PremPath v1.0 [CAG Pilot]

• Research type

  Research Study

• Full title

  PremPath: Improving the optimisation and stabilisation of the preterm infant

• IRAS ID

  334199

• Contact name

  Nicola Mackintosh

• Contact email

  nicola.mackintosh@leicester.ac.uk

• Sponsor organisation

  University of Leicester

• Duration of Study in the UK

  1 years, 1 months, 31 days

• Research summary

  Research Summary:
  Aim
  We looked at a pathway of care for premature babies, born before 37 weeks of pregnancy, in England. The pathway has 7 different interventions, designed to give premature babies the best chance of survival, and of being healthy in the long term. Some interventions take place before birth and others after. We looked at how the pathway works in practice, and how to improve it.
  Approach
  We studied how teams work together and care is coordinated locally and regionally. We also looked at how decisions are made and how parents are involved. To do this we:
  • Interviewed network and clinical leads across regions in England;
  • Observed care in four NHS Trusts;
  • Interviewed staff and parents.
  Findings
  Putting the pathway into practice is complex. Regional leaders, local leaders and frontline staff work together to improve how the pathway operates within and between maternity and neonatal services. We found a number of challenges:
  Data: Data is used to improve implementation, but it is not always accurate. IT systems can make things harder, and staff feel the data does not fully reflect their work.
  Coordination: Mothers and babies are often cared for separately. Staff have to manage boundaries between teams, places and systems. Many parents described falling through the gaps. This is distressing and can negatively impact parents’ physical and mental health.
  Parental involvement: It is hard for parents to be involved in their babies’ care and share decisions. Neonatal admission has negative financial, emotional and relational impacts.
  Key conclusions and recommendations
  We recommend short- and medium-term actions to improve:
  • data management
  • coordination of care
  • equity and respectful care
  We suggest further research to:
  • Improve data systems and processes
  • Explore the role of autonomy and shared decision-making within the pathway
  • Agree how well-being and emotional support could be added to the pathway

  Background
  When babies are born premature (before 37 weeks of pregnancy), they are at greater risk of needing neonatal care. The earlier in pregnancy a baby is born, the higher the chance of the baby not surviving or having a longterm illness. There is a specific care pathway to make sure babies who are born prematurely have the best chance of survival and quality of life.

  Aim
  To look at how a pathway of care for babies who are born premature in England is working in practice, and how best to improve it.

  Design and methods
  We will choose four NHS Trusts to be case studies. We will
  1. Look at their documents and procedures
  2. Observe staff caring for babies, mums and families.
  3. Map their care processes
  4. Interview staff, and parents.

  We will create pictures and maps to help visualise journeys, barriers, and critical decision-making points along the pathway.

  Patient and public involvement
  A parent and a representative from Bliss, the charity for premature and sick babies, are members of our project team. We are also working with a parent panel of five parents with experience of having a preterm baby. Parent perspectives have informed study design and will inform data collection and analysis as the project progresses.

  Dissemination and impact
  We will bring together our collaborators, clinicians, professional bodies and policy makers at the end of the project to think about the significance of our findings. We will produce a short animation to share key messages and will publish in academic journals. Our findings will help the people who develop services to know what will improve the quality of care for premature babies long-term.

• REC name

  East Midlands - Leicester South Research Ethics Committee

• REC reference

  24/EM/0005

• Date of REC Opinion

  1 Mar 2024

• REC opinion

  Further Information Favourable Opinion