Análisis de la posición del rotor y la cola

Children who sustain a brain injury in childhood present with a range of motor, sensory, cognitive, communication, social and behavioural deficits that persist throughout childhood and have an ongoing impact on the child and their family (Anderson and Catroppa, 2006a).

At the centre of our knowledge of recovery from a brain injury in childhood is a debate between an early vulnerability model and an early plasticity model. On the

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one hand, there is a long held position that a young brain is adaptable and can benefit from its ability to shape and change, known as plasticity (Tucker, 2006, Anderson et al., 2011, Johnston, 2009). The adaptability of the young brain is a crucial part of what came to be known as the Kennard Principle1. On the other hand, a more contemporary view holds that the younger the child, the less foundation has been laid down and the child moves forward through childhood with an injured brain. It is more difficult for the child/young person to acquire new skills without the previously acquired skills being intact. The child is said to grow into their disability or have emerging difficulties as the demands of their activities increase (Levin et al., 2004, Anderson et al., 2009a, Dennis and Levin, 2004) . In the cognitive domain, there is a dose-response relationship between the severity of the brain injury and the recovery of cognitive performance i.e. a more severe brain injury will produce a greater cognitive deficit. Thus children who have sustained a severe brain injury at a younger age fit what is called a “double hazard” model (young AND severe) and do not make developmentally appropriate gains in their abilities to function independently at home, school and play (Babikian and Asarnow, 2009, Anderson et al., 2009b, Forsyth and Waugh, 2010).

The paediatric brain injury literature indicates that injury severity and age at injury are not the only factors that affect the outcome of brain injury in childhood. Other factors such as premorbid health conditions, family resilience and socio-economic status (SES) contribute to long term outcomes, with an increasing body of evidence suggesting a link between childhood brain injury and homelessness, crime and

1

The Kennard Principle is named after Margaret Kennard, a leader of brain lesion research with a far reaching scope (see biographical report by Maureen Dennis, 2010)

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mental health disorders in adult life (Williams et al., 2010, Max et al., 1998). This wide range of influential factors leads to children with brain injury being a

heterogeneous group with significant variability in a range of injury and environmental characteristics.

While the vulnerability versus plasticity debate continues, a new position has recently been suggested of a recovery continuum with plasticity and vulnerability at the extreme ends (Anderson et al 2011). The additional factors of age,

environment and rehabilitation influence the amount of recovery achieved along the suggested continuum (see Figure 2-4)

Figure 2-4: Recovery from early brain insult - a continuum? (Anderson et al, 2011) Reproduced with permission of Oxford University Press (appendix 13.14)

The long-term consequences of brain injury are beginning to be acknowledged. Data are being published from longitudinal studies (Anderson et al., 2012, McKinlay et al., 2009) and a brain injury in childhood is beginning to be recognised as a

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lifelong condition2. Long term cognitive and psychosocial difficulties are among those highlighted as being particularly chronic; continuing to impact on long term participation in home, school and community (Donders and Warschausky, 2007, Galvin et al., 2010, Hawley, 2005). Children and young people themselves continue to report tiredness, sensitivity to loud music and fear of seizure affecting their participation in leisure activities long-term (Renstrom et al., 2012). Whereas families continue to report ongoing concerns with behaviour and social more than physical and cognitive problems (Yeates, 2012, Wade et al., 1996).

Rehabilitation is one of the factors that is purported to influence the recovery trajectory of children and young people and has an impact on their long term outcomes (see Figure 2-4). The British Society of Rehabilitation Medicine (BSRM) defines rehabilitation as:

“a goal-directed process which reduces the impact of long-term conditions on daily life” (British Society of Rehabilitation Medicine, 2008, p.2).

The Children’s Trust is the UKs leading charity for children with an acquired brain injury. The team at The Children’s Trust acknowledged that the definition above had been developed in relation to adult rehabilitation services and introduced a children and young people’s perspective by defining rehabilitation as follows:

2

Recent conferences (October 2013, Newcastle and March 2014, San Fransisco) held by International Paediatric Brain Injury Society have had the title “Should Paediatric Brain Injury be Treated as a Chronic Condition? An International Perspective”

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“Rehabilitation seeks to enable children, young people and their families return to their lives as successfully as possible following a brain injury” (The Children's Trust, 2012).

While the National Institute of Health and Clinical Excellence (NICE) provides guidance for the early intervention following a head injury3, there is no definitive guidance in the UK for the rehabilitation of children and young people following a Traumatic Brain Injury. Recent contractual guidance for rehabilitation services for children and young people contains aims and objectives for service provision (NHS England, 2013) but it is directed at a wider population including those having an acquired brain injury and an acquired spinal injury. A second document may also be informative for this client group (Royal College of Physicians, 2003). In order to ensure “consistency and knowledge of best practice” for rehabilitation services following a stroke in childhood, the Royal College of Physicians, London, produced a set of guidelines that may be useful to inform some practices in rehabilitation following a TBI. Specifically, the report gives guidance about the theoretical underpinnings of rehabilitation services and two of the guidelines need further attention:

1. Each team should use a consistent framework and terminology in providing care to the child affected by stroke

2. It is recommended that the World Health Organisation’s International Classification of Functioning (ICF) terminology is used

3

NICE guidelines [CG176] published January 2014 is available https://www.nice.org.uk/Guidance/CG176

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The World Health Organisation’s International Classification of Functioning (ICF) is promoted in these guidelines. The ICF is a conceptual framework that has replaced the medical model in recent years, recognising the importance of social and

cultural aspects of disability, in addition to the health condition itself (Simeonsson, 2009). The ICF has a focus on function rather than on disability/impairment. In 2007 a children’s version of the ICF was published to “record the characteristics of the developing child and the influence of its surrounding environment” (World Health World Health Organisation, 2007, Ballert et al.). The ICF-Children and Youth version (ICF-CY) has the same structure and classification system as the original ICF. The ICF-CY is organised in two parts. The first part is concerned with Functioning and Disability and has two components – Body component (body functions and structures) and an Activities and Participation component. The second part concerns Contextual Factors that include environmental and personal factors.

The ICF classification is not concerned with the process of disability but provides a means of classifying and describing the complex interactions between the health condition and all of the related factors as they relate to individuals. It provides a common language and definitions that can be used to describe the complex interactions involved in disability. All of the components interact in a dynamic manner and the relationships are represented in Figure 2-5.

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Figure 2-5: Interactions between the components of the ICF (WHO, 2007). Reproduced by permission of World Health Organisation (appendix 13.14)

The model in Figure 2-5 can be used to apply any health condition providing a useful common language at an individual, group and institutional level. At an institutional level the model can aid strategic service development and delivery that reflects the broad needs of those with the particular health condition (Laxe et al., 2013, Tempest et al., 2012). Furthermore, at an individual level they can be used to describe a situation in detail and aid goal setting (Dalen et al., 2013). An exemplar of using the ICF-CY at an institutional and an individual level is described in a recent article (Martinuzzi et al., 2010). The authors illustrate how the clinical team was educated and given examples of how the child and family goals were set in relation to the ICF-CY to include personal and environmental factors as well as activity goals. The increased profile of the ICF and ICF-CY in the rehabilitation literature will help

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clinicians and researchers to articulate the complexity of brain injury and recovery in childhood within a dynamic developmental context.

One of the factors that affects the child and young person’s ability to benefit from the rehabilitation process is a difficulty recognising their newly acquired disability and engaging in the rehabilitation programme (Marcantuono and Prigatano, 2009). The children/young people experience a number of losses such as loss of abilities, loss of future aspirations and loss of friendships. Understandably the child and family find it difficult to engage with clinicians and set rehabilitation goals

(Marcantuono and Prigatano, 2009, Ylvisaker, 1998b) A recent review of child and family goals in a rehabilitation setting found that the goals were mostly assigned to the activity/participation component of the ICF-CY, particularly the mobility and self-care domains (Kelly et al., 2013). The children, young people and families were more able to articulate these immediate and obvious activity goals.