What is it about?
Lots of people have already carried out exercises to find out where research is needed to help improve the care of children and young people who have life limiting conditions. We collected together all these exercises to create an over view of the research priorities identified. We found 24 research prioritisation exercises containing 279 research questions - which are 'mapped' in our paper. The themes ranged from service delivery to treatments and interventions to communications to emotional and psychological issues.
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Why is it important?
We need to fill the gaps in high-quality research evidence to support many aspects of care for infants, children and young people with life-limiting conditions. But we also need to use our limited resources wisely. Picking topics and areas shown to be important to children with life limiting conditions and all those who care for them, including parents, carers, and health professionals, is a good starting point.
Perspectives
The lack of involvement by children, young people and their families in identifying what was important to them for a research agenda was striking. Sometimes this looked as if it had never even been considered, and where it had, despite best efforts they had been unable to get this group involved. I hope that the impact of this review is two fold. That it helps support a coherent approach to carrying out much needed research in this population. And secondly it prompts the considered inclusion of children and young people with life limiting conditions and their families in all aspects of the research agenda.
Dr Alison Booth
University of York
Read the Original
This page is a summary of: Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents and all those who care for them: A systematic scoping review, Palliative Medicine, November 2018, SAGE Publications,
DOI: 10.1177/0269216318800172.
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