There is little information available regarding the frequency of difficult decision making on the neonatal unit, how these decisions are made or the outcomes for infants following decisions. A pilot survey will therefore be undertaken within 2 neonatal networks to explore the incidence and outcomes of neonatal decisions, with a view to refine and disseminate the survey nationally following evaluation.
Completing the survey
The survey will be hosted by a secure system called REDCap. Health Care Professionals will be asked to contact the research team when they identify a baby who meets the inclusion criteria. They will then be sent an individualized link to the survey, where they can record anonymous information about the baby's care. Data collection will be prospective and over a period of 9 months.
Infants will be eligible for the study if they meet either of the following inclusion criteria:
- Any infant where a discussion has been had with the parents or between the health care team only, either antenatally or postnatally, around the withdrawal, withholding (including a DNR-Order) of life sustaining treatment following the live birth of the infant
- Any infant who died after live birth, both in the neonatal unit and labour unit