The authors declare that they have no competing interests.
JD was the PI for the study, was involved in study design, data collection, analysis and writing up of the study. CK and SFK helped in the study design and data collection tool as a Co-Chair of the ICPCN Scientific Committee as well as contributing to the manuscript writing. MM and JM were part of the working group for the study and contributed to the design and data collection tool. All authors reviewed the paper and contributed to the final version. All authors read and approved the final manuscript.
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.
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.
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.
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.
Fraser LK, Miller M, Aldridge J, McKinney PA, Parslow RD, Hain R. Life limiting and life threatening conditions in children and young people in the United Kingdom; national and regional prevalence in relation to socioeconomic status and ethnicity. Final report for Children’s Hospice UK. October 2011: Division of Epidemiology, University of Leeds; 2011.
Downing J, Marston J, Boucher S. Children’s palliative care in Africa. The Australian Journal of Cancer Nursing. 2010;11(2):3–10.
ICPCN. ICPCN website. www.icpcn.org. Accessed July 2015.
World Health Assembly. Strengthening of palliative care as a component of integrated treatment within the continuum of care. 134 th Session of the World Health Assembly. EB134.R7 May 2014.
Rajagopal MR, Mazza D, Lipman AG, editors. Pain and Palliative Care in the Developing World and Marginalized Populations: A Global Challenge. Haworth Press; 2003.
Bruera E, De Lima L, Wenk R, Farr W, editors. Palliative Care in the Developing World: Principles and Practice. Houston: IAHPC Press; 2004.
Adoption of a declaration to develop a global palliative care research initiative. Progress in Palliative Care. 2006; 14(5):215–17.
Mpanga Sebuyira L, Moore J. Palliative care: the 21 st Century challenge. Health Exchange. 2003.
Harding R, Sherr L, Albertyn R. The status of paediatric palliative care in sub-Saharan Africa: An Appraisal. London: The Diana Princess of Wales Memorial Fund; 2010.
Chambers L, Boucher S, Downing J, Mwangi-Powell F, Kraft S. The International Children’s Palliative Care Network (ICPC): a global overview. In: Pfund R, Fowler-Kerry S, editors. Perspectives on Palliative Care for Children and Young People: A Global Discourse. Oxford.: Radcliffe Publishing; 2010.
ICPCN. Declaration of Cape Town, www.icpcn.org/the-icpcn-declaration-of-cape-town/. Accessed July 2015.
Malcolm C, Knighting K, Forbat L, Kearney N. An Assessment to Identify the Future Research Priorities for the Children’s Hospice Association Scotland. CHAS; 2008.
Steele R, Bosma H, Fletcher Johnson M, Caddell S, Davies B, Siden H, et al. Research priorities in pediatric palliative care: a Delphi study. J Palliat Care. 2008;24(2):229–39. PubMed
Baker JN, Levine DR, Hinds PS, Weaver MS, Cunnigham MJ, Johnson L, et al. Research Priorities in Pediatric Palliative Care. J Pediatr. 2015; [Epub ahead of print].
Rowe G, Wright G. Expert Opinions in Forecasting. Role of the Delphi Technique. In: Armstrong JS, editor. Principles of Forecasting: A Handbook of Researchers and Practitioners. Boston: Kluwer Academic Publishers; 2001.
Moscovice L, Armstrong P, Shortell S. Health services research for decision-makers: the use of the Delphi technique to determine health priorities. J Health Polit Policy Law. 1988;2:388–410. CrossRef
Oranga HM, Nordberg E. The Delphi panel method for generating health information. Health Policy Plan. 1993;8:405–12. CrossRef
Fearon K, Strasser F, Anker SD, Bosaeus I, Bruera E, Fainsinger RL, et al. Definition and classification of cancer cachexia: an international consensus. Lancet Oncol 2011. 2011;12(5):489–95. CrossRef
Marston J, Boucher S, Robbertze M. Toolkit for Children’s Palliative Care in Africa. South Africa: HPCA; 2008.
Whitman N. The Committee meeting alternative: using the Delphi technique. J Nurs Admin. 1990;20(7/8):30–6.
Sumison T. The Delphi technique: an adaptive research tool. Br J Occup Ther. 1998;61(4):153–6. CrossRef
Keeney S, Hasson F, McKenna H. The Delphi Technique in Nursing and Health Research. Oxford, UK: Wiley-Blackwell; 2011. CrossRef
World Health Organisation. WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses. Geneva: WHO; 2012.
Milani B, Magrini N, Gray A, Wiffen P, Scholten W. WHO calls for targeted research on the pharmacological treatment of persisting pain in children with medical illnesses. Evid Base Child Health. 2011;6:1017–20. CrossRef
Bluebond-Langner M, DeCicco, Schwallie MN. Children’s views of death. In: Goldman R, Hain R, Liben S, editors. Oxford Textbook of Palliative Care for Children. Oxford: Oxford University Press; 2012. p. 68–77. CrossRef
Bluebond-Langner M. Meanings of Death to children. In: Feifel H, editor. New Meanings of Death. New York: Mc-Graw-Hill; 1976. p. 47–66.
Kenyon BL. Current research in children’s conceptions of death: a critical review. Omega J Death Dying. 2001;43(1):63–91. CrossRef
Anthony Z, Bhana K. An exploratory study of Muslim girls’ understanding of death. Omega J Death Dying. 1989;19(3):215–7. CrossRef
Brent SB, Speece MW, Lin C, Dong Q, Yang C. The development of the concept of death among Chinese and US children 3–17 years of age: from binary to ’fuzzy’ concepts? Omega J Death Dying. 1996;33(1):67–83. CrossRef
- Priorities for global research into children’s palliative care: results of an International Delphi Study
Mary Ann Muckaden
on behalf of the ICPCN Scientific Committee
- BioMed Central
Neu im Fachgebiet AINS
Meistgelesene Bücher aus dem Fachgebiet AINS
Mail Icon II