Building Better Support for Young People Living with and Beyond Brain Tumours

Research in York, near where Oscar used to live, explores the psychosocial effects of brain tumours on young people

Building better support

Every year in the UK, around 450 children are diagnosed with a brain tumour. Advances in treatment and care mean that more young people are now surviving than ever before. However, for many young people and families, the impact of a brain tumour extends far beyond treatment itself.

For many children, teenagers, and young adults affected by paediatric brain tumours, life after diagnosis can bring lasting emotional, psychological, and social challenges. Difficulties with confidence, friendships and relationships, education, mental health, and adjusting to everyday life can continue long after treatment ends, yet many young people tell us that they feel unheard and unsupported.

That’s why a research project at the University of York, funded by OSCAR’s Paediatric Brain Tumour Charity, is aiming to better understand the lived experiences of young people affected by paediatric brain tumours, directly from the young people themselves.

“Brain tumours affect more than just the physical, and effects reach far beyond treatment and hospital visits…”

Listening to Young Voices

The study, led by Dr Nicola O’Donnell at the University of York, will explore the psychosocial experiences of young people currently aged 13–29 who are living with or are survivors of paediatric brain tumours diagnosed under the age of 18. While much previous research has often focused on medical outcomes or the experiences of parents and carers, this project places young people’s own voices at the centre of the research.

Workshops

Through a series of creative workshops, participants will have the opportunity to share their experiences in safe, supportive spaces alongside peers who can relate to what they’ve been through. As well as contributing valuable insights to the research, these sessions can be therapeutic in their own right, with many young people saying it is the first time they have met someone else affected by a brain tumour.

Questions

The workshops explore important questions such as:

What psychological and social challenges do young people face after a brain tumour diagnosis?

How does treatment affect friendships, confidence, identity, and mental wellbeing?

What kinds of psychosocial support feel genuinely helpful?

What is currently missing from services and support systems?

The research team will use these insights to help co-design future support resources and interventions that are shaped by real lived experience. At the time of writing, the first focus group has taken place, bringing together four teenagers to share their experiences.

“The charity supporting research right here in the city Oscar lived in, a short walk from where he played tennis, where we did our first ever fundraising event, all to make a difference to young people like him

…it feels pretty special.”

Co-Designing Better Support

A key part of the project is the use of a collaborative research approach called Experience-Based Co-Design (EBCD). Rather than researchers deciding what support young people need, young people will work alongside the research team to help shape future ideas and solutions together. Creative activities such as storytelling and idea-building workshops will allow young people to express what matters most to them.

Importantly, the project recognises that each individual’s experience is different. Young people with different tumour types, backgrounds, and life experiences will all bring valuable perspectives to the study.

Why This Research Matters

Young people living with and beyond cancer often face significant gaps in access to appropriate psychological and emotional support. This research aims to better understand those experiences and help inform support that feels more relevant, accessible, and responsive to young people’s psychosocial needs.

By understanding what young people want and need, the project hopes to lay the foundations for future evidence-based support programmes that can eventually be used across the NHS and beyond.

Most importantly, this work reminds us that survivorship is about more than just treatment success, it is about quality of life, emotional wellbeing, identity, connection, and feeling supported into the future.

Raising Awareness Through Animation

One exciting outcome of the project will be the development of an animated video co-created with young people affected by brain tumours.

The animation will help raise awareness of the hidden emotional and social impact of paediatric brain tumours and survivorship, helping families, healthcare professionals, schools, charities, and the wider public better understand these experiences.

By sharing these stories in an accessible and engaging way, the project hopes to shine a light on the long-term realities faced by many young people living with and beyond brain tumours.

Want to Take Part?

Recruitment for this study is still underway. The research team is seeking young people currently aged 13–29 who are living with or have survived a paediatric brain tumour, diagnosed before the age of 18, to take part in focus groups.

Taking part offers an opportunity for participants to share their stories, connect with others, and help shape the future of support for young people affected by brain tumours.

If you’re interested in finding out more, please contact Dr Nicola O’Donnell at the University of York via nicola.odonnell@york.ac.uk.