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

BMC Palliative Care

Research Article

Joan Marston¹  Julia Downing²  Caprice Knapp³  Mary Ann Muckaden⁴  Susan Fowler-Kerry⁵ 

[1] International Children’s Palliative Care Network, Assagay, South Africa;International Children’s Palliative Care Network, Assagay, South Africa;Makerere University, PO Box 7072, Kampala, Uganda;Pennsylvania State University, University Park, 16801, State College, PA, USA;Tata Memorial Hospital, Mumbai, Maharashtra, India;University of Saskatchewan, Saskatoon, SK, Canada;

关键词: International;    Delphi study;    Children’s palliative care;    Research;   

DOI  :  10.1186/s12904-015-0031-1

 received in 2015-03-04, accepted in 2015-07-16,  发布年份 2015

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© Downing et al. 2015