Understanding the needs and wellbeing of children and young people with cancer and their families: Applying systems thinking for transformational change

Summary

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), have launched The North Star, an ambitious vision for a better future for children and young people with cancer.

In 2022, the charities, together with Dartington Service Design Lab, began an in-depth programme of qualitative and quantitative research, with the aim to transform cancer care for children and young people.

This evidence base, which includes the lived experience of over 1,500 young people, parents, carers and siblings, now provides the foundation to develop solutions and inform decisions that achieve greater outcomes for young people and their families affected by cancer.

This report focuses on the needs and wellbeing of children and young people with cancer and their families and identifies the gaps in support and areas which need vital transformation.

Content

Key findings from the report include:

• Qualitative research participants described their experience leading up to diagnosis as being marked by stress and anxiety, with 48% of the young people, parents and carers surveyed wanting more support to understand their or their child's diagnosis.
• During treatment, financial and practical pressures further compound the emotional toll on families. 43% of survey respondents said they received support related to financial help or benefits, but 38% said they needed more support and 12% said they didn't receive any.
• 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 the sharp decline in signposting to relevant support leaves individuals feeling isolated and struggling to access the necessary support.
• Young people who were treated for cancer have 36% higher anxiety than the population at large, and this remains true more than six years after treatment.