Research priorities for children and young people with life-limiting conditions: MHRC researchers publish review of papers

Posted on 9 November 2018

There is limited high-quality research in many aspects of care for infants, children and young people with life-limiting conditions.

A review by Martin House Research Centre (MHRC) has highighted that there is limited high-quality research in many aspects of care for infants, children and young people with life-limiting conditions. It is important to maximise use of limited resources and there are numerous research prioritisation exercises for a variety of aspects of care or conditions exist within the broad scope of this population.

MHRC researchers have reviewed the existing research priorities. Their systematic scoping review identified 24 research prioritisation exercises and 279 research questions or priority areas for health research. The priorities were mapped in the context in which they were agreed, resulting in the identification of 16 common topic areas, 55 sub-topics and 12 sub-sub-topics. The themes ranged from service delivery to treatments and interventions to communications to emotional and psychological issues.

Published in the international journal Palliative Medicine, the map provides the opportunity for a coherent approach to improving the evidence base for this area of practice. More broadly this scoping review highlights the need for the perspectives of children and young people and their families to be included when undertaking research prioritisation exercises.

Dr Bob Phillips, Chair of the MHRC advisory group said: "What's really good about this is how it highlights how all the consultations have happened and the methods used, and drawn them together in a coherent overview."

View the paper at https://doi.org/10.1177/0269216318800172