The Ways Ahead project – finding better ways to support people with their diagnosis

We’ve funded the Ways Ahead project because we understand the importance of providing support to the brain tumour community.  

In this article we will discuss:

• What we already know about the support for those living with, and those caring for someone with a lower-grade brain tumour
• What the Ways Ahead project is aiming to do
• What the Ways Ahead project has found so far
• How this research will help those living with a lower-grade brain tumour
• What’s next for the project

What we know already

Brain tumours have a devastating impact on peoples’ lives. As a result of their diagnosis people can experience a range of common cancer-related symptoms. This can include fatigue, sleep disorders and chronic pain. There are also a range of brain tumour-specific symptoms such as seizures, visual impairments and mobility issues. 

All of these symptoms have a big impact on the quality of a person’s life. 

As a result of the tumour, its treatment and the treatment side-effects, those living with a brain tumour need support. But this need is often unmet – the Ways Ahead project wants to change this. 

What is the Ways Ahead project aiming to do? 

The project hopes to empower people living with a brain tumour. It will do this by detailing self-management tools they can use to support their mental and physical health.  

Self-management is a term for the things that a person can do to help with their own rehabilitation after their brain tumour diagnosis. It is about how they can best “manage” their symptoms, treatment and lifestyle changes. There is a growing body of evidence that shows that self-management can help improve quality of life. 

People need the tools to successfully self-manage. And that is what the Ways Ahead project is working towards – creating a toolkit for those diagnosed with, and those supporting a person with a lower-grade brain tumour. 

How is it doing this? 

The Ways Ahead project is split into three parts: 

1. Interviews with those living with, and those caring for someone with a brain tumour, as well as medical professionals. This has identified important factors in self-management and explored what works for some people.  

2. Workshops bringing together experts and those living with a brain tumour diagnosis to generate initial ideas for the self-management toolkit, with consideration of what support people would like and how they would like to receive that support. This toolkit will be designed for use alongside healthcare support and support from friends and family.  

3. Analysis of the current care pathways and proposed integration of this toolkit to determine the “costs” and benefits if it was rolled out across the NHS. 

What has the Ways Ahead project found so far? 

For those living with a brain tumour

In a series of interviews with people living with a lower-grade brain tumour the Ways Ahead project has identified the self-management tools most commonly used after diagnosis.  

This work identified that “accepting the tumour and its consequences” and “receiving helping from friends and family” are the most commonly used self-management tools. 

Overall, the study found supporting evidence for 20 strategy types. This included “using support”, “creating a healthy environment” and “adopting a healthy lifestyle”. In these 20 different strategy types were 123 individual self-management strategies that were used following diagnosis. 

This is the first study of this kind to understand how people self-manage their brain tumour diagnosis to help their health and wellbeing.  

For their caregivers

Interviews with friends and family who care for someone diagnosed with a lower-grade brain tumour identified the support available to “informal caregivers”. 

These interviews found that informal caregivers received multiple forms of support from networks such as friends and people in a similar situation. This included emotional support and having someone to talk to, receiving information from people in their support network and also connecting with people whose situations were similar. 

The difficulties of caring for someone with a long-term illness are well documented. But this is the first study to explore the nature and quality of support for those caring for someone with a brain tumour. 

How will this research help those living with a low-grade brain tumour diagnosis? 

There is an urgent need to find effective ways to improve quality of life for those living with a brain tumour. 

Understanding how people living with a brain tumour engage in self-management, and the challenges faced, will help identify areas of support needs.  

Currently there are no official self-management guidelines. But we hope to change this to ensure that people feel more empowered and better able to make informed decisions about their care after diagnosis.  

Understanding how informal caregivers are supported and helping them to protect their own wellbeing while caring for someone with a brain tumour is also important. Offering the tools to support wellbeing would protect caregivers early on during diagnosis. This ensures they will be better equipped to look after themselves and their loved ones. While Ways Ahead is not currently funded to develop support tools for caregivers, the team hope to look at this in follow-on work.  

What’s next?

The Ways Ahead project is currently publishing its findings which we will update you on as soon as possible. 

In the meantime, we are here to support you with our support services: 

A lot of information I get from the website of the Brain Tumour Charity itself…We’ve been to a couple of the workshop sessions that they held in the early days. There is a supportive community out there.”

A participant of the Ways Ahead interviews

Find out more about the research 

Professor Linda Sharp leads the Ways Ahead project at the University of Newcastle.

One of the researchers on this project, Ben Rimmer, has featured on our podcast “Let’s Talk about Brain Tumours”. Listen to him speak about the project here.