Too vulnerable? Successful practices for conducting research with children and young people who have life-limiting or life-threatening illness.

Abstract

Background: A dearth of evidence exists on how to include children and young people in palliative care research.

Aim: We aimed to identify successful practices in involvement, recruitment and data collection with children and young people with life-limiting illness in research.

Design: We synthesised methods from five primary studies from three geographical regions in which children with life-limiting conditions were recruited and interviewed. Using Expert Elicitation Methodology we identified successful practices in the three areas of involvement, recruitment and data collection. We established consensus on methodological challenges and solutions, and developed 10 recommendations for inclusion in research protocols.

Setting: Primary cross-national research in three regions; Middle East (one study), sub-Saharan Africa (one study), Europe (three studies), reporting on studies that recruited N = 244 children aged 5-18 years.

Results: Recommendations are: (1) research team supported by advisory group of children for entire research process; (2) appropriate distress protocol tailored to population; (3) opt not to use term 'palliative care' in study materials if significant distress is a risk; (4) be deliberate in purposive sampling to ensure diagnoses heterogeneity where appropriate; (5) age-appropriate information materials pre-tested by children; (6) clinical teams receive training in recruitment; (7) time to build rapport before starting data collection; (8) consider potential biases and advantages of having parent/carer present during interview; (9) use age-appropriate toys/games during interviews; (10) selfcare for researchers to manage distress.

Conclusions: These recommendations can guide design and conduct of research, enabling children with life-limiting illness to meaningfully participate and express their views.