Why it’s important to talk to siblings about disability or illness
Improves understanding
It helps siblings understand why things are different with their brother or sister. For example, a sibling can understand that their brother or sister gets more attention from a parent because they need more help, and not because the parent loves the child with additional needs more.
Helps sibling relationships
It helps improve the relationship between siblings and their brothers and sisters. For example, if a child has difficulty playing, a sibling can be helped to understand that this is because of the disability or condition, and not because their brother or sister doesn’t like them.
Maintains trust
If parents don’t tell siblings about the disability or condition, the effect on siblings is usually worse than telling them. They may hear things from others or read things on the internet which may not be correct. They may make up their own version of what is happening, which may be worse than the reality. When they find out that a parent has kept information from them, they may feel angry and not trust their parent to be truthful.
‘It became easier once we started talking about her brother’s disability, it’s good now, she’s asking questions and she can tell others about it.’
How to talk to siblings about disability, serious illness or additional needs
Tell your sibling child at the time of diagnosis. Answer questions as they come up. Be open and honest; this helps your sibling child to trust you. At the age of about seven, many siblings start asking questions about their brother or sister. This is an ideal time to answer questions in a matter of fact way. Keep siblings up to date if things change. They will also need more detailed information as they get older.
Ways to share information with siblings
Different things work at different ages however it is always easier to discuss issues with children through an activity like one of these:
With pre-school siblings make a scrapbook about your family that includes information about your child’s disability or condition.
Read story books about children who are disabled or have additional needs and their siblings in order to talk about it together. Download the YoungSibs booklist 2024
Make a question box to put on top of the fridge where siblings can write down any question they have about their brother or sister’s disability or condition. If you are not sure about the answer, let siblings know that you will ask at the next appointment with the practitioner who supports your child.
With older siblings use the internet together to find good websites that have information about your child’s disability or condition.
Siblings telling other children
Other pupils at school often ask siblings about their brother or sister’s disability or condition. Help them find a short and easy sentence to describe the disability or condition to other children. Help them practice saying this confidently in role play at home.
Information from relatives
Parents talk about different views about disability in different generations of their family and in different cultures. This can be especially so in relation to learning disability. Relatives may not have enough knowledge about disability or may not be able to accept that this is possible in their family. They may believe that learning disability can be grown out of in time or may not see the full picture of a child they don’t spend much time with.
Siblings get very confused when different family members say different things about disability. They may also get upset because close family are not able to understand what they are experiencing at home. Encourage family members to give siblings consistent and accurate information about disability
Talking about a life-limiting condition
Some siblings are growing up with a brother or sister with a life-limited condition or illness. As a parent you are already facing up to a hugely challenging situation and thinking about how to support siblings may seem like too much. However, siblings cope best when they are told about what is happening and when they can share their feelings about it.
What makes it harder for siblings
- Finding out about their brother or sister from a friend or neighbour.
- Being told that everything is going to be OK when they know that it isn’t.
- Worrying that they may also get the same illness or condition as their brother or sister.
- Not having anyone to talk to about it.
- Feeling guilty about getting on with their own lives.
- Feeling left out of conversations about their brother or sister.
Communicate openly
Explain what is happening simply and truthfully in words that your sibling child can understand. Do this at a time when you have privacy and time, when you won’t be disturbed. Be honest and matter of fact with siblings. Encourage them to ask you questions.
Make it very clear to siblings that they themselves are not going to die. Also let then know that something they did or said did not cause their brother or sister to become ill or disabled.
Explain physical changes in their brother or sister to siblings as they are expected or as they happen.
Reassure siblings that routines and ordinary family life will carry on and that school, friends and family activities are all still very important. Let siblings know that it is OK for them to lead their own life and to enjoy having fun with friends. Tell siblings that you want to spend time with them too.
Help siblings find ways to have fun with their brother or sister and to do things together. These will be positive memories for siblings in the future.
If your child with additional needs attends a children’s hospice your sibling child will also be supported there.
Genetic counselling
Whatever the nature or cause of their brother or sister’s condition, many teenage siblings have some concerns about genetic issues. Adult siblings tell us that genetic issues play a large part in their thinking about the future. If your sibling child is a teenager or young adult, these are some of the questions they may currently have:
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Will I have a child who is disabled or very ill?
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Does having a brother or sister with this condition make me more likely to have a child with it?
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Is this condition inherited and will I pass it on to my children?
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Where can I get help to make decisions about having children of my own?
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Will my future partner be concerned about the fact that my brother or sister is disabled?
Most siblings find it very hard to discuss these concerns with their parents. However, it is important to acknowledge to your son or daughter that some siblings have concerns about having children of their own. Let him or her know that this is something that can be discussed with a genetic counsellor. If they want to do this at some time in the future, they can ask their GP to make a referral for them.