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 people 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:
- Interviews with those living with, and those caring for someone with a brain tumour, as well as healthcare professionals. These interviews have explored how people are impacted, how they already self-manage, the support provided by family and friends, and any challenges to supporting people to self-manage.
- 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.
- 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?
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Self-management strategies
In a series of interviews with people living with a lower-grade brain tumour the Ways Ahead project has identified the self-management strategies 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 strategies.
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.
Facilitators and barriers to self-management
Understanding the self-management strategies is just one piece of the puzzle. The next step was to understand the facilitators and barriers to people using these strategies.
Interviews with people diagnosed with a lower-grade glioma found that they face a number of barriers to self-management of their diagnosis. These barriers often link with one another, for example, being unable to drive may make it difficult to get to work, or having cognitive and communication impairments may impact a decision to go to a support group.
The combinations and interactions of these barriers need to be addressed in self-management support for people living with a lower-grade brain tumour to help support people with their diagnosis.
Quality of life
Another set of interviews explored the impact on quality of life for people diagnosed with a lower-grade brain tumour. Key themes impacting quality of life were: coping with the emotional response to diagnosis, living with ‘what ifs’, dealing with changes to relationships and coping with faltering independence.
One person interviewed said: “It changes everything”. Read more about this work here.
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Support they receive
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 ‘informal’ 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 from family and friends for those caring for someone with a brain tumour.
Further research highlights the substantial emotional impact that caring for a loved one with a lower-grade brain tumour can have. The key challenges they might face include feeling helpless, worrying about an uncertain future and the challenges of changing relationship dynamics and burnout.
Support they provide their loved one
Another analysis from interviews with informal caregivers set out to understand what it means to be a carer for someone with a lower-grade glioma. Several key themes emerged including what it’s like to be a carer, adjusting to cognitive difficulties, protecting emotions, advocating for health and trying to maintain their loved one’s independence. This research showed that informal caregivers offer a wide range of support, though face challenges with trying to balance the provision of care, while maintaining the independence of the person living with a brain tumour diagnosis.
One person interviewed said the role of an informal caregiver is: “A delicate dance”. Read more here.
These results demonstrate the importance of studies like the Ways Ahead project which is finding ways to support carers during this difficult time.
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A “one size fits all” approach to self-management following a cancer diagnosis is not suitable for those in need.
Therefore, the Ways Ahead project reviewed self-management interventions for improving quality of life for cancer survivors. This work reviewed 32 existing self-management interventions, and found that 22 of these were linked to improvements in quality of life for people diagnosed with different types of cancer.
These improvements were found most often for interventions that included individual and group elements. The most used tool to support someone during their diagnosis was providing information about their condition and advice on how to manage it. Interventions that include information about their condition and its management generally had a positive impact on quality of life.
From this work, it was noteworthy that there are no existing self-management interventions for people living with a brain tumour. This research will inform the self-management toolkit that this researchers hope to put together for those living with a brain tumour diagnosis.
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Interviews conducted with healthcare professionals helped understand what needs to be done to implement self-management support in real life. They also gave valuable insight into how healthcare professionals play a role in supporting self-management for people diagnosed with a lower-grade glioma, and how they themselves can be supported to give the best care.
This research showed that healthcare professionals understand the unique challenges of lower-grade gliomas and recognise that supporting their patients to self-manage is important to improve quality of life. However, they expressed that it is hard to know all the support that is available, when it changes and how to access it.
Healthcare professionals recognised that building a strong relationship with their patients is an important part of helping them to manage their diagnosis and being a friendly, on-hand person, they can turn to is extremely important. When speaking to people diagnosed, they recognised the efforts of their healthcare team and appreciated their support.
An important barrier that was highlighted was the need for healthcare professionals to receive adequate training to best support self-management for people living with a lower- grade glioma, and noted that financial and resource constraints can be an issue.
This work provides a crucial first step in creating a shift in care culture. By understanding the barriers and facilitators to helping people have a better quality of life, it will be easier to embed supporting self-management into routine practice.
How will this research help those living with a lower-grade brain tumour diagnosis?
There is an urgent need to find effective ways to improve quality of life for people 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.
Professor Linda Sharp
Linda Sharp is a Professor of Cancer Epidemiology in the Institute of Health & Society at Newcastle University. She has worked extensively in all aspects of cancer research. Her research spans from the causes of cancer, screening, treatment and treatment decision making.