Coronavirus – tips for families following a brain injury

First published: 14/04/2020

We're looking at the ‘7 R’s’ and helping families as they look after children at home following a brain injury.

Advice has been given by therapists and psychologists on the areas of Routine, Rest, Relaxation, Return to activity, Resilience, Reassurance and Rehab to make the time at home a little easier to manage.

Routine

All children benefit from structure in the day and this can be especially relevant to children following a brain injury. It’s helpful to keep a positive momentum and you might want to explore different activities – this could include activities that your child previously liked at school.

Having a routine can also help children know what to expect. You might want to think about working together with your child to plan a simple schedule so they feel involved in their day and know when they will have breaks.

It makes sense to do harder things earlier in the day, so if you’re home school learning, maths and English are good subjects to tackle first thing, while art and music can be done later in the day.

However, for some, it’s important to start the day with positivity and success. So, you might want to choose a ‘quick win’ early in the day.

It’s helpful to keep a structure in place even in school holidays or bank holidays because we’re all staying at home.

Rest (fatigue, sleep)

Fatigue is a very common symptom after a brain injury and is more than ‘just’ tiredness. It can leave children feeling irritable and frustrated, affect concentration and have a big impact on life at home.

Help manage fatigue by pacing activities and keeping consistent, regular breaks. Do tasks for a set period of time – for example, spend 30 minutes on something, rather than aiming to complete it.

Encourage rest time and, wherever possible, provide a quiet space away from siblings. Naps can be great but try to keep these to less than 30 minutes or they can interfere with night-time sleep. It's important to maintain good sleep hygiene, such as sticking to regular bedtimes and getting up times.

Sometimes rest should include a break from any form of activity, for example, having a lie down in a quiet area. This wouldn’t include an activity such as going on a screen as this could be stimulating and not allow the brain a rest.

Sometimes a meal or snack can help. As always, healthy, balanced food, including lots of fruit and vegetables, is far better than the high-sugar quick-fixes that can make tiredness worse. Drinking plenty of water can also help with tiredness, improve concentration and prevent headaches.

Relaxation

Children who have had a brain injury can be tempted to push themselves too hard, often ignoring the signals their bodies are giving them, possibly because they just want to continue with the activities that they enjoy. However, finding the time and ways to relax is extremely important.

Talk to your child about what relaxing means for them. They may like quiet time alone, or relaxation techniques such as yoga or meditation, which adults and other family members may also benefit from at this stressful time. There are more relaxation strategies on our website.

It’s important for children to have time with others their own age. This is not always easy, but if you are able to arrange online meet-ups with friends and family it can be a great benefit to all the family.

For ‘time out’ activities there are some great ideas on Disabilityhorizons.com, including switch accessible games, colouring and virtual visits to zoos.

Return to activity

Different children recover at different rates, but this time at home might give your child time to focus on activity, whether this is going for a walk in their daily exercise, walking in the home or kicking a ball. There are also lots of online videos available including yoga, fitness and dancing.

It is important to think about a gradual return to activities, especially after a recent head injury/concussion. There is advice available from CanChild on returning to activity after a concussion. Children and young people should begin with limited activity, such as reading a book. They may then progress to light activity and exercise, such as walking, before a gradual return to sport-related exercise.

Resilience

Resilience is crucial for any child or family affected by brain injury – and never more so than at this difficult time. These tips are important for all the family:

• Keep in touch with family and friends. This can be difficult at the best of times when dealing with the challenges of a brain injury in the family, but talking to others can provide a much-needed break and fresh perspective. You’ll also be helping others at this time as it is good for us all to talk. Looking after yourself is just as important as looking after your children, especially at this challenging time.
• Stay connected, helping children and young people to maintain contact with their peers and teachers can be incredibly supportive to their wellbeing.
• Siblings will have their own unique reaction to an acquired brain injury within the family. The change in circumstances may mean they will want time to talk and time they can dedicate to speaking to friends or doing activities and hobbies. The charity Sibs has provided information for parents of younger siblings and the coronavirus.
• Keep fit and well. Eat and drink as healthily as possible, get as much rest and sleep as you can, and try to keep physically fit, perhaps using online workouts. For children, this super gentle and accessible workout video can be done from a wheelchair.

The Children’s Trust has a full list of websites and resources called Covid Resources for Families that can help at this time. These resources are for parents/carers and for children following an acquired brain injury and for their peers who are adjusting and adapting to the changes they have faced.

Reassurance on COVID-19

At this time it is important to provide children and young people with the opportunity to ask questions where they can or to monitor for any changes in their wellbeing; this might include monitoring for changes in their routine, levels of fatigue or interest in activities.

Providing information appropriate to your child’s age or skills will allow them to make sense of the changes they are experiencing at this time or the information they may hear from others or read about online. We need to be kind to ourselves, checking in, monitoring how we are feeling and seeking out activities that help us. Explore ways that you can stay connected to people or activities that are important to you and reach out for support when you need to.

Do keep talking. You don’t need to have all the answers, but for children – and adults – struggling with anxiety around coronavirus, knowing they can share their worries will go a long way to helping reassure them.

For parents and carers, a short video animation on YouTube and a FACE COVID e-book have been produced by Dr Russ Harris, author of the international bestseller The Happiness Trap. These use ACT (Acceptance and Commitment Therapy) to deal with the coronavirus and the fear, anxiety and worry that goes with it.

For families with young people who may be feeling worried or anxious about Covid-19, COVIBOOK is an easy-to-understand way to help support and reassure them, and it is available in multiple languages. The famous illustrator of Julia Donaldson’s books, Axel Scheffler, has illustrated and helped produce a new book for children on coronavirus. The World Health Organization (WHO) has also produced a children’s story book on COVID-19.

You can download The Children's Trust's Covid Sensory Story for children to do at home with an adult to help explain the situation.

Rehab

Coronavirus has meant that rehab is likely to have changed, whether that’s community support, support in hospitals or a move to a specialist rehabilitation being cancelled or delayed.

Community rehab

There is support available for children who were having community rehab. Our website includes a wealth of information and strategies for families including information on rehab at home.

Here are our tips for children and young people:

• Rehab at home might mean joining in with everyday tasks around the home (occupations). If your therapist wants you to use two hands, you can join in games, hobbies and chores (you might need to take a bit longer or use bigger pieces).
• Take your time with your morning routine. You can work on many of your rehabilitation goals while you are getting washed and dressed (choosing what to wear, getting it out of the cupboards, remembering where you put things, having a go at doing up your buttons, washing and styling your hair).
• It might be that you are just getting used to doing things for yourself. You can practice sitting up, holding your head up, giving a signal for yes and no. Always give time for choosing (what top to wear (feeling); what shower gel to use (smelling); what music to listen to (hearing); when you would like to stop and rest (give a signal or expression if you can).
• If you have a garden, physiotherapy could mean trying to walk a few extra steps a day. Your physiotherapist could give you a guide on which activities and exercises to do.
• Just being in your outside space gives you the chance to look, listen and enjoy everything around. You might enjoy playing games such as UNO, Guess Who or Connect 4, which allow you to work on categories or think about planning, monitoring and shifting your strategy based on the actions of your partner. These are skills we often use in our learning and we can work on them through games or activities you enjoy.
• Take time together to play simple word and picture matching games, or games such as Scattergories and Articulate. Simply by talking about your day and asking each other questions about things you see and hear gives great opportunities to practice communication. Here are 200 other activity ideas specifically for those with brain injury.
• Arranging short chats with family and friends on apps such as WhatsApp or FaceTime gives great opportunities to practice important social interaction skills often impacted by brain injury.
• Sharing daily conversations can support our memory of events and allow us to reflect on our day and sequence the activities we have done. You may choose to look through photos of different activities you have done or use a checklist to take the opportunity to review moments from your day. This can also help you to reflect on the things you have achieved whether big or small!

If further help is needed, The Children’s Trust Brain Injury Community Service continues to offer support for families. The service can be reached on the phone or by email, and it can help families identify issues and potential strategies and support.

Hospital and specialist centres

A change to your child’s rehabilitation setting may have been disappointing to hear but it’s important to know that children/young people have made functional gains even when they have received rehabilitation some time after their injury.

While scientific evidence shows that early intervention is advisable, and would be preferable, research from The Children’s Trust (collected over eight years for 284 children/young people who had rehab at The Children’s Trust) shows that if children start rehabilitation many months after their injury they can still experience a positive change in their ability.

The ‘Stroke in childhood: clinical guidelines for diagnosis, management and rehabilitation’ (May 2017) also advises that “Time since stroke should not be a barrier for the consideration of intensive training.” Our experience at The Children’s Trust would endorse this recommendation.

Further help and advice

During the coronavirus outbreak, many organisations have listed information to help families with children who have had a brain injury or have a disability.

UKABIF: https://ukabif.org.uk/page/Coronavirus

Disabled Children’s Partnership: https://disabledchildrenspartnership.org.uk/coronavirus/

Council for Disabled Children: https://councilfordisabledchildren.org.uk/news-opinion/news/covid-19-support-and-guidance

The Child Brain Injury Trust has created resources including a factsheet on Covid 19 for families and information on homeschooling.

Encephalitis Society, live blog: https://www.encephalitis.info/blog/blog-covid-19

Government coronavirus guidance on vulnerable children and young people: https://www.gov.uk/government/publications/coronavirus-covid-19-guidance-on-vulnerable-children-and-young-people/coronavirus-covid-19-guidance-on-vulnerable-children-and-young-people

The Children’s Trust provides information on www.braininjuryhub.co.uk

To help families during coronavirus we have also produced Covid Resources for Families, a list of useful websites and resources, and Covid Sensory Story.

There is also this version of the sensory story for professionals working with children and young people with profound and multiple learning disabilities, which includes the use of PPE.