Priorities for global research into children’s palliative care: results of an International Delphi Study

Abstract

BackgroundThere is an urgent need to develop an evidence base for children’s palliative care (CPC) globally, and in particular in resource-limited settings. Whilst the volume of CPC research has increased in the last decade, it has not been focused on countries where the burden of disease is highest. For example, a review of CPC literature in sub Saharan Africa (SSA) found only five peer-reviewed papers on CPC. This lack of evidence is not confined to SSA, but can be seen globally in specific areas, such as an insufficient research and evidence base on the treatment of pain and other symptoms in children. This need for an evidence base for CPC has been recognised for some time, however without understanding the priorities for research in CPC organisations, many struggle with how to allocate scarce resources to research.MethodThe International Children’s Palliative Care Network (ICPCN) undertook a Delphi study between October 2012 and February 2013 in order to identify the global research priorities for CPC. Members of the ICPCN Scientific Committee formed a project working group and were asked to suggest areas of research that they considered to be important. The list of 70 areas for research was put through two rounds of the Delphi process via a web-based questionnaire. ICPCN members and affiliated stakeholders (n = 153 from round 1 and n = 95 from round 2) completed the survey. Participants from SSA were the second largest group of respondents (28.1 % round 1, 24.2 % round 2) followed by Europe.ResultsA list of 26 research areas reached consensus. The top five priorities were: Children’s understanding of death and dying; Managing pain in children where there is no morphine; Funding; Training; and Assessment of the WHO two-step analgesic ladder for pain management in children.ConclusionsInformation from this study is important for policy makers, educators, advocates, funding agencies, and governments. Priorities for research pertinent to CPC throughout the world have been identified. This provides a much needed starting place for the allocation of funds and building research infrastructure. Researchers working in CPC are in a unique position to collaborate and produce the evidence that is needed.

Children's palliative care in low- and middle-income countries

“…Priorities for global CPC research have been developed by the ICPCN,66 with the leading themes being children's understanding of death and dying, managing pain in the absence of morphine, CPC funding, CPC training needs and assessment of the WHO two-step analgesic ladder for pain management. While these priorities are global, they were echoed in, and many arose from, LMICs—for example, the need to undertake research in how to manage pain when there is no morphine available—and research in these areas across LMICs would contribute greatly to the evidence base and provision of quality CPC.…”

Research priority setting in childhood chronic disease: a systematic review

“…In one palliative care study, the top priority was ‘ Children’s understanding of death and dying ’,69while an epilepsy study prioritised ‘ What do parents and providers understand about the seriousness of seizures and the need to control them as soon as possible? ’ 89.…”

Paediatric palliative care and intellectual disability—A unique context

“…In particular, research is needed in the areas of symptom management and care coordination, communication and decision making, psychosocial and bereavement support and education/training. Children's understanding of death and dying is another suggested focus of further research (Baker et al., ; Downing, Knapp, Muckaden, Fowler‐Kerry, & Marston, ) and is particularly important in the context of intellectual disability.…”