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ACT NOW study update

We hear from two clinical psychologists who are helping young people after their brain tumour treatments through our ACT NOW study.

One of our quality of life research grants is focused on helping young people to live their best lives after brain tumour treatment. They’ve been working closely with our Young Ambassadors (pictured above), even getting their help with the study name: ACT NOW. Recently, researchers Dr Jac Airdrie and Dr Chloe Geagan got in touch, here’s what they shared about how the study’s going.

We need to explore better ways of supporting young people who have experienced a brain tumour and its treatment. In 2019, Sabrina’s story highlighted the impact of a brain tumour diagnosis, which can be sudden. Treatment can occur rapidly, because timeliness can be crucial. However people who experience this can be given little space to comprehend how life-altering it can be.

Funded by The Brain Tumour Charity, and led by Dr Sophie Thomas, we are currently undertaking a study to explore the acceptability of using Acceptance and Commitment Therapy (ACT) to help young people who have experienced a brain tumour diagnosis and treatment. In this update we will share our study progress. We will talk more about the specific ACT approach we are using and its relevance to young people. We will also talk about delivering ACT in the current climate of remote working due to COVID-19.

Meet some of the team

We have recruited two new Clinical Psychologist to help deliver the trial (this also happens to be us writing the article!).

Dr Jac Airdrie completed his Clinical Psychology training at the University of Bath. Prior to training as a Clinical Psychologist Jac completed a PhD at Cardiff University exploring potential treatment targets for young people with neurodevelopmental conditions experiencing emotional difficulties. Jac’s experience working within a paediatric neuropsychology team during his clinical training provided insight into the changes that can happen for a young person when they experience a brain tumour and the challenges this then brings as they navigate through the education system and the fast-paced social world. These experiences inspired Jac to apply for the trial upon qualification to help support young people to re-engage in what is important to them following such an experience. Jac will be based at Bristol Children’s Hospital. In his spare time Jac enjoys long bicycle rides in the countryside and has recently cycled from the top to the bottom of his home nation, Wales.

Dr Chloe Geagan completed her training in Clinical Psychology at Newcastle University. Before this, Chloe worked as an Assistant Psychologist in Scotland, supporting young people with mental health difficulties in a range of settings. Chloe has a strong interest in working with young people who are living with physical health conditions, particularly cancer and epilepsy. Part of the work of being a Clinical Psychologist involves supporting young people and their families to get the best out of life despite the different challenges they face. Therefore, the opportunity to take part in a national trial such as the ACT NOW project felt like the perfect opportunity for Chloe to become involved in something that she is passionate about, and will hopefully directly benefit young people in the future. Chloe will be based at The Great North Children’s Hospital, Newcastle. Outside of work, Chloe spends most of her time at her local Crossfit gym, hiking around in the countryside, or borrowing other people’s dogs until she can get her own!

Jac and Chloe have now completed specialist ACT training with Dr Louise Hayes, and are working alongside Dr Sam Malins and Dr Sophie Thomas. Sam is an experienced Clinical Psychologist recruited to our study last year. Sam leads the therapy team and will be delivering ACT to patients in Nottingham. Sophie is a consultant paediatric neuropsychologist and has many years of experience supporting young people who have experienced brain tumours and other conditions. Sophie is the lead researcher of the study as is responsible for it overall.

DNA-v – ACT For young people

ACT was originally developed for use with adults. Adult approaches to ACT may assume that individuals already know what’s important to them, and the sort of person they want to be (their values). This may not always be the case for young people. Luckily, a way of doing ACT tailored specifically to children and young people has recently been developed. We are very fortunate to have Dr Louise Hayes, an international expert in Australia, who developed this approach alongside her colleague Dr Joseph Ciarrochi. Louise will be providing training and supervising us delivering the therapy on the trial. The approach is called DNAv, but what does that actually mean?

DNAv introduces three skills, which all young people have, that can be used to help develop their values and live life according to what’s most important to them.

D is for Discoverer. We use our Discoverer when we are seeking to try new things, try on new selves and assess how things work. The Discoverer’s journey can be both scary and exciting. Using our discoverer we can find out the things that are important to us as well as learning about our many strengths.

N is for Noticer. All of us are born with a Noticer skill. We use our Noticer to see and feel what is going on around us and inside us. It is about experiencing the world through our body and senses. Our Noticer doesn’t seek to change our experience or what’s going on around is, it just allows them to flow, just like the weather.

A is for Advisor. Our Advisor is our inner self-talk which continually comments on and evaluates our life choices and decisions and those of others. “is that really a good idea…?” “What if…?”. Our Advisor uses our past experience and what we have learnt from others to help us navigate in our day to day lives and to keep us safe.

All these skills are needed to help us develop and survive. However, at times because of difficult life circumstances, such as a brain tumour, we may have learnt to become reliant on certain skills more than others. DNAv seeks to strike a balance so young people can use these skills in the most helpful way. As an example, we could think of our Advisor as a bit like a Sat Nav in a car. It saves time by preventing us from going in the wrong direction, or making mistakes like going down a one way street, but it can sometimes be unhelpful – perhaps roads have been removed and new ones built since your Sat Nav was made and therefore it gets us lost. In such a situation we may need to be less reliant solely on our Sat Nav (Advisor) and instead pay attention to the new road system in front of us (Noticer) and try out new and unused routes (Discoverer) to find our way. You can find out more about DNAv using the following link https://www.thrivingadolescent.com/dreambig/

Remote Delivery

The coronavirus (Covid-19) pandemic has brought a lot of changes with it over the past year or so. One of these has been a move towards more psychologists offering therapy sessions online. ACT NOW will be delivered remotely, which means that everyone who would like to take part will have the option be to speak to the therapist through video calls. A lot of effort has gone into the trial to make sure that these videos calls will be confidential and secure. There will also be time to practice setting up for sessions so that people feel comfortable before starting sessions.

The ACT NOW team felt it was important that as many people who wanted to take part in the study were able to do so. Being able to offer sessions online makes it more accessible, especially for young people who may live a long way from the hospital, or who are feeling too unwell to go to sessions in person. This hopefully means that more people will be able to take part in the trial without having to worry about travelling long distances. It also means that it can be more convenient for the young people taking part as they will be able to do sessions from somewhere that may be more comfortable than in a clinic room.

What next?

At the time of writing this blog, recruitment has started in Nottingham, and both Bristol and Newcastle have just been given approval to start. We hope to offer the therapy to enough young people to get a good idea of how helpful it is by January 2022.

If you would like more information about this, or any of our other research grants please drop us a line research@thebraintumourcharity.org