Workstream 4: a qualitative ethnographic study

Exploring place of care decision-making, and the perspectives of parents and clinicians, of preterm babies born at 27–31 weeks gestation.

Sections of this chapter have been reproduced with permission from Cupit et al.2 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) licence, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

Introduction

In this workstream we explore parent and staff perspectives regarding place of care. Very preterm babies born at 27–31 weeks gestation, if viable, are always admitted to neonatal units for ongoing care. As their time in hospital may be prolonged, this can be a frightening, highly stressful period for parents, families and staff. We considered therefore, that their perspectives, from having had the lived experience of hospital care and caring for this cohort of babies in both NICU and LNU settings, would provide invaluable insights that could inform best place of birth and care for very preterm babies in England.

Aim

To assess staff and parent perspectives on place of care for preterm births between 27 and 31 weeks gestation in England.

Objectives

To address the following unanswered research questions:

1. What factors do parents think should guide decision-making about where babies are cared for, and how does this happen in practice?
2. What are clinicians’ perspectives and practices around decision-making about place of care?
3. What are the impacts on parents and families of this decision, and any subsequent change in care location?
4. How can parents best be supported at this time?

Methods

Study design

This was a qualitative study using an ethnographic approach125 that included observations of routine behaviours in their natural settings (‘work-as-done’ rather than ‘work-as-imagined’)126–128 and interviews with staff and parents.

Data were initially collected in real time in two neonatal operational delivery networks, involving six neonatal units: two units were NICU (one per network) and four were LNU (two per network). Here, parents with their babies receiving contemporaneous neonatal care, and staff, were observed and interviewed. To broaden the parent perspectives and to include different geographical regions, further interviews were conducted with parents of very preterm babies born at 27–31 weeks gestation with experience of preterm neonatal care in England (‘retrospective’ perspectives).

Recruitment

Healthcare professionals working in the six neonatal units were introduced to the study by members of the OPTI-PREM project team. The healthcare professionals made parents aware of the study. The OPTI-PREM qualitative researcher then approached parents for consent for participation in the study. All eligible parents (i.e. those with a baby born at 27–31 weeks) who had a baby on the units during periods of observation, and all doctors and nurses working at the units on observation days were approached for interview.

Involvement of parents for ‘retrospective’ interviews was sought through the charity, BLISS,52 utilising their social media channels. In response to the first general appeal, offers of participation were primarily from parents motivated to provide good feedback about care provided to their baby. Subjective assessment by the researchers suggested that these parents benefited from a relatively high socioeconomic status. In order to engage a broader, and more representative, sample of parents, a second appeal specifically sought parents whose experience had been ‘particularly challenging for practical reasons (e.g. finances, family, culture/religion, English language skills, employment), in addition to their concerns about their baby’s medical condition and care’. In doing so, we hoped to target and encourage the participation in our study of parents from demographic groups that are recognised to be under-represented in research.

Verbal consent was obtained from both staff and parents for observation; written consent was obtained for interview. At all times, it was made clear that participation was voluntary and that accounts would be anonymised.

Data collection and analysis

Data were collected and analysed by experienced social scientists. Fieldwork included 280 hours of observations (of ward rounds, daily clinical activities and discussions, and transfers across the six neonatal units) and unstructured discussions with staff and parents. The observer also took written notes unobtrusively and then debriefed with another member of the team. Some of these debrief sessions were audio recorded and transcribed, while others were written debriefs.

We also completed semistructured interviews with staff (see Table 29 and Report Supplementary Material 8), and interviews with parents on the units and the wider group of parents who had recent experience of neonatal care at other units across England (see Figure 10). Interviews were either face-to-face or by telephone, lasted up to 1 hour and were audio recorded. A topic guide developed through literature review and discussions within the project team (including parent representatives) was used, but conversations were also guided by issues raised by participants. Observations and interviews were transcribed verbatim, and anonymised. The researchers undertook thematic analysis using a constant comparative approach to address the research questions stated above. NVivo software (QSR International, Warrington, UK) was used to code and organise data.

FIGURE 10 Recruitment routes for parents interviewed (both real time and retrospective). (Figure not reproduced here; see the original article.)

Inclusion criteria

Participants (parents and clinicians) who were willing and able to give informed consent were included. Participation was voluntary and it was made clear to parents that declining did not compromise the care they or their babies received. Written information was developed for both parents and clinicians invited to participate. Informed consent for participation obtained – verbal for observations and written for interviews.

Results

Overview of data

Fieldwork involved 280 hours of observation across the six neonatal units over a total of 35 days. Table 29 outlines the staff interviewed, and Report Supplementary Material 8 shows the observation framework utilised for the ethnographic work in the six neonatal units. Figure 10 details the cohort of parents recruited for interview from the six neonatal units (real time) and more widely across England (retrospective). The latter included parents from the South West of England, East of England, West Midlands, East Midlands, South East of England, Yorkshire and Humber, North East of England and North West of England. Included within our parent interviews were two cases in which the baby had sadly died. We interviewed parents of babies born across the gestational age spectrum of OPTI-PREM (parents of five babies born at 27 weeks gestation, two at 28 weeks, five at 29 weeks, four at 30 weeks and six at 31 weeks gestation).

The interview schedules for staff, and real time and retrospective parent interviews, are detailed in Report Supplementary Material 8.

Presentation of data

Our findings are divided into two main sections. In Section 1: Deciding and enacting place of care, we show how decisions about place of care are made and operationalised. We focus on perspectives of neonatal staff who make and enact decisions about ‘best place of care’ for babies, because, while decisions may take account of parents’ individual situations, parents were not usually directly involved in decision-making. We show how staff make decisions about place of care in practice, incorporating managerial concerns about financial sustainability of the unit and resources available, in addition to clinical considerations. We highlight the extensive organisation and negotiation involved in transferring babies, as well as the practicalities of transfer. In Section 2: Parent perspectives on place of care, we discuss the perspectives of parents, and how place of care decisions impact on them and their baby. We demonstrate how transfers disrupt their ability to create continuity for their baby, with potentially far-reaching consequences. Finally, we reflect on the current organisation of neonatal care, and how parents may best be supported in this context. We illustrate our findings with data excerpts, labelled using ‘Doctor’ or ‘Nurse’ to identify the broad staff group, and ‘Mother’ or ‘Father’ to identify the parent. These categories are followed by their participant number. The site number is identified only when labelling observational field notes, to protect participants’ anonymity.

Section 1: Deciding and enacting place of care

Contextualising decisions about place of care

Clinicians emphasised the variation in the needs of babies who are born (or likely to be born) in this gestational age group; their needs are influenced by a range of factors such as number of weeks gestation, number of babies, complications in pregnancy, baby’s size. Although some of these factors may be known prior to delivery (and an informed guess made about their subsequent needs), babies in this group are unpredictable:

These are [a] very notorious group because they can behave like an extreme premature or they can just need a bit of support …. It’s very difficult to predict these babies.

The difficulties of co-ordinating preterm delivery have been noted by Edwards and Impey129 who found that only 50% of extremely preterm babies (< 27 weeks) are born in a specialist unit, despite this being the recommendation. For the OPTI-PREM group, there is no existing recommendation. When mothers seek medical help at 27–31 weeks gestation, they may telephone their booked hospital, and the advice given often hinges on the physical capacity of the unit (cots available):

[The nurse said:] Sometimes [LNU site] is full and [they] tell people to rock up [here] without checking [we] can take the pressure.

Advice about the suitable place of care is orientated to the ‘capacity’ of the specific unit to which the mother presents – in this case over the phone rather than in person. The nurse highlights that hospital neonatal units, although linked as part of a network, are managed relatively self-sufficiently; here, staff at the booked hospital lack overview knowledge and/or interest in the capacity of other nearby sites.

Mothers often present in person (and often in labour) at the unit which is local or convenient to them. When time allows, neonatal and obstetric staff look to ‘in-house rules’ to guide decisions about which babies it is ‘safe’ for them to care for. Such local protocols dictate, for instance, the minimum gestational age at which it is appropriate to care for a baby in a LNU based on nationally recommended frameworks of practice.3

Majority of the time, it’s quite a simple decision, for example guidelines we can’t deliver, or we shouldn’t manage anyone less than 27 weeks here … And [we] have clear guidelines of how many nurses we need to run an ITU, how much space you need and all that …

Such protocols are based on biomedical characteristics of the mother and baby (e.g. clinical conditions triggering early delivery) and the suitability of the unit to which the mother presents in terms of resources.

For mothers presenting at LNU, it is often considered ‘optimal’ for them to be transferred to a NICU, in recognition of the uncertainties surrounding the baby’s likely condition:

We can scan but we don’t have the expertise to confidently say there’s no bleeds going on or the head’s normal. So just small things that add up to not having good care or optimal care for the extreme premature baby just because we are not funded, we’ve not got the personnel or the skills because we don’t deal with that so often. So I think even mums would say they want to be in the place where their baby’s going to get the optimal care.

Units often must handle an imminent delivery regardless of whether they are equipped to care for that baby according to recognised standards and guidelines for neonatal care. Even mothers classified in advance as being ‘high risk’ (and therefore booked at a NICU hospital) often present in labour at their local hospital, where the unit is obliged to manage the delivery:

Triplets were booked for Site 1 but were born at Site 5. Consultant said this happens a lot; that high-risk pregnancies are booked at Site 1 but then mum presents at Site 5 too far along to be moved.

This situation is problematic as mother and baby may subsequently become separated, as the babies are transferred to a more specialist unit. One nurse predicted that the system would need to change:

In years to come, you’ll ring in, ‘I’m in labour, I’m 25 weeks’, [and a central co-ordinator will say] ‘yes, that’s fine … the ambulance is on its way that will take you straight to [Hospital X]. When things have settled down you’ll be transferred to [Hospital Y], your booking hospital’. That’s how it would happen in years to come but at the minute people just turn up to the booking hospitals.

This nurse argues that a centralised system would allow a better view across the system and remove work for staff in LNU units tasked with delivering babies for which they are not equipped and/or arranging urgent transfers.

Our findings highlighted that decisions about the ‘best’ place of care are highly contextualised within the unit to which the mother presents. In many cases, the delivery takes place there despite staff considering it as non-ideal, and further decisions about the best place of care are made from that starting point:

If the birth is imminent then we just go for it. Personally I’ve dealt with babies who are twenty-three-and-a-half weeks onwards [at another unit]. So personally speaking I’m comfortable and I’m pretty sure my nursing colleagues are pretty comfortable. So we deal with them, but as soon as the baby comes out, one of my colleagues starts looking around, hunting for a bed [elsewhere].

In such situations, staff must cope with whatever happens and prepare to transfer the baby after delivery.

Sometimes a suboptimal delivery at a LNU is due to delays in identifying an alternative site or arranging an in utero transfer. Such delays concerned some staff who felt that the care of the baby was potentially compromised:

Fair enough if they come in overnight and they just deliver, then obviously no one can complain – we have to deliver that baby – but when they come in and we have 5/6 hours to sort out transfer, that’s where, you know, I have issues.

Staff also draw on their local and dynamic knowledge about the current unit’s capacity, the capacity of other nearby units, and an assessment of risk in relation to in utero transfer. The following example highlights that local guidelines may be ‘bent’ to avoid a transfer that is considered unnecessary:

On a December cold, wintery night and a mum came in utero [with triplets] and there was possibly a small window for her to go elsewhere, but I carefully calculated the risk and said ‘your twenty-nine-weekers have very good growth for all those babies and, because it’s winter and there is a chance that things might happen en route’. And at the time I had a very experienced registrar with me and I did have another member of the team who could definitely come back [into work after leaving shift], and this mum had had steroids as well in the last week. So looking at all those calculations I actually did look after them and they [have] all grown well and [been] discharged with very brief ventilatory support. They all went home safely, never had to go to a tertiary unit.

Staff employ nuanced knowledge of capacity issues such as staffing experience on the unit at the time, and other variable factors such as the vagaries of the weather and transport infrastructure to weigh up the potential (but uncertain) benefits and risks of transferring the baby in utero.

After delivery, decisions about whether the baby is in the ‘right’ place continue to relate not only to the physical needs of the baby (requirement for ventilation, tube feeding, surgery, etc.), but also to local protocols, and the wider management of the neonatal network. In some cases, decisions are relatively simple, as the baby has particular needs that require equipment that is not available in a LNU:

It depends on their condition when they were born. There are some preterm babies who are born healthy so they will go directly to high dependency [equivalent to LNU in a NICU unit], but then there are some babies who are really in poor condition and need to be ventilated or need to be in an intensive care.

In other cases, staff balanced multiple formal and informal protocols, some of which were applied rigidly, and some treated more like ‘rules of thumb’ that could be varied:

For any particular baby that’s in front of me, we also have some background, in-house rules … If they are very small babies, although they are twenty-seven plus, [then] we have a magic number of eight hundred grams or less. Then we do speak to the [NICU] to say ‘er, it’s better for the baby to be looked after elsewhere’ … If it says singleton baby, and if it’s say good growth for that twenty-seven to thirty-two weeks, I would rather be happy to look after the baby.

Often staff have to take account of multiple factors that are contributing to the overall ‘capacity’ of the unit at that particular moment in time. ‘Capacity’ includes many different elements – including staff numbers, qualifications, experience and the various types of equipment available, as well as number of cots:

So in our Unit [LNU], it’s twenty-eight weeks and above, and then we look at ourselves. How are we? Is there enough nursing staff? Are there enough doctors? And then we look at bed capacity, and [intensive care capacity], whether there’s enough space. For example, if there’s only one space we’ll be reluctant, because if there’s an emergency, that baby doesn’t care that [there’s now] a [new] emergency baby [to take its spot]. … We basically look at the baby’s condition, whether the baby has any specific needs, if there’s any congenital anomaly. If yes, then we become reluctant. And rightfully so. We’re reluctant for the sake of the baby’s health and the mother’s. Babies like that go to a tertiary centre. So that is the few things we look at. And weight as well.

Integrating ‘managerial thinking’ into decisions about transfers

Staff spoke of their ‘network responsibility’ to try to accommodate babies – a responsibility linked to national tariffs for different categories of care and locally negotiated contracts and payments.130–132 Both LNU and NICU staff knew that they needed to ‘think managerially’ about capacity and resources – and this included considerations about income generation:

And then we like to think managerially as well. If [a Level 1] has a twenty-eight week [baby] and they ask whether you would like to accept, we are more than happy because not only it’s good for our practice that we keep on getting prem babies, second, it brings money to the [hospital]. So that’s the other way of looking at it. So we are always looking for kids.

Units were paid for their ‘activity’ (number of babies), so accepting new babies was important for income generation as well as to maintain the unit’s status (also linked to the category of babies they are allowed to accept):

You have to accept, because we are a LNU, we cannot afford our activity to go down. Because [then] we’ll be relegated to a Level 1 unit. So we won’t want to be seen as refusing … I mean it’s good to be hands-on. It’s good to have activity. We can get deskilled if we don’t have activity. … And the more activity we do, the more funds we get [so] that’ll improve [the] financial situation as well. So it’s a win-win situation. … Our network’s constantly looking to activity. So you don’t want to be showing that activity is going down.

LNU therefore tried to retrieve babies who had been transferred to NICU care, as soon as they were clinically ready for repatriation:

There is a baby here from an out-of-network hospital. [The hospital] has been ringing to see if it can come back.

In addition, the tariff that each baby was believed to attract, according to the category of care that was required, was felt to be an important consideration:

While waiting, [another hospital] has rung up with an ex utero transfer (twins). ‘We must be the only place with beds!’ Everyone is excited to take the babies as it is an ITU transfer and that brings in a lot of money. [Staff member] singing ‘one thousand and twenty-one pounds. Thank you!’

Similarly, NICU needed to maximise income from babies attracting greater levels of funding – as they were equipped to provide care for this group. However, this was sometimes in tension with providing a broad spectrum of neonatal delivery for the local population – who happened to live near a NICU, and whose babies might therefore be transferred out to a distant LNU if they did not require ‘high-end’ intensive care support:

So it’s finding a divide between running a hospital, just purely thinking about the service and how much activity you can churn through at the high end of intensive care, versus running a service that makes sure you provide the right service for the families of your local population.

Staff decision-making about place of care integrated managerial thinking with considerations of the baby’s medical needs. Although sometimes obvious, more often it formed the backdrop for discussions about clinical needs and resources available. Sometimes a focus on managerial concerns created tensions within units, as in the following excerpt between medical and nursing staff:

Consultants want to have a better way of recording why babies can’t be accepted. They want specifics, so they were saying things like ‘why have you said we’re busy? What is it about the category of babies in today that means we can’t take another one? Are any of those eligible to go to an LNU or a Level 1?’ Nurses said ‘it’s not that simple because staff shortage takes management nurses on to the ward and they can’t properly identify the dependency and so it’s hard to know exactly why a baby is refused admission other than “busy”’.

Here, management priorities require that various staff align to focus on maximising income to the unit, and this work comes into tension with the everyday work of nursing. Nursing staff often wanted to ‘operate at gold standard’, while the resources available across a network, and the pressure for units to maintain income, together ensured that this was not feasible:

The doctor was also complaining about how there is no standardised practice for closing the unit because it depends on the person who is on that day. That the nurses always want to operate at a gold standard, but it is impossible to operate at that level because the unit is always falling short due to staff shortages.

The following conversation between the researcher and two transport nurses highlights how high tariffs for particular categories of baby were believed to encourage units to be flexible about accepting babies when they were close to capacity (to exercise their ‘network responsibility’), but also precipitated a need to ‘jiggle’ or ‘shuffle’ babies from one unit to another in order to make space.

TN05A: The units are very good, if it is a really sick baby that’s got a specific problem then they’re very good at trying to make beds, so often we’ll move other babies out so that they can have a space for that baby, so we do jiggling around quite a lot as well. … I think the NICU, especially the surgical ones, always really try and move babies to the wards [off the unit] and do whatever they can to accommodate.

TN05B: Because they get more money for the surgical ones! [laughs]

Researcher: Do you think that’s part of the motivation?

[Short silence]

TN05A: I wouldn’t want to comment.

TN05B: And also the interesting cases. Sometimes if they’re really interesting … and well, maybe there’s a bit more [funding].

TN05A: Yeah, I think they’re probably more likely to make space for a surgical baby than they would be for a non-surgical – because it’s something a bit more interesting. … And also, like you say, those sort of babies don’t want to be travelling, you don’t want to be going hours with them either, do you? They try and shuffle to make them fit in don’t they?

TN05B: Sometimes we have been known to take babies from out of our catchment area for surgery when generally they should be going to another hospital that’s in their catchment area, but if they call us then we will generally accept because … our unit thinks ‘yeah, why would we not take a surgical baby?’

It is important to note that recognising this managerial thinking in decisions about place of care created some discomfort for staff, such as one of the nurse’s initial responses in the extract above that they ‘wouldn’t want to comment’ on this. It is also the case that we did not explicitly seek to verify the factual accuracy of funding flows within particular units.

The practical art of ‘shuffling’

When a need for either in utero or postnatal transfer was identified, it had to be agreed with the receiving unit. For in utero transfers, the decision about whether to accept a baby was not only for the neonatal unit but also for the maternity service; a ‘yes’ was needed from both to proceed.

31 week in-utero transfer from Site Z [SCBU], NNU have said yes, but Delivery [ward] hasn’t decided yet. ‘They’ll say no. That’s what happens. We say yes, and they say no’ (Charge Nurse)

Receiving units employed their own in-house ‘rules’ for negotiating transfer requests (like those described above); these helped staff determine whether they had adequate capacity to safely accept a new baby:

They have a white board in the sister’s office that has two tick boxes to indicate open or closed to in-utero transfers. Then under is a list that says: ‘Twins over 27+6 weeks, singleton over 26+6 weeks, babies over 800 grams’. Ward clerk has given me their external cot request book to see accepts/refusals. Majority of requests all the way back to Dec 2017 are in utero transfer requests, and the main reasons for refusing the request are capacity in labour [wards] or NNU.

Arrangements for moving babies took considerable time and energy and were organised differently depending on the network arrangements for transport. In one network, a system was in place in which:

… transport do so much of the work, so if we’ve got a baby that we need to transfer out, we call transport, the doctor will give transport the handover and say: ‘This is the baby it needs to go to a NICU unit for A, B, and C [reason]’ then the transport team will find a NICU unit for us and then call us back.

In the other network, clinicians took on more of the work:

It takes time going through switchboards and asking people around, it can take 15/20 minutes easily to call one hospital. … Out of hours I’ll just have one registrar and myself [consultant] and an SHO. It’s a bit unfair for me to ask the SHO to phone and discuss these high-risk and complex cases, so it usually ends up with the registrar doing the lines and the procedures and I’m on the phone, so yeah it can be a bit stressful, it doesn’t need a doctor to find out where the beds are available.

‘Shuffling’ babies around was a constant occupation in some units:

For the first time during ward round there has also been no discussion of moving babies out. This is normally an ongoing discussion on ward rounds. With 12 available beds patient flow is not a priority or need [today].

Site 3 keep track of the babies they transfer out in their handover notes. ‘We need to hassle on a daily basis’. Consultant is telling nurses to get beds for a new transfer on to the unit.

When multiple units in a network were close to capacity, one baby’s need for transfer precipitated another:

It can be quite frustrating for everybody … sometimes we’ll need beds so we tend to ring [NICU hospital]. Sometimes we’ll do a swap, so we’ll have a baby [and] they can take one of our vented babies.

Decisions to move a baby took hours or days and could remain live for hours, days and even weeks. Even once a transfer was confirmed, the time for transfer was often unknown until an hour before the team arrived, necessitating babies to be ‘transfer ready’ at a moment’s notice. As a result, treatments (e.g. ventilation, antibiotics) were often delayed to maintain a baby’s status as ‘ready’ for transport; staff feared that starting these treatments could result in the baby no longer being eligible for transfer, and missing the small window of opportunity they had organised for the baby to move:

The consultant has recommended not intubating (if possible) the transfer babies as that complicates things and might set the transfer back.

Transfers themselves were labour-intensive for staff:

Doctors keep changing out with the transfer team on the phone. The focus is on stabilising the baby medically (serious work though, three doctors, all in scrubs, one ANNP and two nurses all working to ventilate and put lines in). Also prepping all the paperwork, electronic system etc. for transfer and ticking the boxes for transfer out ASAP.

This was exacerbated when the transport team itself was operating near capacity and there was considerable delay:

So, it’s just waiting for the transportation to come. … if [the baby’s] not on the priority list then you need to wait for like twelve hours for the next shift before [transport] comes. So really there the stress comes in waiting for the transporting to come.

It’s quite hard on the units, … It can really change the entire day for the whole unit.

A lack of consistency of protocols and technologies created additional work and stress related to transfer:

Everyone agrees that a lot of time and equipment is lost because of a lack of consistency of equipment between hospitals. Can end up being very wasteful if sending hospital has a different policy from transport team, who have a different policy from receiving hospital. Three opportunities for wastage (milk, drugs, equipment) all get binned if they don’t comply … This also means that there are often interventions to ‘correct’ between the different standards and baby can be poked and prodded three times just so that leads or drugs comply with new standards. Donor milk is not consistent across sites either.

Chasing up reports, test results, and even verifying care received between the hospitals was difficult for staff, who had to rely on: a verbal handover from the transfer team; a verbal, over the phone report from the sending hospital; and patient notes that were often not in the same format as the receiving hospital used. Scan results were very difficult for receiving hospitals to access, necessitating new scans and interventions by the receiving hospital.

A baby transferred from Site X had no records. Medical staff were aware of baby and had discussed him during handover, but on electronic system there was nothing …

As we will go on to highlight in Section 2: Parent perspectives on place of care, transfers were also very stressful for parents, and staff were caught up in managing these parents’ concerns:

Nurse prepping the transfer was double-checking the ‘Transport Information Systems Checks’ sheet quite a lot. Even just transport through the hospital is very stressful and emotional for these parents and they are crying at the thought.

Section 2: Parent perspectives on place of care

Parents’ priorities in relation to place of care centred on the medical needs of their baby – having access to the ‘correct care’. Being an obvious concern, this rationale was often used by staff to prepare and/or convince parents that transfer was in the best interests of the child:

The way it’s explained is ‘at the end of the day, your baby needs to be in the right place at the right time having the correct care’ … I’ve even had mums say, you know, ‘if you’ve got to send my baby to London, I don’t care where you send it, as long as the baby’s looked after properly’.

Parents generally deferred to clinicians’ knowledge about the ‘best place of care’, but were also concerned about the practical consequences of a decision that would involve care at a distance:

Obviously I would have done whatever they told me, but in the end it was fine, they managed to find a space for him and he stayed close to home the whole time.

Being able to care for your own baby

As discussed in the Methods, most of the parents included in this study had experienced a ‘positive outcome’ (a healthy baby). Their descriptions of positive experiences are relevant to our discussion about place of care because, as highlighted, they may be more difficult to achieve when the baby is moved or receives care a long way from home.

In particular, it was important to parents that they were central to their baby’s care – knowing what was going on and doing as much as they could to care for their own baby. This necessitated developing continuity with staff – that they were able to ‘get to know’ them:

I was there all day, twenty-four seven really so I just got to know all the staff. … they’re just brilliant aren’t they? I just couldn’t fault them in any way.

This also allowed them to be confident that the staff were paying attention to the baby’s needs:

When they were looking after [baby], it all felt, it really was personal. It wasn’t just like doing their job, it felt like they wanted to look after her, not just because they were being paid to.

This relational continuity with staff was not seen as peripheral or ‘soft’, but as enabling parents to oversee the care of their own baby. Consistent staffing enabled them to access reliable information and exercise vigilance in their baby’s care:

We saw probably two consultants and it was consistent. So it wasn’t somebody different every day, and you soon get used to learning what they’re doing with the hourly obs and stuff. That was explained and you could just sit with them, and you can help them, and they encourage you to get involved.

It was very important to parents that they knew that they would be kept informed of what was going to happen next, particularly when staff became concerned or there was likely to be some change in the baby’s care:

We knew from the very beginning what the process was going to be, and they kept us in the loop, they always told us what’s coming next.

Being able to get to know, and trust, staff enabled parents to better balance their need to be with their baby with their own well-being and other domestic arrangements:

I stayed with my twins a lot, and I was moving house at the same time. And [staff at the unit] were really nice. I think I’d been there for about three or four days and the nurse came in, and she was like, ‘Look, you know, we’re not trying to get rid of you, but maybe just go and grab a coffee. Just take a little bit of time, go outside, see somebody’. They’d just do nice things like that, or ‘the twins are settled, why don’t you go and have a bath, and if something happens, we can always come and get you’.

Parents valued the way in which staff recognised their practical needs and difficulties – for example, providing support with food and accommodation when they were unable to commute to the hospital. This enabled them to remain centrally involved in their baby’s care, for example by supporting breastfeeding, or enabling them to travel backwards and forwards to the hospital:

They sorted out, they went through everything with where we were staying and the keys and told us what was what and they arranged food for us because I was breastfeeding. … They knew we didn’t have any facilities.

The food is quite dear at the hospital anyway, but then petrol too because it’s about a 15- to 20-minute drive from here. Luckily Family Funds did help us out a lot. So we was able to get a weekly ticket for the parking instead of buying it daily when we were there.

Transfers disrupting parental care

As highlighted in Section 1: Deciding and enacting place of care, decisions about place of care were made in a context of limited capacity – staff, cots, equipment or other resources – across neonatal networks. This meant that, although babies’ medical needs were at the forefront of decision-making, staff also had to incorporate ‘managerial thinking’ into transfer decisions – ‘shuffling’ babies in relation to the resources needed and available and paying attention to the financial sustainability of their own unit. As we highlighted, capacity was constantly changing in the different units across a network, as were parents’ and babies’ needs. This created a dynamic situation in which clinical staff were involved in ongoing preparation and negotiations with other units over transfer.

Stresses of transfer

The uncertainties of transfer generated considerable work and stress for parents as well as staff:

So yes, it’s just basically not knowing. Can’t plan anything, it’s play it hour-by-hour, day-by-day.

Everything was put on hold:

We needed both the bed and the transport to be available at the same time. So, the amount of times they’d say ‘oh, there’s a bed available, we can move tomorrow, we’re just going to go and sort transport’. And then they’d go and sort Transport but, by the time Transport got back to them, the bed had gone.

Parents often had to react and adapt very quickly, and this was stressful when the mother was still an inpatient:

It all happened really quickly – I was absolutely terrified, and didn’t really know what was happening … There was nothing I could do. They transferred [baby] up to [NICU hospital] and I was like adamant that they needed to transfer me up there as well [as an inpatient].

In the following case, the mother rushes to get herself discharged while the baby is being prepared for immediate transfer:

[My husband] phoned me from special care [at Hospital A] and said ‘they’re moving her to [Hospital B]’. I said, ‘what do you mean …, when?’ He said ‘Now, the transport team are on their way, you’ve got about an hour’. So he stayed there talking to them while I hobbled over [following complications with delivery and C-section]. It was down one corridor and across another, so it was probably about a two-minute walk, maximum. It took me twenty minutes, I think. But I got myself over there, hoping I was going to talk them out of it. But they explained the situation … So I went back, just in time for my midwives and they were ‘How you feeling?’ And they said, ‘Oh, we can try and arrange a transfer to [Hospital B], but you know how long discharges take in hospitals’. And I thought, ‘Well, if they keep me in any longer, I’m going to be separated from her’. So I just said ‘No, I’m doing really, really well, yeah, I think I’m ready to go now’, so that they’d discharge me, basically.

Alongside the baby’s transfer, parents had to organise their lives around the new location – and the new routines and arrangements that would be necessary, and possible. As highlighted below, these often involved complex arrangements in relation to the father’s employment and/or the care of other children.

Parents generally accepted that their baby might have to move in response to medical concerns, but moves related to capacity issues were more difficult:

It didn’t help [that baby had to move to (distant LNU hospital)]. It really didn’t help but they had literally no room [in local LNU hospital]. They said, ‘If we had room, we would keep her here because we know you’re from [local place]’. … [But Distant LNU hospital] were brilliant. Every day, probably three or four times a day, they were ringing to see if there was a place [in local hospital].

These kinds of moves were not to benefit the baby, and might have detrimental consequences:

I think the hardest conversation is the move out for capacity reasons. So making a decision to impact significantly on a family potentially, when they might not want to, for the care of a different baby who they don’t have nothing to do with can be quite difficult sometimes.

It was not always the parents’ priority to be transferred closer to home, if they were concerned that this would disrupt the baby’s care:

I did worry actually when they transferred [baby]. Because [NICU hospital] was so different – it’s a different world in [NICU hospital] to [LNU hospital (where they had previously had a bad experience of care)]. Even the size of it, and the capability. And when the consultants and the surgeons are speaking to you, you know, they speak to you so that you understand [in a NICU]. … I remember chatting to a guy saying ‘Are you sure that she’s alright to go?’ but of course they’d got more ill babies, they needed to move her of course. She was alright but the confidence [a parent can have in a NICU hospital] is different I think [to what they can have in a LNU hospital].

Parents did not always feel that they could trust that decisions were being made in the best interests of their baby, and some questioned whether there might be managerial motivations for moving the baby:

And then it came – the worry – because he was doing so well by day eight, they wanted to get him out of there [NICU hospital (80 miles away)]. Because they needed the beds for the more ill children, and also because we weren’t booked there, they kept pushing to get us back to [local Level 1 hospital]. … [I was worried that] [local Level 1 hospital] had said to me they aren’t able to look after him, that made me queasy … And then I was upset that [NICU hospital] didn’t know that [Level 1 hospital] weren’t able to take babies until they were thirty-two weeks’.… They push you because it’s all about finance. Because [local Level 1 hospital] are paying them all the time, so [NICU hospital] know that [local Level 1 hospital] are going to start phoning them to say ‘When can I have the baby back?’

Transfers disrupted the baby’s medical care and parents were often concerned they made babies sicker in the short term:

And then the bit that I was scared of was the move as well. So as soon as he moved, he needed to go back on to oxygen which he wasn’t on before. And all that happened with the move. And they didn’t have any of his x-rays or anything so they had to start all over again.

Getting to know and trust a new unit

Parents arriving in a new unit had to be inducted into the new setting and their responsibilities, requiring considerable assimilation of new knowledge, often under stressful and exhausting conditions:

‘This is the milk kitchen, this is the linen store, this is this, this is that’. And we were going round and I’m thinking, ‘I really just want to sit down’ [laughs]. And then it was, ‘Oh, you need to hire one of our pumps, so we need a deposit for the pump, can you get (…)’ Okay, fine sure, I’ll book that out somehow, and after all this, eventually, they just let me sit next to her incubator again.

However, parents were often most concerned about the disruption to their relationships with staff, and the shared knowledge that had been built up:

I think for me it’s the ongoing care [that’s important], because you know as soon as you move hospitals you’re going to have to start again. And you’ve worked so hard: you know the routine, you know the staff, they know [baby].

Not only did staff at a new unit need to ‘get to know’ the baby in a technical sense (e.g. investigations such as X-rays documented on the notes), but they also needed to ‘get to know’ the baby’s individual characteristics that were not covered by the notes, and the parents’ circumstances and capacity to be involved.

Continuity of relationships with staff was important to parents, to support management of their baby’s care. Parents felt the need to oversee the care their baby was receiving, bearing in mind that staff in the new unit would not ‘know’ their baby:

I wanted to see, I didn’t know the nurses there and I wanted to see how they were. And then after those first two nights I was like ‘okay, I’m happy now to leave her because now I know’.

Getting to know staff was especially important when trying to understand significant differences in unit management or their approach to tasks in which the parents had been involved:

So it was a bit weird to begin with because they had a completely different routine to how they did things with like even just the breast pump and where you put your milk and all that sort of thing.

Every single hospital, there were different pumps, different sterilising. How the milk worked – some hospitals you took charge of the milk, other hospitals they did. They are all very good at showing us how to do it, it was fine [but] it did astound me that every single hospital was different.

For parents, the different approaches across different units caused a lot of uncertainty. They also made it difficult for them to know if their baby was being well cared for, as procedures they used to benchmark care in the old hospital were often completely different in the new hospital. As a result, many parents said they found the change between hospitals difficult to cope with as they were never sure if they were caring for their child properly in the new unit, and were scared they would do something to affect the outcome of their child’s prognosis:

Different hospitals have different procedures, it was like, ‘Oh, what’s that?’ And she was like, ‘Oh, it’s something we do for all our babies, don’t worry’. And you’re like, ‘But I want to worry’. Not that I [really] want to worry, but I want to know what’s … happening.

Shift patterns and other unit policies also tended to disrupt continuity:

I thought it would have been a lot better if we had a specific nurse dealing with babies because then they, not so much bond with them, but get to know the baby a bit better to understand its needs. When you keep swapping and swapping and swapping, you’re only going to know from what the paperwork tells you.

Some staff (and units more generally) were more enthusiastic about allowing parents to be involved than others, and this created uncertainty and stress for parents.

[Hospital A] teach their parents to tube feed their prem babies whereas, when I went to [Hospital B], the sister was like ‘No, we don’t do that here, the nurses will do that for you’. And I didn’t want them to, I wanted to do that myself. And I wasn’t allowed. And then, I wasn’t allowed to hold them and I said, ‘I feel like it’s just taking them away from me’.

In relation to this mother, nursing staff insisted that differences between units were inevitable and that parents should accept this:

All she kept saying to me was like, ‘You’ve just got to adapt’. And it was like, ‘I don’t want to adapt’. And I struggled because I had to commute and get the train every day, leaving them on a night, and I said to the nurse, ‘Please don’t let them cry, they’re not used to crying’. … There was a baby in another room, and the mum couldn’t be there as much, because, like me, she didn’t live near the area. And her baby was crying for about twenty minutes and I had to go and get the nurse one day, and I was like, ‘He’s really unsettled’ and, she was like, ‘Well, he’s been fed and changed. Sometimes, you’ve just got to let babies cry’. And I said ‘Well I don’t want my baby to cry and I’m pretty sure she doesn’t want her baby to cry either’.

Staff insisted that some jobs were better carried out by staff, but mothers were often keen to take on as much care as they could handle. Continuing with the same example:

At [Hospital A], they leave their patient notes at the end of the bed and they encourage you to read what the nurse has wrote, so they’re like ‘[Baby] had a really good night, but her heart rate dropped around two am’ and they’d say, ‘Have you had a chance to look through?’ And I’d say ‘Yeah, what happened at two o’clock?’ and she was like, ‘I don’t know. She could have just had a sneezing fit, and her heart rate dropped’. Whereas in [Hospital B], it was very much, ‘Oh, you can’t read those, those are the medical records’.

[The nurse said] ‘You really need to let us do our job, we know what we’re doing’. … and she was just like, ‘We do this all the time, even when you go home’. And it was like, ‘Yeah, but I’ve never left them’. If there was ever a problem, I’d always [be there], like get up in the night and feed them, because, to me, that’s part of my job.

Tensions between neonatal staff and parents over their involvement were only mentioned by a few parents. Their accounts suggested that this was more likely when the mother had less prior knowledge of health care, had fewer resources at their disposal, and/or a (perceived) lack of deference to the authority of staff:

There are plenty of mums that would also go to do things with their baby and then be told, ‘Oh no, we can’t do that now’, I know that that wasn’t just me. Some mums would cause absolute havoc in there and be like, ‘No, that’s my baby, I don’t care what you say. If he gets poorly, you can look after him because he’s in the place to be looked after, but I’m doing it my way because that’s my child’.

Impact of being far from home

Where the transfer took the baby a significant distance from home, this created particular issues for parents who were trying to care for their new baby as well as balance other priorities:

We couldn’t really stay as often as we’d have liked [at distant hospital], but we did try as much as we could. … You can’t just say, ‘Well I’m just going to go to see the baby for a couple of hours’, because there’s that much you have to sort out just to go to see the baby, you know, feeding the kids, travelling, money costs as well.

Many parents found this extremely stressful:

It’s very stressful – trying to balance home life and hospital life. Obviously you want your baby to be with you 24/7 but it’s not possible. I’ve got a five-year-old to look after and my husband’s at home – it’s very stressful trying to balance being between the two places.

Some parents were able to cope easily with a transfer away from home, but others with fewer resources (e.g. financial, family, employment flexibility) on which to draw, found it particularly difficult:

[My time in the neonatal unit was] a bit all over the place, like, my daughter was only fourteen months, so my boyfriend quit his job to help with childcare and visits. And we would go in the daytime for about an hour or two hours, sometimes with our daughter, sometimes without. And then I would spend the majority of my day with my daughter at home, and I’d get her to bed about seven o’clock in the evening, then I’d go straight back to hospital until three or four in the morning. I’d come back for a few hours to sleep and then get up with my daughter again, so it was very all over the place. I felt torn between the two. … But that’s the only way I could be at peace with myself.

It caused extensive disruption that sometimes required drastic action such as quitting a job (see above excerpt). Extended family were brought in where possible but parents were often exhausted:

Literally everything was turned upside down. We had to, we’ve got two dogs so who’s going to sort out a little thing like that? Who’s gonna? What are we going to do about the house? Who’s going to look after the dogs? Luckily my dad moved in for a bit and then my husband’s sister moved in for a bit. Because my husband cut down to four days at work so he could literally spend one whole day with her mid-week, so he could take a break in between. When he went back [to work] after a month, he’d go for one night in the week and then he’d stay over in the weekend for two nights. And then he would come over every night for two hours after work, he’d drive straight over and stay six till eight to see her every night in [NICU hospital]. So, he was knackered because that’s all he was doing was driving over every night after work after having a full day and then not eating and then grabbing some fast food on the way home or a toast or something. He was exhausted. I was just emotionally drained and exhausted because I’d sit with her and then sometimes I’d just go back to the unit after I’d eaten or I wouldn’t even eat, I’d just stay there until ten o’clock at night because I was on my own so, I’d rather stay there. … it was kind of very isolating.

Logistical issues for parents were not just inconveniences; they had potential to significantly affect the baby’s health and development. A particular problem of caring for a baby at a distance from home was establishing and maintaining the mother’s milk production, and getting this to the baby at the right time. If a baby was transferred away from the mother while she was still an inpatient, this created a clear physical barrier:

When I’d had the twins, on day three after having my C-section, the maternity ward were ready to discharge me to go home. And we didn’t know whether or not I could stay on the unit at [Hospital A]. If not, I’d have to travel. Which to me, was just the worst, I just cried, because it was just the thought of just leaving them.

Commuting long distances also created serious difficulties for mothers trying to provide breast milk for their babies:

I was commuting an hour and a half each way. Every day, just to try and, you know, be with her. Obviously, I was expressing off milk for her so, I needed to take that to her every day.

Travelling back and forth, and being away from the baby, created difficulties producing and expressing milk:

I’d seen it as my duty, you know, I needed to [express] milk for her [but] expressing off every three hours, not having the baby with you, was really, really hard.

The management of milk was often an overwhelming task in these circumstances:

I’m trying to express as much as I can but it’s awkward with travelling here and going back and I don’t really – I haven’t kept up with it at all. … you’ve got to wash all the stuff and sterilise it and then when you’ve finished go and do it all again … leaving the house and forgetting the milk, I’ve done that a few times, so then I’ve had to go back and get it. It’s stressful.

Mothers described that stress and exhaustion had made their milk ‘dry up’:

I expressed in [Hospital A] and did really, really well. The twins were exclusively on breast milk for the first seven weeks. But in [Hospital B, where there was no room to stay, and she felt excluded from the babies’ care], I just couldn’t, the stress of it, my milk dried up within about three days.

Although mothers valued support for expressing/breastfeeding (e.g. with techniques for expressing), those with fewer resources on which to draw noted that staff sometimes failed to adapt advice to their broader circumstances – leaving mothers feeling alienated and deflated:

And then my milk would dry up for a few days and I’d have like a slower flow, and then I’d have to ask for help to get my milk, like, back in. And you’d have to speak, you wouldn’t speak to like a normal nurse, you’d speak to the breastfeeding nurse. And that almost felt like judgement, ‘you’re not doing it properly, you’re not doing it enough’, and there was no like, ‘Okay, let’s talk about your family, let’s talk about where you are at home, and then how you come in, and let’s try and work around your life’. … I was always on the go, and I couldn’t keep my milk for very long.

Accessing practical and emotional support

Staff (particularly nurses) took on the role of co-ordinating practical and emotional support for parents. This included discussions about whether accommodation or hardship funds could be made available, along with induction to the unit that would help parents to be actively involved in their baby’s care. As highlighted above, parents were often very grateful for the support received:

It was a bit of a nightmare getting backwards and forwards to [LNU hospital, 27 miles away]. We did have [help] didn’t we? They got us there. They gave us money for coach fare or whatever it was then – we didn’t have the car at the time. That hospital was amazing.

However, nursing staff were usually working around limited accommodation, which they allocated to the most deserving cases:

The sister in charge of their ward was like, ‘Yeah, it’s absolutely fine [for you to stay in hospital accommodation] but, obviously, if another parent comes in and they do need that room, you will have to give it up. It comes on like a priority basis’.

Parents had radically varying experiences of the support that was provided to them – depending on the unit involved:

I think they sort of didn’t understand that it’s a lot of, it’s a lot of pressure to have two babies in the hospital, be by yourself, and try and find, figure out where the nearest supermarket is [and then walk to it for nappies].

It was obviously challenging for parents if their baby was moved to a unit that was not so supportive:

Medically [the care] was fine at [Hospital A]. I don’t think they emotionally gave the support though. As soon as I got to [Hospital B], they were amazing, I had a counsellor with me within minutes. There was somebody … there getting everything, filling in forms for if we were potentially going to be there long-term, to try and find us accommodation.

Several parents wanted to emphasise a need for greater emotional support from staff:

I just think they should have someone to go out and reach out to every mum on the unit, and support them with their wellbeing and to try and boost them into caring for their baby. I don’t, I don’t feel that that was there. And if it was, then maybe I wouldn’t have felt so out of control, and other parents wouldn’t feel so out of control. … Any parent that has a baby on NICU needs emotional support, because it is very traumatic. And there probably was plenty of emotional support if I looked for it. But you don’t, you’re not in the right headspace to look for it at that time. Your only focus is on going to see your baby, doing the housework when you get home and go back to see your baby. … They could help you build your confidence up, and nurture you into caring for your baby in that environment rather than at home.

This need for someone to ‘reach out’ to them, and help them maintain practical and emotional control of their situation when under immense pressure, was the main area that parents highlighted for improvement:

That’s the one thing that I could honestly say throughout the whole of our neonatal journey was that I feel that the mental health support for parents is quite poor. … Someone just to be there to say, ‘if you need to talk to anybody, this is who you can go and talk to’ because I just felt that that was something that was so lacking

Discussion

Findings in context

This workstream highlighted that staff make decisions about place of care within an unstandardised, uncertain and rapidly evolving context. Decisions involve attention to the individual needs of babies, but also to management concerns relating to demand, capacity and income generation in individual neonatal units and across the wider network. The funding systems to which staff are orientated are an important consideration in discussions about best place of care, as they govern the practical management of neonatal units and the ‘juggling’ of babies between and within units. In a resource-constrained context, these systems are likely to take precedence over more abstract ideas about ‘best place of care’, or aspirations to, for example, involve parents, or communicate more effectively.

The ‘organising work’ undertaken by staff to plan, and practically implement transfers is extremely resource intensive. ‘Juggling’ babies takes considerable time and effort for both staff and parents. Highlighting this work may open discussions about how resources are employed in neonatal units to both improve efficiency and, importantly, improve the experience of babies and families.

Our study found that parents typically did not consider the category of unit (NICU/LNU) to be meaningful or particularly important. Rather, they were concerned to ensure that their baby had the care that was needed to maximise their development and homecoming. Beyond the survival of their baby, and technical quality of care, parents placed a high priority on continuity of care. Care far from home, transfers and inconsistent procedures across units (e.g. equipment, access to medical notes, milk management and feeding) disrupted continuity for the baby, with disruption mediated by difficulties in maintaining practical parenting and overseeing clinical intervention. Parents valued support for both practical parenting (e.g. feeding, holding, hygiene) and also understanding (and feeling some control over) clinical intervention.

Our findings suggest that continuity should be more central in discussions about best place of care – a finding supported by other evidence from neonatal and other services.133,134 Continuity has been recognised as a casualty of a modern focus on ‘value’ and ‘efficiency’,135 which we see in policy-making design and delivery of neonatal services. Although stakeholders are rightly concerned to ensure value and efficiency, other ways of knowing about what constitutes ‘good care’ should be kept in view alongside the managerial goals of an increasingly industrial healthcare system, such as family integrated care.136–138 As our findings highlight, parents undertake much of the work to maintain continuity for their babies and want to do this as much as possible. This form of parental involvement is an invaluable resource, with the potential to support efficiency and value by relieving pressure on clinical staff. However, place of care discussions should include assessment of the burden placed on parents of various socioeconomic backgrounds and their consequent ability to maintain continuity work in the face of disruptions. Work to support continuity for parents is not only a vital element in improving parents’ subjective experience of neonatal services, but there is also strong evidence suggesting that continuity reduces stress on baby and both short- and long-term developmental outcomes.136,138

Diversity

During the study period, we encouraged staff and parent participation. While we acknowledge that not routinely collecting demographic data about our participants may be considered a limitation, we attempted to make our study population as inclusive and representative as possible. We sought participation of individuals from a range of socioeconomic backgrounds and from ethic minority groups. We sought to ensure that participants reflected the diversity of experiences of neonatal care. Our aim was to include a broader group of parents than might often choose to participate in research. We wished to capture diversity of experiences and/or perceptions of neonatal care to strengthen the research findings and increase the generalisability of the results of the study.

Limitations

The verbatim quotes reported in the text reflect perceptions within the cohort of 15 doctors/nurses and 48 parents studied. Fieldwork further to explore their perspectives on management, and additionally interviewing managers around funding and flow, and validating these observations, was not possible, nor the purpose of the OPTI-PREM project. This could potentially be an area of future study.

Summary points from OPTI-PREM qualitative ethnographic study, workstream 4

What was already known prior to this study

• Parents’ perspective on the care of the babies has been under-represented in clinical decision-making on place of birth and care.

What this study adds

• Staff: make decisions in an unstandardised, rapidly evolving and uncertain way.
• Organisation of work and finding capacity for babies is labour-intensive.
• For parents, continuity of care is most important, together with steps to maximise development and homecoming.
• Parents want more involvement in care and in understanding the decisions made around their baby.
• Support for parents’ emotional and physical well-being was important.

How this study may affect policy

• Discussions and reviews on how resources are employed in neonatal units to both improve the efficiency of staff working and improve the experience of babies and families is required.