Every year approximately one in seven babies are admitted for specialist neonatal care after birth in the UK (NNAP, 2015). Admission rates have been increasing over time, with more babies than ever surviving the initial period after birth and beyond. Some of these babies will have been born prematurely and need support to breathe, develop and grow. Others will have been born nearer to term and admitted with specific health problems such as jaundice or infections.
This project will focus on babies who were born very preterm (<32 weeks gestational age or more than two months earlier than they should have been). Over the last ten to twenty years, the survival of babies born very preterm has improved dramatically. As of 2014, approximately 91% of very preterm babies survive (Santhakumaran et al, 2017), although this varies depending on their gestational age at birth. Survival of babies born at 24 weeks is ~50% and this increases to ~98% for babies born at 31 weeks gestational age (Manktelow et al, 2013). Whilst survival has improved, some of these children live with lifelong health problems that require ongoing care and support (Moore et al, 2012).
On discharge from neonatal care, 25% of parents say they do not feel prepared (Walston et al, 2011). When discharge occurs, the National Institute for Health and Care Excellence (NICE) recommends that a coordinated transition to neonatal community care should be provided. However, the only report in this area noted only 45% of hospitals had a dedicated community care team, and of these only 47% had weekend cover and many parents reported inadequate support in the community (Picker Institute, 2011). Other countries have different approaches to care and discharge, for example in Sweden (Ortenstrand et al, 2010) families are able to stay on the neonatal unit with their baby from admission to discharge, potentially helping them feel prepared for discharge home.
After discharge home, if a baby needs further support they will not return to the neonatal unit, which their parents are familiar with. Instead they will receive care via paediatric services such as in children’s Accident and Emergency; on children’s wards or if a child is critically ill, they will be admitted to paediatric intensive care. Over the last ten years the number of admissions to paediatric intensive care has increased beyond that which we would have expected from the changing birth rate alone (Davis et al, 2018). It is unclear why this has happened, although it could be that more children surviving neonatal care have lifelong morbidities requiring care throughout childhood.
There is very limited contemporary data surrounding what happens around the time of discharge from neonatal care, including the support provided to families in the community and the impact of potential readmission to healthcare services via paediatric care. This PhD will focus on understanding how best we can support parents and families to navigate these transitions between healthcare services.
The focus of this PhD can be flexible depending on the interests and expertise of the student. The PhD will fit within the broad topic area of the support provided to babies and their families during the transition from neonatal care to home and potentially to paediatric care. Examples of PhD projects include, but are not limited to:
- Investigating the support and information provided before discharge from neonatal care and the extent to which this is tailored to and meets the needs of parent’s from different socio-demographic backgrounds
- Identifying what support is available and most helpful for parents of children who were in the neonatal unit as they transition home and once they are home in the community. At the moment it is unclear what support is provided and whether this is fit for purpose
- Investigating how parents access support when their baby potentially becomes unwell again (e.g. support from GP, calls to neonatal unit, A&E attendance) and whether this is sufficient
- Parents’ experiences of escalating care when their baby becomes potentially unwell while at home (e.g. support from GP, calls to neonatal unit, A&E attendance) and barriers/enablers to timely/effective response