Creating Visualisations To Help Child Cancer Patients

When a child receives a cancer diagnosis, information about treatment can be confusing and overwhelming – that’s where Dr Annie Jones steps in.

The University of Auckland Research Fellow from the Department of Psychological Medicine and Centre for Cancer Research is developing a visualisation tool to help young people with cancer who are undergoing radiotherapy.

This is likely to be an animated video, which will convey information in a simple way.

“We know that when people can see what’s going on inside their body, it really helps them to understand the treatment and can make them feel less stress and anxiety about what’s going on.

“Stress can affect the way our body responds to treatment. If we can reduce people’s anxiety, that should have positive benefits for their physical recovery as well,” says Dr Jones.

The visualisation will provide clear information for children and their families and friends about how radiotherapy works, making it clear that it’s normal to feel worried and offering coping strategies.

Dr Jones is mentored by AUT Associate Professor Liesje Donkin and Associate Professor Anna Serlachius at the University of Auckland. Associate Professor Donkin’s 8-year-old son was diagnosed with brain cancer, and her first-hand experience sparked the idea for the project.

“Liesje talked about how few tangible resources they had while going through radiotherapy and how valuable it would be to develop something for this group.

“It makes the project very meaningful, because it’s acknowledging that kind of patient and whanau need.”

The Auckland Medical Research Foundation granted Dr Jones a Postdoctoral Fellowship of more than $279,000 for her to complete the project, while the University of Auckland School of Medicine has pitched in an extra $8590.

Over the next year, Dr Jones will hold workshops to gather ideas to co-design the visualisation tool with people aged 16 and over who have experience of undergoing radiotherapy for childhood cancer, families of children with cancer and health professionals.

“We want to make sure we develop something that will meet people’s needs and that health care providers can easily use in routine care,” she says.

The workshops will guide the type of visualisation that will be developed. Then Dr Jones will create a storyboard for professional animators or provide a brief for designers.

In the second year of the project, Dr Jones will run a pilot programme at Starship Hospital testing the visualisation on about 20 children aged 10 to 15, who are about to start radiotherapy for cancer.

The research team will assess how the visualisation affects young people’s understanding and perceptions of radiotherapy, and whether it reduces their anxiety.

Health professionals will also offer their views on using the visualisation with patients.

“I hope this pilot feasibility study will inform a national trial, so the visualisation can be rolled out across childhood cancer services,” she says.

Dr Jones made her first foray into health visualisations as a master’s student and was astounded by patients’ responses.

“I was showing an animated intervention for patients with heart disease that explained what happens when you have a heart attack and how statin medicines work.

“One woman said, ‘if I had seen this earlier, I would have taken the statins and probably wouldn’t have had a heart attack’. That’s always stuck with me.”

Dr Jones’ PhD research in 2018 involved using a 3D-printed model of a human body to demonstrate the way medication controls viral loads in people with HIV.

“Seeing the 10-minute demonstration explaining how the treatment worked resulted in better treatment adherence eight months later.

“I realised a visualisation can be powerful enough to change people’s behaviour,” says the 33-year-old.

One in every 285 tamariki develops cancer and about 150 children are diagnosed with cancer every year in Aotearoa.

While Dr Jones’ current research focuses on helping children undergoing radiotherapy for cancer, she plans to adapt her visualisation for children undergoing other treatments, such as chemotherapy. A similar visualisation tool could also be created to provide accessible information for adults undergoing cancer treatment, she says.

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