Review: The Rubik’s Cube of Childhood Brain Injury

Jo Throp

The Children’s Trust had an impressive line-up of speakers for their annual conference. Their aim, according to their Chief Executive, Dalton Leong, was to consider the ‘puzzling complexities and challenges of acquired brain injury in children’, writes Jo Throp of Krysalis Neuro Occupational Therapy, who attended the event in 2018... The programme covered a broad range of topics and included a review of evidence-based interventions for children, the causes and consequences of childhood stroke through to outcomes and long-term prognosis. The key theme throughout the day was the importance of family, especially family participation. They discussed how rehabilitation clinicians should support families to tell their story and provide opportunities for families and parents to be involved in the rehabilitation process. Dr Lucia Braga, Neuroscientist from The SARAH Network, talked about the essential role of parents in nurturing and bringing up their child. It was discussed that traumatic injury or brain trauma can impact on this natural relationship. Dr Braga advocated that parents should be central to rehabilitation programmes and ‘give the family back its natural role’. Clinicians should not compartmentalise rehab, but rather should take time to work with, and educate families. This is to ensure that parents, especially, feel confident in their role which may include additional responsibilities in relation to their child’s rehabilitation programme. Functional MRI images were shared with the audience; these clearly demonstrated the power of a mother’s voice on an infant’s brain. The importance of recognising the needs of the child was discussed and we were asked to consider the impact of living with lifelong disability. Dr Jenny Jim, Principle Clinical Psychologist, discussed how we should consider the child’s internal world to help us as clinicians gain insights into a child’s goals and aspirations. She explored how she uses a narrative approach in her clinical practice to help young people to process trauma. It was discussed that considering psychological adjustment is essential to help children and young people to reflect on who they are now and who they want to be. This is especially important for individuals who are transitioning to adulthood and the importance of developing a sound sense of self to ensure the traumatic brain injury does not remain the ‘enduring headline story’.  Dr Carolyn Dunford, Senior OT Lecturer at Brunel University discussed that interventions should be based within current research, guided by clinical models and combined with the clinical experience of practitioners.  She discussed that there continues to be big evidence gaps, especially with regard to acquired brain injury and, therefore, whilst not ideal, clinicians should look to the evidence within the adult arena or within Cerebral Palsy. Dr Dunford reinforced the importance of participation in activities although acknowledged that clinical outcomes are hard to find within this area. There is, however, an evidence base relating to clinical outcomes to support family involvement (family supported rehabilitation showed statistically significant changes in function compared to those receiving therapy in isolation), goal directed intervention and multi-component cognitive rehabilitation (the amount of therapy impacted on client outcomes and gains made, impairment-based intervention was not beneficial in terms of function outcomes). She also discussed how the aetiology of an injury can impact on outcomes, including the age at which the injury was sustained, with children younger than 7 years old generally presenting with poorer outcomes. In a nutshell, it is much easier to regain a skill you already have.   Dr Vijeya Ganesan gave an overview, including the causes and consequences of childhood stroke. She discussed that childhood stroke is a rare condition presenting an incidence of 1.6 per 100,000 in children. From a medical perspective she stated that many children have co-morbid disorders that are risk factors relating to childhood stroke. This includes focal narrowing in blood vessel or pre-existing heart conditions.  In addition, a child may be predisposed genetically to have a negative response to a common infection, such as herpesvirus.  She advocated that clinicians should change their thinking regarding how they approach the condition to be more aggressive in the management of symptoms in acute care. In addition, time should be spent profiling risk factors in those children that present with symptoms to guide intervention.  Dr Jenny Jim, Principle Clinical Psychologist the Children’s Trust, presented a ‘NIF-TY (Neurological Integrated Formulation Profile)  solution to the puzzle of childhood brain injury’. She stated it was possible to make complex things simple by giving a framework. Her thoughts were expressed within the context of solving the puzzle that is the Rubik’s cube.
  • Stage 1: Get to know the family
  • Stage 2: Find out what matters to them 
  • Stage 3: Find out what holds them together 
  • Stage 4: Look and respect all the layers 
  • Stage 5: Priorities what you work with first
  • Stage 6: Agree where you want to be at the end 
The NIF-TY was introduced which offered a framework for bringing together the components of a child’s needs / clinical presentation on one page. Neurosurgical aspects of paediatric brain injury were introduced by Mr Simon Stapleton, Consultant Neurosurgeon from St George’s Hospital.  He discussed that children are more susceptible to traumatic brain injury as their head is bigger than their body and they have a thinner scull.  He stated that the medical goals are to first recognise life threatening injuries and, secondly, work hard to minimise the secondary damage that occurs. He gave a clear overview of the medical terminology used within brain trauma. Extradural haematoma is a bleed because of a fracture to the skull, where blood is found between the dura mater and the skull.  This type of injury is common in blunt force trauma where the skull is fractured. Subdural haematoma is bleeding within the brain due to sheering of the veins; this trauma results in a build-up of blood within the subdural space. With this type of injury there needs to be consideration given to secondary complications, such as brain swelling and midline shift. This type of brain bleed can be seen in shaken babies or in high impact injuries and often present with a poor outlook.  Subarachnoid and interventricular haemorrhage are the most common types of bleeding in trauma cases and is the result of disruption of small vessels over the cortex. Interventricular bleed has poor outcomes. Mr Stapleton compared defuse axonal injury in the brain to dropping a bowl of trifle. The impact of the injury, much like the dropped bowl of trifle, disrupts the order and structure of the brain …and the trifle! He discussed that mortality from head trauma is 29% in the paediatric population and of those who survive, 90% need rehabilitation.  Dr Vijay Palanivel from The Children’s Trust gave an engaging talk on paediatric brain injury - outcomes and predictors of long term prognosis. He discussed that progress in rehabilitation is all about neuro plasticity.  It was stated that the adult brain is less plastic and, therefore, individuals will require a lot more practice during skill acquisition. However, brain development in a young brain may never occur if the injury happens in any of the peak stages of brain development. From a functional perspective, this means it is harder to re-learn skills that were never learnt in the first place and, therefore, children do worse in rehabilitation outcomes than adults due to this disruption / trauma. We were left pondering our ability to predict outcomes and if we can accurately predict outcomes following brain injury.  It was discussed that the more focal the injury the better the prognosis; he age at the time of injury and pre- injury behaviour and function can all effect outcomes. Something that was very pertinent to the neuro Occupational Therapist, was the importance of considering the role and impact of the environment and childhood experiences, including socioeconomic family group. Katy James, Head of Brain Injury Community Service at The Children’s Trust, discussed the topic of increasing participation through community neuro rehabilitation.  She discussed that social and cognitive outcomes may be dependent on the age of the child at their injury.  The theme of her talk was ‘participation’ in activities whether this be within the home or school environment or the wider community. She discussed that participation is about being there and being involved. Participation is a process as well as an outcome and, as clinicians, we should provide opportunities and experiences to support participation.  Activity competence and how the child or young person views their ‘sense of self’ needs to be considered. Intervention should be individualised, context sensitive, meaningful, holistic, functional and goal based. Overall, this was a very inspiring and informative day.

About the Author

Jo Throp is a neurological occupational therapist and clinical director at Krysalis Consultancy, an established nationwide specialist neurological occupational therapy consultancy which provides community-based rehabilitation and vocational rehabilitation services for adults and children with complex needs. Jo is a practicing clinician with a passion for occupational therapy. Since qualifying in 1997 she has worked within the specialist field of neurology and has extensive experience of setting up and managing both community and inpatient multi-disciplinary neurological rehabilitation services, within both the NHS and independent sector.