Itive and Cdical Care Nursing (1992) 8,.%?-39 0 Longman Group UK Ltd 1992

The follow-up care of babies discharged from special care baby units in England and Wales between 1988 and 1989

Vivien Turner

This survey of District Health Authorities in England and Wales forms part of a wider study into the needs of babies discharged from special care baby units in South Glamorgan Health Authority. The aim of the survey was to find out what types of care were offered to babies who had been in a Special Care Baby Unit (SCBU) and their families following the babies’ discharge from hospital. This in turn raised interesting issues concerning the community care of these babies and their families which are discussed in this article.

It has been claimed that the period immediately

surrounding birth is crucial for the bonding of a

baby with its mother (Klaus et al, 1972; Campbell

8c Taylor, 1980). It is not clear whether the effects of the trauma following separation at birth do have long term deleterious effects on

bonding in humans, but in the short term it is very distressing (Mercer et al, 1990). In Britain

the main cause of separation is the poor health

status of a baby at birth necessitating admission

to a Special Care Baby Unit (SCBU).

Fewer than 10% of babies are admitted to

Special Care Baby Units in Britain, and although there has been a decline in the number of babies

admitted the length of stay has increased.

Babies are not discharged from SCBU until they are medically fit, but this does not neces-

Viviem Turner Bsc, (Econ) Hons, MA (Econ), RGN HV, Community Nurse Researcher, South Glamorgan Health Authority, 15 Dulwich Gardens, Cardiff, CF5 1SE

(Requests for offprints to VT)

Manuscript accepted 5 November 1991

sarily mean that they are the same as non-SCBU

babies in their care needs. Small-for-gestational

age babies have been rated as more difficult to

feed than full-term controls (Mullen et al, 1988;

Lissenden, 1984), and a higher frequency of

medical problems have been reported in pre-

term than in control infants in the first year of life (Greenough et al, 1990). The trauma of

separation combined with parents’ perception of

their baby as more ‘difficult’ or ‘delicate’ may suggest that these families would benefit from

careful follow-up care in the community.

There are no national guidelines for the follow-up care of babies who have been dis-

charged from a SCBU. At the beginning of this

study it was known that the type of follow-up care that was offered varied between health authorities, but very little information was avail- able on the different schemes that were oper- ating. It was felt that survey information on the care available would not only be useful for the study, but would also be of widespread general interest.

33

34 INTENSIVE AND CRITICAL CARE NURSING

Table 1 Gross NHS Expenditure Per Head of Population 1997. 1999

Countrv f

England 371 Scotland 457 Wales 403 Northern Ireland 460

Source: Welsh Office

directors of midwifery of those DHAs who had

initially failed to respond.

The questionnaires were coded, and a simple statistical analysis of the frequencies of the

different types of care and reasons for employing a nurse was undertaken, as well as a

Chi Square analysis of the relationship between the type of cover offered in DHAs with and

without specialist community nurses.

METHOD RESULTS

A pilot letter was sent to DHAs in England,

Scotland, Wales and Northern Ireland reques-

ting information about current policies and

practice concerning the follow-up care of SCBU babies. The replies revealed widely differing

practices and policies throughout the British

Isles, and in order to obtain a clearer under-

standing of current provision, a structured ques-

tionnaire was then sent to the Directors of

Nursing Services (DNS) for the Community in

England and Wales. The aim of this was to find

out the type of post-discharge care offered to the

families of SCBU parents, changes that had

taken place in the DHAs’ policy over a 5-year period, and some indication of the respondents’

view of the need for specialist help. Since fund-

ing appeared to be an important issue in the

provision of these services, it was decided that

Northern Ireland with its higher health funding

should not be included in the survey. (Table 1).

Three months later, the same questionnaire was again sent to the DNS (community) and the

Table 2 Types of nurse employed by DHAs offering a sPecklist service

N %

SCBU Sister 9 12 Specialist Midwife 18 24 Specialist Health Visitor 4 5.3 Liaison Midwife 11 14.7 Liaison Health Visitor 28 37.3 Other 5 6.7 Total 75’ 100

*This figure exceeds the total for DHAs offering a specialist service as some DHAs employ more than one type of specialist.

As 140 completed questionnaires were returned

the final response rate was of 69.3% of all DHAs

in England and Wales. Of these, 63 (46.3%) of

DHAs employ a nurse or midwife who has sole or partial responsibility for babies discharged

from SCBU. There is great variation in the type

of nurse employed and in the operational poli-

cies of the employing health authorities. Specialist midwives and health visitors form 36%

of all specialists employed for this purpose,

SCBU sisters with responsibility for discharged

babies 12%, and liaison midwives or health

visitors 44% of all specialists (Table 2).

To some extent the choice of speciality depends upon the way in which the needs of

these babies are perceived. If the emphasis is placed on the child’s immediate ongoing medical

and nursing needs, than a SCBU sister may be

preferred. If the medical fitness of the dis-

charged baby is emphasised, and concern focuses on the baby’s integration into the family

after a distressing separation and on the social

needs of the family, then the choice may be a nurse with community training.

Over 53% (53.8%) of the responding health authorities did not employ a nurse with special responsibilities for the babies discharged from SCBU. Respondents were asked the reason for not employing a specialist, (Table 3) since it may appear initially that the need for post-discharge care is very great. These babies will have been smaller or iller at birth than babies not admitted to SCBU, they will have been separated from their mothers at or soon after birth and will have received intensive medical and nursing care in an environment that will have not helped a baby

INTENSIVE AND CRITICAL CARE NURSING 35

Table 3 Reasons for not employing a specialist nurse or health visitor for babies discharged from SCBU

N %

Inadequate funding Low no. of births SCBU Sister will visit

if necessary Large area Not necessary Logistic reasons Currently being reviewed Other Total

27 52.9 6 11.8

2 3.9 2 3.9 5 9.8 2 3.9 5 9.8 2 3.9

51 100

In those DHAs where specialists are not

employed, the care is provided by the com-

munity midwife or family health visitor. In only

two responses from DHAs surveyed was it men- tion that SCBU nurses or midwives make visits to

babies at home when necessary, and it appears

that full cover is unlikely to be available to these

babies once they are over 28 days old (Table 5).

This difference in the extent of the cover that can be offered by DHAs employing specialists

and those without is significant (p = 0.001) and is

an important finding of the survey.

or its parents to establish a care routine or Table 5 confidence in parenting skills. It could be argued Type of cover provided when babies are over 28 days

that the longer a baby spends in SCBU the more in DHAs with no specialist follow-up and in DHAs

difficult it will be for the family to adjust. employing specialists

However it could equally be argued that as a DHAs with DHAs without

result of their care and treatment, there is no real specialist specialist nurses nurses

difference between the majority of SCBU Full cOver dischargees and any other babies going home for

18 47.4 5 6.9 7 days a week 9-5 4 10.5 2 2.8

the first time. Standby 3 8.0 1 1.4

Ten per cent of respondents felt that there was On Call 4 10.5 2 2.8

no need for such a nurse to be employed, and a Weekdays9-5 3 8.0 45 62.5

Standby 0 0 8 11.1 further 12% felt that there were too few babies to On Call 2 5.2 7 9.11

justify such an appointment. The main reason pTT Cover 2 5.3 0 0 On Call/Standby

given for not offering specialist services No information 0 0 1 1.4 2 5.2 1 1.4

however, was lack of funding (53%), which does Total 38 72

suggest that in many health authorities SCBU

babies are seen as being a distinctive group who

may well have specific nursing needs. There is

further support for this proposition in that the

main reasons given for needing a specialist nurse NURSING OPTIONS AVAILABLE -

were the need for specialist knowledge (31%), THE SOLUTIONS

and the need to provide families with continuity

of care (22%) and support (20%) (Table 4).

Table 4 Reasons why some DHAs perceive a need for specialist community nursing for SCBU babies and their families

N %

Specialist knowledge needed 15 32.6 High case-loads for HVs 1 2.7 Families need support 10 21.7 Continuity of care needed 11 23.9 Babies being discharged earlier 8 17.4 Would allow babies to go home earlier 1 2.2 Total 46 100

For any group with special needs, there is clearly

an advantage in offering nursing posts which

allow the development of specialist skills in one

area. Expertise and knowledge is acquired, the specialist develops a close working relationship

with doctors, social workers and others in the

same field, and the smaller and homogeneous case load should allow the development of standards of competence and excellence which might otherwise not be possible. Yet the argument is not entirely one-sided. If SCBU babies are viewed as a group with distinctive

needs, then specialist nursing is justified. If they are viewed as a group of neonates whose prob-

36 INTENSIVE AND CRITICAL CARE NURSING

Table 6 Type of cover provided by District Health Authorities with and without specialist nurses

With Without Soecialist Soecialist All DHAs

Group A - Full cover Group B - 7 days a week Group C, D, E - less than

7 days a week All arouos

18 5 23 11 5 18

7 61 68 36 71 107

X2 = 45.95 greater than X2 0.001 = 13.815 (df = 2)

lems are a magnification of those experienced by

other babies and their families, then the need for a specialist diminishes. In this latter case the

established community and midwifery and

health visiting services may be preferred. Fami-

lies who already know their community midwife

or health visitor should benefit from the prac-

titioner’s knowledge about the support groups

and services in their community. For the family

health visitor or community midwife, working

with these babies will develop their skills and

their knowledge base, and there should be fewer

problems with excessive time spent travelling between visits.

Given this rather ambivalent picture, there appear to be a number of options available using

either hospital or community-based nurses. If

established community services are used it is

possible to develop a model of minimal guidance

in which the professional training and expertise of the practitioner is relied upon to provide an

appropriate service. An alternative to this could

be a model ensuring highly structured guidance and uniformity of practice. This is a style of

management which details such things as the

frequency and timing of visits, follow-up pro- cedures in case of problems, liaison protocol with other agencies and with the hospital medical and nursing staff, and so on.

When specialist nurses, midwives or health visitors are considered appropriate, the options become more varied. Specialists work both part- time and full-time and may come from a variety of backgrounds and may be based either in hospital or the community. Liaison nurses gen- erally work from a hospital base and usually have a wider responsibility in paediatrics. The work

styles and opportunities offered in the different

options are discussed below (Table 6).

1. intensive care in the community from a hospital or community base -the specialist neonatal nurse health visitor or midwife and the discharged baby

The nursing expertise found in SCBU can be

offered in the community by employing

specialist nurses who may be based either in

SCBU or in the community, but who will also visit discharged babies at home. This can mean

that individual nurses are employed or that

there is a cadre of SCBU nurses rotating between the community and SCBU. The following quota-

tion from a special care sister responsible for

community follow-up gives an idea of how these

options can work:

‘For each of my shifts I work half in the

hospital and half in the community. . . .I have a nursery nurse who covers for my days off

and holidays. We liaise with the health visitors concerned notifying them when the babies are discharged from the hospital, and that we are visiting. We then notify them when we discharge our babies from our care or if there are any problems. We sometimes share the visits with the health visitor on a weekly basis or we may totally care for the babies ourselves.

We follow-up all the pre-term babies and

some sick full-term infants. Also we visit some babies who are discharged home who are still jaundiced. We visit weekly to check and refer

INTENSIVE AND CRITICAL CARE NURSING 37

back to the consultant pediatrician where

necessary.

Our pre-term babies are followed up until

they weigh between 2.0-2.5kgs, we weigh them once a week. If any problems arise we

can refer them directly back to the consultant

concerned.’

Very few DHAs employ specialist health visitors

to work with all or some SCBU dischargees and

their families (5.33% of all specialists). There is

not enough information available from this survey to indicate whether or not a nurse with

health visitor training would work in a way that

was qualitatively different from that of other

neonatal nurses or midwives. One retired

specialist health visitor interviewed felt that the

problem was to find a person with the ‘right’ qualities rather than someone with specific quali-

fications. The advantages of this community provision is

that the nurses have expertise in the care of

SCBU babies, and an up-to-date theoretical

understanding of the medical and nursing prob-

lems. The scheme can also offer comprehensive

cover if a team of nurses are employed or if the

arrangements are flexible. One community neo- natal midwife, for instance, works ‘flexy’ hours.

‘She is prepared to work when her clients need

her, maybe the weekend, evening or even night.’ The nurses’ familiarity with SCBU will also

facilitate communication between the com-

munity and the hospital, an area of nursing care that can be difficult. In addition, they will

already know the parents of the babies they visit

and this will be a valuable source of continuity.

As one family care sister notes,

‘Families are very pleased to welcome me into

their homes, and say they feel able to commu-

nicate much better with someone they have come to know during their time of trial and worry, when they were perhaps even unable to think further than the next hour, wondering if their baby might not survive. Families defi-

nitely appreciate the continuity of care and the support given. They realise that I know all

they have been through and we can pick up where we last left off without inhibitions.’

The other great advantage of a specialist nurse

who visits the home lies in the opportunity it

offers to find out exactly what is going on. The

retired specialist health visitor made the follow-

ing comment about this:

‘I would try to get into the home as soon as

possible, I tried to watch a feed, at least a normal feed, so that I could see what was

happening. I found that it was easy to misin-

terpret what people were complaining about.

It happens in clinics . . . you can see that there is a crossed wire. The mother is complaining

about something which the doctor or the

health visitor or the midwife is interpreting on

the basis of their experiences and not what the

mother is actually saying.’

Whatever the strengths of these models, they are

not always easy to implement. If the sisters are

hospital-based then the scheme has staffing implications for the special care baby unit. It may

also lead to opposition from community trained

staff if the specialist is not community trained.

This is a problem which has already contributed to the failure of the scheme in at least one DHA.

The argument against hospital-based commun-

ity nursing is that community nursing is quali-

tively different from hospital nursing and that

working in the community requires further

training. Although this problem can be over-

come by offering community training to SCBU

nurses, there is a further objection that such a

scheme simply defers the transition from hospi-

tal-based nursing care to community-based care.

This may be to the detriment of the community

staff who could subsequently find it less easy to form a relationship with a family, or who may

already be involved with other siblings. Careful

planning is needed to prevent distortion of the holistic approach to the family which is the

hallmark of health visiting.

2. Liaison midwives and health visitors

While the use of SCBU nurses and specialist midwives in the community can be very success- ful, it remains an unusual option. It is far more usual for DHAs to employ midwives and health

38 INTENSIVE AND CRITICAL CARE NURSING

visitors working either part-time or full-time in a

liaison capacity (Table 2). This group of special-

ists appear to be the most popular response to the problem of follow-up, forming over half of

all specialists. Of these, 37.37% are liaison health

visitors, and 14.6% liaison midwives. It should be

remembered, however, that these liaison special-

ists may have responsibilities for other pediatric dischargees, so they are frequently not working

solely or mainly with premature or low

birthweight babies.

It is difficult to generalise about this group of

nurses who vary considerably in their training

and work patterns. They may spend little or no

time in the community, and certainly spend less

time in the community than specialist midwives, neonatal nurse or health visitors. This quotation

from the letter of a neonatal liaison health visitor

illustrates these nurses’ very different remit.

‘Most of my day to day work involves counsel-

ling of parents on the special care baby unit: 1

attend the ward rounds 3 mornings a week in

order to be updated on the babies’ condition; I

also attend the weekly psycho-social work

meeting which we have once weekly - it’s a

time for discussing the babies in the context of the family situation and to assess the family’s

reactions and needs and plan any manage- ment arising. One afternoon a week is spent

covering the follow-up baby clinic and from

there picking up and referring anyone with

special health visiting needs; I also refer babies

who failed to attend the clinics. One day a week

is spent doing liaison - I give the health

visitors of babies currently on the special care

baby unit a weekly telephone update on the baby’s condition. It is also a time for sharing relevant information on the families’ social situation; I also send, on babe’s discharge, a written summary to the health visitor on the babies’ medical condition, implications and future . . . I also refer relevant babies to the

specialist health visitor who sits on the special

needs team . . . 1 also attend relevant case conferences.’

Teaching nurses and parents, and bereavement counselling also form an important part of this liaison neonatal health visitor’s work.

One advantage of this scheme is that the liaison health visitor or midwife can not only

cover all SCBU discharges, but may also have responsibility for other children who have been

in hospital because they have other special

needs. It also allows the health visitor to continue her regular contact with the family as soon as the

baby has been discharged from hospital, and avoids having another specialist visiting at the

same time as, or as an alternative, to the health

visitor. The main difficulty with this option is in

ensuring that the community staff are given the

appropriate skills and knowledge they need to

deal with the particular problems of premature,

low birthweight or ill babies. The liaison between

hospital and community staff may need to last for some time, and with heavy health visiting

caseloads the initiative may have to be taken by

the liaison health visitor.

3. District health authorities with no specialist nurses

DHAs not employing a specialist nurse rely on

the community midwifery and family health

visiting service available to all families with

newborn babies. In this group of health authori-

ties it is possible to distinguish between those

providing specific guidance on the follow-up of special care babies and those with no specific

follow-up policies.

Not all DHAs offer guidance on the follow-up

care of SCBU babies.

‘After discharge these babies are followed up

in the usual way, by the midwife up to 28 days

if appropriate, and by the health visitor

routinely.’

In this health authority there are no special arrangements for the care of babies discharged from SCBU, and it is left to the professional judgement of practitioners to decide upon the frequency and timing of subsequent visits.

In contrast with this DHA there are some which have developed specific discharge poli- cies.

‘The health visitor will telephone the SCBU weekly to check on the baby’s progress. . . (and

will) . . . aim to visit the unit to meet staff and

parents and to arrange a pattern of home

visiting according to the needs identified.’

Other aims stated in these guidelines are a 48 h notice of discharge and a visit by the health

visitor the day after discharge. Despite these more detailed guidelines, all the

job specifications for specialists that have been

obtained are invariably more detailed in identi- fying areas of community care that need to be

undertaken. This clearer conceptualisation of

the needs of babies and their families discharged

from SCBU, coupled with the extra time that

specialists have for visiting these families, makes

it difficult to compare specialist and non-specia- list options; so that employing a specialist should

inevitably mean a better overall service. There

are a few health authorities which are trying to

improve the quality of care offered by non-spe-

cialists either by providing a programme of

in-service training in relevant areas (such as

nutrition and feeding for low birthweight babies), or by ensuring that families with extra

health visiting or midwifery needs are given

more attention. Until this has been done and

assessed, a specialist option will always appear to

be the best solution to the problem of following- up special care babies.

CONCLUSION

This survey indicates the SCBU dischargees are generally perceived as a group of babies who

may need intensive specialist community care.

Some may still have ongoing medical or develop-

ment problems which require follow-up care in

the community, and in many cases managers felt

that the families required more intensive

support and advice than families whose babies’ health status at birth was good. Even in DHAs not employing specialists there is an indication that over half the nurse managers would like to be able to provide some specialist input.

There are three categories of care provision that can be identified:

INTENSIVE AND CRITICAL CARE NURSING 39

The employment of specialist neonatal

nurses, midwives or health visitors based

either in hospital or in the community, but

visiting families at home. Liaison health visitors or midwives bridg-

ing the communications gap between hos- pital and the community, coordinating the

relevant services and offering expert

advice to other professional health

workers. These workers may see families in hospital clinics but are unlikely to visit

families in the community regularly.

The use of the generic community mid- wifery and health visiting service.

DHAs with specialist services provide clearer and more detailed guidelines for the follow-up

care of SCBU dischargees, they are able to

ensure regular monitoring of babies, and are

more likely than other DHAs to provide full

cover after 28 days. If there is a specialist who

makes home visits then families will receive visits

more frequently than in DHAs with no specialist

service. The clearer and more detailed identifi-

cation of the nursing needs of SCBU discharges

and their families that is found in DHAs

employing specialists makes it difficult to

compare DHAs employing specialists with those which do not.

References

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Greenough A, Maconochie I, Bulena Y I990 Recurrent respiratory symptoms in the first years of life following pre-term delivery. Journal of Perinatal Medicine 18: 480-494

Klaus M H et al 1972 Maternal attachment - importance of the first post partum days. New England Journal of Medicine 286: 460-463

Lissenden J V 1984 Parental attitudes to premature very low birthweight babies. In: Field P P (ed) Perinatal Nursing. Edinburgh: Churchill Livingstone

Mercer K T et al 1990 Predictors of parental attachment during early parenthood. .Journal of Advanced Nursing I5 (3): 268-280

Mullen M et al 1988 Mother-infant feeding interaction in full-term small-for-gestational age infants. ,Journal of Paediatrics 122: 143- 148.