Análisis estadísticos

Within medicine brain injuries are continually classified and reclassified with new diagnostic categories being introduced, different types of injuries and patients being brought together or divided. There is much variation in diagnostic criteria and classifications of brain injuries and a lack of consensus within the clinical literature around the world (Bruns and Hauser 2005). However, causes of brain injuries are broadly categorised as ‘traumatic’ (e.g. from a blow to the head), ‘cerebral-vascular’ (e.g. stroke), ‘diffuse axonal’ (the result, for example, of shaking or sudden deceleration) or ‘hypoxic’ (e.g. from strangulation, drowning, or suffocation). All four types of injury are often brought under one umbrella term - ‘acquired brain injury’ (ABI)5 _{- a term which draws an important distinction/division between those who}

5 _{Cerebral-vascular events are often separated in the clinical and guidelines literature and in clinical}

practice - with neurologists leading treatment of people post TBI and old aged medicine or specialist stroke consultants leading treatment for people post stroke.

21 were born with brain injuries or those that occurred during birth (including hypoxic injuries – such as cord strangulation) and those who ‘acquire’ brain injuries postpartum, during their life time. ABI distinctions however do not stop there. In health and social care – in its organisation, delivery and monitoring of quality - patients with ABI now tend to be divided less by brain injury type and more by need and age, divided into ‘younger or working aged adults aged 16-65’6 _{and those aged}

‘65 and over’ (Turner-Stokes et al. 2005, p.2).

1.0.2 Incidence, epidemiology and impact

In the United Kingdom (UK) approximately 10,000-20,000 people sustain a severe ABI each year, with a person being admitted to hospital with an ABI every 90 seconds (Headway 2014). The prevalence of acquired brain injury is approximately 558 residents per 100,000 of the population and over 1 million people in the UK live with the long-term effects of brain injury. Between 2011-2012 there were 353,059 people admitted to hospital due to an ABI (Headway (2014). Brain injuries can cause mild to catastrophic impairments (Turner-Stokes et al. 2007) including physical, sensory, cognitive and behavioural difficulties which can severely impede activities of daily living (Blake 2008). Approximately 30% of those that survive severe brain injuries are left with significant and long-term neurological impairments (Turgeon 2013).

1.0.3 Defining Severe brain injury

Severity of brain injuries is categorised in the clinical literature (although not consistently or with consensus) as mild, moderate or severe (Brasure et al. 2012). Severe brain injury (SBI) is defined from two points – at the time of insult before the outcome is known and the post injury outcome. For example, acute care clinicians who look after those immediately after injury define SBI as “an insult severe enough

to cause an acute and persistent loss of consciousness and to entail a significant

6 _{16-65 is the clinical age range given to younger adults and to draw a distinction between children}

and adults for service provision in acute care. In the UK, long-term care provision for adults regulated under the Care Quality Commission is s pecified as 18-65. It is this latter age range based on those residing in long-term rehabilitative/care facilities on which this PhD focusses.

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likelihood of death or of long-term disability” (Stevens and Sutter 2013, p. 1104). In

comparison, rehabilitation professionals, working with patients who have survived their injury and are at a point where the affect upon their functioning is apparent, define SBI, from the point of view of the injury’s impact on the individual’s ability to conduct ‘activities of daily living’ (e.g. Kelly and Nikopoulos 2010; Bender, Bauch and Grill 2015).

The clinical trajectory of recovery following SBI is considered as three basic processes/stages: 1) the emergence of conscious awareness, 2) the recovery of higher neuropsychological processing, and 3) the return of functional capacity (Stevens 2006; Stevens and Sutter 2013). The rehabilitative focus of this thesis focusses on the stage of care of people for whom their clinical trajectory and the impact of their injury is now apparent. Here SBI refers to a range of patients, who, as the result of brain injury are left with multiple physical, sensory and/or cognitive impairments which prevent them from doing the very basic things of everyday life, such as eating, washing, walking, talking, planning, remembering. What prevents such individuals carrying out such tasks includes damage to areas of the brain which control the contraction of muscles to produce movement and the co-ordination of such movements. For example, in swallowing or speaking, damage to areas of the brain which coordinate and decipher information such as language or visual stimuli and insult to areas of the brain which controls ‘higher functions’ such as thinking and moderate emotions such as anger.

Within the category of SBI are yet a further subset of people – those in a disorder or consciousness (DoC) - an umbrella term which refers to a collection of disorders: coma, the vegetative and minimally conscious state (Bernat 2009; Owen 2008; Demertzi et al. 2011). In this subset of brain injured people, they have not completed stage one highlighted above and have not fully regained conscious awareness. Those in a DoC form a subset of people with severe brain injury, made distinctive by their lack of consciousness as well as profound and multiple physical, sensory and cognitive impairments. In comparison to the broad lack of consensus regarding how brain injuries in general are categorised and defined in the literature, DoC are very

23 carefully and consistently defined. These different disorders are however distinct. DoCs is important here because these people, people with the most severe of brain injuries, are part of the population on which this thesis focuses.

1.0.5 Disorders of Consciousness: Coma, the vegetative and minimally conscious state

Briefly, ‘coma’ although a term in common parlance to cover a range of disorders of consciousness actually refers to the state of unconsciousness which rarely lasts for more than a few weeks. Most people who remain unconscious (rather than dying or recovering consciousness) after a few weeks enter either a vegetative or minimally conscious state. The vegetative state (VS) is a state in which people:

never regain recognisable mental function, but recover from sleep-like coma in that they have periods of wakefulness when their eyes are open and move; their responsiveness is limited to primitive postural and reflex movements of the limbs (Jennett and Plum 1972, p. 734).

If a patient is in a VS it is deemed ‘permanent’ (with recovery of consciousness highly unlikely) after several months or a year, depending on the nature of the original injury (and considering issues such as infections, medical stability, any trajectory of change) (see Royal College of Physicians guidelines 2003; 2013 and Multi-Society Task Force 1994).

The minimally conscious state (MCS) is the final and newest defined of the conditions under the umbrella of ‘disorders of consciousness’.7 _{This is defined as being a}

condition in which the person shows limited and inconsistent, but clear evidence of awareness (Giacino et al. 2014; Estraneo et al. 2015). Unlike VS patients, people in MCS can sometimes, but not consistently follow simple commands, make verbal or gestural yes/no responses, have some intelligible speech or make purposeful movements. The line between vegetative and minimally consciousness, can often be very small, so much so, that diagnoses of VS or MCS are often contentious.

7 _{For a sociological account of how this diagnostic term has been created and contested see}

24 Apart from those with the mildest of brain injuries, most people who sustain brain injuries will require some form of treatment and rehabilitation. SBI causes impairments which require long hospital stays in acute care, prolonged periods of rehabilitation and for some, long-term institutional care (Corrigan et al. 2010).

1.1 The construction of people with severe brain injury in medical, health and