The organisation of neonatal intensive care
The survival of preterm infants has improved significantly over recent years, with survival rates of 91% for infants born at 28 weeks’ gestation and 98% at 33 weeks’ gestation.1 This improved survival has resulted in more infants requiring intensive or high-dependency care for longer periods, and increasing the pressure on the scarce resources of neonatal care.
The improved survival rate has brought to the fore the problems associated with infant discharge home after long periods in hospital. It has also raised awareness of the particular needs of such infants and their families in coping successfully with the transition from hospital to home. This transition and community-based follow-up care is an increasing focus of investigation, with attempts to facilitate the processes and reduce the adverse effects of recurrent emergency health-care contacts, which commonly lead to hospital readmission.2,3 Relatively little attention has been given to the impact and potential importance of this aspect of neonatal care, despite the huge volume of published literature on improving outcomes for preterm infants.4 Improved education and information provided to families of preterm infants might improve the appropriate use of hospital and community health services after discharge, and reduce the numbers of babies readmitted to hospital,5 although few studies have shown such a relationship.
In the UK, neonatal care is delivered in three types of neonatal unit working together in managed clinical networks. Neonatal intensive care units (NICUs) – formerly referred to as level III neonatal units – provide the full range of intensive care for infants with complex problems, including extreme prematurity drawn from a wide geographical area. They also provide high-dependency and special care services for their local population (similar to LNUs). NICUs commonly function as regional referral centres for infants with complex conditions, and may be linked to other tertiary infant health-care services, including paediatric cardiology, paediatric surgery and other specialist paediatric services. LNUs provide high-dependency care, special care and limited intensive care for their own catchment population. They generally provide the majority of care for infants born at ≥ 27 weeks’ gestation. Special care units provide special care for only their local population.6
Neonatal care is an expensive and limited health resource, with prematurely born infants occupying the majority of neonatal hospital bed-days.7 The median LOS for infants born at < 34 weeks’ gestation in South West England LNUs during 2010 was 38 days [audit figures from the ‘Badger’ neonatal data collection system (BadgerNet) – a live patient data management system used by the majority of neonatal units in the UK].
Approximately 70,000 babies born in England each year (10% of all births) require additional medical care after delivery and are admitted to neonatal units.8 Infants requiring neonatal unit admission are categorised as needing intensive care, high-dependency care or special care. The British Association of Perinatal Medicine (BAPM) have defined the care categories based on the therapeutic and monitoring needs of the baby.9 Of the 70,000 infants admitted for neonatal care annually, 19,500 are admitted to intensive care.8 The 2010 BAPM standards recommend that one nurse should provide care to one infant in intensive care, two infants in high-dependency care or four infants in special care.10 The cost of care is determined mainly by nursing-staff requirements, with intensive care thus costing more than high-dependency or special care. For most infants of < 34 weeks’ gestation, a relatively short period in intensive care is followed by a much longer period in high-dependency care and then special care before discharge home.
The economic cost of neonatal care
Petrou and Khan11 have recently reviewed studies conducting predictive economic modelling of the economic consequences (economic burden) of moderate and late preterm birth. Costs associated with initial hospitalisation were estimated from 10 studies. Mean hospital costs varied between US$1334 for a surviving term infant and US$32,153 for a surviving moderate or late preterm infant (US$ 2008 prices). Studies varied substantially in terms of their methodology, sample size and location. Costs following initial hospital discharge were estimated from 13 studies.11 Of these studies, 11 focused on a funder perspective, looking at hospital costs after discharge, and excluded costs to other economic sectors, families and carers, and society. Petrou and Khan11 argue that these costs, and the indirect costs associated with days off work and lost productivity, are potentially large in comparison with the perspective for costs taken in most studies. This suggests that most identified studies underestimate the economic cost burden of medium and late preterm babies in the immediate period after discharge. Two studies12,13 within the Petrou and Khan review took a broad perspective on the full range of costs associated with initial hospital discharge and included funder, families and carers, and society. They demonstrated a differential range in cost estimates of 1.3- to almost 10-fold difference between those infants born at between 32 and 36 weeks’ gestation and those born at term.11
Johnston et al.14 recently estimated the economic burden of prematurity in Canada by describing and characterising the economic cost burden of premature birth over the first 2 years of life. They accessed high-quality and comprehensive data to populate the parameters of the Markov state–transition decision model and included resource use, direct medical costs, parental out-of-pocket expenses, education costs and mortality.13 The cost per infant from discharge to age 2 years ranged from CA$9280 to CA$2228 for early preterm births of < 28 weeks’ gestation to late preterm births of 33–36 weeks’ gestation, and total economic cost from discharge to age 2 years was CA$94,081,058 (n = 27,308). They estimated the average number of inpatient hospital days and associated standard error (SE), outpatient costs, and associated indirect costs incurred due to lost productivity by caregivers of preterm infants from discharge to age 2 years. Mean inpatient days [standard deviation (SD)] from discharge to age 2 years were 17.5 (3.32) days, 8.75 (1.27) days and 2.40 (0.17) days for early, moderate and late preterm infants, respectively. Outpatient mean costs for the same groups were CA$2403 (CA$223), CA$1453 (CA$103) and CA$734 (CA$13) respectively. These findings provide a useful basis for this current study for comparison, albeit the period after discharge in our study was only 8 weeks, although it is likely that the consequences of improved parental confidence in caring for their infant will be most easily seen in the first few weeks after discharge, a period during which collection of detailed information from parents is least difficult. The published studies outlined above emphasise the importance of accurate recording of inpatient days post discharge and inclusion of costs associated with emergency department (ED) visits, but, to date, there is very little evidence for the costs related to post-discharge emergency admission of preterm infants.
The average LNU cost in the UK for each very-low-birthweight baby (birthweight of < 1500 g, which is the mean birthweight at 30 weeks’ gestation) is > £13,000. Any increase in parental confidence to care for their infant at this stage could reduce their LOS, and possibly reduce health-care resource use after discharge, making potentially significant health-care savings.11
The need for discharge planning
Preterm infants of gestational ages 27–33 weeks, inclusive, have a > 90% probability of survival but usually spend a prolonged period in a LNU. Their progress is relatively predictable, which makes a discharge planning process easier because outcomes are anticipated, and parents may be informed ahead of time about expected events and changes over time. Infants born more prematurely will usually be born in a NICU or be transferred to one soon after birth. They will spend a considerable period there before either being transferred to a LNU or discharged directly home.
Infants born at ≥ 33 weeks’ gestation, who develop serious medical problems or have complex anomalies or conditions (e.g. severe intrapartum asphyxia), have extremely variable LOS and a need for tertiary NICU facilities. The range of conditions and the very wide range of possible outcomes, in terms of in-hospital clinical course, make infants outside the 27–33 weeks’ gestation range much less suitable for anticipatory care planning as a group.
The capacity for care of low-birthweight infants is limited by the lack of intensive care cots in NICUs and LNUs. Experience from several UK neonatal networks suggests that moving infants from intensive care to high-dependency or special care cots is a major limitation to the appropriate use of intensive care. This is caused by delays in discharging infants from high-dependency/special care cots. A relatively small reduction in special care or high-dependency care LOS provides a relatively small cost saving, but has a disproportionately greater effect in improving intensive care cot availability and allowing the most effective use of scarce resources.
In the UK, individual health visitors (HVs) are routinely allocated to all infants soon after birth. They carry out a support, advisory and monitoring role for preterm infants after discharge from hospital, which is an important component of routine health care. Changes to NHS workforce planning and commissioning processes have altered HV workload patterns and changed their involvement with mothers and preterm babies.15 HVs have shifted from providing a generic health promotion/maintenance service for all infants to a focused role concentrating on families at highest risk, namely monitoring, preventing and identifying child neglect and abuse. In many areas this role change has been accompanied by a significant reduction in overall HV numbers, and a loss of expertise in the care and support of preterm infants. This has led many LNUs and NICUs to develop hospital-based outreach teams to provide support, advice and monitoring to families of preterm infants for several weeks after discharge. They also address some of the parents’ psychological and practical needs with individualised support and care programmes. Our unpublished survey of UK neonatal units in 2010 showed the importance that staff attached to having post-discharge care of preterm infants co-ordinated by a team with knowledge and experience of hospital neonatal care.
The importance of involving parents in the discharge planning process
Parents with preterm babies in a neonatal care unit have particular psychological and practical needs, which may be met with individualised developmental and behavioural care programmes.16–19 Moyer et al.5 highlight the need to capture and report which types of interventions might support a multidimensional approach to transition from neonatal units to home for this group of infants.
Evidence indicates that early discharge programmes and integrated health-care approaches in neonatal units substantially shorten LOS without increasing health resource use. This approach complements strategies used in adult health-care settings, for which the discharge process is a key part of the patient experience. Hesselink et al.20 report on a programme to improve adult health-care transitions from hospital to primary care across five European countries. They identified barriers to, and facilitators of, these transitions, which include low prioritisation of discharge consultations by health-care teams owing to busy workloads, insufficient preparation for going home, care at home not meeting individual requirements, and a range of discharge mechanisms from instructing patients and their families to shared decision-making. They conclude that patient and family involvement when preparing for home is determined by the extent to which health teams are patient focused and build discharge around patient wishes, needs and abilities. Further evidence suggests that involving patient carers in patient treatment, and setting provisional discharge dates early in the hospital stay, motivates and prepares them for discharge.7 When the patient is a child, in this case a preterm baby, involvement and support of the mother, the father and other family members is of vital importance.
The POPPY (Parents of Premature babies Project) systematic review and report of parental experience described the key elements of family-centred care in neonatal units.21 It found that transition between different levels of care, including hospital to home, was difficult for parents; families valued consistent communication, support in developing readiness for home and improved discharge information when making the transition home.21 A number of possible cost benefits include reduction in readmission to hospital; reduction in non-scheduled attendance at EDs; increase in attendance at scheduled outpatient appointments after discharge; and reduction in unscheduled use of community health resources, in addition to improving parental confidence and reduced LOS. A risk factor for increased use of health services is parental perception of prematurely born infant vulnerability.22
The transition from the LNU to home involves a complex process of adaptation by parents and systematic multidisciplinary approaches to families.23 Discharge home needs to be planned, and families need to be supported by preparation, overnight stays in the unit, HV contact details, and having home visiting/outreach in place. Discharge planning, and the way in which discharge and adjustment to home takes place, are key elements in supporting this transition, especially when vulnerable babies have been very sick. In 2010, we contacted neonatal units across the UK to gain insight into existing discharge practice. This indicated that all participating units had nurse-led documentation, and existing discharge processes were rarely planned and were mainly reactive. These findings mirror Redshaw and Hamilton’s findings24 that family-centred care is inconsistent, despite being emphasised in Department of Health Neonatal Toolkit documents6 and National Institute for Health and Care Excellence (NICE) guidance.25 Discharge planning has been shown to work best when it is mutually shared by neonatal unit teams and families.3
Understanding and improving the discharge planning process for parents and their infants in neonatal units: the importance of parental confidence
McGrath3 noted that parents of infants in neonatal units focus on discharge and the care they need to deliver to facilitate this, even when their infants are in the early and acute phase of care. Parents’ ability to take in and retain complex and frequently changing messages from neonatal health professionals is limited under conditions of stress and anxiety during their baby’s stay on the neonatal unit. Few messages are perceived to be relevant to what parents need to learn and do on discharge from hospital. There is evidence that early practical involvement by parents in providing baby care in neonatal units leads to increased parental confidence and competence in their parenting skills, and greater willingness to take full responsibility for their infant’s care.3
In the USA, the use of a health-coach programme to prepare families of infants with complex medical problems or born prematurely was explored.5 The programme sought to help them to act as advocates for their infants. Families receiving health coaching were more likely to view the transition from hospital to home as positive within a few days of discharge, and to report confidence in knowing how to care for their baby.
Raines26 reported on the nature of stress experienced by mothers as they prepare to take their infants home from the NICU, in particular, mothers’ self-perceived ability to assume their maternal role. This challenge to mothers assuming their maternal role is echoed by Finlayson et al.27 in their report of mothers’ perceptions of family-centred care in three English NICUs, where they describe mothers feeling unable to assume their role. Raines26 suggested that the mothers’ levels of stress impede their learning. She recommended that NICU staff should create low-stress environments where discharge education can be most effective when readying families for home.
Work in the USA and Canada on early educational interventions for parents in neonatal units has shown that parent–infant interactions may be enhanced and LOS reduced.17 Parents’ concerns evolve as they move from NICU to home, and these may be addressed by providing timely discharge information and early anticipatory guidance to help build parental confidence as they move towards taking their baby home.22 Supporting and involving parents in the process of preparing to leave neonatal units for home provides them with opportunities for confidence building in their abilities to care for their preterm infant at home.23 In addition to uncertainty about their ability to care for their baby, a range of parental concerns have been identified when low-birthweight infants make the transition from NICU to home. These include breastfeeding proficiency and losing care from unit staff.22,28,29
Parenting stress30 undoubtedly affects maternal self-efficacy. Furthermore, parental self-efficacy and parenting competence have been found to be moderated by parent knowledge of development31 and as a possible predictor of child functioning.32 Teti and Gelfand33 have suggested that maternal efficacy beliefs mediate the effects of depression, social support and infant temperament on parenting behaviours.33 Studies using infants within the first year of life have found that maternal prior experience34 and social support35 are positively related to maternal self-efficacy. Also, several authors have investigated the longer-term impact of low maternal self-efficacy. For example, Leerkes and Crockenberg36 found that mothers who had low self-efficacy were more likely to display less sensitive behaviour towards their infant (especially when their infant was highly distressed), were more likely to give up when trying to soothe their infant and also exacerbate infant distress.
Self-efficacy tools based on Bandura’s Social Learning Theory may be used to indicate the level of belief and confidence about one’s perceived ability to plan and carry out specific tasks.37–39 Behaviour-specific scales have been developed to identify people with high or low confidence. Examples of such scales include the Breastfeeding Self-Efficacy Scale,40 Childbirth Self-Efficacy Inventory41 and the Perceived Maternal Parenting Self-Efficacy tool (PMPS-E)42 for mothers of infants receiving neonatal care. The PMPS-E tool is a psychometrically robust, reliable and valid measure of parenting self-efficacy for mothers of relatively healthy preterm neonates. We planned to use this to measure maternal and paternal confidence in caring for their baby at three time points. The developers of the PMPS-E agreed that it would be appropriate to use with fathers in our study, and one of the original authors of this measure (Barnes) was a member of the project steering group for the present study.
Development of parent-orientated approaches to planning for infant discharge from neonatal units
The UK development of focused, hospital-based outreach care rather than generic community-based care is similar to the system that has been developed over many years in Canada. McMaster Neonatal Unit in Canada developed an interactive discharge planning tool to achieve timely transfers between the various levels of care and to give families permission to speak and engage with the process.43 When using the tool in neonatal units, parents asked more questions than before and the tool opened up dialogue between parents and staff. The Canadian project prepared families for transfer from NICUs to LNUs nearer their home. The Canadian tool emphasised the importance of communicating with parents and focusing on their needs and understanding rather than being driven by clinical staff perception of infant needs. Other features include helping parents to read their baby’s changing cues, and keeping baby and parental readiness as the focus of unit practice. Implementing the approach improved parental involvement in, and understanding of, the discharge planning process; however, a number of barriers to successful implementation were identified, notably a lack of direct engagement by neonatologists. Also some nursing staff thought the newly established discharge planning pathways were redundant because the constituent actions and information were documented elsewhere or formed part of normal nursing care. Despite these limitations, the implementation was successful, as parents and families in the NICU accepted it and engaged with the process.
In 2010, a research team member was seconded to the McMaster University neonatal unit to gain experience in using the intervention tool and investigate the feasibility of developing a UK version for an intervention study. In Chapter 4 of this report we present the outcome of this secondment and our subsequent development of a tool using the same principles but orientated to UK families and neonatal unit staff needs.
Summary and conclusions
Improved survival over the past few years means that large numbers of preterm infants spend long periods of time in neonatal care before being discharged home. There has been increasing awareness of the problems experienced by infants and their parents in the process of preparing for, and dealing with, the consequences of discharge from hospital.
There is growing understanding of infant and family needs for structured discharge preparation, early parental involvement in infant care, and support, before, during and after discharge; however, few neonatal units have structures in place to facilitate these processes and many families feel unprepared to take their baby home. This may contribute to delays in hospital discharge and/or inappropriate use of health-care resources after discharge, with recurrent infant readmissions and overuse of out-of-hours or other urgent care resources by families after infants go home.
Studies show the potential value of parent-orientated practical approaches to involving and educating parents about discharge planning during the infant’s hospital stay. Unfortunately, discharge planning and parental education remains poorly organised and unstructured in most UK neonatal units.
We have developed a UK version of a Canadian approach to preparing families for home using a parent-orientated approach to discharge planning based on underpinning principles of early involvement and empowerment of parents.
This report documents the implementation of this approach in four UK LNUs, and the effects of that implementation on parental self-efficacy scores, patterns and costs of health and social care resources use after discharge from hospital, and infants’ LOS in LNUs.
Literature search
Literature searches were completed by a University of the West of England Faculty Librarian and a Research Fellow in November 2009, and rerun in January 2010, with final searches being rerun in February 2015.
No specific date limitations were applied to the search on either occasion.
Databases: EMBASE; Health Management Information Consortium (HMIC); Maternity and Infant Care (MWIC); Ovid MEDLINE®; PsycINFO; Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus; and Alternative Medicine British Nursing Index 3 (AMED).
Key words used:
neonatal unit* or scbu or special care baby unit* or nicu or neonatal intensive care unit*
prematur*) adj3 baby) or prematur*) adj3 babies) or prematur*) adj3 neonate*) or 32 week*) adj3 baby) or ‘32’) adj3 babies) or 32 week*) adj3 infant*) or 32 week*) adj3 neonate*).
discharg* adj3 plan*) or discharg*) adj3 meet*) or discharg*) adj3 manag*) or going home or leav*).
