Table 1 Glossary

Research Ethics Committees (REC): review applications for research in the NHS and other specific situations and give an opinion about the proposed participant involvement and whether the research is ethical [7].

Patient and Public Involvement (PPI): research being carried out ‘with’ members of the public, rather than ‘to’ or ‘for’ them [26].

Paediatric Intensive Care (PIC): are units specifically providing care for critically ill children from pre term neonates to adolescents [43].

National Institute for Health Research (NIHR): is an organisation funded through the Department of Health to improve the health of the nation through research [83].

NIHR Young Person Advisory Group (YPAG): There are six UK YPAG groups who influence the development and conduct of clinical research through the input of children and young people [60].

Involvement is used to describe service user active involvement in PPI activity (research design and process) [26].

Participation is used to reflect members of the public taking part in a research study as subjects [26].

We have used the term ‘child’ or ‘children’ throughout the article to represent children and young people.