Co-designing Survivorship Care for AYA Cancer Survivors
The Engage AYA Co-design study partners with adolescent and young adult (AYA) cancer survivors and health professionals to co-design an age-appropriate survivorship care program. The program aims to help young people better understand and manage their care, and support them to live healthy and happy lives after cancer treatment is finished.
Watch this brief video to learn more about what the Engage AYA Co-design study involves, how the research study works, and how everybody who takes part is helping create a survivorship model of care that is truly patient-centred and addresses the needs, preferences, and barriers that many young survivors face when trying to access care.
[Health professional] If you were diagnosed with cancer between the ages of 15 and 39, we’d like to learn from your experience. After treatment, many young people can feel unsupported in what comes next.
[Young survivor] Researchers at UNSW Sydney are studying how survivorship care can better meet the real needs of young adults. This study involves just one online or in person group workshop.
[Health professional] Together we’ll design a survivorship care platform based on what has helped and what hasn’t. Each workshop is safe, welcoming and fully voluntary.
[Young survivor] Everything you share is confidential and support is available if you ever feel uncomfortable. If you’re interested in taking part, please contact the team at this email address.
[Health professional] We’ll provide you with more information and organise a time that suites you. We take your privacy seriously. Your information will be stored securely and only be accessed by the research team.
[Young survivor] By getting involved you can help improve survivorship care for young people in the future because everybody’s story counts.
Helping to re-engage AYA cancer survivors into essential, life-long, follow-up care.
Young cancer survivors often face significant long-term physical and mental health problems, as well as social and financial hardship. Yet accessing survivorship care – at the right time and in the right way – can be difficult due to many barriers.
Our team have developed a new program called ‘Engage’, which can be delivered online or over the phone. In this project we will partner with young adults and health providers to develop a survivorship program tailored to young survivors’ needs. The program aims to promote health equity by improving access to comprehensive survivorship care, empowering survivors to live healthy lives in the long-term after cancer treatment.
What does this study aim to achieve?
The study aims to:
- Identify key survivorship needs of AYA cancer survivors, and what survivorship care model best addresses these needs.
- Identify the changes to existing care pathways which are required to successfully integrate a new AYA survivorship model of care.
We are also interested in developing a targeted implementation science informed strategy package and outcomes framework to facilitate program implementation and evaluation across clinical settings.
Would you like to be involved?
This study is currently recruiting people who meet the following criteria:
- currently over 18 years of age;
- previously diagnosed with initial cancer diagnosis between the ages of 15 and 39 years;
- completed all treatment within the past 10 years;
- able to speak English proficiently
What does participation involve?
- You will be asked to complete a screening questionnaire (which will take approximately 2-3 minutes) to determine eligibility.
- Participate in one 45-60 minute Co-design workshop either online (e.g., via Zoom or Teams) or in-person, depending on your preference. Sessions will be held with up to 5-7 other adolescent and young adult survivors of cancer at a time suitable for you.
To participate in this study, please:
To learn more about the study and check your eligibility, please complete our short screening survey via this secure REDCap link:
For more information, please contact the study co-ordinator:
Dr Christina Signorelli
Email: engage@unsw.edu.au
This study is funded by Australia Brain Cancer Mission (Medical Research Future Fund) and supported by the Australian and New Zealand Children's Haematology/Oncology Group.
The Engage AYA Co-design study includes investigators and collaborators from a wide variety of Australian institutions, including:
- The Sydney Children's Hospital Network (SCHN)
- Cancer Council NSW
- Clinical Oncology Society of Australia
- Canteen
- Central Eastern Sydney Primary Health Network (CESPHN)
- Australia and New Zealand Children’s Haematology/Oncology Group (ANZCHOG)
- The Kids' Cancer Project
- Youth Cancer Service (YCS)
- Cancer Institute NSW
- Redkite
