Helping Children Cope with Head Injury in the Family

Audrey Daisley, Rachel Tams, and Udo Kischka, Oxford University Press
Helping Children Cope with Head Injury in the Family

Key points

  • Children, like adults, are affected emotionally when a close relative, especially a parent, is head injured.
  • They need honest age-appropriate information to help them understand head injury, and an opportunity to express feelings and concerns. Sometimes counselling may be necessary.
  • Children (of all ages) can feel that they are to blame for the injury and need to be reassured about this.
  • There is a link between the ways that children and adults cope with stressful events. It helps if adults can model positive coping strategies for the younger members of the family.
  • Head injury services do not routinely offer support to children, so adults need to be proactive about asking for help.

In this chapter we turn our attention to the issues faced by children who have a close relative, particularly a parent, with head injury. We discuss the ways in which children can be affected by family head injury and provide guidance for adults on how to explain head injury and support children.

We have written this as a separate chapter for the following reasons.

  • Children have their own special needs at times of stress and cannot be regarded as ‘mini-adults’.
  • Head injury services do not routinely offer help to children (because of lack of resources, lack of expertise, and lack of awareness of the issues facing them). However, without advice, it can be difficult for families to know how best to help children through this emotional experience. It is hoped that this chapter will address this gap and increase your confidence in supporting children and asking for help for them at this difficult time.

The information contained here is directed, in the main, towards helping children who have a head-injured parent. However, much of it is applicable to children with other relatives with head injury, such as a grandparent or a sibling. We provide guidance on children’s information and support needs at the different stages of their relative’s recovery, and as children’s needs also vary with age, we have tried to draw out the key issues for children at various ages. This might be helpful to families where there are children with different age ranges.

How are children affected by head injury in the family?

The challenges and tasks faced by children when a parent (or other close relative) is injured are, in the main, very similar to those experienced by the adults in the family (e.g. having to cope with the changed relative, managing role and relationship changes). However, the implications of these challenges for children, and how they are experienced and understood by them, are different from the implications for adults.

  • Because of their age and lack of life experience, children may find it much harder than adults to comprehend or make sense of the changes observed in the parent. In particular, children (often secretly) worry that they might have caused their parent’s injury in some way.
  • Witnessing such changes (especially cognitive and behavioural changes) can affect how children go on to develop emotionally. Infants and toddlers, especially, can be confused, unsettled, and afraid of the altered parent; this can affect the bond or attachment they had with that parent and can make them feel insecure. As a result, they may become very unsettled, and not recognize or know how to relate to the ‘new’ parent.
  • Role changes within the family can also impact on children. Even very young children may be required to assume additional household duties to try to support the uninjured parent who may be caring for their spouse. Older children may be given extra responsibility, perhaps being asked to look after younger children in the family. They may be asked to ‘keep an eye’ on the injured person and this can gradually reverse roles, where children become almost parent-like towards the adult. This has been shown to have detrimental effects for both children and adults, even though most children will willingly take on the role of ‘young carer’. Very young children might have their place as ‘the baby’ in the family taken from them by a very needy injured parent, leaving them feeling neglected or ignored.
  • Children may be ‘stigmatized’ for having a parent who is ‘different’ and may be teased or bullied at school. Teachers may be unaware of the potential impact of head injury on families, and may be oblivious to the issues facing children or how to help them. Again, children may not openly discuss these problems for fear of causing additional family stress. Instead, they may try to resolve these issues alone, or ‘act them out’ in the form of problematic behaviour or poor school performance.
  • Children, like adults, also suffer the effects of the problems that can arise following head injury, such as financial difficulties, relationship breakdown, and house moves. However, unlike adults, they are often less emotionally equipped to cope with such issues and may worry only about how they will be personally affected. Older children may alter their own life plans in response to the changed family circumstances; for example, teenagers do not apply to universities far from home (as previously planned) as they feel that they must stay close to the family. However, this is often accompanied by feelings of resentment.
  • Children’s ability to cope with the changed family life is also limited by the lack of information and support available to them (therefore we have provided some brief information that you might want to read with your children in Appendices 2 and 3).
  • Children can also be affected further by the reduced physical and emotional availability of the non-injured parent, who is likely to be preoccupied with their partner’s needs, or who may be too distressed themselves to be able to acknowledge their children’s needs.

The small amount of research that has been carried out tells us that, when faced with these challenges, children can experience many of the problems that adults face, including anxiety, worry, depression, fear, and embarrassment. In addition, children of different ages tend to react in different ways (which might, if you have children of different ages in your family, explain why they could each be exhibiting different types of problems).

  • Babies and infants (who are often mistakenly thought not to be affected by events going on around them because they cannot yet comprehend them) tend to show problems such as unsettled behaviour, disturbed sleep, and feeding difficulties at times of family stress.
  • Pre-schoolers can become clingy (because they feel insecure), may have more temper tantrums, and may lose some of their previously acquired skills (e.g. begin bed-wetting again). They may also develop new fears (e.g. of the dark).
  • School-age children (pre-teens) worry about being different from their friends and are vulnerable to being teased about their parent being ‘odd’. They may become sad and withdrawn and fall behind in their school work. They can also show an increase in fears and phobias (in particular, they can fear others in the family coming to harm).
  • Teenagers may respond with resentment and anger. They might also become tired (as a result of having to take on additional household tasks) and their schoolwork could suffer. They may show an increase in mood swings and oppositional behaviour (this is often characteristic of ‘normal’ teenage years anyway) and stay out of the house and resist family rules and boundaries. Teenagers can also become preoccupied with issues of justice and may wish to seek revenge on any third party involved in the parent’s injuries (they may need support from outside the family in dealing with these strong emotions).

Some children, irrespective of their age, may not show outward signs of being affected and this can lead adults to assume that there are no problems. In some situations, children can even show improvement in their behaviour when faced with stressful situations; this may be the equivalent to an adult’s attempts to ‘keep busy’ as a way of distracting themselves from their worries. These children may need support just as much as children who show their distress openly.

Ways of helping children

Giving children information and explaining head injury

Like adults, children need information to help them make sense of head injury and the issues and changes they have experienced as a result of it. It is particularly important to provide children with information because in its absence (especially if they are very young) they have a tendency to create their own explanation of events, which can often be inaccurate and more distressing than the ‘truth’. Despite this, children do not typically receive adequate information when a relative is injured. Why not?

  • Adults (understandably) worry that children might be upset by discussion of their relative’s injury and so (misguidedly) try to protect them from this. However, in our experience children do want information and report feeling less upset when they know what is happening.
  • Head injury staff may feel that they do not have the expertise to discuss issues in a way that children will understand, and so they too avoid talking to them. They might also feel anxious about dealing with children’s distress, or lack the confidence to advise parents on supporting children. To add to this there are few published sources of information about head injury written specifically for children.

As a result of this adults can find themselves struggling to know how best to help children cope.

How do you explain head injury to children?

It helps to start by knowing what children of different ages typically understand and misunderstand about head injury. Children’s understanding of illness and injury (in general) tends to increase as they get older, with teenagers and young adults having quite a sophisticated view of illness, while younger children see it in much simpler terms. The same is thought of their understanding of head injury. As a result, it is helpful to provide information at a level that is suitable for your child to understand. Key issues for you to bear in mind are discussed below.

  • Babies and infants (up to the age of 2 years) The concept of a head injury is largely incomprehensible but they are aware of simple concepts such as being ‘hurt’ and ‘sick’, so these terms can be used when telling them what has happened to the relative. From around the age of 6 months babies become more aware of (and distressed by) the absence of a parent (especially if it is the mother and the separation is prolonged). Even very young children are sensitive to the ‘emotional atmosphere’ in the family and will pick up on and sense distress in others.
  • Pre-schoolers (up to the age of 5 years) As language and thinking become more developed pre-schoolers have a greater understanding of what an injury is. However, they are likely to struggle to understand some aspects of head injury, such as the more ‘unseen’ problems (e.g. poor concentration) and may not understand that the injured person has ongoing difficulties if they look well. They will also fi nd the idea of problems being long term or permanent difficult to understand, and so they are likely to expect the relative to make a full recovery.

A very important issue to bear in mind with this age group is that they typically view everything in relation to themselves (called ‘egocentric’ thinking) and so are extremely vulnerable to blaming themselves for the accident. Very young children have told us that they believe their parent’s accident happened because they (the child) had been ‘naughty’ that day. Children may not tell you about these beliefs without some encouragement, because they feel guilty and distressed. Therefore we have found that it is very important to reassure all, but especially younger, children that they are not to blame for the injury (whether or not they feel that they are).

Children of this age can also be afraid that they will ‘catch’ the injury from their relative and so may avoid them. They will also be likely to ask you to repeat information many times and frequently ask questions about what you have told them.

  • Young school age children (age 6–12 years) Children in this age group are capable of having a more sophisticated understanding of head injury; for example, they will understand both its ‘seen’ aspects (such as physical problems) and its ‘unseen’ aspects (such as cognitive problems) if they are clearly explained. However, they are still likely to expect the injured person to make a full recovery, and so may need help in understanding the longterm nature of head injury. Children of this age can be very concerned about what their friends will think about their relative (as they do not like feeling different) and so will need help knowing what to tell peers. This can be a very difficult issue for these children and they can be vulnerable to teasing. They, too, may blame themselves for their relative’s injuries and may try to compensate for this by trying to help them recover — this may be through the belief that they must not misbehave and so they may become overly helpful at home. If so, they may need help in knowing how to behave ‘normally’ towards the relative.
  • Older school age children and teenagers Young people in this age group can generally comprehend the complexity of head injury (in much the same ways as adults), and so can be told about issues such as the severity, seriousness, extent of recovery, and permanence of the injury. However, they will need considerable emotional support to be able to cope with this information.

Before giving your children information, try to ascertain what they already understand about the injury (and what they would like to know). This will help you know where to begin and how to structure information.

Try to prepare what you are going to say in advance of talking to them. Taking into account their age and what they already know), follow the structure below:

  • State what a head injury is (the information provided for children in Appendices 2 and 3 may be a good starting point).
  • Say how the head injury specifically affects their relative (include all areas of difficulty).
  • Reassure the child that the head injury is not contagious and they are not to blame for it.
  • Focus on the injured person’s strengths and abilities, so that a balanced picture is given.
  • Discuss recovery and the likelihood of some long-term problems. Balance this with an optimistic statement about the future and reassure the child that the relative will still be involved with them. For example, you could tell a 4-year-old that ‘Daddy cannot walk at the moment because his legs are not working after the accident. He is learning to use his wheelchair and when he gets really good at driving it he will be able to take you on his lap to the park in it.’
  • Acknowledge that the child may be feeling sadness and fear, that this is normal, and that it will improve.
  • Ask the child to repeat what you have said (so you can check for any misunderstandings).
  • Ask the child if they have questions.

It is important to be prepared for some direct and difficult questions that could distress you (e.g. ‘Will he ever walk again?’). It is usually best to give an honest answer where possible, although this can be upsetting for all involved. Very young children benefit from lots of physical contact (e.g. sitting on your lap) when being given ‘bad’ news. It is also important to see information giving as an ongoing process so that your children are constantly ‘up to date’ with what is going on.

What else can help children?

As well as being provided with information about head injury, there are a number of other ways that children can be supported.

Practical strategies

  • Try to keep children’s daily routines as ‘normal’ as possible (which can be very difficult in the early stages of the head injury). It helps if they can continue with after-school activities, clubs, and hobbies, but you may need to have extra help to maintain this.
  • It is helpful not to have too many different people looking after your children (especially if they are babies or very young) as this can make them feel insecure.
  • It is also preferable for them to be cared for in their own home (if possible) rather than going off to relatives.
  • Tell the school what is happening—they may be able to offer some extra support and will be sympathetic if the children seem upset or show changes in their behaviour.
  • Get advice on any extra help or benefits you could access (e.g. extra nursery sessions — your health visitor can often organize this to help you out).

Emotional support

  • Most children cope well with regular information about what is happening to their relative combined with the chance to talk through their feelings with an adult they know and trust. They can often have many conflicting feelings towards the injured parent which they should be encouraged to discuss (e.g. they feel sorry for them but also resent all the changes that have occurred since the injury). They may also be afraid that they will have to undertake care tasks for the relative (e.g. take them to the toilet) and should be reassured that this will not be expected of them. Younger children might prefer to draw or ‘play out’ how they are feeling (using dolls, toy hospitals) rather than talk.
  • If the relative is away from the family for a prolonged period (e.g. for inpatient rehabilitation), children need help to cope with this separation. Encourage regular visits to the relative (if practical) alongside telephone calls, e-mails, and letters. If visits are not possible it is helpful for the children to see photographs of the relative as they are, especially if they have changed significantly as a result of the injury. Children can be given a ‘symbol’ of the relative to have close, e.g. parent’s sweater to cuddle or their perfume.
  • If children are able to visit the rehabilitation unit, ask if they can observe and participate in their relative’s therapy sessions. This provides an opportunity for children to spend time with their relative and to learn about head injury and its treatment. However, it is important to plan visits involving children carefully, and to avoid visiting when children are tired, which the injured person might find hard to tolerate.
  • Encourage physical contact between the relative and children, although there may be some anxiety about this if the injured person has severe physical limitations.
  • Children may need to relearn ways of communicating with relatives who have speech and language problems.
  • Some children may need specialist support (e.g. if they are continually sad, their school work deteriorates significantly, or they are engage in risky behaviours such as drug/alcohol use). You should seek advice from your GP in the first instance or your relative’s head injury team (if appropriate). Headway may also be able to offer family support. Children who had problems (with behaviour, learning, or family relationships) before the injury are at greater risk for having increased problems afterwards and so may need a ‘closer eye’ keeping on them.
  • Children are best supported by adults who are managing their own stress. Therefore it is important to look after yourself in order to be able to look after others.

When do children need support?

Children need support and information throughout the whole of their relative’s recovery, but there are key times when they might experience heightened levels of stress and may benefit from additional help.

Acute stages

Children may need:

  • help to deal with the emotional shock of the accident
  • honest answers about whether their relative might die
  •  information about ITU/medical equipment and machinery in advance of seeing the relative for the fi rst time so that they are prepared.

Post-acute stage

Children may need:

  • help in managing ongoing separation from the relative
  • support in coping with changes in the relative
  • clear explanations about what will happen to their relative after they leave hospital and why (e.g. move to rehabilitation)
  • help in setting realistic expectations for the future
  • help in coping with setbacks (e.g. if their relative does not make progress)
  • help in understanding why the relative may not return home (e.g. due to behavioural problems)
  • considerable ongoing emotional support in the event of the relative remaining in a reduced awareness state, PVS, or coma.

When the injured person’s rehabilitation is finished/is discharged home

Children may need:

  • help in preparing for the relative’s return home (especially if they have changed significantly); it is not uncommon for children to resent the parent returning home, especially if the separation has been prolonged and new routines have been established.
  • support so that they do not to take on the role of a carer.

Longer term

Children may need:

  • ongoing emotional support to cope with the effects of living with someone with head injury
  • help to make normal transitions, such as going to university and leaving home, which many children who have parents with chronic conditions find difficult because of guilt and worry that the family may not cope without their help
  • help to cope with other stressful life events that can occur because of head injury (e.g. parents’ divorce, house moves); this ‘pile-up’ of stress can be challenging for all the family.

Is it all bad for children who have head-injured relatives?

So far we have focused on the possible negative effects of family head injury on children; however, this is likely to be only one part of the picture. Research is beginning to show that coping with difficult situations can bring out the best in children and can have a positive effect on their overall development. When they are well supported through stressful experiences, some children say that it made them more emotionally mature, taught them important coping skills that they might not have otherwise learnt, and helped them see themselves as strong people. They also said that their relative’s injury provided them with a different perspective on what was important in life and that they appreciated their family more after it.

Posted on BrainLine August 22, 2012

By permission of Oxford University Press, © Oxford University Press, 2009. THE FACTS: HEAD INJURY by Audrey Daisley, Rachel Tams, & Udo Kischka (2008) Ch. 10 "Helping Children Cope with Head Injury in the Family" pp.121-130. www.oup.com.

Comments

To the person, 44, dealing with mother's challenging behavior who had scarlet fever aged 4: Time..time helps us adapt our position in relation to it continually, your position changed when you discovered your mother's unfortunate brain injury secondary to the illness she had, it must have demystified things? hopefully empowered you a little further, and may you continually be empowered to reclaim full emotional health, coz by God those kinds of heart aches can hurt, its much more personal when its those closest to us... Its also amazing how different & varied our lived experiences are. My own mother has brain injury but is severely disabled can't communicate, though my memories of her are an unconditionally loving mother, so the heartbreak is different to yours. Its the relatives who treated me appallingly growing up - I just cut them out my life - easy as they are utterly neglectful anyway, the shit they inflicted stays with me though. Time is definitely helping, a decade, two decades later now and (I'm now 30) and I trust as time goes on it'll get easier for me to face it step by step, but its a slow process for me.

I'm 44 and not till age 40 was I told that my mother at age 4 almost died from Scarlet fever and had brain damage as a child. As if it was a big family secret... My brother and I are very scarred from her emotional and, at times as a child, very physical abuse. We have always felt our mother was just crazy really. In the last few years I have learned to not internalize the inappropriate horribly hurtful things she says to us and now I really need some guidance on how to really understand and cope as she ages.

My father had a closed head injury he sustained after being struck by a train crossing tracks. He was comatose for two months. He did not reach base line for six years. My four siblings and I were aged 2-10. My Mother was 31.  My mother was tough and loving. What a great women. The injury changed my father completely. Memory, personality, everything. The stories I tell people think I'm making up. My oldest brother ended up hating him as an adult and taught his children to hate and fear him. I named my son after him and took care of him in his last years. My oldest brother thinks his life would be different if not for the tragedy. I agree. Tragic events shape us.

Children need to truth. It's hard, but it's a better foundation to go from than anything else. Truth--albeit more sad and difficult at times--was what helped me most and no matter what the situation calls for us to grow up faster and stronger than we had planned on. Check out He Never Liked Cake, a memoir about growing up w a parent w TBI. http://www.amazon.com/Never-Liked-Cake-Janna-Leyde/dp/1452568286

I suffered a bleed on the brain from a ruptured aneurysm at of 47, l left hospital unable to speak or write. I am a mother of three children.  I to am working to improve communication between family members by writing an illustrated book which aims to address this very point. See www.storypath.co.uk for more information. Wish me well as I have my funding meeting on Friday!

A book that could help parents affected with 'invisible wounds' begin to explain PTSD and TBI to small children is "Daddy's Home" by Carolina Nadel. A sample of the book can be found at www.carolinanadel.com and it can be purchased there or on Amazon. Thanks and Good luck!
I would love to get a hold of that book you are talking about that your O. T. read to your kids. Looking for something like that to read our 9 year old daughter to help explain more about her Dad. Let me know if it is available anywhere. Thanks.
I asked my Occupational Therapist at the time to explain as best she could to my kids why I had changed in alot of ways after my head injury. She brought a folder with all the info she had written out herself in storybook form and sat with the kids and read it out then listened to and answered their questions.

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