How can I support siblings of children diagnosed with leukaemia?

In this article, our Nurse Advisor, Fiona is talking about how parents can support the siblings of a child with blood cancer.

When a child is diagnosed with cancer it affects the whole family. The diagnosis and treatment of childhood cancer places considerable demands on family life. Brothers and sisters of a child with cancer may experience a wide range of emotions. By recognising and understanding these feelings, you can help children to cope with the stress and emotions that a cancer diagnosis of a sibling brings.

Siblings may feel guilty, angry, frustrated, sad or fearful. Children can feel guilty about the illness and they may also feel guilty for being healthy. Young children may fear they have caused the cancer somehow or that they might catch it. Others worry about what will happen to the family because of the cancer, or they may fear that their brother or sister may die. Brothers and sisters of children with cancer can be very scared and may have frightening thoughts about what is happening in the hospital. Children will often be reassured by visiting their sibling in hospital and seeing how and where they are.

Giving children age-specific, realistic and accurate information about their sibling’s diagnosis and treatment can help to alleviate their fears. This can also prepare children for the physical changes their sibling may experience, for example: hair loss, fatigue or weight loss. Talking about appearance changes ahead of time will help to reduce the fear when these changes happen. Don’t be afraid to use the word ‘cancer’.

Children often don’t know how to talk about their feelings, so they express them through actions. Every child is different, but common and normal responses from healthy siblings can include:

  • Misbehaving or acting out in negative, attention seeking ways at home or school
  • Increased anxiety, such as not wanting to leave their parents or go to school
  • Withdrawing from the family or wanting to be alone
  • Acting younger, such as an older child using baby language and behaviour
  • Demanding or entitled behaviours
  • Having physical symptoms such as headaches, stomach aches or bed wetting
  • Having trouble sleeping or bad dreams
  • Being moody or irritable, including temper tantrums, fighting with parents or siblings, or crying a lot
  • Performing worse in school or having a hard time focusing on home work
  • Doing extra good deeds to try and take care of the rest of the family.

Encouraging questions and providing frequent updates can help to make siblings feel less anxious and help to maintain an honest and trusting relationship. Answer questions as accurately and honestly as possible. Let children know that you understand this is a hard time for them too and that all feelings are acceptable. Reassure them that their feelings – whatever they may be – are normal and okay. It can be useful to help them express themselves through writing in a journal, artwork or play.

Parents often need to spend a lot of time in hospital with their sick child and therefore their other children may need to be cared for by family members or friends. They may have a lot of time away from their parents and their daily routines may keep changing. This can be very upsetting and unsettling for children and, on top of worrying about their brother or sister’s health, they may also feel resentful and jealous of all the attention they are getting; they may feel left out and angry.

The needs of brothers and sisters can sometimes be overlooked, particularly in the early months of diagnosis. If a parent can find even a short amount of ‘special time’ with the brother or sister, this will help them feel more important. Telling siblings that their parents love and miss them will give comfort and reassurance. Try to maintain normalcy whenever it is possible. Routine gives children a sense of security and helps them cope with stressful situations.

Siblings may also experience problems at school. Many siblings may keep their feelings bottled up inside to avoid worrying their parents. Often the place where siblings may show their feelings is at school. They may become withdrawn and very quiet or become disruptive in the classroom. Problems at school may stem from other children teasing or bullying them or leaving them out. Staff at school need to know what is happening at home so appropriate support can be given. Teachers and classroom peers can be a valuable source of support, and teachers will understand that feelings may be expressed through behaviour at school once they are aware of the stresses facing the family. Nurses from the hospital will often be able to go and visit the child’s school to help teachers and pupils to understand about the illness and the treatment.

When a child is diagnosed with cancer, family dynamics will change. These changes can be extra hard for siblings. Understanding their viewpoint, and all of the emotions that go with it, makes it easier to meet their needs. And while there may be challenges, at the same time, many children respond to a sibling with cancer with enormous love, care and support. Parents often see other positive changes in siblings of a child with cancer, including more empathy and compassion, greater self-esteem, closer relationships with siblings and parents, and greater insight into the things that really matter.

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