Managing fatigue in children living with the effects of a brain tumour 

Fast facts

• Title: Validating a structured fatigue intervention and exploring the impact on quality of life for paediatric brain tumour survivors
• Lead researchers: Ms Vicky King and Ms Sharon Tuppeny
• Where: Cambridge University Hospitals NHS Foundation Trust
• When: Jun 2025 – Nov 2026
• Cost: We will fund £78,150 over 18 months
• Research type: Paediatric, Quality of Life, CNS tumours, Clinical
• Award type: Quality of Life

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Fatigue is one of the most common challenges for children living with the long-term effects of a brain tumour. This fatigue can make life significantly more difficult, impacting their ability to concentrate and participate in school, maintain friendships, and plan for future careers. Because it’s an invisible symptom, it can be difficult for people to understand. This can lead to a lack of appropriate support from teachers and peers. Despite the profound impact fatigue can have on quality of life, there is currently no established way to manage fatigue in these children. Research into fatigue following childhood brain tumours remains limited, leaving many families to navigate this complex issue without clear guidance or resources.

In this project, occupational therapists Vicky King and Sharon Tuppeny aim to test whether a type of therapy is suitable for managing fatigue in children living with the effects of a brain tumour. 

What is it?

This research, based in Cambridge, will explore SpoonieKids – a type of therapy that is based on Spoon Theory. This is a method that helps people manage fatigue by visualising their energy as a set number of ‘spoons’ each day. Every activity uses up a spoon, or several spoons. This can include things like getting dressed to going to school. For children experiencing fatigue, managing how and when they use their spoons is key to avoiding exhaustion.

Therapists have already started to use Spooniekids with children who have brain tumours, and other types of acquired brain injury. But we need research to confirm how effective and practical it is. We also need to know how well it is accepted by children, their families and clinical staff.

This project aims to test whether SpoonieKids is a good tool for managing fatigue in childhood brain tumour survivors by trialling it with a small group of 20 children.

Why it’s important

Research into improving quality of life for people affected by brain tumours is incredibly important, and everyone should feel supported beyond their diagnosis and treatment. Fatigue is one of the most common and persistent challenges faced by children living with the effects of a brain tumour, often continuing long after treatment has ended. Improving our knowledge in this area can lead to better tools for families to both understand and help their child manage their fatigue day-to-day.