Shaping the system to listen to children, young people and families with experience of cancer
We are delighted to announce that we are partnering with leading cancer charities, Young Lives vs Cancer the 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.
There are many cancer charities throughout the UK; working with children, young people and families processing a new cancer diagnosis, offering 1:1 support, peer groups and signposting to advice and information. This research will allow these service providers to come together to collaborate and think differently about systems of support, and prioritise based upon the needs of service users, with a joint effort to develop measures and strategies grounded in evidence.
Throughout the course of this research, we will be taking an Integrated Approach to bring diverse forms of evidence to the forefront of what makes ‘good’ support according to those young cancer patients. We will be forming a strong steering group, guided by young cancer patients and parents or guardians with experience supporting children or young people with cancer to co-design this research from the start. They will shape the UK-wide survey that will be launched in late Spring, and support in processing the data and what we’re finding out. All this will help us to understand what works and what changes are needed in the system supporting children and young people throughout their journey of cancer care, treatment, support and recovery.
Tim Hobbs, Dartington Service Design Lab CEO explained the value of integrating youth voice with systems thinking: "This approach brings together the voices of children, young people and families, new evidence and systems thinking, which will help inform plans about the best roles each organisation can play in the sector - alone and together - to help improve outcomes for those they serve. We at Dartington Service Design Lab are delighted to be working with such forward-thinking partners and inspiring young people.”
Rachel Kirby-Rider, Chief Executive at Young Lives vs Cancer said: “It’s hugely important that charities really understand the needs of those they support. At the very heart of Young Lives vs Cancer’s next strategy will be children and young people with cancer and what they need, so it’s vital we take a step back, look at the system around them, and identify gaps and what needs to happen to build a better future for them.”
Identifying what works and gaps in support
To begin with, we’ll be applying a systems thinking lens together with participants to visualise and strengthen the networks of support for service users and be clear where the gaps are occurring or opportunities sit. This is crucial to strengthen the work that service providers are doing across the UK and make sure the sector is working together as efficiently and effectively as it can.
Tim Hobbs added: "This is a hugely exciting and innovative programme of applied research and design. What is particularly inspiring is that four of the largest and most impactful children’s cancer charities are putting aside their own organisational priorities and are instead grounding their future strategic direction by working together to better understand the needs of children, young people and families.”
Nathan Sheach, Strategic Lead for Service Design, explains what we hope to identify throughout this piece of work: “We're looking for under-served needs. We're looking for opportunities for these charities and public bodies to work together. We're looking for evidence that's so robust and so rich that they can develop strategies on the back of it. There are a lot of unknowns in the sector as well as potentially a lot of duplication. Different organisations are coming together to not just see themselves as one service, but sitting within a system with multiple different networks and different ways of providing services to children and young people with cancer in their families.”
Having experience of cancer as a powerful tool to enhance services to support others
At the centre of this work are young people aged 14-25 with recent experiences of cancer and those who have or are currently supporting a young person through cancer as a carer or family member.
They will be invited as participants to join a ‘small but powerful circle’ of relationship-based co-production workshops from January to May 2023, working with the research team to explore rich storytelling methods, courageous conversations, mapping and numerous insight generation techniques, to influence and shape the direction of the research. At the core of the developing inner circle should be a platform to connect, tell their stories, ask questions and outline what is needed from the system.
“There's no better and richer evidence than the experience of children and young people who are within that system, working together with the providers of those services themselves to identify what's working and what's not working. It’s about elevating children, young people and families to the centre of the research,” says Nathan.
“I think throughout the whole of the UK, whether it's health care, whether it's support groups, whether it's different sectors, far too often we've designed services based upon guidance from a [top-down] approach, developing what people need from a practitioner's or a policies point of view. Actually, the lens of what these processes feel like and where you’re viewing them from, what the different stages are and what support you need can only come from children and young people's voices and from their families. It can't come from the practitioner because they’re not always involved through every step in the journey or the emotions or occurrences between those steps.”
Shaping health and care systems policy
Alongside the small circle of influence at the centre, we have a larger circle which is all about keeping the wider sector and service providers engaged in the process and the evidence generated by it. Stakeholders within the system will have opportunities to summarise key points and support key stages of research progression, as well as take part in interviews and be involved in various ways within showcases or explorations of evidence captured by the project. We want those who have the power to influence change to be with us from the start – Listening, learning and participating.
Strengthening everyone’s understanding of support systems, especially those able to make decisions within the system, acts as a powerful vehicle for systemic change, both to research and design.
“Everything coming together as an Integrated Approach telling us what's working and what's not working is the best possible chance of influence in the system,” concludes Nathan. “What strengthens this project is the system being on the journey with us. They're not receiving a report they have to read twelve months down the line. They're along for the duration with Young Lives vs Cancer and partners. Whether that's checking in on key points or feeding into the different workshops or the evidence being presented to them. That's what takes the project beyond just capturing evidence alone - doing this with the right mindset which opens up a myriad of opportunity.”
The research is now underway, with the first small circles coming together in the next few months and will continue throughout the first half of 2023. The initial findings are expected in the autumn, and these will then be used by the partnership of cancer charities to shape their future strategic thinking.
For more information about this research with Young Lives vs Cancer, please contact: Nathan Sheach or Tim Hobbs.