We were commissioned by the National Cancer Survivorship Initiative, and funded by the Department of Health, to find out how cancer and its treatment impacts the lives of children living with and beyond cancer, and their families.
How we created the report
Ninety children took part in the study in total. 49 of those came to an activity afternoon and told us what they thought in person and 41 completed a children's postal activity pack (like a work book) at home.
What did the children say?
They told us that they needed more support and advice to help them maintain a healthy lifestyle during and after treatment, and to keep up with school and their friends.
“I missed the first three years of school because of my cancer. The cancer has damaged how I think so I get things wrong at school. It’s like I banged my head and it didn’t get better for three years and I can’t think very well, that’s what it’s like.”
- Alice, age seven, on treatment for leukaemia.
“I can’t forget about it and I think about it every day. Sometimes I start to cry if I really think about it.”
- Stacey, age 12, two years post-treatment for leukaemia.
“People like your family don’t treat you the same. Like sometimes they wrap you in cotton wool.”
- Sally, age 11, nine years post-treatment for medulloblastoma.
“I want more help to catch up with other children in our class. I used to find school easy but now I have had cancer I find it very tricky.”
- Eleanor, age eight, two years post-treatment for meastatic medulloblastoma.
What happened next?
After listening to the children who took part in the study, we published our report, The Impact of Cancer on a Child’s World which recommends that children and their families are assigned a key worker to coordinate their clinical, emotional, social and practical care. That way they should be able to spend more time at home and can be supported to lead as ‘normal’ a life as possible.
We will be using this report to talk to Government, MPs, the media and other organisations to make them aware of the issues raised by children who took part in the study and ask them to support changes in policy which will improve the quality of life for children and their families.
The report is in two versions which can be downloaded from the right-hand side of this page. One is the full version of the report, which is written for adults and includes a summary and information on key findings and one is a booklet aimed at children, which is a summary of the report findings in a child-friendly format.
For more information, please email Rebecca Horder at firstname.lastname@example.org.