variations in family visiting policies in neonatal intensive care units in eleven ec countries

Paediatric and Prrinatal Epidemiology 1994,8,41-52

Variations in family visiting policies in neonatal intensive care units in eleven EC countries

Margaret Reid*, Else Andersent and EC Study Group of Parental Involvement in Neonatal caret *Department of Social and Economic Research and Department of Public Health, University of Glasgow, tDepartment of Neonatology, Syghuset Hillerod, Denmark

Summary. The paper addresses the lack of information concerning parental visiting in neonatal intensive care units (NICU) across European Community (EC) countries. It reports on a study involving 11 EC countries and 38 units carried out under the auspices of a Concerted Action project. Information gathered from the 38 units yields data on the parental and family visiting policies. The study reveals a wide variation in the policies from considerable parental access to the infant in the NICU to restricted visiting. Policies concerned with unit facilities and unit support staff reflect the orientation of the overall unit policy with regard to visiting.

Introduction

Neonatal intensive care units have become an accepted feature of hospital care across the EC within the last two decades. The units have successfully introduced high technology into the care of the newborn and reduced the number of children dying.' While the technological aspects of neonatal care continue to improve the mortality and morbidity of infants other changes are currently also affecting the neonatal environment. Publications from Europe and the USA have revealed a

Address for correspondence: Dr M . Reid, Department of Public Health, Glasgow University, 2 Lilybank Gardens, Glasgow G12 8RZ $ Other group members: H. Adam, Athens, Greece, H. Daniels, Leuven, Belgium, R. de Leeuw, Amsterdam, Netherlands, F. Gorman, Dublin, Ireland, M. Leloup, Toulouse, France, G. Mcllwaine, Glasgow, United Kingdom, E. Schmidt, Dusseldorf, Germany, M. Schroell, Luxembourg, A. Torrado, Coimbra, Portugal, M. Kaminski, France (Director of EC Con- certed Action Project)

41

42

concern over staff/infant/parent relationships2r3 and many units are encouraging parents to take a more active role in the care of their infant in hospital.4-5 In some countries units have been adapted considerably to incorporate the family.6

Despite the acknowledgement that family contact with their infant in the unit may have longer-term positive implications for the integration of the infant into home life,7,8 to date the ‘softer‘ aspect of neonatal care has been the focus of few descriptive studies. Apart from some isolated studiesPJO information about parents’ visiting patterns and in particular how parents spend their time in the unit is seriously lacking. Instead, the majority of published literature on the more social aspects of neonatal care tends to focus upon particular experimental pro- grammes11,12 rather than reporting what is the norm for parents visiting a unit in a particular region or country. This has led to a situation whereby workers may be familiar with arrangements in their own unit but not always their own country. Certainly, less is known about international variations relating to the broad issue of parents and family visiting. While a unit’s staff understandably may feel that their practices are best, an analysis of such variations can be useful to place a unit’s practices into a broader perspective and to encourage some form of self-evaluation.

At an international as well as a national level the lack of basic data about the units has made it difficult to gain a fundamental understanding of the work of NICUs. Internationally there is not necessarily agreement over the definition of neonatal intensive care; for the purposes of the project reported below the agreement reached was to accept the British Paediatric Association (BPA)/British As- sociation of Perinatal Medicine definition of intensive care with its definitions of four levels of neonatal care.13 Furthermore in countries with a strong private health service (for example Greece and Italy) baseline statistics may be lacking and the number of NICUs may not be known while information may not be routinely gathered about the infants in their care. From a questionnaire circulated to 22 countries, a WHO study of the perinatal services confirmed the lack of universal definitions of neonatal intensive care and official recommendations for facilities and equipment. Furthermore they noted ‘only five countries routinely collected statistics on neonatal intensive care’.14

A few international comparisons of practices in NICUs do exist. In their book Mixed Blessings,’s the authors studied policies, decision-making and the socio- psychological services offered by NICUs for families in the USA, England, Nether- lands, East and West Germany, France and Brazil. Levin in her thorough review of bioethical issues in neonatal care16 highlights the lack of comparative analysis upon which to base more detailed research. These studies underline the range of practices at an international level; neither is drawn from a widescale study of staff or consumer experiences but rather from discussion and (in Levin’s paper) from secondary analysis of data.

The purpose of this paper is to aid the international exchange of ideas and practices by describing unit policies associated with parental visiting in EC coun-

M. Reid and E. Andersen

NICU visiting policies in EC countries 43

tries. The data derive from an EC study group concerned with parental involvement with their very low birthweight (VLBW) infants (< 1500g) in NICUs in 11 EC countries.

Methodology The study was mounted as part of a major EC Concerted Action project entitled ’Pre, Pen and Postnatal Care Delivery Systems’.I7 Because of the paucity of baseline data in the field of parental visiting and involvement in neonatal care, it was agreed that the aims of the sub-project study should be firstly, to describe parental visiting and parental involvement with VLBW infants in NICUs and, secondly, to ascertain whether there was any relationship between such involvement and parents’ subsequent use of the health services. Eleven out of the 12 EC countries took part in the study (Table 1). Data analysis was carried out in Glasgow, Scotland using the statistical package SPSS-X on the university’s ICL mainframe computer.

The study comprised three stages. The first stage involved a policy questionnaire which was completed by the head of each unit, data from which form the basis of this paper, and also a staff questionnaire given out to the total sample of staff in the participating units. The second stage involved the sampling of infants in the study and interviewing their parents when the infant (still in the unit) was between 2 and 7 weeks of age. A follow-up questionnaire sent out to the mother when the infant was 9 months old formed the third stage.

Participation from eleven EC countries was good and overall only one unit declined to take part in the study. A national co-ordinator from each country was nominated and it was their responsibility to recruit other units into the study and to run the project locally. Spain was not included because the co-ordinator was not able to participate in the study early on, and disappointingly only one German unit (a country with a large number of NICUs) took part in the study because the German co-ordinator was heavily committed elsewhere and involved only his own unit. In this study Scotland represented the UK; methodologically, this latter decision was not thought to influence the results, and as in many studies England and Wales are the only UK representatives this was seen to be an acceptable alternative.

On-site visits by the co-ordinator of the study to 25 of the 38 units provided additional observational information. At least one unit was visited in each country, resources and time restricting visits to all units. The co-ordinator deliberately visited units across the range of visiting policies and a series of photographs taken within the units acted as secondary descriptive material. A meeting was held between each unit director, the co-ordinator of the project for that country and the overall study co-ordinator (MR) although even with translation available, language barriers inhibited a full discussion of unit policies and practices. Notes of each visit were written up by the study co-ordinator in the normal manner of observational work.

44 M. Reid and E. Andersen Table 1. Unit details and family visiting policies in NICUs by country and unit (n = 38)

Country Unit Teaching Public No of VLBW Can visit any time: Hospital Hospital /year* Parents Sibs G parents

Belgium

Denmark

France

Germany Greece

Ireland Italy

Luxembourg Netherlands

Portugal

UK

1 2 1 2 1 2 3 4 5 6 7 1 1 2 3 1 1 2 3 4 5 1 1 2 3 1 2 3 4 5 6 1 2 3 4 5 6 7

\

i \

\

\

\

\

\

\

\

\

\

\

\

\

\

\

i X \i X 4 X i X ./ X X d v' V

\

i i X X

X X V

I

\

\ I

\

i \

'1

d

.I X

c

\

\

v I

\

I

v' I

Y

v' 4

i ./ i i , v

I Y

i d ./ ./ v' d d .i

124 53 16 40

234 73 85

100 100 108 82 51 25 40 40 19 60 33 52 34 33

190 50 82 51 65 50 60 70 43 47 79 64 45 40 36

-

25

\

\

\

\

ii

li R

R R \

\

li

li \

R \

\

L

V

\ I

i R V

v

v' \

\

J

i v' i VI

'I

v

R R ./ R X X X X X X X X R R X R X X X R X X R

I

i X R d R R R R

v' , v

v , i V'

R R J R X X X X X X X i X X X R R X X X X R R

i X R v' R R X R i J ./ i R

\

\

./=yes; X = no; R = visiting restricted; * VLBW = infants admitted to unit per year; G parents =grandparents; and sibs =siblings

The study group wished to study a random sample of participating NICUs from each country, an ideal difficult to achieve at an international level. The


number of NICUs in two countries was unknown and for this reason, and because of the strength of existing links with certain NICUs through previous research or because of staff interest in the topic, a non-representative group of 38 units ulti- mately took part in the policy review. The group were concerned with document- ing the nature of the 38 units. All NICUs included in the study offered 'Level 1 Intensive Care' and in this respect were typical of the units in their country. Inevitably, however, as with many studies, there was a bias in the sample towards a certain type of hospital with 28 out of the 38 units being sited within teaching hospitals, and 34 being publicly financed hospitals (Table 1). The size of the units taking part in the study also varied considerably. Approximating size with the number of very low birthweight (VLBW) infants admitted into the unit annually, the range is from 16 to 234, with an average of 65, suggesting that many of these units acted as regional centres. The percentage of the population covered by the participating units is presented in Table 2. Because of the sample it is not argued that the findings represent the policies of all units of each country. Nevertheless, it is suggested that the range of policies and practices which the study reports is indicative of those found across the EC.

The policy questionnaires which form the basis for this paper were completed by all of the 38 heads of units. The questionnaires covered a range of policies relating to parental visiting and involvement, for example, overall visiting policy for different members of the family, staffing at each unit, facilities and support staff of each unit, and changes to the unit which either had been or were planned in the near future in relation to parental and family access to the infant. All questionnaires were piloted in each language and then back-translated.

Future papers will report on other stages of the study although a key question for the project must surely be whether or not visiting polices and visiting patterns

Table 2. I Percentage of births within the country covered by the participating units

Belgium Denmark France Germany Greece Ireland Italy Luxembourg Netherlands Portugal United Kingdom

18 13 33 3

11 12

not known 100 20 80 9*

*. All participating units in Scotland; policy study covered 32% of population

46

affect parents subsequent use of the health service. Theanalysis for this final part of the project is not complete although De Leeuw et al. describe a clear relationship between staff views and unit policies which was shown to exist in the analysis of staff questionnaires.ls At present the data also suggest that parental visiting behav- iour does have some influence over the mother’s retrospective feelings about the unit and her confidence with infant management once the infant is discharged home. There appears to be less support for a link between mothers’ visiting patterns and their subsequent attendance at health service clinics both in and out of hospital.

M. Reid and E . Andersen

Results

Sites and staffing

Twenty-one of the NICUs were housed in the same building as the maternity hospital, a further nine units on the same site and eight units on a different site. Twenty-two units were purpose built. The staffing in terms of nursing ratios per cot in each NICU varied and details are presented in Table 3, by country. It is useful to note that some countries have no official standard of staffing per cot (e.g. Denmark, the Netherlands). Some practitioners use informal standards of staffing ratios while others refer to levels set by the BPA, currently 5.5 nurse whole time equivalents (wte) qualified and trained per cot for Level 1 Intensive Care and 3.5 nurses (wte) qualified and trained per cot for Level 2 Intensive Care.I3 Accepting that the figures from Table 3 related to Level 1 and 2 care, the table suggests that some units were understaffed.

Table 3. Nurse staffing ratio to intensive care cot in participating NlCUs

Country Ratio of full-time nurses/ intensive care cot in participating unit

Belgium Denmark France Germany Greece Luxembourg Italy Ireland Netherlands Portugal United Kingdom

3.6 2.6 2.8 2.0 I .3 3.5 3.5 3.0 3.9 3.5 3.2

NlCU visiting policies in EC countries 47

Visiting policies

All units have policies relating to the amount of parental contact regarded as appropriate. Table 1 indicates the policies relating to parental visiting. Units varied from openness to restrictiveness, i.e. the degree to which parents had access to the units. Twenty-nine of the units reported open visiting policy for both parents and the remaining nine units reported a policy of restricted visiting. On-site visits revealed that in the majority of ’open’ units parents were allowed 24 hour access, while in restricted units visiting hours ranged from no parental visiting permitted if the infant was in intensive care to restricted visiting of a few hours. Table 1 also indicates variation in policies relating to sibling and grandparent visiting. A correlation exists between those units that restricted parents’ visits and those that did not allow other family members to visit.

Facilities

Despite the fact that the majority of units report policies of open access for parents, Table 4 indicates variation of unit facilities for parents and staff. Staff were better catered for in terms of basic facilities such as showers or a staff room (although on-site visits revealed that in many cases the room designated as a staff room was also an all-purpose room, e.g. a kitchen, a store room or an office). Relatively few of the units had a parents’ room exclusively for parents, in which they could sit or make themselves a hot drink or have other facilities to make the visit more comfortable. Toys were available in some’ NICUs for visiting siblings although in no unit was a separate nursery provided. Some units did have overnight accommo- dation although this was virtually always used for the mother and as a scarce resource tended to be reserved for mothers immediately prior to discharge.

It is difficult with the small sample to ascertain patterns with regards to facilities. However, of the eight units which had a policy of all family visiting (parents, grandparents and siblings), six of these (out of a total of 16 units) had a parents’ room while a11 eight (out of a total of 15 units) had the facility for the mother to stay overnight in the unit. At the other end of the spectrum it was noticeable that units that offered restricted access to parents and no visiting to other family members provided, with one exception, nothing for the parents in terms of a room, a shower or the possibility of staying overnight.

Sources of support

Opening up a unit to include parents in the care of the infant implies not only providing facilities for the parents but also offering sources of support. Inter and intra-country variations in Table 5 are immediately apparent. For example the existence of a social worker attached to the unit was common in most units while

48 M. Reid and E. Andersen Table 4. Unit facilities for staff and parents by country and unit (n = 38)

Facility

Country Unit Parents Parents Parents Baby Staff Staff room shower overnight photo space shower

Belgium

Denmark

France

Germany Greece

Ireland Italy


Portugal

UK

1 2 1 2 1 2 3 4 5 6 7 1 1 2 3 1 1 2 3 4 5 1 1 2 3 1 2 3 4 5 6 1 2 3 4 5 6 7

\

i

i \

X X X X

i X X X

i X X X X \

\

i X X X X X X \

\

\

\

\

P

\

X X X

i X X X X X X X X X X X X X X

i X X X X X X X X

i

i

; X

X X X

X \

\

i

i

X X

X X X X X X X X X X \

\ .

X X

;<

i i

X X

\

\

\

\

i \

\

i X \

\

\

\

i

i

i

i

\

X X

X X

X \

\

i i X X X \

I

I

\I

\

\

\

X

i i \

\

\

\

I

\

\

\

\

\

\

\

i X X \

\

\

Y

I I

I

\

i i \

v \

i X X

\

i i \

\

\

\

\

i i

i

i

i

X X

X \

X

\

\

\

\

i v

\

Y

\

i X

\ =yes; and X = no

the absence of a psychologist, particularly in the UK, is also obvious (it is not normal policy in UK units to employ a psychologist). There were also local variations

N K U visiting policies in EC countries 49 Table 5. Sources of support in NICUs by country and unit (n = 38)

Facility

Country Unit Social Visits Psychol. Chaplain Admin. Home Parent worker recorded attached visits attached follow-up group

Belgium

Denmark

France

Germany Greece

Ireland Italy


Portugal

UK

1 2 1 2 1 2 3 4 5 6 7 1 1 2 3 1 1 2 3 4 5 1 1 2 3 1 2 3 4 5 6 1 2 3 4 5 6 7

d X d 4 i J

i X d X

I Y

i

i X

I

X X X X X X X J X J

i X X d J

(r

i

; I v

v

J X J 4 \I

Y

V I

v

i i X X X

i X X X X X X

J X

\

I Y

I Y

‘r I

i J X X X X X X X X X

X X X X V

\

i X X X X X X X \i X X X X X X X i X X

;; X X X J

d

d X d

rl

I \

Y

\

Y

,

>; i X X X X X X

i X X X X Y

i

i i

X

i X X X X X X d X X X

X X X X X X X

i X ; X X X \

I

i X X X X

, i X X X X X X X X X

i

i X

I

\I

X X X X X X X X X X

i X X \i

I

i X X X X X X i

X X X X X X X 4

X

; X i

v

v

;=yes; X=no; visits recorded, records kept of parents visits and phone calls; psycho1 attached, psychologist attached to the unit; Chaplain attached, Chaplain attached to unit and makes regular visits; home follow-up, follow-up in the child’s home by nurses; and parent group, parent support group.

50 apparent in the degree to which the units kept a record of the parents' contact with the unit by recording visits and telephone calls (defined on the table as 'routine records'). Support after the infant had left the unit was available in a few of the study units in the form of home follow-up (by nurses) and by the existence of parent groups which parents could attend both while the infant was in the unit and after. Although the question was not raised in the questionnaire, primary nursing, where a staff member is allocated to a family, was not practised by the majority of units.

M. Reid and E. Andersen

Discussion

Any analysis of policy is fraught with difficulty, no more so than internationally. Policy can exist at a number of levels from government to unit, and practice may not reflect that laid out in the policy directly. Nevertheless it is important to recognise the importance of policies as a baseline for an understanding of practice. In this case, unit policies may be seen as one measure of the extent to which units support the concept of 'open visiting'. As the data were gathered mainly from teaching units, one might hypothesise that the policies reported in this study represent the more progressive end of the spectrum and that national studies randomly sampling units might pick up a range of units in each country offering more restrictive policies and practices. Nevertheless the co-ordinators felt informally that the full spectrum of policies was represented in this study.

This study indicates that the concept of open visiting, of encouraging the parents and close relatives into the unit to be in contact with their infant when they want, has not yet been fully adopted as unit policy across the eleven EC countries. What exists is a variation in accessibility to the infant for parents and the family. At one extreme, units offered open access for the whole family to the infant, whilst elsewhere access was available to parents, although restricted for grandparents and/or siblings, with units varying to the extent they also offered good back-up facilities and sources of support. Units at the other extreme indicated through their policies that they were less willing to open up the unit to the family and offered families only restricted access, with units having respectively fewer back-up facilities and sources of support.

The relatively few units (8 out of 38) which had a policy of parent, grandparent and sibling visiting is notable. There is evidence to suggest that there are several reasons which may explain this finding. NICUs in the EC are in a period of transition from the traditional state with little parental involvement to the incorpor- ation of a more progressive policy of family visiting. A number of units are only part-way through this transition and so far have adjusted their policies and practices to incorporate parental visiting. Encouraging other family members into the unit represents the next stage, possibly requiring further adaptations of their policy. Visits to the units confirmed that some were severely restricted in the


potential to expand and adapt the unit whilst others faced financial restrictions on development. Data from elsewhere in this studyI6 has also indicated the role of staff attitudes in reflecting (and possibly helping to shape) unit policy. For those units where the move to encouraging parents into the units was recent, one might expect developments such as improved parent facilities and the introduction of other family members to occur once more staff confidence has been gained. Thus it may well be both practical and attitudinal factors which set the pace for change.

The review of the policies also suggests inter- and intra-country differences. Because of the sample, the authors are not in a position to explain completely either of these factors. The data suggest, however, that at a country level certain features have become an established part of the unit, for example, a social worker attachment appears common in most countries while, as already mentioned, a psychologist appears frequently in units in France, Denmark and Greece but not in Italy or the UK. Nursing staff ratios varied somewhat between countries but units with lower nursing/cot ratios did not necessarily have more restricted policies and it is not thought that this can explain inter-country variations.

Intra-country variations are as intriguing. Change occurs at a different pace even within a country; to begin to understand the range of policies, facilities and attitudes within a country one would look to a range of other factors which help shape the features of any particular unit, for example, professional links of each unit director, the ethos of the hospital (‘traditional’ vs. ’progressive’) and local resources.

This paper has only begun to document what is now accepted as a significant part of the neonatal care that the parents experience. Obviously more detail and more explanation wiII fill out the picture sketched above. Future reports from this study and no doubt from other studies will develop our understanding of what makes a good unit from the customers’ viewpoint.

Acknowledgements

The authors and the team would like to thank ail members of the participating units for their cooperation with the study, and the parents who took part in the study. Monique Kaminski offered valuable advice to the project team throughout the research and we should also like to thank her for her support. Dr Lesley Mutch provided helpful advice on an early draft and the authors are grateful to her for this.

References

1 survey of world literature. h n c e f 1981; 1:1038-1041. 2

Stewart AL, Reynolds EOR, Lipscomb AP. Outcome for infants of very low birthweight:

Harvey D. Parent-infant relationships. London: Wiley Medical, 1987.

52 3 Richards MPM. Parent-child relationships; some general considerations. In: Mother- child attachment in newborn infants. Editors: Davis JA, Richards MPM, Robertson NRC. London: Croom Helm, 1983. 4 Jenkins R, Swatosh Tock MK. Helping parents bond to their premature infant. American journal of Maternal and Child Nursing 1986; 11:32-34. 5 Zeskind PS, Iacino R. Effects of maternal visitation to preterm infants in the neonatal intensive care unit. Child Development 1984; 551887-1893. 6 Garrow DH. Special care without separation: High Wycombe, England. In: Motker-child attachment in newborn infants. Editors: Davis JA, Richards MPM, Robertson NRC. London: Croom-Helm, 1983. 7 Klaus MH, Kennel1 JH. Parent-Infant Bonding. London: C.V. Mosby, 1982. 8 Redshaw ME, Rivers RPA, Rosenblatt DB. Born Too Early. Oxford: Oxford University Press, 1985. 9 Daniels H, Caesar P, Buyse G, Eggermont E. Parental contact in the neonatal intensive care unit. European journai of Paediatrics 1984; 143:153-155. 10 Brown L, York R, Jacobsen B, Gennard J. Very low birth-weight infants, parental telephoning during infant hospitalization. Nursing Research 1989; 38233-236. 11 Rauh V, Nurcombe B, Achenbach T. et al. The mother-infant transaction programme. Clinical Perinatology 1990; 1231-33. 12 Rosenfelt AG. Visiting in the intensive care nursery. Child Development 1989; 51:939-941. 13 British Paediatric Association. Report of Working Group of the British Association of Perinatal Medicine on Categories of Babies Requiring Neonatal Care. BPA, London, 1992. 14 Nordio S, Sormi M, de Wonderweid U. Neonatal intensive care: policy plans, services and evaluation. In: Perinatal Health Services in Europe. Editor: Pfaff JML. London: Croom Helm for W.H.O. 1986. 15 Guillemin JH, Holmstrom LL. Mixed blessings: intensive carefor newborns. Oxford: Oxford University Press, 1986. 16 Levin B. International perspectives on treatment choice in neonatal intensive care units. Social Science and Medicine 1990; 30:901-912. 17 Kaminski M. Evaluation in Pre-, Peri- and Postnatal Care Delivery Systems, a European Concerted Action. 1992 Inserm Unite 149, Villejuif, France. 18 de Leeuw R, Cuttini M, Reid M. Staff views on parental visiting of very low birthweight infants in neonatal intensive care units. journal of Perinatal Medicine 1993; 21:43-52.

M . Reid and E . Andersen

variations in family visiting policies in neonatal intensive care units in eleven ec countries

Documents