Priorities for Global Research into Children's Palliative Care: Results of an International Delphi Study

Downing et al. (2015) full text summary PDF

For which topic were research priorities identified?

children's palliative care

In which location was the research priority setting conducted?

international

Why was it conducted at all?

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.

What was the objective?

to identify the global research priorities for children's palliative care

What was the outcome?

a ranking list of 10 research areas

How long did the research prioritization take?

October 2012 - January 2013

Which methods were used to identify research priorities?

Delphi

How were the priorities for research identified exactly?

Step 1: members of working group were asked to suggest areas of research that they considered to be important in children's palliative care based on the following criteria: i. Research is urgently needed in that area. ii. There is a gap in the existing evidence in the area, or there is no evidence in existence. iii. Research in the area will impact, either directly or indirectly, on the quality of life of children requiring palliative care and their families, initial list of 165 areas. Step 2: data processing: content analysis, similar responses grouped together, resulting in 70 areas. Step 3: content analysis emailed to working group who commented on the analysis and agreed on the items to go forward. Step 4: Delphi round 1: list of 70 research priorities, participants asked to rate. Step 5: Delphi round 2: participants were asked to re-rate based on group ratings of round 1

Which stakeholders took part?

International Children's Palliative Care Network members: doctors, clinical officers, nurses, priests, social workers, teachers. Delphi round 1: 153 participants. Delphi round 2: 95 participants.

How were stakeholders recruited?

The survey was sent to all ICPCN members and ICPCN board members, who were also asked to recommend individuals in their countries/regions that could complete the survey. This sampling technique was used with the goal of having a geographically balanced group of respondents, including participants from developed and developing countries.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.