Australia is lagging behind the US and Europe in providing consistent services to help childhood cancer survivors successfully reintegrate into their schools, UNSW cancer specialists and psychologists say.
“This is an issue that society is blind to, and it’s not just cancer but other chronic illnesses of childhood where the kids are spending significant time in hospital,” says Professor Glenn Marshall, Head of Translational Research at Children’s Cancer Institute UNSW, and a senior oncologist in the Kids Cancer Centre at the Sydney Children’s Hospital.
“When they get better, these kids want to go back to the same classes with their mates. But because of missed school due to the illness we often see them struggle with work and fall behind, which can cause them to act out and develop low self-esteem which follows them for the rest of their scholastic career.”
Fixing the problem will require government funding and better systems of communication between healthcare systems and education departments, Professor Marshall says.
“In an ideal world, we would like to see each child have an individualised learning plan that accommodates them for the duration of their time away from the classroom.”
Professor Marshall is the senior author of a report recently published in the Journal of Paediatrics and Child Health, which compares Australia’s lagging system to the best practices used in Europe and the US.
It suggests teachers in Australia are uncertain about their role in supporting students with chronic illnesses; schools inconsistently provide learning support for home and hospital study; and current communication frameworks between hospitals, parents and schools are inadequate.
The paper makes four recommendations: improve the implementation policies around current legislation; establish better hospital-to-school communication structures; improve teacher knowledge of the educational implications of childhood cancers; and provide nationwide homebound learning support.
“We hope this paper will be used as a tool to negotiate a better position for these kids within the education system,” Professor Marshall says.
The need for improvement is clear
Each year, 500-600 school-aged children are diagnosed with cancer in Australia. While cure rates are now higher than 80%, the educational impacts of childhood cancer are still significant and diverse.
They include missing time from school for treatment (up to two years in some cases) and also side-effects such as poor concentration and attention, fatigue, social isolation, and mobility difficulties.
When children return to school, they require targeted support services to prevent longer-term consequences, such as failing grades, deteriorating mental health, and/or dropping out of school.
These services are particularly important for facilitating communication between the hospital, home and school, and help keep teachers informed about the child’s condition, their progress, and any special educational needs they might have.
But UNSW experts say the communication needs to begin earlier, with statutory guidelines at the federal level.
“At the moment, there’s no clear understanding about whose responsibility this is: the healthcare system or the education system,” says Barb Donnan, an educational psychologist at UNSW Medicine and previously with Ronald McDonald House Charities.
“Once a child is diagnosed, the school steps back and they leave the student and family alone because they are dealing with an illness. It’s almost like they’re forgotten sometimes.”