Table 1.

Research aims of reviewed studies.

Research aim	Number of studies (%)	Definition
Evaluating an intervention	71 (33)	Studies aiming to test the efficacy or safety of a treatment, medical intervention (n = 59) or non-medical intervention (n = 12), including randomized and non-randomized trials
Assessing quality of life	22 (10)	Assessments of quality of life of CYP with LLC/LTI and/or their family members
Observing the course of illness	36 (17)	Studies monitoring the course of an illness without providing additional interventions other than standard care
Exploring views and perspectives	60 (28)	Qualitative studies exploring experiences, views or perspectives of CYP with LLC/LTI and/or their family members
Evaluating current practice	26 (12)	Evaluations of current non-medical practice or research-related practice, from the perspective of CYP with LLC/LTI and/or their family members

CYP: children and young people; LLC: life-limiting conditions; LTI: life-threatening illnesses.