Before you decide if you would like to take part, it is important for you to understand why the research is being done and what it will involve.
Please read through the following information carefully and discuss it with others if you wish. Take your time to decide whether or not you wish to take part.
Please get in touch with us if there is anything that is not clear or if you would like more information.
Click on each of the sections below for more information.
We know that young people who have cancer are more likely to have other difficulties like anxiety or low mood. We would like to find out how many young people who have cancer are having problems with how they are feeling and how we can best help them feel better.
The purpose of this project is to find out if guided self-help resources work for reducing anxiety or low mood in young people who also have cancer. If we find that they do work for these young people, then we hope that they will become more widely available.
We are inviting all young people aged between 13-24 years, who have cancer to take part in our project.
It is up to you whether you want to join the project. We will describe the project and go through this information sheet with you.
If you agree to take part, we will then ask you to sign a consent form. You are free to withdraw at any time, without giving a reason. This would not affect the standard of care you receive or how quickly you receive care.
We cannot guarantee that the project will help you, but we hope that the information we get from this project will help improve the resources of young people with cancer who struggle with distress or low mood.
There are no specific risks from taking part in the project. If we think that you need to meet with someone to discuss your wellbeing sooner (for example if your mood worsens considerably during this time), then we will refer you to other services that can help. No-one will be deprived of an intervention that they would otherwise have received had they not been a part of the project.
It is possible that thinking about your life and the effect of having cancer could be upsetting for you. If the worksheets do cause any distress, please let us know so that we can offer support and think about what further help is needed.
If you are interested in taking part, you will be asked to complete a few questionnaire designed to identify any problems with distress or low mood and how you feel about your wellbeing.
You (and your parents/carers if you are under the age of 16) will be invited for an appointment with us. This can be done in person, or via telepone or Skype.
After this first appointment, you will use ‘self-help’ resources on this website based on cognitive behavioural therapy (‘CBT’) strategies. These go through strategies that research has shown to be helpful in reducing symptoms of anxiety and mood in children and young people. The researcher can tell you about what the resources involve in more detail. A coach or mentor will guide you through these workbooks. Your coach or mentor will be in touch via weekly appointments. These appointments may be over the phone, or Skype if you prefer this.
We work at UCL and Great Ormond Street Hospital. We are passionate about improving the mental and overall wellbeing of young poeple with physical illnesses.
These are the inspirational people who have shared their experiences with cancer and helped us develop the resources.
Josh is 18 months into remission following extensive treatment for Hodgkin Lymphoma. He writes about his experiences through cancer (and beyond!) on his blog, Livin' With Lymphoma.
Since completing her treatment for Lymphoma at UCLH at the end of 2014, Emma has since been studying Fashion Journalism at the London College of Fashion. Emma is a keen traveller and spends her free time from uni visiting fashion exhibitions around London. She also writes a fashion/lifestyle blog, Finding my way through fashion
