In December we published the overall results from the third ‘world map’ of palliative care development, showing that only a small proportion of the global population, mostly in the global North, live in countries with the most advanced provision of palliative care.
We can now present our assessment of global levels of children’s palliative care development, based on questions in the world map survey that asked experts around the world specifically for their perspectives on current palliative care provision for children in their country. This is important because children’s palliative care is in many ways distinct from that focused on adults, encompassing a broader range of conditions and of treatment durations . Around one third of the global population is aged under 20, and it is estimated that, around the world, 21 million children every year would benefit from some kind of palliative care .
On the basis of responses to our questions in the global survey, we allocated each country to one of six categories:
- 1) No known palliative care activity for children
- 2) Capacity-building palliative care activity for children
- 3a) Isolated children’s palliative care provision
- 3b) Generalized children’s palliative care provision
- 4a) Children’s palliative care at a stage of preliminary integration into mainstream healthcare provision
- 4b) Children’s palliative care services at a stage of advanced integration into mainstream service provision.
The results provide the most comprehensive, robust and up-to-date information available on the provision of children’s palliative care services around the world. They show that only 21 countries can be placed in the highest two categories, indicating at least some degree of integration of children’s palliative care into mainstream provision. These countries account for less that 10% of the global population aged under 20, and almost all enjoy relatively high levels of income and human development (as measured by the World Bank and UN respectively). In contrast, it is estimated that around 98% of global need for children’s palliative care is in low- and middle-income countries .
Thirty-one percent of the world’s children live in 55 countries with only isolated and generalised provision, 24% live in 77 countries that only have capacity building activity in place, and 10% live in the 106 countries with no known children’s palliative care activity is taking place, or where it has proved impossible to gather any evidence. These countries are mostly in the global South.
However, for a further 29 countries, accounting for just over a quarter of the world’s children, it was not possible to come to a conclusion on the level of palliative care development because of the contradictory evidence provided by survey respondents. This highlights one of the challenges in designing and constructing internationally comparable measures. While we think the approach used here is a step forward – similar research in the past has relied largely on reviews of literature and published data – the question of how to resolve conflicting assessments is one that future work of this type will have to address.
There are also some particular difficulties in seeking to measure children’s palliative care in this way – most notably in how it is defined. As it is a complex area, encompassing different types of activity, addressing a variety of different conditions and extending from unborn children to young adulthood, there was potential for respondents to understand the question in different ways, influenced by varying understandings of what constitutes palliative care and who are considered to be ‘children’ in different countries. On this basis, it would be good to see future research employ a fully bespoke global survey of children’s palliative care development, based on a holistic range of indicators, to capture these complexities.
Despite these unavoidable limitations, we think that this work makes a valuable contribution to addressing an important area where there is currently a lack of international evidence. The full paper is published, with open access, by Wellcome Open Research:
As with all the work around the world map, this paper has been a collaborative effort with colleagues from several countries – in this instance, between myself and David Clark from the University of Glasgow, Danny van Steijn and Carlos Centeno at the ATLANTES Global Observatory of Palliative Care, University of Navarra, Stephen Connor of the Worldwide Hospice Palliative Care Alliance, and Mary Ellen MacDonald at McGill University. Also many thanks to Nicole Baur who led the original data collection through the survey in 2017.
Feudtner C, Kang TI, Hexem KR, et al.: Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study. Pediatrics. 2011; 127(6): 1094–1101.
Connor SR, Downing J, Marston J: Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis. J Pain Symptom Manage. 2017; 53(2): 171–177.
Downing J, Powell RA, Marston J, et al.: Children’s palliative care in low- and middle-income countries. Arch Dis Child. 2016; 101(1): 85–90
David is part of the Glasgow End of Life Studies Group, and has been a researcher with the Crichton Institute at the School of Interdisciplinary Studies, University of Glasgow since 2013. Previously he was with the Training and Employment Research Unit where he specialised in local economic development, labour market analysis and evaluations of employment programmes.