An acquired brain injury affects every member of a family. Siblings may face a particularly difficult time, not least because most brothers and sisters won’t have the benefit of an adult’s maturity and perspective yet.1 And just as each child is affected differently by an acquired brain injury2, their siblings will have their own unique reaction to this sudden change in circumstances.
How a brother or sister deals with this change may depend on their age, their maturity, and their own temperament.3 Also worth keeping in mind is that each member of the family has different needs and priorities at different times following a child’s acquired brain injury.
Siblings may have one set of needs in the hospital, but a very different set when their brother or sister has returned home. Parents are often very much aware of these needs – some say the impact on siblings is one of the things they worry about the most.4
It’s easy to see why. Relationships between siblings are often as complicated as they are caring. And they are unlike any other – they are usually the longest relationships we have over our lifetimes.5 And a sibling may be one of the most important players in the team around an injured child.
Casey's sister went from pillar to post, really. I think she felt very out of the way. But all we could think about at the time was Casey's health." Parent's experience
We know that a supportive and positive family environment can make a big difference to a child’s progress.6, 7 And brothers and sisters may have a big part to play here. Before we look at some of the thoughts and feelings siblings may experience at particular stages, let’s look at some general issues.
What siblings may experience
Feelings of unfairness. It might be difficult for a young child to understand why their brother or sister is being treated differently to them. They may not know why they get told off for certain behaviour while the injured child seems to “get away with it”.1, 8 In addition, the injured child may take out some of their anger or frustration on siblings.9
Worry, anxiety and sadness. Siblings may worry about their parents or their brother or sister.
They may feel protective over them too.3
Confusion and misunderstanding about acquired brain injury. Children may find it hard to understand changes in their sibling’s personality or behaviour. They may be embarrassed by the injured child’s behaviour8 and may be wary about having friends at the house. Or there may be feelings that they’re not being told about what’s going on, or being ‘kept out of the loop’.10
Emotional difficulties. As well as the initial shock, siblings may experience anxiety, pressure, anger, jealousy, depression and loneliness. Some children may feel they’ve lost some of their parents’ affection.11 Some younger children may worry they can ‘catch’ an illness their sibling has.
Siblings might feel guilty about what’s happened (sometimes called ‘survivor guilt’). They may feel guilty about expressing their own feelings because they don’t want to add to the burden on their parents.
Difficulties with behaviour might arise. Children aren’t always able to talk through their feelings or frustrations and this may result in difficulties with behaviour.
Sense of loss. Siblings may feel the same sense of loss their parents feel.12
Siblings at hospital
A family can be thrown into chaos when a child is in hospital. Parents may be under enormous strain, and may be in a state of shock. Sometimes, parents may be experiencing post-traumatic stress disorder.13
Siblings may well experience their own feelings of shock. If they have witnessed or were involved in an accident, they may develop post-traumatic stress disorder.9
Their familiar routine may disappear very quickly and they may have to stay with grandparents, friends or relatives, which may leave them feeling ‘left out’ or isolated.1, 14 They may miss school because of what’s happened.
It’s inevitable that much of the family’s focus will be on the injured child, but siblings may not understand this and feel neglected or left out.15 They may need reassurance that they are cared for, safe and secure.
Siblings in a rehabilitation setting
Some children with acquired brain injury may go on to a rehabilitation programme after hospital. Much like a hospital, a specialist centre may be a strange and unfamiliar place for a sibling.
And again, their daily routine may change entirely. We talk about the importance of sharing information in our section below. In some circumstances, it may be useful for siblings to sit in on therapy sessions.
It may help them understand what’s going on, and it may help them to appreciate what hard work rehabilitation can be.16
Siblings on the return home
Returning home from hospital or a rehabilitation centre can be a time of particular strain for all of the family.17 Children may experience confusion and anxiety about the shifts and changes within the family.
Some younger siblings may need to become more like older siblings as they take care of their brother or sister. And the relationship between parents and sibling may be affected.18 The child with an acquired brain injury may see their younger sibling ‘overtake’ them, and this often needs to be dealt with very carefully.19
Siblings may be under a great deal of pressure, and they may miss school.20 If they do take on extra responsibility, then a parent may worry they are ‘growing up too quickly'.4 The siblings themselves may have difficulties with behaviour, or become withdrawn.21
What can parents do?
The flow of information
It can be very difficult to judge just how much to explain to a sibling and at what time.10 Parents may worry that their child is too young to understand. Should we tell them everything? Some siblings say their parents act as ‘gatekeepers’ of the information, holding back some things, but not others.22 This might lead to them feeling uninvolved, or ‘out of the loop’.
Nevertheless, there are some things – particularly the physical circumstances of acquired brain injury – that could be distressing for young children. It can be useful to take your cues from the child themselves. If they’re asking about certain things, it’s clear they want to know more. Try to give them as much information as will satisfy them at that time.
Often, honesty is the best policy when talking to children about illness. Children talk about not wanting to be spoken down to. It’s also simpler to tell the truth. If you don’t know something, or the outcome of a particular situation isn’t clear, then there’s nothing wrong in saying so.23
Talking things over
Try to encourage siblings to talk about their feelings. Books or websites about acquired brain injury can be a useful starting point.
These conversations may be very painful for parents. It may be worth making clear that it doesn’t necessarily need to be you who they talk to. Perhaps a friend, relative, teacher or another professional might be able to help – anyone they feel comfortable with.
Counselling should be available through your child’s school or your GP if your child feels they would like to speak to someone outside the family.
Talking about your own feelings 24
Setting an example can sometimes be helpful. By talking about your own feelings, a sibling may feel more inclined to share theirs. It may help them to understand that it’s okay to be sad together. And that the feelings they may be experiencing are perfectly normal and understandable.
Talking about acquired brain injury with others
In the same way parents can become anxious about talking about acquired brain injury with friends, relatives and colleagues, so too can their siblings. It isn’t an easy thing to explain. But by spending time with a sibling working out how they might explain the situation to friends or their teacher, they may feel less anxious about it.
Time to be themselves
Parents are often advised to find time for themselves, to spend with friends or on a hobby or pursuit. The same can be said of siblings, who may feel left out or even neglected. They may feel less ‘carefree’ than before their brother or sister’s injury.11
Try to find things they can do with friends, and look for activities you can do with them that will make them your focus. Likewise, making regular time to talk about their interests, their friends and school can be very useful.
Short breaks (sometimes called respite care) can be very helpful to parents in these circumstances. By having someone look after the child with an acquired brain injury, it can be easier to spend some dedicated time to spend with their brother or sister.
Short breaks gave us a bit of breathing space as a family. During the school holidays, it meant we knew Michael was being looked after one afternoon a week, and so I’d take Abigail out to do things. I think it was something that made a big difference to her." Parent's experience
Some children may put on a brave face when things are difficult for the family.
They may not want to get in the way, or may come to feel that their difficulties are trivial by comparison. It’s important that they still have time to be children.
If we had that time again, we wouldn’t have let Charlie’s brother help out as much as he did. I think the extra responsibility was a little bit too much for his age, looking back." Parent's experience
It can help to show your gratitude if they are helping out with things.
Bullying may be an issue that affects all the children in the family.
The Sibs website has some excellent information for children affected by all the issues discussed here.