroke management. This evidence has been supported by a number of systematic reviews, the highest level of evidence available at present, including three Cochrane reviews (Outpatient Service Trialists, 2003; Stroke Unit Trialists’ Collaboration, 2001, 2005). What is this outstanding piece of evidence? It is the fact that stroke units have been shown to be the single most effective tool in improving outcomes for stroke survivors!
This one item of evidence should cause great excitement among occupational therapists, as it has profound implications for our professional contribution into the health-care management of those affected by stroke. Stroke units are phenomena that have been found to be effective as a ‘package’, as opposed to being a single component or variable. Therefore, even if you were able to measure each of the individual variables that makes up this ‘package’, chances are, the sum of the individual variables would not equal the sum of the package. Put another way, there is evidence that the interplay between all the individual components making up a stroke unit appears to be both statistically and clinically significant. A stroke unit incorporates a complex component: the multiprofessional team, which is neither easily defined nor researched. Yet this integral component has been highlighted as a result of using the very research methodology and rating tools that have been so supportive of the biomedical model; a model so much a part of health care in the past decade (Reynolds, 2005). Considering how important this piece of evidence is to the profession of occupational therapy, there appears to be scant awareness among us of this exciting and significant finding. Is it possible that occupational therapists may still be hindered in their progress in stroke management by ‘ignorance, nihilism and negativity’ (Hankey, 2002; preface). This paper will aim to explore these issues.
Stroke and ignorance
Could it be that occupational therapists are unaware of the fact that in recent years there has been a ‘mini-revolution’ in stroke management (Bogousslavsky & Caplan, 1995)? There is some evidence to support this (Good, 2003; Held, 2000). It is worth observing that within this particular journal, there appears to be very little commentary concerning stroke. Considering its profile within the Australian health-care industry and within the arena of disability, and considering the recent ‘mini-revolution’, it would appear that stroke is underrepresented in this literature resource. Since 1998, it was only possible to find a handful of articles that directly related to the health-care management of those affected by stroke. These included one study that discussed neurology and its inclusion in an undergraduate programme (McCluskey, 2000), one study reviewing the Rivermead perceptual assessment (Donnelly, 2002) and two studies reviewing stroke therapy (Gustafsson & McKenna, 2003; Hoffman, McKenna, Cooke, & Tooth, 2003). Clearly, evidence concerning stroke management is not limited to this journal, but is found in journals such as Stroke, Brain, Clinical Rehabilitation and Neurology. Even so, this finding highlighted the fact that maybe within the Australian occupational therapy community, stroke remains the silent ‘Cinderella’. So what is it then about stroke, that as occupational therapists working in the 21st century, we may be unaware of? Listed below are a few issues for your consideration.
The term ‘CVA’ (cerebrovascular accident), so readily used in the rehabilitation context, is a term that is being actively discouraged. The reason this is occurring is that stroke has no association with accidents and is, in fact, a preventable disease, with modifiable risk factors (Hankey, 2002). It is now understood that CVA, which incorporates the term ‘accident’, generally supports certain misconceptions, including that not much can be done to:
- • Prevent a stroke from happening
- • Reduce the impact of stroke at the time of the event
- • Prevent a recurrence of a further stroke event and
- • Regain abilities which were initially ‘lost’ as a result of stroke
The advances in stroke epidemiology (Ebrahim & Harwood, 2001) have meant that we now know that there is a great deal that can be done concerning all of these issues.
Stroke: A serious emergency
The term ‘brain attack’ is aimed to reflect the advances in acute stroke management that have meant that it is now vitally important that people experiencing stroke access the appropriate stroke services within a 3-h time frame. There has never before been a sense of emergency connected with a stroke event; but those days are past, and there has been a public campaign with the aim of educating the community, general practitioners and ambulance services concerning the sense of urgency that now accompanies a stroke event. The term ‘brain attack’ (mirroring the term ‘heart attack’) is being utilised in some countries to highlight that sense of urgency. The reason for the sense of urgency is to limit the amount of cortical and subcortical injury with treatment options such as thrombolysis, a reperfusion treatment (tPA) that is showing remarkable improvements in acute stroke outcomes (Miller & Elmore, 2005).
The term ‘TIA’ (trans-ischemic attack) is also being actively discouraged. The reason for this is that a TIA is still a stroke, and that its differentiation is somewhat arbitrary. The fact that it appears to ‘resolve’ within 24 h does not diminish its importance as a predictor of further stroke. Therefore, in some area of health-care services, a person diagnosed with TIA is either being admitted for further review, or being referred to TIA clinics. Both of these ‘clinical pathways’ are to allow for the implementation of preventative stroke therapies. Currently, the preferred term for a TIA is a ‘mini-stroke’.
The term ‘brain plasticity’, although not new, is gaining increased prominence because of the mounting evidence that supports that brain plasticity is an important contributor in stroke rehabilitation. Carr and Shepherd (2003) state that the ‘evidence to date is very compelling in terms of the importance of intensive training in behaviourally relevant tasks in a stimulating and enriched environment after cortical injury. What is certain is that the brain reorganises after injury’ (p. 7). Even though stroke rehabilitation and the role of the multiprofessional team has been referred to as a ‘black box’ when it comes to research (Bode, Heinemann, Semik & Mallison, 2004; Hildick-Smith, 2000), there is nevertheless increasing opportunity to measure brain activation patterns following stroke, and to begin to compare those patterns with some of the outcome measures frequently utilised in occupational therapy practice. Dr Leanne Carey, an Australian occupational therapist, is currently involved in some innovative research into brain activation patterns and upper limb retraining following stroke (Carey, Abbott, Egan, Bernhardt & Donnan, 2005). There is some indication that occupational therapists specialising in stroke may need to become more familiarised with medical imaging, in order to better understand what is occurring in cortical reorganisation and its relationship to rehabilitative interventions and therapies.
For occupational therapists, perhaps the most important piece of evidence that all of those involved in chronic disease management should be aware of is that stroke units are currently the single most important contributor to improved outcomes for stroke survivors. A clinically significant component of what is referred to as a ‘stroke unit’ comprises the multiprofessional team that should, according to the Clinical Guidelines for Stroke Rehabilitation and Recovery (National Stroke Foundation, 2005), include an occupational therapist. This evidence has implications for multiprofessional teams within any area of occupational therapy. It highlights that:
- • Complex entities such as multiprofessional teams can be researched to the highest level of evidence.
- • What we may consider as a ‘given’ is, within today's evidence-based health-care environment, still in need of supportive evidence.
- • Occupational therapists are being recognised as major ‘players’ and/or stakeholders in certain sections of our health-care systems.
Some might say that our lack of awareness as occupational therapists in this day and with the educational and web-based resources at our disposal is inexcusable. However, often therapists working in the clinical setting do not have ready access to the Internet, nor to full text copies of evidence in a literature format, to educational forums or conferences, nor to scholarship funding or designated work time for continuing professional education. Should pressure be brought to bear on those in management to provide the resources and educational initiatives required to achieve evidence-based health care and best practice?
Stroke and nihilism
Nihilism is defined (using Microsoft Word's Thesaurus) as ‘disbelief in objective truth’, and ‘the belief that there is no objective basis for truth’. It is also closely associated with scepticism and negativity. This seems a somewhat harsh reflection on the health-care management of those affected by stroke, and yet, it has nevertheless been stated by one of our leading Australian neurologist specialising in stroke, and as such, is worth our consideration. Concerning nihilism: has the Australian occupational therapy community involved in the care of stroke survivors been reluctant to be objective in their understanding concerning stroke and its outcomes; and has this understanding and belief influenced their therapies and interventions?
There is evidence that, concerning stroke, therapists are still working within the knowledge and belief that ‘once an area is damaged, its function is lost’ (Held, 2000, p. 189). Following on from that belief is the compensatory interventional frame of reference that leads the occupational therapist into a role of assisting a patient who has ‘suffered’ a stroke in their adjustment to the disabilities with which they are now ‘afflicted’ (Good, 2003). The terms ‘suffered’ and ‘afflicted’ are terms that inherently exaggerate the patronising attitude that supports the above beliefs, and, I suspect, also overstates what is truly happening within occupational therapy practice in the health-care management of those affected by stroke. However, it highlights the covert links between knowledge, attitudes, beliefs and practice. This is where evidence-based or research-based health care can assist. By becoming familiar with the ‘objective’ information concerning stroke, or any other disease or disability for that matter, an occupational therapist is better able to distinguish the objective from the subjective. Nihilism does require that having been exposed to the evidence, a decision has been made to actively ignore it, and, I suspect that this too would be overstating what is truly happening in occupational therapy practice in stroke management.
Stroke and negativity
Concerning negativity: within the occupational therapy community, has specialising in stroke been portrayed and admired as a positive and well-respected professional goal? If a fourth year occupational therapy student, looking for some direction for his or her future, asked you to identify an area of practice that was experiencing exciting change, that was ‘going ahead’ with new and creative interventions and therapies, that was full of job opportunities and career advancements, and that had yet to be fully realised as a specialty area in occupational therapy, would stroke be one of the first areas that would come to mind? Perhaps not! Within occupational therapy, stroke has never been particularly recognised as an area which we would necessarily want to specialise in. It is not often that you would hear a new graduate state with obvious excitement that he/she has always wanted to work with stroke survivors. This sense of ‘call’ has ordinarily been associated with speciality areas such as paediatrics, occupational rehabilitation and spinal cord injury.
The Cinderella, who was ‘silently’ doing her chores around the home of her stepsisters, is now preparing to go to the ball. The mini-revolution in stroke is occurring and occupational therapy has the potential to play a strategic and innovative role. It is an integral part of the stroke unit, and its speciality is recognised in all phases of the health-care management of those affected by stroke, from the acute through to the community, from prevention through to rehabilitation, and from the individual stroke survivor through to health-care systems and institutions. There is a cry from the professional stroke community for allied health to become involved in stroke research, in stroke education and in the search for improved outcomes for stroke survivors. The challenge is there for all of us to support our colleagues in the health-care management of those affected by stroke as they work out their contribution within this revolution, as they accommodate the enormous changes occurring in stroke management, and as they champion the cause of stroke and occupational therapy.