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‘Forgotten children’ – the experience of siblings and how you can help

Siblings of children with cancer can experience a lot of change in their life and be directly affected emotionally and socially by their brother or sisters’ diagnosis. We take a look at how you can help.

When a child is diagnosed with cancer, it can immediately change the dynamics of a family. There is added pressure put on parents, which often has a big impact on siblings. A sibling may feel they have been forgotten or abandoned because their parents are busy at the hospital or preoccupied with other responsibilities, they may miss out on scheduled activities or be passed around to extended family or friends, and their structure and routine is often greatly disrupted.

Whether a child internalises or expresses their emotions can vary depending on their age or personality. No matter how they choose to cope with their emotions, some they may be feeling include:

They may feel sad that everything at home is changing, not being able to spend quality time with both parents. They can feel sad and grieve the loss of the sibling relationship they once had before the cancer diagnosis.

They can feel resentful for not getting their parents’ undivided attention. If siblings don’t know the extent of the situation, they can feel jealous they still have to go to school, do homework and chores, or even extra chores if their sibling with cancer is not there or too unwell to help. They can sometimes become jealous or angry if the sibling with cancer is showered with gifts or doesn’t get in trouble for their naughty behaviour, and they aren’t getting the same special treatment.

They could be worried they might ‘catch’ cancer or be affected by it somehow. The normal family roles may shift due to the unexpected demands of the parent or carer needing to focus their attention on the diagnosed child. A grandparent or family friend may need to step in to help with the day-to-day activities such as driving the children to school or after school activities. Keeping with the routine is an important aspect when trying to lessen the feelings of fear and anxiousness around a cancer diagnosis.

Siblings may feel guilty for not being sick and still being able to play and go to school or feel guilty for not being able to help. They could even feel guilty for having bad thoughts about their sibling with cancer.

Some may feel excluded due to the many hospital and doctors’ appointments their sibling and parents go to that they don’t or may feel like they’re missing out for not knowing what is going on. A sibling may feel like they have to miss out on things like extra-curricular activities or social outings because no one can take them.

Here’s the thing about childhood cancer. It’s not just about the child who’s affected. It’s a family illness and it affects us all in very different ways.”  

Siblings can react in different ways when feeling stressed or anxious. Some common yet normal responses to stress siblings may demonstrate are:

  • Wanting to be alone and becoming withdrawn or becoming less interested in activities that were once a favourite or becoming quieter and connecting less.  
  • Acting out in an attention seeking manner at home or school, or displaying negative behaviour and throwing temper tantrums
  • Separation anxiety; not wanting to be away from their parents or their sibling with cancer
  • Anxiety in the form of stomach and head aches, vomiting, bed-wetting or trouble sleeping

Encouraging the sibling to talk to parents, grandparents, extended family, teachers or friends can help take some of the pressure off their shoulders. They may need to be encouraged to talk to someone about their feelings because they don’t want to burden anyone with their problems or questions.  Talking to an adult they trust about their feelings may provide children and young people a helpful way to take some of the pressure off.

Sometimes young people and children may need a little supportive coaching from adults to understand the underlying feeling. At times, they may stay silent because they don’t want to burden anyone with their problems or questions. If you notice a child needing help with their big feelings, offering time to connect with them may be that little nudge they need from you.  

A few ways you can connect with a sibling of a child with cancer is by:

  • Put them at ease by spending some quality time with them and doing the things they enjoy.
  • Listening to their words and looking for body language and other non-verbal signs. This can also show you how and what they’re feeling.
  • Checking in consistently and building the relationship with them so they’re comfortable with you. This may give them an opportunity to express their feelings more.
  • Give them age-appropriate information about their sibling’s cancer and reassure them their sibling is getting the best care possible.
  • When possible, allowing them to spend quality time with their sibling with cancer can help strengthen their relationship.
  • Drive the sibling to and from extra-curricular activities or provide financial assistance to the family if they can no longer afford it
  • Invite the child (and any of their other siblings) over to play with your children if they are friends
  • Help the child with their homework
  • Play games with them or read them a story before bed
  • Help them continue any family traditions that may be important to them
  • Help prepare healthy meals for school

KiteCrew is a simple phone app that people can use to organise help for a family no matter what they need.

Learn more
  1. Van Dongen-Melman JE, De Groot A, Hählen K, Verhulst FC. Siblings of childhood cancer survivors: how does this “forgotten” group of children adjust after cessation of successful cancer treatment? Eur J Cancer. 1995 Dec;31A(13-14):2277-83. doi: 10.1016/0959-8049(95)00475-0. PMID: 8652256.

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