Better Use of Data to improve parent Satisfaction (BUDS): a mixed method project using quality improvement methodology to improve parent experience of neonatal care

Abstract

Background: Neonatal care is stressful for parents; national survey data show ‘parent satisfaction with receiving clinical information’ is low in England. Neonatal data are not routinely shared with parents; this could improve satisfaction with neonatal care. There is a lack of interventions to improve neonatal data completeness. Aims: To use routinely-recorded data to co-develop, implement, and evaluate a neonatal communication tool with parents. Methods: I undertook a systematic review of interventions to improve parent satisfaction in neonatal care. I process-mapped parent/staff information exchange and parent information needs and co-created a communication tool using routinely-recorded data with parents. I adapted an existing survey and validated it for real-time feedback with cognitive interviews. I piloted the tool for 6 weeks on an NHS neonatal unit using quality improvement Plan-Do- Study-Act cycles, including quantitative and qualitative evaluation (parent satisfaction; staff workload; routinely-recorded data completeness/accuracy; parent/staff interviews). Results: In 32 studies (>2800 parents), 29 satisfaction surveys were used (six validated). 15% studies reported parent co-design; all had high risk of bias. I co-created ‘My Baby’s Summary Report’ (MBSR) with parents; a parent-centred, written, daily infant update derived from routinely-recorded data. I developed the ‘Parent Experiences of Communication in Neonatal Care’ (PEC) survey, the first validated UK real-time neonatal survey. The MBSR increased parent satisfaction with ‘amount of written information received’, parents were highly satisfied with it and more likely to recommend the neonatal unit (’NHS Friends and Family’ question); verbal communication frequency needs unexpectedly increased. Data completeness improved and accuracy was high (>=90%) for most items. Conclusions: Parent satisfaction in neonatal care is inconsistently measured, using unvalidated surveys in studies lacking parent involvement. The MBSR was co-created with parents and evaluated by a real-time validated survey. Parent satisfaction, routinely-recorded data completeness and verbal communication needs increased, supporting MBSR use as an adjunct to verbal communication. Keywords: Parent satisfaction, systematic review, survey, routine data