Thousands of children and their families are affected by acquired brain injury (ABI) every year but accurate incidence figures are difficult to pinpoint.
This is in part due to inconsistencies with diagnostic coding in Emergency Departments and the inconsistent use of terms such as ‘head injury’ and ‘concussion’. NHS England statistics in 2013 suggested that the condition affected 18 in every 100,000 children in England alone, with an incidence of around 35,000 new traumatic brain injuries (TBI) annually.
Non-traumatic injuries are more recently estimated to affect 82.3 children per 100,000 each year (Chan et al, 2016)
However, the reality is that many mild injuries often go undetected and so this overall figure is generally considered to be a conservative one.
Each year, 1.4 million people attend emergency departments in England and Wales with a recent head injury; between 33% to 50% of these are children aged under 15 years (NICE guidelines 2014). Of the large number of head injury presentations to emergency departments, 90% of injuries are considered to be mild (Kay & Teasdale, 2011).
Children hospitalised with a more severe injury may receive rehabilitation during their hospital stay, or may be referred on for specialist intensive rehabilitation. Others may be referred onto local therapy services and receive some support in the early stages of returning home.
Children who sustain a mild injury may only require minimal medical input at the time of the injury and are discharged home from the emergency department very quickly with the view that they have recovered.
The good news is that many children, including those who have sustained a severe ABI, do make a good initial recovery, return to their usual every day activities and go back to their previously-attended school. Successful reintegration to school for children after ABI is considered essential for the success of intervention (McDougall et al. 2006) but the reality is that service provision to support this can vary greatly (Hamilton, 2017; McKinlay et al. 2016).
The Children’s Trust Brain Injury Community Service works with a large number of children and young people with ABI who are seen to have made a good recovery early on, but are experiencing what is often described as ‘hidden disability’.
Put simply this means the physical difficulties they may have experienced at the time of the injury have resolved, in part or in full, but they have ongoing difficulties that aren’t so visible from the outside. Hidden difficulties typically include problems with skills such as attention and concentration, planning and organising, problem solving, understanding and using inferential language, memory, and emotional changes. Children may have residual higher level difficulties; these can be ongoing and long term (Feeney & Ylvisaker, 1995).
Executive dysfunction and communication difficulties were found to be the two most commonly experienced areas of difficulty for children referred to the service during a four year period (Desai et al, 2016). Fatigue and headaches are also frequently reported and these symptoms can be persistent, particularly if not managed well.
Typically we see children and young people present with what are described as spiky profiles of ability – some areas remain within the normal limits on standardised testing and this may mask the other problems, often making them difficult to clearly identify, particularly for those less experienced in working with acquired brain injury.
Sadly, as a result, these hidden difficulties are often missed or misattributed to other causes and the right support is often not provided.
We know that the brain continues to develop throughout childhood and adolescence and is not fully developed until our early 20s.
One of the last areas of the brain to develop are the frontal cortical regions responsible for advanced or higher level cognitive functions such as reasoning and abstract thinking, decision making and problem solving – the executive skills.
So, the impact of an ABI in childhood isn’t just at the time of the injury; changes can be seen over time as the brain matures and the neural pathways and networks are laid down.
The effects of the ABI may be subtle or may not come to light until the injured part of the brain starts to be used, or needs change. An example might be a five-year-old with an injury to their frontal lobes sustained during a scooter accident.
While the child is young and well supported by parents and teachers, with minimal demands placed on them just like their peers, the child may not seem to struggle.
The effects of the injury might only start to appear when child turns 10 or 11 (often coinciding with a move to secondary school) when they are expected to make more use of their cognitive and executive skills in order to become independent with their learning and daily activities.
For example, manage and plan their own time and studies and find their way around a new, large school, and manage their emotions and deal with social interactions and relationships in a more ‘grown up’ way.
In summary, following ABI a change to cognitive, motor, behavioural and social functioning commonly occurs, even with more mild injuries and can impact on development, education, relationships, behaviour and self-regulation of thoughts, feelings, emotions and actions. All of which can impact on the child and young person’s ability to carry out activities and participate in them.
It is important then to recognise that ABI is a lifelong and dynamic condition, and can be so even for a more mild injury.
Services need to be available to provide specialist advice and expertise across the spectrum of severity. Positively, those around the child are well placed to support them and help them implement strategies and techniques to minimise the impact of the ABI and its consequences.
School participation can be positively influenced for a child with high-level difficulties following ABI. Schools can benefit from specific support to help them understand the high-level needs of a child with an ABI who is performing within the average range but requires extensive support to aim high and meet their potential.
Good practice includes collaborative working, provision of specialist support and intervention to the child or young person at home and school level, and during the transition period to secondary school (Cundy 2017).
Katy James leads The Children’s Trust Brain Injury Community Service which provides specialist goal-orientated neurorehabilitation delivered in the child’s environment, at home, in school, or a combination of both. With a member of its community service based in four of the UK’s major hospitals, and a dedicated multidisciplinary team based at their national specialist centre in Surrey, the service supports children from right across the UK. To find out more about the service get in touch with the team by calling 01737 365 864 or visit www.thechildrenstrust.org.uk/bics
Chan, V Pole JD, Keightley M et al, (2016) Children and youth with non-traumatic brain injury: a population based perspective BMC Neurology 16:110
Cundy, K & James, K (2017) Aiming High – Increased participation after return to school with high-level difficulties after ABI. IPBIS 2018 Poster Presentation
Desai, A, Wales L & James, K (2016) The Late Effects of Paediatric Acquired Brain Injury Poster Presentation
Feeney T & Ylvisaker M (1995) School re-entry following mild traumatic brain injury Journal of Head Trauma Rehab 10 67-86
Hamilton, C et al (2017) Paediatric Neurorehabilitation: finding and filling the gaps through the use of the Institute for Manufacturing strategic roadmapping method BMJ Innovation 3: 137-143
Kay A & Teasdale G, (2001)Head injury in the United KingdomWorld Journal of Surgery. 25(9):1210-20
McKinlay et al (2016)Service Provision for children and young people with acquired brain injury: practice recommendations. Brain Injury 30 (13-14) 1656-1664
Head Injury Guidelines, NICE (2014) and NICE Clinical Knowledge Summaries (2016) https://cks.nice.org.uk/head-injury#!backgroundSub:1
NHS England (2013) 2013/14 NHS Standard Contract for Paediatric Neurosciences: Neurorehabilitation, England, NHS England.
Looking on the bright side
Game changing neuro-rehab opportunities are emerging as a result of the coronavirus crisis, argues health and social care investment expert Boda Gallon.
The Impact of the Covid-19 pandemic has been multi layered. Yes, we’re faced with a fragmented health and social care system, continued uncertainty, and a gloomy economic outlook. There are, however, positive opportunities for investment and service redesign within NR and the wider specialist healthcare marketplace.
Increased investment interest for this most resilient of sectors, combined with a clearly identified need for positive change, should drive the creativity needed to embrace opportunities and deliver the much needed integration, improved productivity and efficiency of services across health and social care.
This positive outlook, however, still comes with a need to understand changes in our behaviour, to embrace change, to break down cultural barriers and focus on opportunity planning.
All of which is much easier said than done. A key lesson that has been brought home to us during the Covid-19 pandemic is that heroes are people. Ordinary, but extraordinary, people.
Once we get past fighting fires and lockdown fever most experts agree that things will never be the same. The key reason for this can be found in our primal brain and how we act and continue to live under a state of fear.
The neuroscientific term for this is “a somatic marker,” as coined by Antonio Damasio. I believe that Covid-19 is a negative somatic marker that we’ve
all had installed in our brains over the past several months and is likely to have a powerful, lasting impact on how we behave, but also a positive impact on the aspects of the cultural changes required for the health and social care marketplace to develop.
Change needs to go deeper, and Covid-19, as our generation’s negative somatic marker, is probably the best reason to change we will ever witness.
Covid-19 could also finally be the catalyst for the political will required to drive the full integration and parity between health and social care. It is no real surprise to find the recent disclosure of Camilla Cavendish’s plans that social care could be brought under the control of the NHS to honour Boris Johnson’s pledge to “fix the crisis in social care”.
This will also present opportunities and require new ways of working for people, but this will ultimately drive better and more seamless service experiences for all our patients, clients, residents, customers and consumers.
We are going to find ourselves in an entirely new online environment, with an entire generation of consumers and service commissioners expecting to interact via screens and having the aspiration and confidence of services being delivered in a ‘Covid-19 free’ environment.
This new virtual hybrid world will need to be delivered with empathy to help everyone overcome the negative Covid-19 somatic marker and still meet the basic human needs for relationships, touch and social interaction.
The perceived threat of Covid-19 does not mean that new services cannot be launched or repositioned. The opportunity is to develop more flexible services able to meet all the new behavioural, political, and environmental drivers of the ‘Covid-19 game changer’.
Providers and their people need to respond to this opportunity and reposition from fighting fires and coping around how things have always been, to repositioning ahead of the curve and innovating services towards what will be a new normal.
To date the adoption of digital technology to help improve productivity and efficiency across the system has often faced multiple cultural barriers, with people often sabotaging initiatives as they either feel their role, profession or revenue streams are threatened.
Covid-19 has forced everyone to look at the current barriers in a virtual way and employ different ways of working. Hopefully, this perceived threat now presents a clear opportunity for providers and professionals to deliver complimentary and long-term hybrid solutions for their clients and staff teams that embrace the best of digital and face to face interventions, training and support.
The delivery of community rehab has always faced productivity and efficiency challenges relating to logistics and the supply of and access to suitably skilled professionals, especially in more rural and harder to reach communities.
The proposed long-term somatic marker of Covid-19 now requires services and providers to be nimble to create longer term holistic solutions of their own, coordinating the much- fragmented array of technology options.
There is a need to embrace AR/VR/AI/IOT and to learn from and adopt best practice solutions from the UK and abroad to ensure much-needed efficiency, productivity and value are provided at the same time.
The positive outcome of this burgeoning digital transformation, like Covid-19, is also multi layered.
Offering a renewed focus on flexible working, employee support, management and an array of ‘wellbeing’ opportunities for staff recruitment and retention.
This digital transformation is most keenly required to help support and shape the future of various healthcare settings.
Existing commissioning and strategic planning intentions were already focused on provision away from hospitals and more institutional environments towards community settings with more holistic and social models of care.
The impact of Covid-19 will now hopefully see this process accelerated.
Although the wider roll-out of Covid-19 testing and potential vaccines is critical, providers need to review how the design and operation of care homes can be focused on delivering a ‘Covid-19 free’ moniker.
Enlightened providers need to ensure that cross infection mitigation and the flow of people, process and supplies are given an increased priority. The ability to offer digital triage and re-establish a more effective working relationship with GPs and primary care is essential to plan both avoidable admissions to and discharges from hospital and to provide the level of clinical support that has so often been missing during this pandemic.
Repositioning care homes from what has been perceived as the riskiest place for people to be towards being the safest environment possible has to be a clear goal; as well as a PR opportunity.
A focus on delivering flexible and safe space within residential services is essential to provide for increased independence, community and family integration and improved social inclusion.
New building designs in development need to respond to this now, and existing services will need to take a more strategic review of their estate for the medium and longer terms.
New models of care already seeking to deliver coordinated pathways from hospital to home, need the potential integration of health and social care to truly flourish and develop, but the vision must not stop there.
The extended integration and creative use of housing options is essential along with digital transformation to maximise potential clinical and financial outcomes and deliver the best quality of life for people. There is a lot to be learned from each other.
Previously fragmented sectors need to look vertically up and down patient pathways and supply chains, flex their services, upskill and share staff, embrace elements of isolated good practice and design into their own facilities and services.
Embrace the somatic change
To maximise value together, disruptive innovation driven by Covid-19 needs to be embraced. The independent sector can fully support NHS strategy by complimenting the NHS and building on the many successful collaborative partnerships developed during this pandemic.
Significant public goodwill and the potential political momentum to finally drive health and social care integration can now be leveraged to force past the multiple barriers to change.
Opportunity exists for game changers willing to take advantage of keen investor interest for a market that has proven to be the most resilient in the face of a global pandemic.
This inward investment into our sector can only be a further benefit forcing much needed change, new competition and opportunity to drive service innovation.
Ultimately and most importantly this will deliver better impacts and outcomes for service users, their families, and our colleagues.
We cannot afford to stand still and need to respond to the wider behavioural impacts of Covid-19 to reposition services, partnerships and networks to ensure new models of care and rehabilitation are (re)designed and delivered in more flexible and digital enabled environments.
This will ensure that proactive providers can truly respond to the future needs of customers, service commissioners and an emerging new normal to deliver even stronger, sustainable business models.
Proactive and future proofed business models are what any Investor from owner operators, to specialist private equity and bank funders will be looking to support and develop.
Hopefully, this article will help stimulate some debate and more ideas so we can share best practice and experience together.
Why cultural competency should be woven into rehab training
Natalie Mackenzie and Eky Popat of brain injury rehabilitation service BIS Services on managing the cultural challenges in community rehabilitation.
Back in 2011 one of our team asked why there was a significant lack of consideration towards cultural differences within brain injury rehabilitation.
It was not the first time we’d heard this question, but it further sowed the seed for a topic that is persistent and pertinent within our working practices at BIS Services, and a matter for discussion and change that must continue throughout the field.
Most certainly, recent years have seen an increase in consideration and discussion regarding cultural competency and its importance in rehabilitation, which is reassuring, although the se are still challenges that we must continually consider.
Not just from the perspective of clients and their families but in our own recruitment, supervision and training practices.
For the purposes of this discussion, we must define our understanding and terminology of ‘culture’ so that we can best adapt our approaches.
For us, it is the ‘way of life’ of groups of people. Different groups may have different cultures. A culture is passed on to the next generation by learning, and is seen in people’s writing, religion, music, clothes, cooking, and in what they do.
Within the Merriam-Webster.com Dictionary it is defined as: “The outlook, attitudes, values, morals, goals and customs shared by a society. It is the integrated pattern of human knowledge, belief, and behaviour that depends upon the capacity for learning and transmitting knowledge to succeeding generations.”
Our own definition is key to understanding how we engage, motivate and most of all, persevere within cultural norms. What is most important to consider however, is that culture is ever evolving, and so must we be.
So, what are these challenges which we face in community rehabilitation? They are many and they are far reaching; from the initial matching of a rehabilitation assistant, to family integration, goal setting and attainment, functional transfer and psychological interventions, as well as long term engagement.
Our initial meetings with clients and their families must consider cultural differences from the outset, whether this be ethnicity, gender, age, education or any other classification under the umbrella. If the cultural needs and initial engagement of a client are not considered or appropriate, the impact may be long lasting.
We must ask what the different viewpoints are on brain injury within ones culture, and find a pathway of rehabilitation accordingly.
What does brain injury actually mean to others? What is the role of family? How is external assistance perceived? Practically, how do we manage not just language differences, but actual terminology. In many cultures there is no direct translation for brain injury or cognition, let alone a clear understanding of roles within rehabilitation.
Born in Nigeria and moving to the UK at the age of 18, and later sustaining a severe TBI, a client we have supported for many years provided us with some powerful views of brain injury in his culture.
This injury was sustained in 2001 and he still feels unable to visit his native country for fear of stigma. When asked to explain to us how his family and culture would perceive his injury he told us that TBI is viewed as a mentalillness,thereforethe person is “mad, dangerous, harmful, or contagious”. Families associate disability with shame, “as Gods will” or a punishment.
When individuals perceive injury in this fatalistic way, it can be difficult to engage them in rehabilitation. How can we have more power than divine intervention? That is a mountain to climb, but it can be done. What that means is we have to look at ways of bridging their cultural belief systems and incorporating different ways that families might want to access help.
They may want to access rehab, but at the same time, they may also want to engage in the use of prayer and their natural healers, and that’s something we should be respecting and incorporating as part of the
Stigma and exclusion can keep people from seeking help, for fear of exposing disability or bringing shame on the family. We have encountered this a number of times, only being sought out when the families are no longer able to cope and are at breaking point.
When those cultural roles have been altered to such an extent that there seems to be no way
out or no pathway of rehabilitation to follow.
One hopes that change can be made from the outset of rehabilitation, so we do not get to this point. Another consideration must also be on the cultural needs of our staff, and we have spent many a supervision where staff are conflicted regarding clientculturesversustheirown.
This takes many forms, from the most practical matters of diet, when we ask rehabilitation assistants to model, motivate and encourage shared meals for instance.
I recall fondly being introduced to a client’s family visiting from Kuwait and their insistence that I eat with them; declining was not an option, it would have been perceived as insulting and potentially impacted my therapeutic relationship with the client.
What a wonderful meal was had, sat crossed legged on the ground, full of dishes I would never have even attempted anywhere else alongside a whole generation, and what a natural insight into a culture very different from my own.
I learnt so much during that encounter that was incorporated into my programme with that client. I have had many RAs tell me of their clients instance that intestines or some delicacy are tried during meal preparation tasks, and their commitment to their clients to not offend despite their own views or cultural beliefs.
There has always been a strong theme around the challenges faced when working with individuals from varying socio economic backgrounds or with differing educational experiences; again this is where matching of RA to clients is key.
Shared experiences are important, and we often focus on finding a ‘hook’ to aid engagement whilst keeping those therapeutic boundaries.
When delivering brain injury education programs, we are constantly required to adjust
the content to suit the cultural backgrounds of our clients, to maximise positive outcomes and to encourage engagement; and so we should. We all know that in brain injury rehabilitation there is never a one size fits all approach.
It is important to be mindful and recognise cultural stereotypes when matching staff. For example, certain cultures have gender stereotypes and when matching with the right staff we should endeavour to ensure these and other stereotypes are not reinforced.
We must support our staff and ensure their own cultural needs are met alongside the clients, whether that be ensuring traditional festival practices are met, prayer times and fasting are considered, and factored into rota scheduling.
The same applies to clients; therapy appointments should not be made during these times and such matters respected and protected.
Supporting clients in their home is very intrusive and we must respect the clients cultural wishes and support the clients with their cultural customs, traditions and beliefs, and ensure that this is incorporated into rehabilitation.
Considerations need to be made regarding the impact of fasting or other traditions on fatigue and cognition and task planning and goal management plans adjusted accordingly.
Perhaps the biggest challenge we all face is recognising and acknowledging our own values and cultures, and not projecting these onto clients.
Why should we insist on certain goals or tasks if they are not in keeping with an individuals pre-morbid practices, beliefs or experiences? We should not.
Just because we may not perceive certain behaviours as safe, appropriate or functional, we must not assume it is the case for another individual and their family.
We must have more self-knowledge as providers in order to recognise our own specific prejudices, to manage them appropriately and avoid potential negative impact on client care.
We should all be curious, rather than judgmental; and actively listen. Really listen.
We cannot possibly cover all the challenges and issues we face here but we would encourage further reading and consideration of research. Saltapidas & Ponsford (2007) suggested that many rehabilitation models are not generally adapted to adequately meet the needs of patients from culturally and linguistically diverse backgrounds.
Niemeier et al (2007) justify the importance of cultural sensitivity in everyday provider interactions with minority clients and their families.
Their primary aim was to raise rehabilitation providers awareness of the unique difficulties faced by ethnically and racially diverse persons with TBI and secondly to offer practical recommendations for rehabilitation professionals who desire to improve the health outcomes of individuals from a minority living with a TBI.
Considering all the issues surrounding effective rehabilitation within different cultures, it seems
like the natural next step would be to educate those who are currently training and those who work in the field, and interact with patients daily, to be more sensitive and aware of those cultural differences.
We must all increase our cultural competency, through education, awareness, and collaborative family working, however we define culture.
Natalie Mackenzie is managing director at BIS Services. Eky Popat is operations director. The company provides cognitive rehabilitation and support services in the community for people living with a brain injury or neurological illness.
See more at www.thebiss.co.uk.
Why redefining who you are after a brain injury could be the most important aspect of recovery
By Rae Hughes, clinical psychologist and Pete Fleming, clinical tutor and consultant clinical neuropsychologist.
Adjusting to life after a brain injury involves coming to terms with, and adapting to, changes, which often span multiple areas of a person’s life, such as hobbies, employment, and interpersonal relationships.
Understandably for many individuals, their life following a brain injury can look completely different to before.
The term ‘self-discrepancy’ refers to the difference between versions of ourselves. For example, a person may have a ‘pre-injury self’ and a ‘post- injury self’. These two versions of self may be completely different, whereby following a brain injury (post-injury self) a person is unable to engage in work or hobbies in the same way they were before (pre-injury self).
While many individuals may strive towards getting back to how they used to be, in some instances this may be unrealistic and unachievable.
Take the example of Mr Smith, who before his brain injury was a keen runner, but now has weakness in one side of his body and chronic fatigue. After months of intense physio, Mr Smith is still unable to walk unaided or for long periods of time.
His physio believes that further recovery in his mobility is unlikely. Furthermore, the regular marathons that Mr Smith used to complete are now out of the question, but this doesn’t stop Mr Smith from wanting to be able to do this.
This drive to get back to his ‘pre-injury self’ drives a self-discrepancy between how he used to be and how he is now (pre-injury vs post-injury self).
Our research paper, ‘Shame, self-discrepancies, and adjustment after acquired brain injury,’ aimed to explore how these differences in individuals’ pre-injury and post-injury selves may be linked to an experience of shame, and to consider whether these factors predicted their adjustment.
Shame was felt to be an important factor to study in relation to self-discrepancies, due to it occurring as an emotional response to negative evaluations of the self, which can lead to a person feeling unworthy.
Given that self discrepancies exist due to evaluations between states of self, we wondered if a negative self-discrepancy would exist alongside shame. As suspected, the research found that the more negatively a person viewed themselves after a brain injury compared to before, the higher their experience of shame.
Mr Smith finds that he can’t help but think about how he used to be able to run for miles, but now struggles to walk to the end of his street. As running was such an integral part of his identity, he often finds himself feeling as though he is now flawed in some way, as though he ‘should’ be able to get back to running, even though this is no longer possible.
Understandably, the research found that participants who perceived negative differences between themselves before and after the brain injury, not only experienced higher levels of shame, but also experienced poorer adjustment. For the purpose of the research, adjustment was measured as emotional wellbeing and quality of life.
To summarise, individuals who perceived a negative difference between how they were pre-brain injury and how they are post-brain injury were more unhappier, more anxious and had lower levels of general wellbeing.
These findings show that self- discrepancies are a really important aspect to adjustment and recovery following a brain injury. If individuals strive to return to tasks or
a way of living that is no longer possible, they are likely to feel frustrated, which could lead to poorer emotional wellbeing and adjustment generally. Managing and reducing the self-discrepancies should be one of the aims of psychosocial adjustment post-brain injury.
So how do we support individuals to do this? Although not explored in this paper, other research has suggested that creating a new ‘updated’ sense of self could break this cycle, which means accepting the present situation, and redefining who you are to reflect these new circumstances.
Many individuals will need the support of a neuropsychologist to help facilitate this journey through adjustment, with third wave cognitive behavioural therapy models including compassion focused therapy and Acceptance and commitment therapy, lending themselves to this process.
In the example of Mr Smith, it could be that although he’s no longer able to compete in races, he can volunteer his time at a races, supporting runners to register, or as a marshal. While this isn’t the same as running in the race himself, it could offer the chance to socialise, talk to like- minded individuals, and gain a different sense
In conclusion, the process of redefining your sense of self following a brain injury could be essential for good psychological wellbeing and adjustment following a brain injury. This does not mean an individual has to completely let go of who they were pre-injury, but rather that aspects of their identity may need to be altered slightly.
Rae Hughes is clinical psychologist at Humber Teaching NHS Foundation Trust. Pete Fleming is clinical tutor and consultant clinical neuropsychologist at the University of Hull. Find this article on nrtimes.co.uk for links to their paper Shame, self-discrepancies, and adjustment after acquired brain injury.
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