Quality of life for brain tumour survivors

boy talking to father 

One of the more difficult things to predict after recovery from a brain tumour is how well a child will do in everyday life. Will he still be able to finish high school? Will he be able to live on his own? How difficult will it be for him to find a job? The answers to these questions are not clear. Some researchers have looked at children and adults to study the questions that parents might ask about quality of life, overall mental health, and social skills. These types of research studies have three general goals:

  • to understand the impact of the tumour on a person’s life
  • to be able to predict how a person will do in the future
  • to develop strategies to prevent or deal with problems in individuals who might be at higher risk of having difficulties.

One issue for the long term is that everybody might have different ideas about what makes a life successful. For some parents, it might not matter so much if their child who survived a brain tumour attends college or university. They may be proud if he has accomplished other goals such as living on his own and holding down a part-time job. Other parents may find it difficult to adjust to the fact that their child will not attend university.

In general, researchers have shown that there may be a greater risk of problems in the following situations. Identifying these problems can help experts find ways to help affected children meet their full potential. Problems may be greater for children who have:

  • tumours located in the upper part of the brain (supratentorial tumours)
  • tumours located outside the third ventricle
  • tumours of the hypothalamic/chiasmatic region
  • radiation therapy, especially at a younger age
  • ongoing medical problems such as endocrine conditions
  • vision or hearing problems.

What can be done to help a child after a brain tumour?

Your treatment team is a good source of information. The team includes social workers and psychologists who can help with some of these challenges. They may be able to offer advice or suggest programs and supports in the community.

School is very important to help children learn social skills, so it's important to try and keep your child going to school regularly.

As your child grows, you’ll learn the issues she faces at different stages and what may become barriers to schooling, work and social situations. You can take the lead in seeing what works for your child at each stage.

It can also be helpful to talk to other parents with experience and see what works for them. Consider support groups for children with cancer, special needs, learning disabilities or brain injuries. They can provide ideas to help your child, even if the issues are not exactly the same.

There are also programs or camps for children with special needs or cancer. They provide a supportive social environment, help your child develop their skills and interests and some may offer life skills training programs. ​

David Brownstone, MSW, RSW

Deborah S. Berlin-Romalis, BSW, MSW, RSW

Laura Janzen, PhD, CPsych, ABPP-CN

Heather Young, MSW, RSW

Claire Desouza, BSc, MD, FRCPC

8/7/2009


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