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Paediatric acquired brain injury and hidden disability

A view from the frontline of child brain injury care on this often misunderstood and under-diagnosed condition.

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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.

Katy James, head of The Children’s Trust Brain Injury Community Service.

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

 

 


 

References

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.

 

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Brain injury in the new normal: How to get a good night’s sleep during the pandemic

Consultant clinical neuropsychologist Dr Keith G Jenkins and Dr Jenny Brooks, consultant clinical psychologist on how to sleep well during the pandemic.

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Getting a good night’s sleep is important all of the time, as we know from our work with people with brain injury, but some people have seen their sleep pattern alter during the pandemic.

This change to the normal time people go to bed and fall asleep and/or wake up in the night, may be due to several factors, including changes to the way the person spends their day in terms of education, work, meeting up with family and friends, seeing support workers and / or attending rehabilitation sessions. Also they are perhaps exercising, playing sport or doing other activities less.

Lower mood, such as feeling sad, having worries or feelings of uncertainty, can also impact on your ability to get to and stay asleep.

Changes to our sleeping habits can lead to a poor sleep-wake cycle, otherwise known as our body clock. Not getting enough sleep, or good quality sleep, can cause fatigue and tiredness throughout the day. You might feel unwell as a result, and this can increase anxiety and worries further, making getting through the day more difficult. It might also mean that relaxing to sleep becomes harder, and a vicious downward spiral can follow.

Fortunately, there are some very simple things we can all do to support a good night’s sleep. These include going to bed and getting up at the same time each day to support your body clock, exercising during the day if you can safely do so and trying not to exercise too close to bedtime. Avoiding caffeine or nicotine close to bedtime – or reducing them if you can’t stop completely – can also help.

Be aware that alcohol might mean that you fall asleep faster, but it can disrupt the second stage of sleep, meaning that the quality of your sleep may be reduced, which can then lead to you feeling tired the next day.

It’s generally best to avoid things that may cause you upset or stress before your usual bedtime, like a difficult phone call or a scary TV programme. It is also important to reduce your exposure to blue light, for example from smartphones and laptops, before bedtime.

Blue light tricks your brain’s body clock into thinking it’s daytime and suppresses the production of melatonin. This is the hormone you need to feel sleepy.

Try to have a bedtime routine that supports you in winding down, whether that means a bath, listening to music or a relaxation CD. It’s also really important to ensure that your bedroom supports your sleep, so consider things such as lighting and temperature. Most people tend to find that a tidy bedroom can help the room feel more relaxing too.

Of course, many people with an acquired brain injury tend to experience fatigue and often find having a nap in the day can help them to manage this. But an afternoon nap should end before half past three in the afternoon at the latest, with your next sleep being in bed for the night. Headway has a very helpful section on its website regarding managing fatigue.

While bedrooms should predominantly be for sleeping, some people have been spending more time in them during the pandemic doing other things – perhaps using them as a quiet space to complete education or work.

For those in hospitals or care homes, increased bedroom time may be due to isolation procedures. If this is the case, perhaps consider having a chair or a beanbag to sit on, rather than lying on your bed during the day. Where possible, try to come out of your room for meals.

If you find it is taking a long time to get to sleep, try getting out of bed and doing something else, like reading a book or a magazine, and then return to bed when you are feeling sleepy.

The advice we have given here is in line with the recommendations on the NHS website.

A good night’s sleep is crucial to thinking at our best, which is especially important if you are working or being educated at home; and there are some other simple things that you can do to boost your productivity in these scenarios.

Firstly, make sure you have a shower and get dressed rather than working in pyjamas or dressing down. Getting dressed helps you to psychologically get into work mode. Have a designated workspace and, if possible, keep the area tidy.

Have a timetable of when you’re going to work and try to stick to it. As we’ve mentioned, writing a timetable down and ticking off jobs completed supports feelings of achievement. Make sure you schedule regular breaks during which you move away from the workspace. You might go into your garden or make a drink, for example.

Try to minimise distractions. That might mean moving your mobile phone out of reach, turning off the TV and considering where the quietest places are. If you live with other people, you might want to consider how to ensure they don’t disturb you. This might just mean letting them know what your work timetable is.

One distraction that can’t be ignored, however, is the need to wash our hands to prevent the spread of the virus.

We hope you have found this guide useful and wish you a safe and happy summer as we all continue to rise to the challenges presented by COVID-19.

This is one of five blogs in a series on living in the new ‘normal’ with a brain injury, based on a webinar produced for ABI London (ABIL). See below for links to other articles in the series. Dr Keith G Jenkins is consultant clinical neuropsychologist at St Andrew’s Healthcare and chair of Headway East Northants. Dr Jenny Brooks is a consultant clinical psychologist working independently and a director of The ABI Team. For any questions about this topic email update@standrew.co.uk. 

Fitting COVID-19 guidelines into your routine

Keeping a check on your wellbeing

How to keep in touch with loved ones during the pandemic

How to keep a routine during the pandemic

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Brain injury in the new normal: How to keep a routine during the pandemic

Consultant clinical neuropsychologist Dr Keith G Jenkins and Dr Jenny Brooks, consultant clinical psychologist on how to keep a routine during the pandemic.

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Daily structure has changed for us all during the COVID-19 pandemic and this can feel very unsettling. A regular structure and routine is important for many reasons.

First, it increases feelings of normality and control, as well as meaning and purpose; all of which can help to push back against low mood. Second, it can reduce feelings of stress and anxiety through distraction.

Finally, a structured timetable can reduce the burden associated with some of the behavioural and cognition issues that can occur after brain injury. These include difficulties in starting an activity, planning, organising and making decisions.

So what can structure and routine look like during the pandemic?

A daily routine could include a mixture of self-care activities, such as having a bath, shower, or pampering yourself, completing some household chores and keeping active through exercise. Doing something fun that you enjoy, such as an online live music event, a quiz or watching a favourite film or TV programme, could also be included.

Try focusing on those activities that you find uplifting, positive or funny. Also some find it helpful to limit their watching of the news about COVID-19 as it can lower mood and increase their worries. There are lots of ideas for activities you can do at home in our resource pack which can be viewed via the ABIL website.

Having a daily timetable written down can help to ensure that structure and routine become the norm. It can also be reassuring to be busy and have things to do.

Checking off activities completed, can support you in feeling that you’ve achieved and accomplished things throughout the day.

Furthermore, a written timetable can help you to manage your time effectively, and support variety in your day. If you have difficulties getting started on something, or beginning an activity, you could share your timetable with someone else and ask them to help you get started, perhaps through a phone call or a text.

If you prefer to do this yourself, you can set up reminders on your phone or use other devices, such as Alexa.

This is one of five blogs in a series on living in the new ‘normal’ with a brain injury, based on a webinar produced for ABI London (ABIL). See below for links to other articles in the series. Dr Keith G Jenkins is consultant clinical neuropsychologist at St Andrew’s Healthcare and chair of Headway East Northants. Dr Jenny Brooks is a consultant clinical psychologist working independently and a director of The ABI Team. For any questions about this topic email update@standrew.co.uk.

Fitting COVID-19 guidelines into your routine

Keeping a check on your wellbeing

How to keep in touch with loved ones during the pandemic

How to get a good night’s sleep during the pandemic

Continue Reading

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Brain injury in the new normal: How to keep in touch with loved ones during the pandemic

Consultant clinical neuropsychologist Dr Keith G Jenkins and Dr Jenny Brooks, consultant clinical psychologist on how to stay social during the pandemic.

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While they’re in everyone’s best interests, COVID-19 restrictions have made life more difficult for some.

One area people are struggling with is the social isolation of not being able to visit loved ones, or socialise with anyone other than the other members of their household, if they have any.

Despite the many ways to stay in touch with family and friends – including letters, telephone and video calls and conferencing –  people may still feel lonely and isolated.

To help manage these feelings, it is worth scheduling regular days and times to have contact with specific family and friends and spreading these throughout the week. You could even ask your family and friends to make you video messages, which you could replay at any time.

Ensure, where possible, that you have time to socialise in your day, every day. Schedule a phone or video call, or ask others to organise a group chat with family, friends or colleagues.

If you have a day where you don’t have a scheduled call with friends or family, it may be helpful to use this day to go out and do your shopping or take a walk in your community if you are able to.

It may be helpful to consider what aspects of normal routine can be kept the same, modified, changed or replaced. In terms of modifying activities, it may be helpful to ask yourself questions such as could a regular meetup with someone now become a phone call? Could the pub quiz night now be a on a video call? Could a trip to a cafe or a restaurant now become a takeaway?

And for those people in residential settings and maybe having to isolate in their bedrooms, could interaction with others or groups take place in the corridor, allowing people to safely socially distance in their doorways?

It may be that some activities you enjoy can not be modified. Therefore, perhaps you could think about what it was about the activity that made it enjoyable and meaningful and consider what other activity could meet these needs.

For example, did you enjoy going for a swim at the leisure centre because it was a physical activity or because it was relaxing? Or perhaps you enjoyed the social element of it?

It’s important to remember that just because you can’t see your usual support circle, this doesn’t mean they’re not there, or that they’re any less contactable, during the pandemic.

This is one of five blogs in a series on living in the new ‘normal’ with a brain injury, based on a webinar produced for ABI London (ABIL). See below for links to all other articles in the series. Dr Keith G Jenkins is consultant clinical neuropsychologist at St Andrew’s Healthcare and chair of Headway East Northants. Dr Jenny Brooks is a consultant clinical psychologist working independently and a director of The ABI Team.

For any questions about this topic email update@standrew.co.uk.

Fitting COVID-19 guidelines into your routine

Keeping a check on your wellbeing

How to keep a routine during the pandemic

How to get a good night’s sleep during the pandemic

Continue Reading

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