Quality of life award
Living longer, living better: improving quality of life for children and young people with a brain tumour
Despite survival rates for children reaching 75%, diagnosis and treatment of a brain tumour during childhood has a lasting impact on quality of life and can create unique problems for children and young people.
This award will promote the development of multidisciplinary collaborations to design interventions to improve quality of life for children and young adults (up to 25 years old) living with a brain tumour, with funding available to support the most promising projects.
Key Dates
- Call for applications opens: 30 May
- Deadline for applications: 31 July
- Applicants notified of outcome: Mid-September
We will work with our SAB and experienced workshop facilitators to identify 30-40 applicants to take part in the sandpit event. Please see the Assessment Criteria below.
If your application is successful, attendance at the residential sandpit event and the online sessions is mandatory.
The dates for the online sessions will be confirmed in due course but the provisional timetable is as follows:
- Online orientation session: 24 October
- Sandpit event: 11-12 November at Level39, Canary Wharf
- Feedback session: 28 November
- Presentation session: 10 – 11 December
Challenges faced by children and young people affected by brain tumours
A brain tumour diagnosis in children and young adults can lead to a variety of ongoing physical, psychological, and social challenges. The impact varies based on the tumour’s location, the person’s age at diagnosis, and the treatment received.
Physical impacts
- Balance changes
- Muscle weakness
- Vision or hearing loss
- Seizures
- Fatigue
Cognitive impairments
- Attention difficulties
- Memory issues
- Problem-solving challenges
Emotional and social effects
- Anxiety and depression are common, with 92% of young patients reporting emotional effects.
- 90% of young people diagnosed with a brain tumour have had their education disrupted, needing time off for treatment, which affects both their social life and psychological well-being.
“After experiencing epilepsy and then brain surgery at the age of 10, I had no way of really understanding what was going on in my mind… it was absolutely terrifying. One of the biggest resulting problems I found was communicating with people. I’ve had to learn how to adapt to my consequential visual impairment, which can still be extremely frustrating at times, because it’s very unusual and not many people understand how it affects me. I’ve also had to navigate slow brain processing speed, which has brought various challenges at different stages of my life.
“I still encounter a bit of prejudice when my needs haven’t been met, or the nature of the impairment has been misunderstood or overlooked. These were immensely painful challenges growing up as a child, but are very much still present in my life today.”
Rebecca Unwin (Age 25)
Innovative research is needed
This call involves participating in a sandpit event which aims to fund research into novel solutions and interventions to support children and young adults to thrive following a brain tumour. Ideas to support the transition to independence as children grow up and move away from home will also be eligible in this call.
The research ideas developed at the sandpit event could include, but are not limited to:
- evaluation studies with the potential to lead to changes in national practice, fill an evidence gap or create new knowledge and that would have a significant impact on quality of life for people affected by a brain tumour
- research to establish feasibility and to pilot novel interventions that aim to address an unmet physical, psychological or social need
- research that focuses on adapting an existing intervention to a new context or amalgamation of separate, defined interventions so that they complement each other
- feasibility and pilot testing of implementation strategies.
All research proposals developed at the event must have a clear route to patient benefit.
What is a Sandpit?
A sandpit is a type of discussion forum, where collaboration and free thinking is encouraged to explore problems and uncover innovative solutions. The goal is to develop ideas and solutions through discussions with experts from a variety of areas.
The Brain Tumour Charity Quality of Life Sandpit will be a two-day residential event supported by three half-day online events. The online events will help the applicants get to know each other and understand the challenges before the sandpit. They will also give project teams more time to develop their ideas into research proposals after the event.
The event will be led by a director who will be helping to define the problem and facilitate the discussions. The director will be supported by several members of our Scientific Advisory Board (SAB) and people with lived experience of a brain tumour.
Guidance for applicants
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The aim of the sandpit event is to bring people together who would not normally interact, to come up with exciting new ways to support people affected by brain tumours.
Applicants may come from any discipline, including, but not limited to: neuro-oncology, nursing, neuroscience, psychology, occupational therapy, physiotherapy, speech and language therapy, radiation oncology, data science, service design, service transformation, statistics, health economics, behavioural science, implementation science – indeed anyone who is interested in this area of research and improving the quality of life for children and young people affected by brain tumours.
Researchers and professionals working from a wide range of disciplines with a passion to improve the quality of life for children and young people with brain tumours are encouraged to apply.
Applicants must be:
- collaborative and able to work effectively as part of a team
- creative and driven to find new ways to solve the challenges facing children affected by brain tumours
- willing to engage with key stakeholders, including patients and their carers, from a variety of backgrounds
- able to attend all days of the workshop and can commit to attending online events before and after the workshop
- affiliated with a UK academic or medical institution.
Diversity is also important to The Brain Tumour Charity and consideration will be given to discipline, experience, gender and location.
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Applicants are invited to apply to participate in the sandpit event on 11-12 November 2024. Applications will be assessed based on the following criteria:
- Expertise
The applicant’s expertise must add value to this event and any potential award.
- Collaboration
The applicant must demonstrate an ability to work within teams and collaborate with those from different backgrounds.
- Patient-focused
All awards must offer the potential for patient benefit, and applicants must clearly demonstrate a willingness to work with people affected by brain tumours throughout their research.
- Innovation
Applicants must be prepared to think creatively about problems and share radical ideas to solve the biggest problems facing people affected by brain tumours.
Our panel of experts will make recommendations for funding based on the presentation at the end of the sandpit exercise. Successful teams will then be given the opportunity to develop a full proposal before funding will be awarded. The assessment criteria for proposals will be shared with attendees to the sandpit event.
Download the brief – PDF
Read the brief to learn more about the Quality of Life Research Sandpit and Award