More innovation, funding and partnerships urgently needed to improve children’s palliative care worldwide

New UK research sets out an “unashamedly optimistic” vision to improve care for children with life-limiting conditions worldwide

London, UK – Wednesday 12 October 2022 – A new report into Children’s Palliative Care (CPC) worldwide has set out a vision for how to radically improve the levels of care for the rapidly growing number of children around the world with life-limiting conditions.

The 103-page report is entitled “The children’s palliative care provider of the future: A blueprint to spark, scale and share innovation”, and is published this week by researchers at Imperial College London. It outlines the nine critical features of CPC services – including physical, emotional, and social support for children and their families to ensure the best possible quality of life.

Jonty Roland, Honorary Research Fellow at Imperial’s Institute of Global Health Innovation (IGHI) and lead author, said, “Families of children living with life-limiting conditions are the most incredible problem solvers. Staff working at the front line are also innovating daily to provide their best care. We found a tremendous amount of small-scale innovation happening across the children’s palliative care sector – the problem is that it is not being supported. Palliative care is a core part of healthcare and a human right. There are huge opportunities to close the gap in need by forming new partnerships to help develop good ideas at a local level into global solutions, which can then benefit millions of children.”

The report is based on interviews with 51 children’s palliative care leaders across 27 countries and provides a blueprint for the future to spark innovation, scale current work and equip frontline providers with the essential toolkit and broader vision for better care.

According to the International Children’s Palliative Care Network (ICPCN), an estimated eight million children and young people worldwide need access to palliative care for life-limiting conditions. However, most children needing these specialist services never receive appropriate care, with 65 percent of countries having no known children’s palliative care provision at all.

Researchers at the IGHI highlighted this global shortfall and said it would not be addressed without cross-sector action from healthcare institutions, technology partners, and much-needed further investment.

Co-author Gianluca Fontana, Deputy Director at IGHI, commented, “In the future, children and their families need to have a broad choice of how they can access palliative care services – in their home, digitally, or in a dedicated children’s hospice, and seamlessly blended into the other healthcare services they receive. Partnerships with technology, consumer health, and gaming companies have already created a wide range of tools to improve the lives of children with complex and unique needs. These include 3D printed devices, virtual reality-based therapies, and apps that support local volunteers and caregivers to perform tasks that might require a nurse today.

“We are seeing children’s palliative care catch up with other health services in areas such as user experience tracking. But we also see CPC services taking the lead and provide important lessons for other parts of a country’s health system to learn from and take on-board. For example, we’ve witnessed tremendous innovations in supporting the well-being of children’s palliative care staff who do incredibly tough jobs.”

The report calls for new expertise and investment from organisations outside the children’s palliative care sector to help providers scale up and support these innovations. It also outlines distinct roles for governments, donors, corporations, start-ups, investors, researchers, and global health institutions. The areas outlined have a strong potential for CPC innovation – including the adoption of innovative new technology, scaled organisational models, and data-driven care delivery, alongside global case studies that highlight examples of good practice.

The report also lays the groundwork for the Global Treehouse Foundation, a new initiative that looks to bring untapped resources and expertise into children’s palliative care to achieve this vision. Over the coming months, the report’s authors, together with the Global Treehouse Foundation, will bring together groups of individuals and organisations around this vision for change focusing on collaborative projects. To register interest in these events and plans, please email [email protected].

The CPC report comes ahead of the ICPCN’s annual awareness day on Friday 14 October, ‘Hats on for Children’s Palliative Care,’ which raises international awareness of children’s hospices and palliative care services worldwide.