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A neonatal discharge package to increase parental confidence in caring for their infant

Funding body/stream

NIHR Health Services & Delivery Research

Chief investigator

Professor Peter Fleming

Institution

University of Bristol / University Hospitals Bristol NHS Foundation Trust

Start date & duration

1st August 2012 for 3 years 3 months. 

Amount

£408,485

Summary

In the UK improved survival of very preterm infants means that more babies are being admitted to neonatal care units each year. In the high-tech world of the neonatal unit, parents find it difficult to take on their role. Day to day variations in condition make it difficult early in the infant's stay to predict when a baby will go home. Giving parents a realistic picture of how their infant is progressing and not one that is too much influenced by short term changes in infant conditions, requires staff who are well trained in the use of a patient pathway approach to care.

Recent work in Canada involving education for parents that started early in the neonatal unit stay have shown that parent-infant interactions are enhanced and hospital length of stay reduced. We plan to use this approach modified for use in the UK. We have developed a discharge pack that is similarly parent-focused, as opposed to nurse-led, and includes two parts. The first part is a teaching aide in the form of a parent-friendly neonatal train-to-home; the second is a care pathway, appropriate for the gestational age of their baby, that includes information outlining the major changes and developments that will affect parents and their relationship with their baby whilst in hospital.

The aim is to improve communication between staff and parents soon after the baby is admitted to set a planned date for discharge with the goal of increasing parents' confidence in caring for their babies in hospital and at home, and reducing babies' length of stay in hospital.

The study uses a before and after trial design in 4 Local Neonatal Units in South West England. In the first year we will explore parental confidence in caring for their baby to assess usual care, and in the second year, after implementing the intervention, we will again assess parental confidence. We will also collect data on length of stay, health economic data on healthcare use, and interview some staff and parents to explore their views of the discharge package. 

Impact

The major limitation in capacity for care of low birthweight infants is the lack of intensive care cots. Experience from several neonatal networks suggests that a major limitation to appropriate use of intensive care facilities is inability to move infants from intensive care to high dependency or special care cots because of delays in discharge of infants from these cots. Enabling well-prepared parents to take their infant home sooner would result in a relatively small potential cost saving at the LNU level, but would have a disproportionate effect in improving availability of intensive care cots and allowing the most effective use of scarce resources.

The aim of the planned interventions is to improve parents' self efficacy and confidence in looking after their baby both before and after discharge, to improve parents' experience of having a baby in a neonatal unit, and to reduce the length of stay of preterm infants from local neonatal units (LNU). By improving parental confidence and knowledge we hope to also reduce health and social care utilisation after discharge.

In the past Health Visitors had a major role in providing generic care and support to all infants, particularly those at high risk such as those discharged from neonatal units. The changing role of health visitors from a predominantly health based role to one much more focused on the monitoring, prevention and identification of child neglect and abuse means that many are less experienced in the care of ex-preterm infants, and early care after discharge is commonly based on hospital based community outreach teams. The planned intervention is well adapted to this changing pattern of post discharge care, aiming to improve parents' confidence, knowledge and experience, and allowing continuity of approaches during and after the stay in a neonatal unit.

Our recent survey of senior staff in neonatal units across the UK showed that a more systematic and family-centred approach in the neonatal unit would be welcomed. The 'parent pack' planned for use in the current study has been developed in close collaboration with parents and staff working in several neonatal units. It aims to facilitate family-centred care in the NHS in compliance with NICE guidance [2010], which states that parents are encouraged and supported to be involved in planning and providing care for their baby, that regular communication with clinical staff occurs throughout the care pathway, and that health and social plans are coordinated to facilitate a seamless transition from hospital to home. If this approach can improve parents' confidence, shorten LOS and reduce readmission rates, it will help reduce workloads and facilitate the most appropriate use of scarce manpower resources in neonatal and infant wards.

Many neonatal units run at or above recommended occupancy levels, and thus improved discharge planning may increase parental satisfaction and optimise efficient use of cots / resources, facilitate optimal staff deployment with potential benefits to quality of care. However cost savings can potentially be made with the reduction of unplanned (e.g. A&E) attendances and reduction of missed outpatient appointments together with a reduction in readmission rates. This trial is an organisational initiative for use in LNU to evaluate an approach to service delivery with the aims of improving parents' self efficacy, and reducing LOS and readmission rates. If effective these changes would have major implications in NHS service delivery within 2-3 years.

Dissemination: We will present and discuss the findings of the study with the South West Neonatal Forum which meets twice a year and is attended by clinicians, managers and nurses from across the Western and Peninsula networks. We will also present the findings and discuss them with the newly formed National Neonatal Alliance (with representatives from the British Association of Perinatal Medicine (BAPM), BLISS, Royal Colleges of Obstetrics and Gynaecology, Royal College of Nursing, Royal College of Midwives, and the Neonatal Nurses Association). This alliance has been formed to explore QIPP opportunities and to support national initiatives and so could very rapidly disseminate the findings and support incorporation into practice and delivery of neonatal services.

Research outputs will be published in peer-reviewed journals and presented at national and international conferences. Members of the research team (PJF, JI, PSB, HB) have extensive experience in developing and implementing changes in clinical service provision and running multi-professional training and education activities to effect such changes successfully. A key component in the implementation of the results of this study if shown to be effective will be local, regional and national parents' networks and we will actively involve BLISS and our Parent Advisory Group in this part of the dissemination. 

Patient and public involvement

The discharge pack has been developed with input at every stage from current and past parents of preterm infants. Working with our parent advisors has facilitated the development of our UK version of the Canadian package and the incorporation of specific needs of parents of infants of each gestation. Their comments have influenced the design, wording and graphics of the parent pack (train and associated care pathways). 

We have also established a Parent Advisory Group (PAG) comprising parents who have recent experience of having a baby in neonatal care. The PAG will meet regularly to facilitate the project, comment on the parent information sheets, interview topic guide and dissemination of the results. Two members of the PAG (including the chair of the group,) are members of the Trial Steering committee, which oversees the running of the study.

If the pack is successful in increasing parental confidence for our study population the PAG will play an important supporting role in helping with widespread dissemination and implementation of the discharge pack. 

Link to study website

http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/preparingforhomestudy.html