Professor Susan Sawyer1
Professor David Dunt1
Associate Professor David Thomas2
Dr Sarah Drew1
Ms Kate Thompson2
Ms Maria McCarthy3
Dr Wayne Nicholls4
Ms Sharon Bowering5
Dr Pandora Patterson6
1 University of Melbourne
2 Peter MacCallum Cancer Centre
3 Children's Cancer Centre, Royal Children's Hospital, Melbourne
4 Royal Children's Hospital, Brisbane QLD
5 Women’s and Children’s Hospital, Adelaide SA
7 Teenage Cancer Trust, St James's University Hospital Leeds United Kingdom
$224,695 (Total funding $449,390)
Cancer Australia and CanTeen
Priority-driven Collaborative Cancer Research Scheme (PdCCRS)
Project completion year
The study had four main aims:
- Extend the currently limited empirical knowledge about the nature of adolescent and young adult (AYA) experiences with cancer and its treatment, and the specifics of associated psychosocial support and informational needs.
- Assess nationally the extent to which AYA cancer patients report receiving adequate psychosocial support and informational resources from the clinical oncology services that they currently attend for care.
- Establish an instrument and baseline data which could be utilized in future evaluation studies to assess levels of progress made Australia-wide in the clinical care of AYA with cancer.
- Develop an evidence-based program logic model for AYA psychosocial cancer services in consultation with a range of stakeholders.
This research has resulted in a better understanding of the psychosocial issues, support and informational needs of AYAs with cancer and their carers. This information has the capacity to significantly inform AYA cancer service reform. The Chief Investigator proposed to achieve this through research publications and clinical practice dissemination. The following were key findings:
- Parents are highly involved as carers, advocates and companions for their AYA children, and need to be considered in any AYA model of care.
- Large numbers of AYAs and parent carers experience financial difficulties and need government income support during treatment. For a large portion of AYAs and for some parent carers, challenges with capacity to work and earn income remain after treatment is completed. Both AYAs and parent carers report difficulties accessing government income support via Centrelink. Youth-friendly care should include greater emphasis on AYA financial support, as well as greater support to re-engage with the workforce after treatment in order to ensure AYA cancer survivors do not fall into a financial underclass either in the short or longer term.
- Significant levels of emotional distress and post-traumatic stress symptoms were found in both AYAs and parents. AYAs in particular are slow to seek emotional/mental health support. This points to the need for universal assessments and offering of support services to both AYA and carers.
- Both AYA and parent carers report more unmet psychosocial and supportive care needs after treatment is completed rather than while being on treatment. Parent carers report more unmet psychosocial and supportive care needs for themselves than do AYA.
- There is room for major improvement in health care environments and around interactions with health care practitioners to ensure they are appropriately meeting young people’s needs.
- Although fertility preservation conversations occurred frequently in this sample, AYAs reported making decisions about what procedures to undertake that were influenced by a range of non-health factors, such as financial costs. This pointed to the need for additional support and guidance during decision-making processes and to ensuring there is equity of access to resources.