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Priorities for global research into children's palliative care: results of an International Delphi Study
Julia Downing1,2, Caprice Knapp3, Mary Ann Muckaden4
1International Children's Palliative Care Network, Assagay, South Africa. julia.downing792@btinternet.com.
Insights
Global research priorities for children's palliative care (CPC) were identified. Key areas include pain management without morphine, funding, training, and understanding childhood death, particularly in resource-limited settings.
Area of Science:
- Pediatrics
- Palliative Care
- Global Health Research
Background:
- There is a critical need for evidence-based children's palliative care (CPC) globally, especially in resource-limited settings.
- Existing CPC research is insufficient, particularly in regions with the highest disease burden like sub-Saharan Africa.
- Specific research gaps exist in managing children's pain and other symptoms.
Purpose of the Study:
- To identify global research priorities for children's palliative care (CPC).
- To guide resource allocation for CPC research initiatives worldwide.
- To inform policy, education, and infrastructure development in CPC.
Main Methods:
- A Delphi study was conducted by the International Children's Palliative Care Network (ICPCN) from October 2012 to February 2013.
- A web-based questionnaire was used for two rounds of consensus-building on 70 suggested research areas.
- 153 participants in round 1 and 95 in round 2, including stakeholders from sub-Saharan Africa and Europe, completed the survey.
Main Results:
- Consensus was reached on 26 research areas for children's palliative care.
- The top five priorities identified were: children's understanding of death and dying, managing pain without morphine, funding, training, and assessing the WHO two-step analgesic ladder.
Conclusions:
- The study identified crucial research priorities for children's palliative care globally.
- These findings provide a foundation for allocating funds and developing research infrastructure.
- Collaboration among CPC researchers is essential to generate needed evidence.
Background:
There 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.
Method:
The 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.
Results:
A 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.
Conclusions:
Information 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.
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