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Supporting siblings of children diagnosed with a brain tumour

When a child is diagnosed with a brain tumour, it can be difficult to balance their siblings' wants and needs.

When your child is diagnosed with a brain tumour, suddenly your whole family life is turned upside down. You enter a world of hospital appointments, dealing with treatments and side-effects, making difficult decisions and coping with anxiety and worry.

Naturally most of your attention will be focused on your child who’s been diagnosed with a brain tumour, so it can be difficult to balance this with each of your other children’s wants and needs. In the heat of it all, sometimes the impact on siblings can be unintentionally overlooked.

This is totally normal, so try not to feel guilty. From speaking to other parents who’ve been through this, as well as healthcare professionals, we’ve produced this resource to help you support your child’s siblings.

How can a brain tumour diagnosis affect siblings?

The first thing other parents recommended was to try to look at how all the changes might appear to your sibling children.

Siblings have to deal with:

  • disruptions to daily routines
  • spending a lot of time away from parents and their ill sibling, due to hospital stays
  • not fully understanding what’s going on
  • uncertainty
  • worrying about their sibling with a brain tumour
  • changes in their relationship with their ill sibling. (In our Losing My Place report, nearly a third of the respondents with siblings said their brain tumour had a negative impact upon their relationship with brothers and sisters.)

The night Oscar was admitted overnight from A&E with a mass on his brain, Oliver, his younger brother, went to bed as normal and woke up in the morning with just his Nan in the house. He practically lived with my parents for around two months, so even getting him to come home with me for just one night was a struggle.

Danielle, mum of two

How might a sibling react to a brain tumour diagnosis?

Each child or young person will react differently following their brother or sister’s brain tumour diagnosis. Their response may depend upon family circumstances, their age and how much they understand about the situation.

I remember people saying to us at the very beginning that managing and supporting the siblings is often one of the trickiest things when you’re faced with a brain tumour diagnosis. It was a real challenge for us with our eldest son. He struggled to deal with all the emotions and uncertainty.

Mum, whose son is affected by a brain tumour

What feelings might a sibling experience?

We do know that siblings are likely to experience many feelings and emotions, similar to those experienced by the child or young person affected. And these are likely to change throughout their sibling’s journey with a brain tumour.

Your child’s siblings may feel several of these emotions at once. This mixture can be confusing and they may not always be able to understand or talk about how they’re feeling, whatever their age.

Worry and fear

They may not understand what a brain tumour is, how their sibling might be feeling and worry about their health and wellbeing. They may be scared about what’s happening when their sibling’s in hospital and also what the future may hold.

They may also worry about whether they're going to become ill too, especially if they aren't sure whether brain tumours can be caught like a cold.

Guilt

Younger children sometimes worry that they caused their sibling’s tumour.

Many children and young people feel guilty for any bad thoughts they might be having, or had, about their sibling, particularly if they didn’t get on before.

They may also feel guilty that they don’t know how to help.

Jealousy and resentment

Common feelings are jealousy and resentment - that their brother or sister is getting more attention than them and is spending more time with their parents.

As time goes on, particularly through multiple treatments, siblings may become less sympathetic and much more distant.

Our parents made the biggest efforts to keep my sister close and not let her get ‘side-lined’ in any way, but there was only so much time they could give her while they were also taking care of me full time… I now feel she resents me immensely sometimes for getting that level of attention, not just from our family, but also friends.

Young person diagnosed with a brain tumour, who has a younger sister

Anger

Siblings may feel angry about the increase in attention towards their brother and sister, but also angry at the world because their brother or sister is feeling poorly.

I have three other children. One is very angry − has been hospitalised for self-harm and reviewed by CAMHS. One was a baby when his brother was diagnosed and plays up because he doesn’t get the attention he deserves.

Parent of son aged 10 who's living with a low grade tumour

Embarrassment

Children or young people, particularly teenagers, may feel embarrassed if their brother or sister looks different, perhaps through scars, hair loss or weight gain due to steroids.

They may also be embarrassed if they behave differently, perhaps due to cognitive or communication difficulties, or seizures.

His behaviour became worse, he became very angry, he just wanted attention and he felt left out. As he was only 6, he didn’t understand the full extent of my son’s condition and didn’t get why we weren’t there for him for all that time.

Parent of sibling, aged 6

What behaviours might I see in my sibling children?

Many children or young people may be scared of, or worried about, upsetting their parents and adding to their stress, so they may suppress their feelings.  

Instead, these feelings may come out in their behaviour, at home and at school. This can include:

  • becoming withdrawn or quiet
  • crying easily
  • regressing in particular behaviours, e.g. acting younger than their age, or bedwetting
  • becoming argumentative and/or rebellious
  • increased anxiety about being away from parents, e.g. going to school
  • becoming easily frustrated and having outbursts of anger
  • experiencing physical symptoms, e.g. headaches
  • difficulties sleeping
  • difficulties concentrating on work at school
  • becoming disruptive in class
  • falling behind with class work and/or homework
  • missing school.

This can impact their physical and mental health and also their education.

Our daughter felt neglected when our son was ill. It severely affected her academic performance when she did AS levels.

Parent, whose son aged 22 is living with a low grade tumour

How can I support my sibling children?

The folowing tips and advice have been provided by those in our community who’ve experienced first-hand the impact a brain tumour diagnosis has on a sibling child.

Acknowledge their feelings

The most important thing you can do is acknowledge and validate how they’re feeling and give them plenty of opportunities to talk about this. Reassure them that their feelings are normal and okay.

    If they don’t want to talk about their feelings, think creatively – perhaps they could have a feelings journal to write down/draw any feelings or worries.

    Or they could create a worry box. Write down things they can and can’t change. Acknowledge the things they can’t change, then put them in the worry box – it helps them to let it go. Plan an action for things they can change, then put them in the box once they are done.

    Music and play can also be really powerful ways to express difficult feelings.

    Keep talking to make sure they feel involved

      Even young children will be aware of things not being right, e.g. through hushed conversations that stop when they enter the room, parents being touchier, etc. They’re more likely to imagine worse than if you speak to them.

      Give them open and honest information relevant for their age and always give them space to ask plenty of questions. Remember if you don’t know the answer it’s okay to say so.

        Talking about how you're feeling can can be a really good way to normalise more difficult feelings, so your children will feel comfortable in expressing these themselves.

        Make them feel important

          Perhaps there are enjoyable tasks or jobs you could get them to help out with. Or they could help look after their brother or sister – perhaps reading, singing or putting on a play for them when they’re feeling tired, such as after chemotherapy.

          Asking for help can make a sibling feel valued and can significantly reduce feelings of isolation and loneliness. Be really careful not to overdo this though!

          Try to keep some normality and routines

          If it's possible, stick to regular routines to provide some sense of stability, for example, when getting ready for school or at bed time.

            We tried our best to keep things as normal for him as possible, so keeping his sports clubs and Cubs going.

            Parent of sibling, aged 11

            Spend time together

            Try to put a bit of time aside to spend some time one-to-one. This could be as simple as going for a short walk or watching a favourite film.

            Let them know you’re thinking of them

            Even if you aren’t able to be physically present, make use of FaceTime, phone calls and WhatsApp to stay in contact as much as possible.

            Remind them it’s still ok for them to have fun and continue to do the things they enjoy

            Whether this is seeing friends or going to a school club. Encouraging them to make decisions about what they want to do (within reason) can be really empowering.

            Say yes to practical help

            If family and friends are offering to support with daily activities, accept this. It’ll free up more quality time to spend with your children.

            Keep in close contact with school

            School is likely to be a place where children and young people may show behaviours and feelings, so having open communication with teachers can be really beneficial.

            If staff at school are aware of the situation, they’re able to support the sibling in the most appropriate way and can look out for any potential changes in the child’s behaviour and interactions.

            It‘ll also be important for teachers to support the sibling’s friends, so they understand how they can support their friend.

            Seek external help if you feel it’s needed

            We know that in some circumstances children and young people can experience mental health difficulties, including self-harm and depression, following a sibling’s diagnosis.

            If this is something you’re concerned about, schools sometimes have counsellors and Emotional Literacy Support Assistants (ELSA).

            Also many hospitals have sibling support groups and counselling services. Alternatively, reach out to your GP to find out what support could be available.

            We worked closely with school. Our school had an ELSA support teacher who saw the oldest brother every week and it made him feel special.

            Parent of sibling, aged 11

            Get support

            If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.

            If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:

            Support and Information Services

            0808 800 0004 (free from landlines and mobiles)

            support@thebraintumourcharity.org

            Phone lines open Mon-Fri, 09:00-17:00

            You can also join our active online community - Join our online support groups.