20th May is International Clinical Trials Day, and we’re shining a light on the vital role research can play in improving health and social care outcomes for children’s palliative care.
Why research is important in children’s palliative care
Children’s palliative care is a complex and rapidly evolving field. It covers children with a very wide range of conditions and needs – including rare disease and those without a diagnosis. There is a relatively small pool of multifaceted professionals who support these families, encompassing everything from specialist clinicians and nurses serving individual healthcare needs, to physio and occupational therapists, art therapists and counsellors serving a range of psychological and holistic needs across the wider family.
Historically this has made it difficult for the evidence base surrounding children’s palliative care to keep pace with the development and delivery of services on the ground. As a result there are many different examples of children’s palliative care excellence delivered by passionate and highly skilled professionals. But often without a robust way of knowing which approaches lead to the best outcomes for families, or equally their true value to the wider communities and populations in which they operate.
Furthermore, palliative medicine has progressed rapidly in recent years, with babies, children, and young people now more often living longer and with increased medical complexity. This is leading to an incredibly diverse and growing clinical population, without a clear understanding of the most important research questions or methodologies that would benefit them.
What is ‘research prioritisation’?
Much like untangling a huge ball of wool to separate out the individual strands and understand the quality and abundance of each colour, a process of listening now needs to begin to understand which key issues faced by patients, families and professionals need to be researched to unlock the most benefit for the children’s palliative care community as a whole.
This is process called ‘research prioritisation’ and it involves bringing together voices from everyone engaged in planning, designing, implementation and evaluation of relevant services, along with the individuals, families and communities they serve, to determine a way forward.
Going back to the wool example, this essentially means defining which threads of wool, when knitted together, are most likely to create the richest, best quality ‘knitwear’. Rather than working with each piece of wool independently, only to find out at the end that the jumper still has holes.
Benefits of research participation
There is a growing awareness that children and families themselves want to participate and be involved in the design of research that could benefit them and others, and indeed that it is ethical to give them the same right as anyone else to decide if they wish to participate in sensitively conducted research.
Together for Short Lives has worked extensively with the Association for Paediatric Palliative Medicine Research to contribute to guidance published in the BMJ on involving particularly vulnerable children in medical research, highlighting how the benefits of participation far outweigh the harms:
There is now considerable evidence that families and young people who participate in research find it beneficial rather than harmful, with opportunity to speak about illness and death, express painful emotions, and obtain release from isolation. There is also evidence of a ‘maturational effect’ of life-ending illnesses, where children and young people express a wish to benefit others and benefit themselves from such ‘meaningful’ encounters. Research in these sensitive areas, including qualitative studies, requires review by research ethics committees that have the necessary knowledge and expertise.
Modi et al, Archives of Disease in Childhood 2014;99:887-891
Our commitment to furthering research into children’s palliative care
In our recently launched refreshed strategy for 2026–2028, we set out a commitment to lead the sector in the development of shared research priorities for children’s palliative care. This complex but critical task will involve a collaborative effort involving clinicians, patients, academics and carers from every part of the sector – spanning children’s hospices, NHS community and hospital children’s palliative care services, social care and education – working together to identify and prioritise evidence uncertainties in particular areas of children’s palliative care that could be answered by research.
At the heart will be a ‘Centre for Evidence and Practice’, acting as a collaborative powerhouse to help build evidence for the improvements that families and professionals agree will make the biggest difference across the sector.
Ultimately research prioritisation is a key step in bringing the evidence for children’s palliative care on a par with its adult equivalent. In the medium term this will help break down barriers to funding for pivotal research, and further on in future it will create a powerful mechanism for system change that will reveal the true value of early palliative intervention, helping build a robust data-driven case for long-term statutory funding of services.