Psychological problems facing young people through cancer survivorship have not attracted enough specific attention – but Flinders University PhD student Alyssa Ebert is working to find a solution to provide more focused help.

Alyssa’s PhD thesis, supervised by Professor Catherine Paterson (a Professor of Cancer Nursing at Flinders), is exploring how young people can be better prepared psychologically for cancer – beyond treating the disease, to also provide the best possible support for a child going through their cancer journey.

“When a child is diagnosed with cancer, everything moves very quickly. Treatment plans begin, hospital visits become routine and families are suddenly navigating a world they never expected to enter,” says Ms Ebert.

“While healthcare teams do an incredible job preparing children for the physical side of treatment – what a scan will feel like, how chemotherapy works, what to expect during procedures – there is far less structured preparation for the emotional and psychological journey that follows.”

Survival rates for childhood cancer now exceed 80% – but the associated challenge with this pleasing development is that more children are living with the long-term emotional and psychosocial impacts of cancer.

Children and teenagers diagnosed with cancer often face great fear, uncertainty, loss of control, time away from school and separation from their friends – and this is not just at diagnosis, but across treatment and into survivorship.

Alyssa’s research has included qualitative studies to explore how children describe their cancer experience in their own words. “Young people spoke about wanting more control and understanding, feeling isolated from their peers, struggling with their changed identity and ‘feeling different’, along with a burden of trying to protect their parents emotionally. They even talked about carrying fear long after treatment ends.

“A key insight from this work is that children aren’t just ‘small adults’. They have very specific developmental needs that shape how they understand and cope with cancer. For example, younger children may think very literally and worry that they caused their illness, relying heavily on parents for emotional regulation.”

Teenagers, however, are simultaneously navigating personal issues regarding their identity, independence, friendships, and body image – and the introduction of a cancer diagnosis into this mix can severely disrupt their sense of self and belonging in entirely different ways.

“Despite all this going on in a teenager’s mind, psychosocial support is often delivered using a one-size-fits-all approach, rather than being tailored to their appropriate developmental stage. This research highlights why developmentally-aligned psychosocial care is so important.”

Alyssa hopes her research will help to create a “psychosocial pre-habilitation intervention”, which she describes as structured emotional and psychological preparation that can be delivered early in a young person’s cancer journey.

“Think of it in the same way that patients are physically prepared before major surgery – however, this assistance is focused on coping, resilience and emotional wellbeing.”

Young people have been central to co-designing Alyssa’s research – “not just as participants, but as active partners helping to shape what psychosocial support for young people with cancer should look like.”

“Together, we are creating and refining a prototype psychosocial support program. This has been shaped directly by their lived experience, ideas and feedback. It ensures the intervention is not only evidence-based, but youth-designed, age-appropriate and meaningful in real clinical settings.”

This research involves real-world care provided by a broad network of healthcare professionals, including oncologists, nurses, psychologists, social workers, radiation therapists and allied health teams working in paediatric cancer care.

It examines how support is currently delivered across diagnosis, treatment and survivorship, and explores whether interventions align with children’s developmental needs.

While this research is being conducted in Australia, the need for structured psychosocial preparation in paediatric cancer care is global.

“Healthcare systems worldwide are dealing with rising survival rates and growing survivorship populations,” says Alyssa. “This means there must be increased recognition of mental health impacts to benefit not only children and adolescents diagnosed with cancer, but also survivors adjusting after treatment, parents and families – all the way through to oncology healthcare teams and hospitals designing supportive care services.”

Alyssa believes the intervention framework being developed through her PhD could be adapted across paediatric oncology services nationally and internationally, helping inform best-practice supportive care worldwide.