PS-121 Improving The Delivery Of Neonatal Research - Developing An Information Leaflet For Parents

Abstract

Background Medical and technological developments within Neonatal Care over the last decade have increased the demand for Neonatal Research. ELCH’s Neonatal Unit is highly research active. Parents can be approached for up to 5 or 6 studies. As a consequence, we observed an increased need for a sensitive management of multi-study approaches. Aims As part of a service improvement project to improve the delivery of Neonatal Research, we aimed to develop an information leaflet for parents of infants admitted to the Neonatal Unit. Methods We invited parents to help construct the leaflet involving them in all stages of development of the leaflet and worked closely to ensure multidisciplinary input. We did a survey asking parents to elect their favourite version of the leaflet from three different layouts. Results All parents found the leaflet helpful (n = 18). The preferred version was mostly described as “clear” and “informative”. Parents selected pictures that they would like to see in the leaflet and considered them helpful. The topics they valued the most are represented in Figure 1. Conclusions Parental involvement in all stages of research can present many opportunities for service improvement. Enhanced recruitment rates and project coordination, optimised parental experience of care and increased public awareness are some of the potential advantages. Implementing patient involvement is key in making research more meaningful and in developing successful translational research.