Using our integrated approach to evidence across systems of health - supporting cancer care responses in children and young people
Communications and Production Manager
In 2023, we launched the start of an incredible partnership with leading children and young people’s cancer charities Young Lives vs Cancer, Children’s Cancer and Leukaemia Group, the Ellen MacArthur Cancer Trust and Teenage Cancer Trust, to apply an Integrated Approach to research and systems change with children and young people with cancer experience.
This has been an exciting project for multiple reasons. In this blog we explore the significance of the research approach and the results of this partnership, all of which were built to strengthen the system response to the psychosocial needs of children and young people with cancer and their families.
Having the vision to understand the system of support for children and young people with cancer
At the start of this process, the ambition was to create a shared, evidence-based understanding of what was needed to build a better future for children and young people with cancer. One where they could receive the right support to meet their needs, as well as finding accessible and appropriate treatment. Most importantly, it was important to move towards an understanding of the mental health and well-being needs of children and young people, not just their physical needs – and to extend that understanding to their families as well – to develop our understanding of their needs for support, too.
To do this required partnership working. This approach isn’t always easy – nor is it always commonplace! We often see organisations working in competition with one another, delivering fragmented services that overlap, while still struggling to communicate with or reach those most vulnerable and in need of systems of support. It can leave gaps in sector knowledge, frustrations for patients and most urgently, needs being left unmet.
It is important to see these four partners come together, to put aside organisational egos to ask the question: “What can we do better together, as part of an interconnected system to support children, young people and families experiencing cancer?”
Thinking systematically in this way starts with the hopes and needs of children and young people and their families. It asks what we might do better to meet their needs but also what we might do collectively to disrupt the things that make experiences of cancer worse. It recognises that no single organisation can achieve all of this alone and, most importantly, pushes sector partners to move towards a different question: “What is the best role and contribution we can play, and how can this be coordinated and harnessed alongside others playing their best role?”.
Redefining roles in the sector to create a stronger system
Dartington Service Design Lab was chosen to help answer this question by using our system mapping and participatory research methods to not only capture the experience of children and young people with cancer, but also help to build a system-wide theory of change – one that maps and serves the whole sector.
This meant designing the research a little differently.
We chose firstly to put young cancer patients and their families at the heart of the research and approach by co-designing the research with them in “small circles” of focused conversations. This helped us to better understand the patterns in their experiences and find the right language to use for our next phase of research. We combined this with wider focused conversations with “big circles” of those working in the system - clinicians, health and social care professionals – to expand our understanding of the system and the perspectives of those serving children and young people with cancer and working to meet their needs. (See our initial core areas of focus in our conference piece below.)
All of this qualitative learning, combined with literature research, helped us co-design a survey set to measure the wellbeing and quality of Life of children and young people with cancer during and in the years after their cancer treatment. Working with the small circles helped us keep focus on the whole family, not just assessing young cancer patients and their parents or carers, but also understanding the impact on siblings. This approach led to us co-designing questions that didn’t only focus on treatment but needs over time. Finally, it helped us design the survey to reach a diverse audience so that we could capture the voices of those who are often underrepresented in health surveys.
The results were astounding. We set out to reach just 500 people. However, the scale of the research and the quality of the partnership working together led to us receiving more than 1500 responses, making this the largest UK-wide survey focused on the psychosocial needs of cancer care for children and young people and their families.
Learning is key to pushing the strategy for cancer support forward
We are still in the process of moving through all of the research in great detail. Some initial highlights we’ve seen so far include:
How commonplace isolation and loneliness can feel for both patients and their families.
How important timing is, both in terms of giving information, being connected with others and having some idea of what future transitions might look and feel like
How often siblings of those experiencing cancer can experience complex and unique experiences.
The integrated approach to evidence in this project brought together the voices of children, young people and families, new evidence and systems thinking, which will now help to inform plans about the best roles each organisation involved can play in the sector - alone and together.
Later this year, we can expect to see the findings of the research and what happens next to put the learnings into practice across the sector and improve outcomes for those they serve. We can’t wait to see this!
For more on how we’re using the integrated approach to generate more equitable forms of evidence for systems change, do get in touch, take part in our training or follow our newsletter for more.