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G571(P) Providing information for parents about transitional care available outside the neonatal unit
  1. N Crowley,
  2. P Sidgwick,
  3. E Harrop
  1. Paediatrics, Helen & Douglas House, Oxford, UK


Context Improvement work was performed at a tertiary neonatal unit and a local hospice. This project was designed to improve joint working between these specialties thus allowing greater patient choice in location of care.

Problem The aim of this work was to provide information for parents of life limited neonates with ongoing complex needs about the role of a hospice in transitioning care from the acute hospital setting to their baby going home.

There was no printed information available to give parents about this service and the ongoing community multidisciplinary support that a hospice can provide.

Assessment of problem and analysis of its causes The problem was highlighted by the NHS England service specification for neonatal care and underpinned by recent evidence based guidance from Chelsea and Westminster Hospital and the RCPCH.

Babies were identified on the neonatal unit who were eligible for ongoing transitional care/support from specialist palliative care services and referral numbers were found to be low. A number of staff including consultants and senior nurses from both disciplines were consulted. They were asked whether an information leaflet would be beneficial as a prompt to offer parents hospice care once the acute hospital services are no longer required.

Intervention A leaflet was designed by collaborating with staff at the neonatal unit, the hospice (both clinical, family support and bereavement team) and parents of children who have utilised the services of both the neonatal unit and the hospice.

The leaflet explains the services available for transitional care using case studies of babies who have successfully been discharged home having stayed in the hospice for a period of time.

As well as informing parents, the leaflet was designed to act as a prompt for neonatal staff to inform parents that the hospice can provide transitional and ongoing care for their child if they wished to attend.

Study design Semi structured interviews with staff on the neonatal unit and the hospice setting

Semi structured interviews with parents on the neonatal unit and the hospice setting

Strategy for change Implementation was provided by sending correspondence to members of the neonatal team informing them that the leaflet had been created and was available for use. The palliative care team from the hospice introduced this at the monthly neonatal multidisciplinary team meetings and the grandround.

This project was introduced over a 6 month period.

Measurement of improvement Prospectively an increased number of children were referred following the implementation of the leaflet. Very positive parental feedback was received.

Effects of changes Significantly more babies with life limiting conditions and ongoing complex needs were referred to the hospice team for either transitional care or ongoing support.

Parents of babies eligible for the service were given wider patient choice about attendance.

The only problem encountered was the perception by parents and staff that a hospice can only provide support for babies that are imminently dying. The aim of the leaflet was to alter that perception.

Lessons learnt This work taught us the importance of collaborating with a muiltidisciplinary team when introducing a new resource in order to make it successful.

Message for others That hospices provide an excellent place for the interim care of life limited babies with ongoing complex needs. They can be looked after by their parents with the support of specialist palliative care services during their transition from the acute hospital setting to home.

The leaflet is a useful source of information for neonatal staff informing parents of the services available in their local hospice.

‘Together for Short Lives’ have shown an interest in this project.

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