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Siblings and Acquired Brain Injury - Fact Sheet

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Siblings and Acquired Brain Injury - Fact Sheet

Because siblings are such a large part of each other's lives, it is not surprising that when one sustains an acquired brain injury, the others can be greatly affected - sometimes for many years.

 

Brothers and sisters often share a lifelong relationship. They greatly influence one another's behaviour, personality and identity. The emotional bond that exists is often characterised by such dynamics as love, hate, jealousy, rivalry, companionship, solidarity, loyalty, competition, and affection. Although the onset of a child's brain injury is different for every individual, there are some common experiences that siblings are likely to feel.

 

THE SIBLING STORY

Having a brother or sister acquire a brain injury can be devastating for a young person. As shared by one teenage girl, "…The whole situation… Sort of turned our lives upside down which was a real bugger. Probably because everything was going really smoothly and then, Yuk... Lots more stress than usual…. We were tired and freaked out and all that sort of stuff that you have got to expect".

 

Emergency, intensive care and hospital

This can be a particularly stressful time for siblings because it is fuelled by a range of thoughts and emotions. Siblings may be present when their brother or sister sustains their injury or becomes ill. Those who witnessed the injury said that they still experienced memories of the accident many years later.


Some of the young people who shared their stories said that they blamed themselves or accepted some form of responsibility for their brother or sister's brain injury, despite having no control over what happened. Seeing their brother or sister in hospital can also be overwhelming and confusing. For some it may also trigger fears of death. Siblings said that talking to someone, particularly their parents, or close relatives assisted in helping them feel better. In addition to feeling intense worry, some young people may also experience emotional turmoil, such as feeling shock, numbness, isolation, and sadness. Siblings, especially those who are teenagers, may want to spend all their time at the hospital with their brother or sister, which can interrupt their routine or life plans.

 

If parents are at hospital much of the time siblings may have to look after themselves more and may feel jealousy or abandoned. These feelings may continue after discharge when the parents are concentrating on the injured child. Siblings usually understand and accept this situation but may experience these feelings nonetheless.

 

One of the most difficult experiences described by the young people who told their stories was seeing their parents upset and distressed, especially when their brother or sister was in hospital and for some time after. As a result siblings may attempt to put on a brave face and act in control.

 

Return home, rehabilitation and onwards

Siblings also have to adjust to many changes when their brother or sister returns home. Many notice the full impact of the changes when their brother or sister returns home and may be confused and unable to cope, particularly with violence or risk-taking behaviour. There may be a deep sense of loss as a result of the changes in their sibling, grieving for the person they "lost" and the person they could have been. They will frequently be worried for them and become protective even if they are younger chronologically.

 

Siblings can be frustrated, stressed, angry, and embarrassed about their brother or sisters' behaviour at times. At the same time however, they may feel guilty and ashamed for these feelings. A positive outcome is that siblings often have an increased understanding of disability and become more tolerant, responsible and mature. They may also be able to better accept their situation and realise their own special worth and set and accomplish their own life goals.

 

STRATEGIES FOR ASSISTING SIBLINGS

The type of support given to siblings will often depend on such things as the age of the sibling, their friendship networks, familial support and their living environment. However, there are many complex processes impacting on how young people react to their brother or sisters' brain injury. When assisting siblings one must keep in mind that each person should be listened to carefully and their individual experiences and needs assessed.

 

Encourage communication

Many siblings can greatly benefit from debriefing to help them process their thoughts and feelings about the event. Often a staff member at the hospital can arrange for someone experienced to talk to young people about their fears, guilt, anxieties and concerns. Talking to family and close friends also helps siblings enormously, as does someone willing to listen to them about what they are thinking or feeling. Even though it may seem daunting and scary, talking helps young people to get things off their chest and to get appropriate support. It may be that siblings feel the need to talk about this at length and for some time after the accident as the experiences of siblings change over time and may impact on them for many years after the injury. The school which siblings attend must be informed of the siblings' situation so that they can allow concessions and provide support for them, particularly when their brother or sister is first injured.

 

Appropriate information, preparation and inclusion

Most siblings want as much information as possible about their brother or sister's brain injury, and their condition. Information is usually available in booklets and brochures given out in hospitals or at various interstate associations and hospitals. Nurses and doctors may also be able to help by providing information to the family, including the siblings. It is also important to prepare siblings for the first hospital visit, especially about the medical equipment used to help their brother or sister and its purpose. Some siblings will want to be involved in their brother or sisters' recovery and rehabilitation.

 

It is important, however, for siblings to be given a choice. Some younger siblings may prefer limited information as more details about their brother or sister could upset them further. Siblings want to be sufficiently briefed and prepared for what to expect when their brother or sister returns home, such as how the acquired brain injury may affect their behaviour and how to handle these changes.

 

Normalise and validate feelings

It is very important that siblings know that their feelings are appropriate and common to experience when their brother or sister sustains an acquired brain injury. It is important to encourage siblings to talk about their concerns and have someone listen to them. Often parents can encourage siblings to talk by talking about their own feelings. This sets up an environment that shows other family members that talking about their feelings is acceptable. Siblings should also be given permission to feel upset and to talk through their concerns and frustrations. For those young people who do not wish to talk to anyone, encourage them to write down their feelings, by either writing themselves a letter, or writing in a journal or diary. Alternatively, reading information and providing them with books and brochures about the impact of acquired brain injury may also help.

 

Acknowledge siblings' contributions

It is very important that parents acknowledge the difficulties and sacrifices that siblings make when their brother or sister sustains an injury. Many siblings put on a brave face and attempt to be strong for the entire family, sometimes for years after the injury. No matter how unaffected siblings may appear, however, it is important that their contributions, trials and achievements are recognised. Acknowledging their difficulties, responsibilities and understanding is an essential ingredient in supporting siblings. It is also important that siblings are not always expected to provide constant time, attention or care to their brother or sister with acquired brain injury. Siblings sometimes need time to themselves or to be with their friends alone for time out.

 

Time-out with parents and respite

Siblings still need some time out with their parents alone. They need to know they are still special, even if they don't have much time together. Do not assume that siblings know this, sometimes they need a reminder. Younger children sometimes display changes in their behaviour when they fail to understand the inequity of time - especially when their brother or sister with acquired brain injury looks like they always did. Encourage the siblings to go out with friends on their own and to continue their sport, activities, school, hobbies and goals that interest them. It is important to return to stability and routine as soon as possible.

 

Groups

Siblings can gain an enormous amount from hearing other stories of siblings in a similar situation. This helps them to feel supported, by knowing that other people experienced similar things. It is therefore important to encourage children to go to sibling groups when they become available, because support from people in a similar situation can provide great relief and release many of the anxieties and fears they may have. These groups are also fun and provide activities and time out for siblings. Other sibling support networks come in the form of an internet group, whereby siblings of children or adults with special needs can talk over the internet and share their experiences. The address for this web site is www.siblingsaustralia.org.au

 

CONCLUSION

It has been shown that life after brain injury can present many changes, challenges and learning experiences for all of those affected. Like all family members, siblings are also affected in a myriad of ways. The stories shared by the young people who have experienced this situation reflect the strength, resilience, patience and maturity in managing the life change presented to them when their playmate, confidante and life's companion is struck with an acquired brain injury. Siblings mostly cope extraordinarily well, however, they may also experience many underlying fears, anxieties, feelings, thoughts and concerns that they find hard to understand and comprehend. These experiences can be somewhat alleviated when they are provided with support, compassion, understanding and acknowledgment. As one sibling put it, "Don't give up hope because it does come good. Like it might not come good totally, but it does come good - enough so that you can get over it."


 

 

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