Cancer is a life-changing diagnosis to receive at any age but for young people, it can be especially devastating.
Cancer treatment can put their life on hold during a time when they are going through significant life changes.
“For young people living with cancer, isolation and social anxiety can be a big issue”
Young adulthood is a time fraught with emotional and hormonal change, as that person figures out their identity, starts socialising with friends and forming close relationships.
At The Royal Marsden NHS Foundation Trust, we offer specialist age-appropriate care to cancer patients aged 16 to 24 as well as emotional, psychological, practical, and social support.
We ensure that patients are supported by a specialist team, and we focus on issues specific to their age group such as fertility, body image, and support in transitioning to life with and after cancer.
When we care for them, the emphasis is on them being a young person with a unique identity, rather than someone with cancer.
For young people living with cancer, isolation and social anxiety can be a big issue – their treatment plan may mean they can’t socialise with friends, or they might be worried about body image, creating anxieties around forming relationships.
Some patients may experience sleep problems and depression due to their cancer treatment, which can have a significant impact on their quality of life.
At the Royal Marsden’s site in Sutton, Surrey, the teenage and young adult ward is designed to be an age-appropriate environment which enables young people to benefit from peer support, with the opportunity to engage in group activities such as music, art therapy and a Friday ‘mocktail’ night.
Using technology to provide timely mental health support for young cancer patients
Technology has the potential to break the stigma around mental health for teenagers and young adult (TYA) cancer patients.
It can provide personalised resources which can help patients to feel like they understand their diagnosis and treatment plan better, giving them access to what they need any time of day.
Young people living with cancer have unique psychological needs, so it’s critical that they receive the help they need, when they need it.
At the Royal Marsden, a number of our young patients are referred to our psychological support service, which is funded by The Royal Marsden Cancer Charity.
We wanted to further enhance the mental health support which is available, so we surveyed our TYA patients to find out more about the support that would be helpful to them.
This led to the development of a tailored app, which has been funded by The Royal Marsden Cancer Charity.
Aimed at 16-24-year-olds, it is designed to support young patients through diagnosis, treatment and beyond.
Incorporating the patient voice was very important for us. We collaborated with our youth forum, which consists of young people who have all experienced care at the Royal Marsden, to provide feedback on the use of technology for this purpose.
This provided us with a unique insight into what they needed and gave the patients themselves an opportunity to have ownership of their experience during cancer treatment, and to help future cancer patients.
Co-creating mental health support with patients
We began working with digital cancer care specialist, Careology, in order to provide this personalised, co-created content in an app which patients could access at home.
It was important for us that this content was co-developed and co-created by patients and clinicians at The Royal Marsden to ensure it appealed to the age group and was accurate, easily accessible and digestible.
To make the content as personalised to this group as possible we focused on key themes including body image, fertility, fatigue, sleep and managing anxiety.
This, coupled with The Royal Marsden’s TYA Instagram account, helps to connect young people and provide a platform for their unique perspectives and needs.
The app also provides a symptom tracker tool to enable the young person to record their symptoms and feelings they are experiencing, which they can choose to share with their clinicians during consultations.
The future of mental health support in cancer care
Using technology to provide mental health support for young people with cancer is a significant step forward in cancer care and healthcare as a whole.
Involving patients in the development process of the app gave them a sense of agency and allowed them to take an active role in their recovery.
“We hope that our patients find it a valuable resource to support their health and emotional wellbeing”
It also helped to connect them with the support and resources they may not otherwise have been aware of, for example organisations that run support groups both locally and nationally to support teenagers and young adults with cancer.
The app’s flexibility provides timely support which allows patients to get the help they need and gives them more engagement in their treatment progress and recovery.
It gives young cancer patients a sense of control and ownership over their experience, helping to improve their overall wellbeing and quality of life during and after cancer treatment.
This project is an exciting step for us at the Royal Marsden and we hope that our patients find it a valuable resource to support their health and emotional wellbeing throughout their cancer diagnosis and treatment.
Insight from this project has been shared at the international Adolescence and Young Adult Cancer Congress 2023, and it is hoped that in the future the app will become more widely available for teenagers and young adults.
Emma Thistlethwayte is teenage and young adult lead nurse, The Royal Marsden NHS Foundation Trust
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