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Introduction
We will closely follow around 20 families across 2 Neonatal Intensive Care Units, in order to develop an in-depth understanding of parents' experiences. This will involve talking to parents about their experiences, audio recording all formal conversations with health care professionals and exploring and analysing the baby's notes.
What does participation involve?
Interview
Parents will be invited to talk about their experiences at the beginning and end of their time on the neonatal unit. The semi structured interview will explore the information and support parents received as well as their experiences of making difficult decisions. Interviews are expected to last between 40 and 60 minutes.
Digital recordings of conversations with consultant
All formal conversations away from the cot side will be audio recorded to explore how decision making is shared between parents and the health care team. All data used in the study will be fully anonymised and recordings will be made available to parents.
Documentation analysis of your baby's notes
To understand the context in which parents are making difficult decisions, the baby's medical notes will be explored. Routine information about the baby's clinical well-being, along with information around family support, will be documented.