Children of a parent with brain injury
“I feel so bad for mom, it's sad that she has to go through this”
“I often felt an inner struggle whether I would stay with mom or I would go out with my friends”
“The hardest thing is to see that my mother has so much trouble. She often cries […] Then I'm also going to cry. She is very sensitive at the moment. I don’t have to say much and she starts to cry..”
“My sister and I took into account my mother a lot. Although it is not normally a characteristic that you see a lot in teenagers. But we did not want to make her unnecessarily upset.”
“I spent a lot of time having matches in arguing with my father. He manoeuvered me in a very difficult role. He asked me - without saying directly - to take over household tasks of my mother […]I was more and more like a mother to my brothers and sisters. But not a very good mother.”
Quotes from the Danish book "Når verden vælter" (“when your world is upside down”). 26 stories of adolescents with a parent with brain injury. The book has not been translated.
A parent with brain injury
When a parent is affected by a brain injury, the others in the family are greatly affected.
There are so many changes in the family that years later the effects are still being felt.
Although the effects of brain injury are different for each individual, there are also some common experiences that children of a father or mother with brain injury share.
Children and adolescents with a parent with brain injury
Although since the 90s there is more attention to the long-term consequences of brain damage, only recently there is more focus on children and young people whose parents have been affected by brain injury.
In the Netherlands, every year an estimated 160,000 people get brain injury or a brain disease (stroke, tumor, heart attack).
It is estimated that 30% of people with stroke are younger than 65 years. This means there are many families with children and youth affected by brain injury. (Source hersenstichting.nl)
Children and young people feel responsible
The effects on children differ from the effects on adults. For example, the perception of time is different in children. They have trouble to see the relationship between the changes in the family and the sudden brain injury. In the worst case this can lead to children blaming themselves for what happened.
A new parent
For many people affected by brain injury, there are noticeable changes in physical, cognitive and emotional functioning. But it can also happen that behavior and personality change, and that is often only detected as the person returns home and wants to participate again in family life.
The changes in the parent can affect the emotional development of children living at home. The connection and relationship with the child may be changed. Children and young people must therefore learn to deal with a "new parent". Mom or Dad is no longer the mainstay they have always known. At the deepest level, it is a loss of the bond and attachment with the "former parent" whom the children knew.
Home does not appear to be like home anymore. A result may be that the child is restless and may feel unhappy because he / she does not know how to cope with the problem.
The child is in a mourning process and is for a long time under severe emotional strain. Children of a parent with brain injury are at increased risk of developing emotional and behavioral problems.
When a parent is affected by brain injury, often roles in the family change. The person with brain injury probably cannot perform the same tasks as before. The result may be that even small children get a greater share of the household task or they are imposed upon them and become an aid to the affected father or mother.
In families with older children it happens that one of the children will take care of the father or mother with brain injury. Not always, but over time it will have been almost a role reversal, where the child is parent for his / her own father or mother. This can have serious consequences for the younger
Anxiety and depression in young members of the family
Children and young people, in contrast to adults, have not developed coping strategies for stress and life changes.
In the development of these strategies, the parents usually play an important role. When a parent is ill or disabled, this task often gets out of the picture for this parent.
Problem solution for young children is usually focused on themselves and their own needs. As a consequence, children and young people often blame themselves for what is going wrong in a family. There are few studies in this area, but some signs indicate that children and youth who have a parent with brain injury, are prone to anxiety and depression.
Schools lack knowledge and experience
In child care and schools there is still a lack of experience and knowledge about what changes brain injury brings in families.
The signals in the behavior of the child or the youngster may be overlooked and this may even lead to bullying or exclusion from a group.
It rarely happens that teachers have enough knowledge to ask further questions. The youngster or the child rarely dares to bring forward concerns or problems in the family as conversation topic. By feelings of loyalty of the child or the youngster, an open discussion about family problems can be seen as violating trust.
This may cause the young person or the child to be isolated and to underperform at school or exhibit excessive behavior, which may increase the isolation.
Screening Instrument Adolescents with a chronically ill parent (SACZO)
In the context of the Screening Instrument for Adolescents with a chronically ill parent (SACZO) Dominik Sieh investigated how young childer of parents who are ill cope with their situation and whether they would like to get support. The research resulted in a preventive screening tool. The manual includes a guideline, a decision tree and a description of a practical example. This preventive screening tool is a signaling tool to determine the likelihood of future problems in young people who have a parent with a chronic medical condition.
The study aimed to detect children with an increased risk of future problems at an early stage.
Points of departure for a family interview; theses
- It is not your fault
- It is not your responsibility
- It is not wrong to feel angry
- It is okay to be child
Dutch rehabilitation centers organize an increasing range of activities for children in order to help them learn about their parent with brain injury. For example, rehabilitation center De Hoogstraat organizes days for children aged 4 to 18 during which they receive information on brain injury and can see what their parent is doing during rehabilitation.
Publications on SACZO by Dominik Sieh
WEBMD (health information on the internet)
Rehabilitation - different countries
Association for the rehab of brain injured - Canada