6344 What matters to parents? A qualitative study looking at the experiences and issues that matter most to parents of babies admitted to a tertiary neonatal unit

Objectives There is evidence to show that increased parental involvement for babies receiving neonatal care has a beneficial effect on neonatal outcomes.¹ We focussed on the parental voice, giving parents the opportunity to tell us what matters to them while their baby is on the neonatal unit. This information can be used to improve parents' experiences, building a better family outcome. Methods We conducted a parent focus group to delineate interview questions. We designed a parent interview schedule using open questions, and a model of Appreciative Inquiry.² We undertook purposive sampling. Interviews were recorded and transcribed with consent and analysed using thematic analysis.³ Results We interviewed 7 couples and 1 solo parent. We coded responses using an iterative deductive process, and generated 3 themes: Trust: Trust between parents and the care team was important to parents, underpinned by honest communication. 'And trust is a big part of this. It really is there are people putting it bluntly that we would trust our children with and there are people putting it bluntly again, I do not trust our children with.' The neonatal journey: Parents told us that the first few days are hard, and often feel surreal. Over time, parents get involved and start to feel like parents, and become experts on their own babies. 'In the beginning, it feels like he's the hospital's baby, he's not my baby. And then as time's gone on it then sort of – for me, it sort of changed to he's a hospital baby, not the hospital's.' Inclusion, connection and power: Parents told us that the environment and structures of the neonatal unit increased the power imbalance between the care team and parents and impacted on their connection with their babies. 'they're our babies. They're our children, right? They're no one else's, they're being cared for in here but they're our children. And I think sometimes, that gets a bit sort of missed.' Conclusion We were given a rich and honest insight into the neonatal experience for parents. The key way to build relationships with parents is to be open with detailed information about their baby. 'More is more'. Parents said they want to hear more about their baby. Parents become expert in their baby's condition they would like this to be reflected in their role on the unit, with a collaborative approach with the care teams looking after their baby. References O'Brien K, Robson K, Bracht M, Cruz M, Lui K, Alvaro R, da Silva O, Monterrosa L, Narvey M, Ng E, Soraisham A, Ye XY, Mirea L, Tarnow-Mordi W, Lee SK. Effectiveness of family integrated care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial. FICare Study Group and FICare Parent Advisory Board 2018. Cooperrider, David L, Whitney, Diana and Stavros, Jacqueline M. Appreciative Inquiry Handbook For Leaders of Change 2008. Virginia and Clarke. Thematic analysis: a practical guide braun, Victoria 2022.