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Using ACT to improve quality of life for young brain tumour survivors

We have recently announced we will funding a study that looks at whether a therapy called Acceptance and Commitment Therapy (ACT) can be adapted to help treat young brain tumour survivors.

To understand how this works, we asked 24-year-old Sabrina Bell, one of The Charity’s Young Ambassadors and who is living with a meninigioma, to give us a summary.

This study presents a promising treatment plan to address the psychological well-being of childhood brain tumour survivors that until now has regrettably been overlooked.

In contrast to other conventional therapies that aim to reduce or eliminate symptoms, ACT will help by incorporating acceptance and mindfulness strategies to enable a brain tumour survivor cope with later side-effects of treatment. 

ACT’s aim is to fulfil a rich quality of life and hopefully reduce the likelihood of developing and living with poor psychological health.

Mental health improvement

With a growing social movement towards a better attitude surrounding mental health and well-being, it seems the perfect time to look at people with a greater chance of suffering, because of an existing or previous medical illness.

Childhood brain tumour survivors have the poorest, health-related quality of life of all cancer survivors, probably due to the fact that brain tumours can give rise to a unique combination of learning and psychological difficulties.

For a child, their post-cancer years often coincide with key educational and social milestones, which means these cognitive impairments are even more challenging to cope with.

I’m really pleased to see that childhood brain tumour survivors will take part in this clinical trial – this should really justify the acceptability and feasibility of ACT as a psychological intervention.

It’s also great to see that parents and family members receiving ACT sessions are being included – this will give further support and ensure successful incorporation of this therapy for the young adult in their home setting.

Existing research has already shown that ACT works for patients who suffer from chronic pain and anxiety-related conditions.

Why the study is so important

The importance of this study is how it could potentially enhance the lives of the 102,000 individuals currently estimated to be living with a brain tumour and, subsequently, the challenges that they often struggle with in daily life.

What’s more, it’s the first study of its kind to offer this treatment intervention to childhood cancer survivors, so if the results are positive, it be of global importance and hold a significant impact in the field of childhood cancer treatment programmes.

My experience of post-surgery care

As correctly mentioned by someone in the Research Improvement Network (RIN), the diagnosis and medical treatment of brain tumours often occur quickly and without warning.

In my case, I was diagnosed and operated on within just 24 hours. Although this is an extraordinary turnaround time and I was very lucky to receive urgent medical attention so promptly, psychologically there was little time to comprehend the life-defining diagnosis that I had received just hours before being rushed into hospital.

When I was discharged a week later, I was given information and signposting leaflets as a form of further support while I recovered at home.

As an outpatient with only indirect support available, I realised that my treatment had finished and it was down to me to address the unresolved emotions of shock and disbelief.

If something like ACT has been available, it would have been beneficial in providing a healthy and more personal approach to process what was an extreme and very surreal life event to experience at a young age.

ACT will help other young adult brain tumour patients to have the chance to speak to an accredited psychologist to: reflect upon the medical treatment that they received; how they felt throughout their cancer journey; and address their mentality in preparation of returning back to home life.

On behalf of a community of young adult brain tumour survivors at the forefront of this current study, I believe that having an established programme in place to provide psychological support and treatment, will provide a more holistic care plan than solely receiving medical treatment alone.

We’re extremely grateful to The Charity for considering our views on research priorities and exploring what we believe will make a positive impact on the lives of young adult brain tumour patients.

About the author

I became a Young Ambassador for The Brain Tumour Charity to join the battle of defeating brain tumours. Following my own experience in 2014, I was devastated to learn that brain tumours are the biggest killer of cancer in people aged under 40 but remains the least funded and researched. This upsetting statistic became my main motivation to share my story, in hope to raise awareness and promote the importance of brain tumour research.

ACT research project

Dr Sophie Thomas wants to use ACT to help young people build a rich and meaningful life after a brain tumour.

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How ACT changed my life

Sara, who was diagnosed with necrotising fasciitis, used ACT to improve her psychological and emotional wellbeing.

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Our Research Strategy

See how we plan use pioneering research to double survival and halve the harm caused by brain tumours.

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Media contacts at The Brain Tumour Charity

Press office contact details:

Phone: Mon-Fri, 9am-5pm: 01252 237864
Out of hours media contact: 07990 828385
Email: pressoffice@thebraintumourcharity.org