Paediatric patient family engagement with clinical research at a tertiary care paediatric hospital

BACKGROUND: Subject recruitment is essential for conducting clinical research; however, there are very few studies evaluating research uptake by families in a paediatric setting. OBJECTIVES: To determine how frequently paediatric patients and their families receiving care at a tertiary paediatric hospital participated in research. The secondary objectives were to explore factors that influence patient families' decisions to participate in research and how they perceived their experiences. METHODS: A cross-sectional study surveying families of children receiving care in a sample of clinical areas at a tertiary care paediatric hospital in British Columbia was conducted. A self-administered questionnaire was used, and was facilitated by trained interviewers. Descriptive statistics were used to report the proportion of patient families that have previously been invited to participate in research and, among these, the proportion who had agreed to participate. Patient families' perceptions of research and their past experiences therein were also reported. RESULTS: A total of 657 families were approached, of which 543 were enrolled (82.6% response rate). Among the 439 families that had visited the hospital previously, 114 (26.0%) had been invited to participate in research and 99 (87%) had consented to participate. Of these 99 families, only one had a negative experience, and 84 (85%) of these participant families were at least somewhat likely to participate in research again in the future. CONCLUSIONS: Only one-quarter of families that had previously visited the hospital had been invited to participate in a research project. Of the families approached previously, there was a high rate of participation and willingness to participate in future research.