AYA Awareness Month: advancing research for Adolescents and Young Adults with cancer
April marks AYA Awareness Month, a time to highlight the unique challenges faced by adolescents and young adults (AYA) living with cancer. We are very proud to be funding vital research into the Psychosocial Needs of Adolescents and Young Adults with Cancer across the island of Ireland, and we recently caught up with PhD student, Aileen O’Dwyer to see how the current stage of her research project is going.
Understanding the Impact of an Adolescent Cancer Diagnosis
Aileen’s research focuses on the lived experiences of adolescents and young adults with cancer and aims to:
- Improve long-term support for AYA patients and families
- Inform future research and healthcare strategies
- Strengthen collaboration across the island of Ireland
Through in-depth interviews, the first stage of this All-Ireland project captured powerful personal stories from AYA patients and identified areas for support and improved outcomes in the following key areas:
- Friendships and social life
- Education and career pathways
- Mental health and emotional wellbeing
- Family relationships
These insights are essential for informing better support systems and ensuring that services reflect real-life needs.
Supporting AYA: Insights from Healthcare Professionals
The second phase of the research shifted focus to those working directly with AYA patients. Healthcare and support professionals from across Ireland – including consultants, clinical nurse specialists, allied health professionals, and youth workers – shared their experiences of caring for adolescents and young adults with cancer.
Key findings revealed:
- A strong desire among professionals to improve their skills in supporting AYA patients
- Challenges in communication and engagement with adolescents and young people
- A need for specialised training tailored to the AYA population
This feedback is particularly valuable for cancer charities in both Northern Ireland and the ROI as well as healthcare providers aiming to enhance services for young people navigating cancer care.
Co-Producing Better Support: The AYA Co-Create Collective
The final stage of this All-Ireland project has focused on collaboration. Adolescents, young adults, caregivers, and professionals came together to co-produce recommendations for improving services for adolescents and young adults with cancer.
This collaborative group, now known as the AYA Co-Create Collective, identified key priority areas including:
- Financial support for young patients and families
- Fertility information and services
- Educational and career support
- Training and development for healthcare professionals
The Critical Role of Cancer Charities in Northern Ireland
Aileen’s research has highlighted the critical contribution of cancer charities in both Northern Ireland and ROI in supporting AYA patients. From funding innovative research to providing frontline services, charities are playing a vital role in:
- Raising awareness of AYA cancer needs
- Delivering emotional and practical support
- Driving improvements in care and policy
Presenting Research and driving change
Over the past year, Aileen has shared her research findings at conferences across the UK and Ireland, helping to amplify the voices of those affected by an adolescent and young adult cancer diagnosis. Most recently she attended the 2026 CCLG Conference in Manchester where she highlighted the critical role healthcare professionals play in the following areas:
- Guiding adolescents and young adults through complex care pathways
- Connecting patients with appropriate support services
- Improving communication during and after treatment
Aileen’s Lived Experience: A Driving Force Behind the Research
Throughout her research, Aileen remains first and foremost the parent of an AYA who was previously diagnosed with cancer. This was the driving force behind her research and gives her a unique perspective and ability to fully understand the new challenges and anxieties that come along with a cancer diagnosis.
“Understanding my daughter’s and our own family’s experience has really helped me in understanding many of the perspectives of AYA and caregiveaer stop learning from all of them. Every person’s experience and circumstances are so unique, and I am in awe of the amazing resilience of those whose lives have been impacted by cancer at a young age.”
A final word from Aileen and a look ahead
This PhD research represents a significant step forward in understanding and supporting adolescents and young adults with cancer. To date, the research has shown that:
- Support needs can continue long after treatment ends
- Accessing help at any stage is essential and encouraged
Aileen shares:
“Without people willing to take part in the studies over the last two years, it would have been impossible to share their experiences and look more in depth at what is needed to be put in place. “There have been so many amazing people I have come across, and while the PhD can be a difficult journey in its own right, it has been the people I have met when working on it, that have kept my continued motivation and drive in place to keep me going in the final push!”
By combining lived experience, professional insight, and cross-border collaboration, this All-Ireland project is helping to shape a better future for young people facing an adolescent and teenage cancer diagnosis.
