Survival rates for childhood cancer now exceed 80% – but this also means more children are living with the long-term emotional and psychosocial impacts of cancer.
Flinders University PhD student Alyssa Ebert is examining the psychological problems facing young people through cancer survivorship and working to provide more focused help.
“Cancer disrupts a child’s sense of identity, social belonging and normal development,” says Ms Ebert. “Younger children lean on physical closeness and routine for security, while adolescents often try to shield parents from their own distress.”
She is part of research team at Flinders LiveWell Cancer Research Centre that reviewed 31 studies spanning diagnosis, treatment and survivorship to examine the psychosocial experiences of children and adolescents up to 19 years with cancer.
The review found six consistent psychosocial domains that shape young people’s experience of cancer: family, relationships, psychosocial care, emotions, control and information needs. How these aspects emerge tends to shift as children move through diagnosis, treatment and survivorship.
The findings point to a need for psychosocial support tailored to a child’s developmental stage and is then delivered consistently across the whole cancer journey – not just at diagnosis.
Ms Ebert says this points to a clear window for prehabilitation: intervening before, or right at the start of treatment, to proactively build coping, resilience and information-readiness, rather than only responding to distress once it emerges.
“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.”
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.
This review underpins Ms Ebert’s PhD research at Flinders, supervised by Professor Catherine Paterson (a Professor of Cancer Nursing and Co-Director of Flinders LiveWell Research Centre), which aims to co-design a psychosocial prehabilitation program for adolescents with cancer, translating these synthesised needs into a practical, developmentally tailored intervention. It moves beyond treating the disease, to also provide the best possible support for a child going through their cancer journey.
Alyssa’s PhD 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.”
The new review – “Navigating the Psychosocial Journey: A Meta-Ethnographic Review of the Psychosocial Needs and Experiences of Children and Adolescents (0-19 Years) Diagnosed with Cancer Across the Care Continuum”, by Alyssa Ebert, Carolyn Ee, Oluwaseyifunmi Andi Agbejule, Michael Osborn, Murray Turner and Catherine Paterson – has been published in Psycho-Oncology journal. https://doi.org/10.1002/pon.
