Close
Introduction
Medical advances mean that babies born as early as 23 weeks of gestation (around 4 months early) can now survive. Being born at such an early age can involve an uncertain and very difficult time for the baby and their parents. Indeed, having a baby on the neonatal unit whether extremely premature or full term can be very worrying for the parents. For a variety of reasons, parents may be asked to participate in important decisions regarding the care of their baby.
Although it is crucial that parents are involved, we know very little about how doctors and parents come to their choice of actions together or how parents are supported after these decisions have been made. This is particularly important when a baby dies. This process and the support received may have an significant effect on how well parents cope at the time and in the longer term.
Understanding this process could lead to a better understanding for health care professionals of how to support parents, and provide important information for training and provision of care.
Study progress
The study was piloted in 2013, using a mixed-method approach:
Survey: In order to understand the extent of such decisions, a prospective survey was piloted in one neonatal network to explore incidence, outcomes and context of neonatal life support decisions.
Case studies: Approximately 20 families were closely followed. This involved interviewing parents about their experiences, recording their conversations with their consultant and auditing their baby's notes.
We have since then recruited a second site and will recruit one further site, allowing us to focus solely on recording critical care decision-making conversations. These conversations will be used to further identify potentional problems that can arise in these challenging conversations, and ways in which they can be avoided. These findings will then be used to develop training.