An open access research article, published on BMC Palliative Care, lists the priorities for global research into children’s palliative care as determined by an International Delphi Study undertaken on behalf of the International Children’s Palliative Care (ICPCN) Scientific Committee. Authoring of this research was undertaken by Julia Downing, Caprice Knapp, Mary Ann Muckaden, Susan Fowler-Kerry and Joan Marston.
In the background to the article the authors describe the urgent need to develop a global evidence base for children’s palliative care (CPC), particularly in resource-limited settings. The authors contend that 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 found only five peer-reviewed papers on CPC. This lack of evidence is not confined to this part of the world, 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 the authors believe that without understanding the priorities for research in CPC organisations, many struggle with how to allocate scarce resources to research.
By means of two rounds of a Delphi study process, undertaken between October 2012 and February 2013, global research priorities for CPC were identified. It is hoped that this study will provide a much needed starting place for the allocation of funds and building research infrastructure and researchers working in the field of CPC are encouraged to use their unique position to collaborate and produce the necessary evidence.
Results of the research
Results of the study have been reported on according to the the CHERRIES statement (Checklist for Reporting Results of Internet E-Surveys)
for web-based surveys. An initial list of 165 areas for research within CPC was refined to 70 through content analysis prior to the first round of the Delphi process. Results from the first round of the Delphi process were reviewed and analysed and 17 questions which reached consensus were excluded from the second Delphi round. The second round of the process resulted in 62 areas for research which were graded on a scale of priority. In this round, 9 areas for research reached consensus, making a total of 26 areas in total from both Delphi rounds. As consensus had been reached on the identification of several priorities, no additional rounds were conducted.
While acknowledging some limitations the results of the study have identified the following areas as priorities in research:
- Children’s understanding of death and dying
- Managing pain in children where there is no morphine
- Funding for and the cost of CPC
- Training needs for CPC
- Assessment of the WHO tw0-step analgesic ladder for pain management in children
- Pain management for non-cancer children with chronic life-threatening illness
- Interventions and models of care for CPC
- Measuring outcomes of care
- Integration of CPC into core health curriculum
- Use of opioids in children
- The global need for CPC
- Ethical issues in CPC
- Children’s rights and palliative care
- Understanding the needs of children and their families
- Communicating with children and their families
- Assessment of government support for CPC
- Assessment and management of different symptoms
- Models of education and training for CPC.
- Use of adjuvant medicines to relieve pain
- Non-pharmacological management of pain and other distressing symptoms
- Perinatal palliative care
- Validation of pain assessment tools in different settings / ages
- Models of providing psychological care in CPC
- The impact of education programmes on the provision of CPC
- The challenges to CPC provision
- The illness experience for children