State of the System Report: Understanding cancer care for children, young people and their families
Written by:
In 2023, four of the UK’s leading children’s and young people’s cancer charities, Young Lives vs Cancer, Teenage Cancer Trust, Ellen Macarthur Cancer Trust, and Children’s Cancer and Leukaemia Group (CCLG) joined forces with Dartington Service Design Lab to create a shared, evidence-based understanding of what was needed to build a better future for children and young people with cancer. We used our integrated approach to develop a rich understanding of the evidence, gathering the lived experiences of more than 1,500 young people and families in the UK’s largest-ever survey into the psychosocial needs of young people living with cancer.
We’re proud to present this evidence in our new State of the System Report: Understanding the needs and wellbeing of young people with cancer and their families. This is a significant moment, providing the foundational evidence to develop groundbreaking solutions in the system supporting young people with cancer and their families and inform decisions that achieve greater outcomes all.
You can read the report (on the left), download it by clicking the button below, or keep reading to hear our top-level findings.
How it began:
The research engaged young people diagnosed with cancer, as well as parents and carers, siblings, social workers, oncology clinicians and charity managers. In-depth contributions came from a ‘Small Circle’ of parents and young people, who shared their experiences and helped shape the research and survey design. We also engaged a 'Wider Circle' of professionals from the health and charity sector who participated in interviews and focus groups. We then conducted a large-scale survey reaching a 'Big Circle' of more than 1,500 people to capture a wider cross-section of cancer care experiences. This approach allowed us to gather a breadth and depth of insight, and an opportunity for young people and their families to shape the research.
The survey explored wellbeing and quality of life and factors which may impact these, such as the social and emotional impact of cancer, practical needs and the support received.
What did we find?
Before treatment:
Qualitative research participants described their experience leading up to diagnosis as being marked by stress and anxiety. Receiving a cancer diagnosis can be traumatic and rarely is there sufficient time or headspace to process the information. This may be compounded by challenges in accessing adequate support from healthcare professionals. These challenges are particularly heightened for families already struggling with pre-existing financial burdens and limited social support.
During treatment:
Beginning treatment and getting accessible and timely information about this is challenging. Financial and practical pressures further compound the emotional toll on families, while feelings of anxiety and isolation permeate the treatment experience. Unsurprisingly, young people undergoing cancer treatment, and their parents, carers and siblings, report poorer wellbeing and quality of life, and higher cancer-related needs than those after treatment.
After treatment:
After cancer treatment, young people and families report better wellbeing and quality of life. However, even years following treatment, wellbeing is still below that of the general population and emotional challenges persist, with anxiety spiking during follow-up tests. The sharp decline in signposting to relevant support after treatment leaves individuals feeling isolated and struggling to access the necessary support. In the years following treatment, we see an increase in needs from young people who find it hard to reconnect with support for their wellbeing.
What happens now?
The four leading charity partners will be launching their North Star vision. It sets out what the system should look like to support the needs and wellbeing of children, young people and their family at all stages of their experience including once treatment has finished. A vision where:
Every child and young person facing cancer receives care that’s tailored to them.
They feel informed and in control, and along with their families can make knowledgeable decisions about their care and future. They feel empowered every step of the way, facing no gaps in support or barriers to access.
They have everything they need from the beginning of their cancer journey, during treatment and for as long as they need it afterwards.
Should you want to know more about this project and what’s happening in future, please don’t hesitate to get in contact with Tim Hobbs.