Support Tools: Supporting Youth When a Loved One is Impacted by a Brain Tumour

Supporting children and teenagers when a loved one is ill or has died from a brain tumour is a challenging task for adults during a difficult, trying time.

Helping children and teens to understand and grieve – when you are also grieving – often leads family members, friends and caregivers to feel overwhelmed and helpless. Despite these feelings, it is possible and appropriate to help!

When a loved one is ill or dying, it is normal to wish we could “fix” the situation or protect the children from suffering. However, by talking with them frequently and including them in the experience of the brain tumour journey, we are better able to support kids in their struggle to live with and make sense of what is happening. The following ideas may help with establishing a framework for such discussions1:

Be honest when providing information and answering questions
Kids often sense when they are not being told the truth. As a result, they may become anxious and make up inaccurate explanations about the illness.

Use the words dying, died, and dead
Children are very literal. Avoid confusing phrases like “passed away” and “gone to a better place” or referring to death as being “like sleep”. To kids, these do not mean the same thing as “the person has died”; furthermore, they may begin to fear falling asleep because they think it might lead to death. Explain that when someone dies their whole body stops working: they stop breathing, the heart stops beating and the brain no longer functions – which means the body can no longer think, hear, see, smell, taste, or feel.

Ask if they are worrying or wondering about anything, check in often
Even when things are hard to talk about and may be upsetting for you or the child, it is helpful to bring them to light. Kids may repeat the same questions when they are trying to make sense of something complex. Be patient. Ask often if what you told them makes sense, or if they want it explained again in a different way.

Be attentive to their reactions
Identify the reaction you are seeing in the child or teen. Ask them to tell you what made them respond that way. Some children may not be able to explain the reasons for their reactions, but it is important to show them you are being attentive to what is happening to them.

Do not be afraid to say “I don’t know”
Ensure children and teens that you will ask someone who might know the answer (e.g. doctor or family member). Discuss with them that some things in life (and the afterlife) cannot be explained and inform them that it can help to talk to others about any mysteries that they have been wondering about.

Show them you are there for support
Explain that it is normal to feel a range of emotions and that it is important to share them. Kids feel stronger knowing they can share their thoughts, questions, and concerns with loving and supportive adults. Emphasize that there are no wrong or bad feelings, and that they do not have to “be strong” or “hold it together”. Encourage healthy ways for kids to be expressive of their feelings such as through sports, art, crafts, music, dancing, writing, or talking to a confidant.

Ask them to describe what they know about the situation
When using medical terms like “brain tumour” or “cancer” ask kids what they think those words mean. Clarify any misunderstandings, describing the illness and how it works through the use of clear, concrete language. For example, try describing cancer as a group of cells that do not do their job, can grow quickly, and like to travel to other parts of the body.

Identify the illness/condition by name
Avoiding words like “cancer” and “tumour” and replacing them with euphemisms like “sick” or “bump” is confusing for children. This can create worry that the next time someone else gets “sick” – including themselves – they could die from it. Children need to understand that cancer or a brain tumour is different than having a cold or getting a bump on the head from a fall.

Reassure them the brain tumour is not contagious
Through helping kids understand how the illness works they are reassured that this is true.

Emphasize that the brain tumour is not anyone’s fault
Often kids feel responsible for what is happening around them. Sometimes they believe they accidently wished or caused the illness, that they made it worse or that it is a punishment for something they did. It is extremely important to assure them that there is nothing they could have done to cause, avoid, worsen or cure it.

Talk about ways they can help the ill or dying person
Explain the treatments that have been tried and how we know that the treatments are not going to cure the brain tumour. Reassure them that the dying person has done everything possible to stay alive and remain with them. Share with kids that there are medicines that can help with the symptoms. If their loved one is receiving palliative care, explain that the doctors are focusing on helping them “feel” better, rather than “get” better. It is valuable to find ways for children and teens to be involved in the care of the dying person, in order to alleviate feelings of helplessness that can emerge in the face of a situation that they cannot change. Emphasize that spending time with the person, doing familiar activities, expressing their feelings, and making things for them are all very meaningful ways of offering care and support.

Families tend to do best if they communicate openly and involve children and teens in the loved one’s experience with an illness. The information that is shared with children and teens needs to be appropriate for their age and stage of development. Often kids want to know specific details, ask questions, and know what to expect at home and in their daily routines as a result of the brain tumour. In most cases, children and teens can cope through a family illness without experiencing serious problems if their basic needs are met, regular routines are maintained, and they have support from family, friends and the community2.

We hope these suggestions will give you the confidence to start the talk with your young ones today.

 

References:

(2012) The Max and Beatrice Wolfe Children’s Centre www.tlcpc.org

2 (2013) Canadian Association of Psychosocial Oncology www.capo.ca/start-the-talk

 

For more information about support on the journey with a brain tumour, please contact us:

Cheryl Bauer
Support Services Specialist
cbauer@braintumour.ca
1-800-265-5106/ 519-642-7755 ext. 400

Todd Goold
Support Services Specialist
tgoold@braintumour.ca
1-800-265-5106/ 519-642-7755 ext. 237

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