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Neonatal intensive care units: visiting policies for grandparents
Midwifery (1991) 7, 122-132 ~) Longman Group UK Ltd 1991
Midwifery
Neonatal intensive care units: visiting policies for grandparents Hazel E McHaffie
Most n e o n a t a l intensive care units ( N I C U s ) in the U K n o w p e r m i t g r a n d p a r e n t s a n d siblings to e n t e r b u t t h e r e has b e e n n o systematic e v a l u a t i o n o f c u r r e n t policies for visiting. Postal q u e s t i o n n a i r e s w e r e u s e d to obtain d a t a f r o m all qualified n u r s e s / m i d w i v e s (N = 265) a n d d o c t o r s (N = 63) e m p l o y e d in the seven largest N I C U s in Scotland. S u b s e q u e n t l y , p a r e n t s a n d g r a n d p a r e n t s o f v e r y low birth weight ( V L B W ) babies w e r e sent q u e s t i o n n a i r e s o n e m o n t h a f t e r d e l i v e r y a n d o n e m o n t h a f t e r the babies' d i s c h a r g e h o m e . 93 families p a r t i c i p a t e d . A r e a s u n d e r investigation w e r e sources o f s u p p o r t a n d t h e i r p e r c e p t i o n s o f c u r r e n t visiting policies. Overall p r o f e s s i o n a l s f o u n d w o r k i n g with g r a n d p a r e n t s the least liked aspect o f t h e i r j o b a n d t h e r e was w i d e s p r e a d dissatisfaction with existing policies f o r g r a n d p a r e n t s ' i n v o l v e m e n t w h i c h w e r e n o t seen to m e e t p e r c e i v e d n e e d s . A l t h o u g h most g r a n d p a r e n t s w e r e t o l e r a n t o f the restrictions limiting t h e i r access, p a r e n t s w e r e f a r less satisfied o n t h e i r behalf. Families a n d s t a f f alike called f o r a revision o f policies a n d a m u c h g r e a t e r voice in decision m a k i n g f o r the p a r e n t s a n d relatives themselves.
INTRODUCTION T h e increasingly sophisticated technology which has enabled more and more premature and ill neonates to survive, has produced its own effects. Smaller and sicker babies are being admitted to neonatal units. Many survivors have resultant problems although exact figures of impairment are difficult to find since each research group uses slightly different criteria in their assessment (Diggory, 1981). A growing Hazel E McHaffie PhD, RGN, RM, Research Fellow, Nursing Research Unit, 12 Buccleuch Place, Edinburgh EG8 9JT, UK Manuscript accepted 9 May 1991 Requests for offprints to HEM
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number of premature babies are requiring long term hospital care for such conditions as bronchopulmonary dysplasia and these children seriously tax limited resources. Others who make better progress are discharged to peripheral hospitals or home when they are still very small and needing special care. As a result neonatal units concentrate more and more on the critically ill and chronically sick and see less of the steady progression to a fit and healthy baby ready for home. Since 1971 there has been a move to regionalise specialist neonatal care with a gathering together of experts, equipment and resources i n neonatal intensive care units (NICUs). This has meant that babies with or without their mother are sometimes nursed considerable distances
MIDWIFERY 123 away f r o m their families. I f they are subsequently transferred to a hospital nearer h o m e the parents and grandparents have a whole new range o f staff to relate to, who have not been involved in the earlier critical weeks. When special care units were first set up they excluded all family members, but a series of studies on the detrimental effect o f separation (see Klaus and Kennell, 1982) and a project investigating infection rates (Barnet et al, 1970) changed thinking, and parents' involvement became accepted (Brimblecome et al, 1978). Grandparents were one of the first groups to be included after the parents but to date there appears to have been no systematic evaluation of the impact of their involvement on either staff, parents or the grandparents themselves. T h e y have not of course been ignored. I n d e e d they receive a special mention in a n u m b e r of books written about or for such families (Redshaw et al, 1985; Sammons and Lewis, 1985). But what of research on their role and needs? W o r k has been undertaken on the role o f g r a n d p a r e n t s in 'normal' families (Cunningham-Burley, 1984; 1986), but little is known about the extended family where there is a sick baby. One small retrospective study conducted in Seattle, USA, (Blackburn & Lowen, 1986) explored feelings, perceptions and experiences of 83 grandparents and 50 parents o f p r e m a t u r e infants who had short stays in a neonatal unit. It revealed that grandparents felt that their own stress detracted f r o m the a m o u n t and effectiveness of the support they could provide for the parents. Another study involving indepth interviewing of 21 mothers of very low birth weight (VLBW) (a baby weighing 1500g or less at birth) (McHaffie, 1988) demonstrated that grandparents often did not know how to help the parents and the tension o f having a small sick baby in the family exacerbated latent stresses to the detriment of the most vulnerable parents. Most units in Scotland now permit grandparents and siblings to enter their nurseries but there are various restrictions on what they may do when there. These policies a p p e a r to have no foundation in research and, as has been noted elsewhere, it often falls to the nursing staff to enforce them (Pottle, 1990). So the present MIDW.
B
project set out to investigate the support these families received and the effectiveness of current visiting policies
METHOD T h e study took as its conceptual framework the phenomenological transaction model of coping p r o p o u n d e d by Lazarus anbd Folkman (1984). This model takes account of many dimensions within a person and his or her environment, changes over time and in circumstances, and emphasises the importance of each individual's own perceptions. T u r n i n g to others in one's social network is known to be a vital resource in times of stress and, for families with a VLBW baby, grandparents are a potential source of informal support about which more needs to be known. Both professional and lay respondents were recruited f r o m the seven largest neonatal units in Scotland. These units are in Aberdeen, Dundee, Bellshill, Glasgow (2), Irvine and Edinburgh, and are referral centres for the whole o f the country. In the first phase of the study questionnaires were sent to all qualified nurses/midwives (N = 265) and all doctors (N = 63) employed in these units. (Since in excess of 10% of all the staffwere neonatal nurses and not midwives the term 'nurses' will be used to include them all.) T h e i r data provided information on the impact on staff of current policies and their own perceptions of roles and needs. Seventy-five per cent (N = 199) of the nurses responded and 54% (N = 34) of the doctors. T h e second phase involved recruiting family members and this was effected through the mothers. For reasons of expediency and ethics, recruitment was ongoing for 6 months in 4 of the units and 12 months in the remaining 3 units. Access and ethical approval were negotiated separately in each case. Families were eligible for inclusion if the m o t h e r was English speaking with no previous VLBW infant, and the baby weighed 1500g or less at birth, and was a singleton with no congenital abnormality. Letters and consent forms introducing the
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research and inviting participation were given to the mothers one week after the birth of the baby by nominated liaison persons within each unit and the mothers themselves nominated any or all of the grandparents and the father if they were willing to be involved. Questionnaires were then sent to each family m e m b e r who consented, at one month after the delivery and one month after the baby's discharge from hospital. Liaison staff supplied fortnightly updates on each family until the baby was discharged home. Data were transferred to a m a i n f r a m e computer and analysed using SPSSX. T h e findings and discussion which follow will concentrate on those data which reflect both professional and family perceptions of grandparents' visiting in neonatal units.
FINDINGS Data generated by the nurses and doctors showed that grandparents were permitted to enter in all except one of the units. Specific restrictions on their activities were less clear since different views were expressed. T h e general consensus of more than half the staff in each case, however, was that they must be accompanied by a parent in two units; must not touch the baby in one; and were only permitted entry at specific times of the week in a f u r t h e r one. Numbers were restricted in two of these units.
The nurses' perspective When nurses were asked to rate various aspects o f their job, working with the g r a n d p a r e n t s was the least enjoyed part of their role. Only 17% (N = 34) rated it at 7 on a scale of 1-7 where 7 was 'really enjoy', and 1 'intensely dislike', and more than a quarter actually disliked it (Fig. 1). A n u m b e r c o m m e n t e d on the problems of finding time to speak with grandparents and felt that they did feel ignored at times: ' . . . I think [the grandparents] often feel overawed and in the way. They never seem to stay very long and always act apologetic as if they've done something wrong.'
Others were concerned about the information which grandparents received: was it adequate and accurate if passed on by parents? Who had prior rights to information in emergencies if grandparents were first on the scene? What should he done if g r a n d p a r e n t s wanted to know m o r e than the parents could handle? T h e needs and role of grandparents were clearly perceived as prinicipally to support the parents, understanding the stresses of the situation sufficiently well to be sensitive and useful to them: '[Grandparents] are worried about the strain that their son/daughter is going through. I feel that they should u n d e r s t a n d something about their grandchild's condition to lend support to the parents.' Only about half o f the nurses cited establishing a relationship with the baby as a need, but many made reference to the delicacy of the grandparents' position. T h e y were d e p e n d e n t on the parents allowing t h e m to be involved and their own needs were secondary to the parents' rights and wishes. Very few felt the grandparents' role to be to protect the parents f r o m problems or to get information on their behalf: 'Grandparents should be m o r e supportive than protective.' When specifically asked if they considered current policies met family needs, only 59% (N = 117) considered that they met the grandparents' own needs. All the comments made which gave reasons for this opinion related to the restrictions units placed on the grandparents which made it difficult for them to adequately support the parents. As a result 20% (N = 40) considered that these policies did not meet the needs of the of the parents either, although many exceptions were made to take account o f individual circumstances in every unit. Interestingly, 82% (N = 163) considered that policies were jointly decided by medical and nursing staff and a further 9% (N -- 18) understood them to be nursing decisions. Predictably, nurses who worked in the m o r e restricted units were m o r e likely to think policies did not match grandparents' needs than those
MIDWIFERY 125 Working with: Baby
Parents
Grandparents
Siblings
High Technology
Rating Missing Data
• • [] [] • [] []
1 2 3 4 5 6 7
Fig. 1 Rating of nurses' enjoyment of various aspects of work in NICU (N = 198). 1 = intensely dislike 7 = really enjoy
with more open a c c e s s (X 2 = 10.0, l df, p < 0.001). Similarly, they were less likely to feel that the amount of involvement o f the grandparents met the needs of the parents (×2 = 7.94, I dr, p < 0.005) or of the baby (×2 = 10.16, l d f , p < 0.001).
The doctors' perspective Working with the grandparents was disliked by 61% of the 33 doctors who r e s p o n d e d to this question and only 9% (N = 3) really enjoyed this aspect of their job (Fig. 2). T h e y did not consider the presence of the grandparents prevented them f r o m getting on with their work but felt that needs were not met by their current involvement. Sixty-four per cent (n = 22) considered parental needs were met by grandparents visiting as it was, and less again, only 55% (N = 19), that the grandparents' own needs were met.
As with the nurses, doctors were aware of the necessity to make m a n y and various exceptions to the stated policies. And what did they think grandparents' needs and roles were? T h e principal one was clearly to support the parents (100%) but most also cited forming a relationship with the baby themselves as important (N = 26, 76%). Helping the parents practically was also a high priority in the doctors' views of their role (>80% on a n u m b e r of items of a practical nature). Seventy per cent (N = 24) of the respondents considered that policies were determined jointly by medical and nursing staff, and a further 6% (N = 2) that medical staff alone decided and yet there was widespread unease about existing policies. When asked if they could suggest ways of improving policies a few doctors specifically r e c o m m e n d e d asking the family members themselves what they wanted and a n u m b e r referred
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Working with: Baby
Parents
Grandparents
High Technology
Hours job entails
Rating
•
1
m2 •3 1 14 1-15 •6 m7
Fig. 2 Rating of doctors' enjoyment of various aspects of work in NICU (N = 33). 1 = intensely dislike 7 = really enjoy
to the problems of laying down rules when each family was individual with its own needs, supports, and conflicts. A balance had to be preserved: 'We must balance allowing grandparents to see the children against undermining the parents' role.' T h e general feeling amongst doctors could be summed up by one consultant's comment on the grandparents' role: 'Support without intrusion should be the motto.'
The parents' perspective T h e babies whose families took part in the study had stays in hospital ranging from 26 days to 421 days (mean 74 days). Two of the babies were in for more than a year and five died after inclusion in the study.
Whilst the vast majority of parents were satisfied with the visiting for themselves, many were less than satisfied with restrictions on other family members. Some were frustrated with rules too rigidly applied. In one case the grandparents were deceased and no-one else was permitted to substitute for them even though other relatives lived locally. Some parents discouraged family members from visiting because they could not be more involved once there and the long j o u r n e y was not considered to be worthwhile. A n u m b e r were aware that policies were made for 'average' families and made them feel unsupported. A case in point was a single girl who was not in touch with the baby's father and whose mother was disabled and lived far away. She became 'badly depressed' and wanted to have friends visit with her but found the unit initially inflexible. Many observed that parents themselves should have a greater say in
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who should visit and what restrictions should apply. Parents were asked to record those grandparents who were dead or not in touch, and the hope was expressed that mention of t h e m would not be upsetting. As Table 1 shows paternal relatives featured m o r e than maternal in both categories with as many as 21 parents reporting the paternal grandfather (PGF) dead or not in touch c o m p a r e d with only 8 parents reporting the same of the maternal g r a n d m o t h e r (MGM). Asked about the ease with which remaining grandparents could get to the hospital, parents perceived more grandparents to have difficulties than to find it easy. Work, health and distance were the main reasons given for their problems. Substantial differences were reported across the different grandparents for the a m o u n t of visiting they did in the first month. None were considered to visit too much but f r o m 13% (N = 6) (maternal grandfathers) to 23% (N = 8) (paternal grandfathers) were thought to have visited too little. Visiting was seen to demonstrate interest and involvement rather than being an end in itself. Before more focused enquiry was made, parents were asked an open question about what role grandparents should play. T o p of the list was providing emotional support and showing an understanding of their situation. Many added a rider that grandparents should be ready and willing to help but only to come into play when requested to do so. 'Have time to listen to any problems and try to understand the tension you are under. But on the other hand not to over rule the rest of the family.' A breakdown of parents' perceptions of the role of grandparents is given in Table 2. Only Table 1 Grandparents dead or not in touch Number of Families (N = 89) Grandparent
Dead
Not in Touch
MGM MGF PGM PGF
6 12 12 16
2 2 4 5
Table 2 Parents' perceptions of appropriate roles for grandparents
Role Support emotionally Help parents visit baby Establish relationship with baby themselves Care for siblings Keep home running smoothly Protect from problem Get information for parents
Parents perceiving this an appropriate role (N = 147) N % 130 123
88 84
115 98 60 55 37
78 67 41 37 25
about a fifth looked for practical help. Similar responses were recorded in answer to more specific enquiry and here just over three quarters of the parents considered it appropriate for grandparents to start establishing a relationship themselves with the baby. For some parents, maintaining a sense o f hope was important: 'Even in her very worst days they carried on and it was good to know that they had that much faith in her survival.' For others, merely showing that the baby and parents were high priority in their lives was an eloquent demonstration of their care. One set of maternal grandparents suffered a major fire which destroyed most of their f a r m building, and injured stock. T h e house was 'completely flooded' when the fire was brought u n d e r control but the couple still managed to visit at least every alternate day and impressed the parents with the strength of their commitment to the new family. When sources of support f r o m the grandparents were explored across the whole period of the baby's hospitalisation, visiting the baby was the second most commonly cited f o r m of support next to listening and supporting emotionally across all the groups of grandparents. H e r e as in other dimensions, there were essential differences between grandmothers and grandfathers; and between mothers' and fathers' perceptions. Overall g r a n d m o t h e r s visited m o r e than grandfathers and each patient
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rated their own relatives as more supportive in this way than their partner did. Maternal grandmothers however were perceived as clearly the most supportive g r o u p by both sexes.
The grandparents' perspective In the first round of questionnaires 242 grandparents responded and in the second r o u n d 152. Fewer questionnaires were issued at the second point because of death, serious illness or chronic disability. For only 51 (28%) was this a first grandchild, the remaining respondents having u p to 13 grandchildren in all. Some sense of the availability o f the grandparents was considered important. Seven had never been in employment, 23% (N = 56) were retired and 21% (N = 51) were housewives at the time of the study. Proportionately more paternal than maternal grandparents lived less than a mile away from the parents and a greater proportion o f maternal grandparents lived m o r e than 50 miles away. Even so the mean distances demonstrated that overall maternal relatives were geographically closer (mean distances: maternal grandparents 30 miles; paternal 67 miles). Fourteen grandparents had not visited the baby in the first month. Ill health and distances were the main reasons and to a lesser extent financial and work constraints, feeling it was not worth it if they could not enter the nursery, and other commitments. Most of the 168 grandparents who did visit the baby travelled to the hospital by private car (75%) although proprotionately less grandmothers (63% maternal and 56% paternal) than grandfathers (86% maternal and 74% paternal) went by this means. One grandfather in his 40s demonstrated the urgency o f his need to see his grandson by travelling flat on a mattress in the back o f a van the 15 miles to the hospital. He had had spinal fusion and was in a full body plaster. Athough his son had tried to keep him i n f o r m e d he felt compelled to try to see the child for himself and so undertook the difficult journey. Asked retrospectively for their views on the visiting policies in the unit, the overwhelming majority o f the grandparents m a d e positive comments. T h e y demonstrated a tolerance and
understanding of the need for restrictions even where their own desires were thwarted: 'I was originally very vexed that I could not touch the baby when she was in the incubator but, of course, understood why . . . I know from "germs" etc. it would be inadvisable for grandparents to touch b a b y . . . ' O f the 27 who had a negative view, all except 4 referred to the restrictiong placed on them. T h e remaining comments concerned the attitudes they encountered once in the unit. Some grandparents felt discouraged by the rules which limited their role: ' I f grandparents were allowed to feed or bath the baby or even hold her we could give the parents a rest f r o m the hospital now and again. My daughter goes to hospital twice a day and it can be a strain. I f the doctors gave the grandparents information we would be able to help more. Because the parents are often upset they don't always take the information in.' Although they welcomed some degree of felixibility, fluctuations in the rules engendered uncertainty and insecurity: 'Some nurses let us all stay. Some didn't.' A n u m b e r made reference to their feeling of being excluded: ' . . . s t a f f always talk directly to the parents when giving information about the baby. As a g r a n d p a r e n t I very m u c h feel the need to be included even if only with eye contact.' In spite of a n u m b e r of such mild criticisms, 87% (N = 210) of the grandparents rated the nursing staff as supportive and 72% (N = 174) rated the doctors as supportive in the first month. This rating held t h r o u g h o u t the whole period of the baby's stay in hospital for the nurses but d r o p p e d to 63% (N = 152) for the doctors over the whole period. Most had felt welcomed in the unit (87%, N = 210) and that they had been given enough information (88%, N = 211). As with the other groups of respondents, grandparents saw their role as principally to support the parents. T h e y frankly acknow-
MIDWIFERY 129 ledged the problems of balancing their own wishes with those of the parents and of competing rights. Awareness did not always lead to a satisfactory resolution of the problems however and in one family the paternal g r a n d m o t h e r only managed to visit her g r a n d a u g h t e r twice before the baby died and never had an opportunity to touch her. Even getting information was a problem since the hospital would not give it to any one but parents and the m o t h e r was upset by the grandmother's daily p h o n e calls. After the baby's death the g r a n d m o t h e r reported: ' T h e whole time has given me a great feeling of helplessness, desperately wanting to help my son and daughter-in-law yet unable to find a r o l e . . . I did feel grandparents were given no special consideration although we felt very anxious and concerned.' Giving help was seen as an important role by just over a third of the g r a n d p a r e n t s and interestingly less than a quarter considered relating to the baby themselves an important part of their role.
DISCUSSION It was clear f r o m data provided by the parents that grandparents, particularly grandmothers, had an important part to play in their support following the birth o f a VLBW infant. In considering the impact of any stressor on a family it is important to bear in mind that it does not take place in isolation but many other events are also being grappled with. Competing demands at times limited the potential o f grandparents in the present study in terms o f their availability to make this baby and his parents top priority at all times. Constraints included other family dependents, age, infirmity, distance and work. Visiting could be complicated by a n u m b e r of issues in addition to those already outlined. Policies could exclude g r a n d p a r e n t s or limit their involvement. Parents could variously deter them f r o m visiting, impede their participation in care or simply not keep t h e m informed. Staff could by the environment they provided, words or attitudes, exclude or restrict them. T h e very
fact that parents tended to turn to nursing and medical staff for the bulk of their support in the critical periods could well have limited the grandparents' role. This was at times recognised where parents relegated their advice or knowledge to a lesser place than the m o r e u p to date and expert information staff could provide. It was clear that parents held the keys to the doors that allowed g r a n d p a r e n t s to be involved with the family. Parents kept them locked, opened them wide or left them ajar. Grandparents could equally ignore the opening provided, keep a foot in the space or sensitively respond to the cues the parents provided at different times throughout the experience. All shades were represented in the population who made up this sample study.
The professional context Both professional and lay respondents were less than satisfied with the existing policies in units for grandparents. Although the presence of grandparents did not in general prevent the staff f r o m getting on with their work, only just over a half of both nurses and doctors felt the policies met the needs of the grandparents themselves and there were many reservations about whether they met parents' needs either. T h e main problem was the limits set on grandparents' access which made it difficult for them to adequately support the parents. Bound up in this were the problems of whether parents could adequately inform grandparents; who had prior rights to information in specific instances; and the individual circumstances, relationships and conflicts within any given family. As would be expected, those working in more restricted units were significantly m o r e likely to think policies were unsuitable. Since the majority felt decisions of policy were m a d e jointly by medical and nursing staff, this becomes an issue of communication in both directions: between the hands-on workers at the cotside and the senior policy makers. Both nurses and doctors in all units cited m a n y and varied exceptions which should be made to their general policies and it was clear that there was widespread recognition that blanket rules could not be a d h e r e d to. Making exceptions had
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the potential to cause problems for both other families and the staff and in some instances privileges were abused, but even so, some flexibility was r e c o m m e n d e d to take account of the many different circumstances of these families. It was quite clear f r o m this study that f r o m the professional's perspective, grandparents are a problem g r o u p in NICUs. Staff are very conscious of the difficulties of including the grandparents but not infringing parents' wishes. Their very awareness of the disparity between needs and policies could well underlie their dislike of working with the grandparents. It would seem likely that if some of the restrictions were eased, nurses would have less territory to defend and m o r e space to work sensitively with families. T h e y are so often left to implement policies at the cotside while directly interacting with relatives; policies which have been dictated by others. T h e i r own clear appraisals o f the potential hazards of individual m a n a g e m e n t in each family should be an adequate safeguard against an abuse of greater flexibility.
The families' wishes T o an extent, separating problems and satisfactions creates a false dichotomy and in most cases the two are closely interwoven. Visiting was no exception. Whilst the majority o f the grandparents expressed tolerance of the policies in spite of the restrictions placed on them, parents were much less satisfied on their behalf. Elsewhere, older peoples' aspirations with regard to welfare and formal help have been found to be artificially low and their responses to indicate a higher level of satisfaction and a lower level of d e m a n d for additional services than would be objectively assessed (Qureshi & Walker, 1989). Obtaining the views of a n u m b e r of different participants in each family enabled the researcher to get a sense of how m e m b e r s perceived roles and needs at this time. It was quite clear that parents' rights and wishes were param o u n t to all groups but at the same time there was widespread recognition that conflicts of interest and lack of understanding could easily abort well intentioned attempts to support each other. Grandparents visiting the baby was a
demonstration of their concern and involvement and it is interesting to note that not one grandparent was thought to have visited too much. Parents were sensitive to the difficulties the older people had in actually getting to the hospital and felt supported when they overcame obstacles to show their care by visiting the baby. As well as disliking the limits put on grandparents' access by hospital policy, parents also found restrictions on what they could do once there irksome. H e r e again the older generation were more tolerant and often acknowledged the need for certain precautions in the interest of the babies. T h e overriding message conveyed was that families, particularly the parents, should have a major voice in their own management. T h e y were uniquely placed to capitalise on the inherent strengths and weaknesses within their ranks. Set rules superimposed by professionals were bound to be inappropriate in many instances. Implicit messages conveyed by stated policies concerning two parents and grandparents were as much insensitive to the couple with no living parents as to the single girl not in touch with the baby's father and in conflict with her own parents. This call for flexibility should not be confused with a fluctuation in the rules. Parents and grandparents alike were dissatisfied with inconsistency; for example, sometimes permitted entry and not at other times; sometimes being allowed to remain during a procedure and not at others. These externally imposed insecurities merely added to their sense of powerlessness and diminished the importance of their own perspective. Negotiating change with the developing situation was a different matter. H e r e control and insight remained within the family and change related to the evolving nature of their needs and roles.
CONCLUSION Nurses and doctors, then, should look again at their policies. Having a VLBW baby is a very stressful experience and families need all the help they can get in coping with the tensions and conflicts inherent in the situation. Grandparents
MIDWIFERY 131 are clearly a potentially vital source of support to the parents whilst also being a neglected group in need o f support themselves as they worry about the parents as well as the babies. Nurses demonstrated a sensitivity surrounding family involvement in the neonatal unit. A comparison of their own views and the stated wishes o f the parents and g r a n d p a r e n t s themselves should e m p o w e r nurses and midwives to attempt to change policies and attitudes to take account o f individual circumstances, competing rights and needs, and constraints. So, for example, notices stating who may or may not enter nurseries should be reviewed with the circumstances of individuals in mind. Then, it is all too easy in the rarified atmosphere of intensive care to limit family stresses to the confines o f an incubator. In reality parents and grandparents are grappling with m a n y stressors, many competing demands a n d where these are recognised, family members are grateful and feel supported. Comments which a p p e a r to criticise commitment to the baby and fail to appreciate the whole picture are hurtful and c o m p o u n d their stress. By listening carefully to the perspectives of the different relatives, nurses are uniquely placed to facilitate the m a x i m u m support for the main players. It can be difficult for individuals overloaded by emotional stress to see clearly what alternatives might present. Nurses, if they maintain a family focus, could help to mobilise resources and reduce unnecessary conflict to enable all the family to cope to the best of their ability. Such intensive listening takes time as well as sensitivity and decisions will have to be made about the allocation of limited resources and the importance of stress management. Recognising in word, deed and look and delicacy of the grandparents' position could go a long way to an open acknowledgement of the importance of their role. A problem for nurses in responding to an awareness of this function is of course that they are often already stretched to their limits keeping abreast of the physiological status of their patients and saving lives. T h e presence of family members can be a source of added tension as they crowd the workspace, present unrealistic expectations, ask difficult MIDW'.~C
questions, and expose painful emotions. All these and more problems both external and internal have been detailed elsewhere (Brody & Klein, 1980; Gustaitis & Young, 1986). Even yet, psychological concerns are often uneasily integrated into the essentially technological orientation of NICUs. Inevitably, some of the features of such an environment are aimed more at efficiency, hygiene and a professional exchange of information rather than at helping families to regain control and autonomy. Inevitably too, nurses become inured to some extent to the full impact of events in the unit: the loss of self esteem, the guilt, the feeling of powerlessness, the loss o f role, the depth of anxiety, which relatives deprived of control feel. But even relatively stable, well-integrated families need help to cope in this stressful situation. Goals then, should be to foster mutual understanding between professionals and families; integrating the formal and the informal to enhance the support of the main participants. Huge sums of m o n e y are invested in neonatal intensive care. As demands on resources increase and physical m a n a g e m e n t becomes more sophisticated there is a danger that the psychological impact will be forgotten, relegated because saving lives is top priority. And yet, inadequately preparing families to cope with the heavy responsibility of caring for a VLBW baby and to preserve their own stability is rather like failing to train nurses in the use of essential equipment. T h e r e will be casualties. All those who are involved in neonatal care must look again at policies and attitudes towards all family members and not fear to change. Perhaps when needs are met m o r e effectively, professional dislike of this aspect of the job will be lessened too.
Acknowledgements This study formed part of the core programme of research in the Nursing Research Unit, Department of Nursing Studies, University of Edinburgh. The Unit is funded by the Scottish Office Home and Health Department. Opinions expressed are those of the author and do not necessarily represent the views of the SOHHD.
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References Barnett C R, Leiderman P H, Grobstein R et al 1970 Neonatal separation: the maternal side of interactional deprivation. Pediatrics 4 5 : 1 9 7 - 2 0 5 Blackburn S, Lowen L 1986 T h e impact of an infant's premature birth on the grandparents and parents. Journal of Obstetric, Gynecological & Neonatal Nursing 15 (2): 173-178 Brimblecombe F S W, Richards M P M, Roberton N R C (Eds) 1978 Separation and special care baby unit. Heinemann, London Brody E, Klein H 1980 T h e intensive care nursery as a small society. Its contribution to the socialisation and learning of the pediatric intern. Paediatrician 9: 169181 Cunningham-Burley S 1984 'We don't talk about i t . . ' Issues of gender and method in the portrayal of grandfatherhood. Sociology 18 (3): 325-338 Cunningham-Burley S 1986 Becoming a grandparent. Ageing and Society, 6 : 4 5 3 - 4 7 0 Diggory P 1981 The long-term effects u p o n the child of
perinatal events. In Chester R, Diggory P, Sutherland M B (Eds). Changing Patterns of Child-Bearing and Child-Rearing. Academic Press, London Gustaitis R, Young E W D 1986 A Time to be born, a time to die. Addison Wesley, Massachusetts Klaus M H, Kennel J H 1982 Parent-infant bonding. Mosby, St. Louis Lazarus R S, Folkman S 1984 Stress, appraisal and coping. Springer, New York McHaffie H E 1988 A prospective study to identify critical factors which indicate mothers' readiness to care for their very low b i r t h weight baby at home. Unpublished PhD thesis. Edinburgh University Pottle A 1990 To visit or not to visit. Nursing Practice 3. (2): 7-11 Qureshi H, Walker A 1989 T h e caring relationship. Elderly people and their families. Macmillan, Hampshire Redshaw M E, Rivers R P A, Rosenblatt, D B 1985 Born too early. Oxford University Press, Oxford Sammons W A H, Lewis J M 1985 Premature babies: A different beginning. Mosby, St Louis
Midwifery
Neonatal intensive care units: visiting policies for grandparents Hazel E McHaffie
Most n e o n a t a l intensive care units ( N I C U s ) in the U K n o w p e r m i t g r a n d p a r e n t s a n d siblings to e n t e r b u t t h e r e has b e e n n o systematic e v a l u a t i o n o f c u r r e n t policies for visiting. Postal q u e s t i o n n a i r e s w e r e u s e d to obtain d a t a f r o m all qualified n u r s e s / m i d w i v e s (N = 265) a n d d o c t o r s (N = 63) e m p l o y e d in the seven largest N I C U s in Scotland. S u b s e q u e n t l y , p a r e n t s a n d g r a n d p a r e n t s o f v e r y low birth weight ( V L B W ) babies w e r e sent q u e s t i o n n a i r e s o n e m o n t h a f t e r d e l i v e r y a n d o n e m o n t h a f t e r the babies' d i s c h a r g e h o m e . 93 families p a r t i c i p a t e d . A r e a s u n d e r investigation w e r e sources o f s u p p o r t a n d t h e i r p e r c e p t i o n s o f c u r r e n t visiting policies. Overall p r o f e s s i o n a l s f o u n d w o r k i n g with g r a n d p a r e n t s the least liked aspect o f t h e i r j o b a n d t h e r e was w i d e s p r e a d dissatisfaction with existing policies f o r g r a n d p a r e n t s ' i n v o l v e m e n t w h i c h w e r e n o t seen to m e e t p e r c e i v e d n e e d s . A l t h o u g h most g r a n d p a r e n t s w e r e t o l e r a n t o f the restrictions limiting t h e i r access, p a r e n t s w e r e f a r less satisfied o n t h e i r behalf. Families a n d s t a f f alike called f o r a revision o f policies a n d a m u c h g r e a t e r voice in decision m a k i n g f o r the p a r e n t s a n d relatives themselves.
INTRODUCTION T h e increasingly sophisticated technology which has enabled more and more premature and ill neonates to survive, has produced its own effects. Smaller and sicker babies are being admitted to neonatal units. Many survivors have resultant problems although exact figures of impairment are difficult to find since each research group uses slightly different criteria in their assessment (Diggory, 1981). A growing Hazel E McHaffie PhD, RGN, RM, Research Fellow, Nursing Research Unit, 12 Buccleuch Place, Edinburgh EG8 9JT, UK Manuscript accepted 9 May 1991 Requests for offprints to HEM
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number of premature babies are requiring long term hospital care for such conditions as bronchopulmonary dysplasia and these children seriously tax limited resources. Others who make better progress are discharged to peripheral hospitals or home when they are still very small and needing special care. As a result neonatal units concentrate more and more on the critically ill and chronically sick and see less of the steady progression to a fit and healthy baby ready for home. Since 1971 there has been a move to regionalise specialist neonatal care with a gathering together of experts, equipment and resources i n neonatal intensive care units (NICUs). This has meant that babies with or without their mother are sometimes nursed considerable distances
MIDWIFERY 123 away f r o m their families. I f they are subsequently transferred to a hospital nearer h o m e the parents and grandparents have a whole new range o f staff to relate to, who have not been involved in the earlier critical weeks. When special care units were first set up they excluded all family members, but a series of studies on the detrimental effect o f separation (see Klaus and Kennell, 1982) and a project investigating infection rates (Barnet et al, 1970) changed thinking, and parents' involvement became accepted (Brimblecome et al, 1978). Grandparents were one of the first groups to be included after the parents but to date there appears to have been no systematic evaluation of the impact of their involvement on either staff, parents or the grandparents themselves. T h e y have not of course been ignored. I n d e e d they receive a special mention in a n u m b e r of books written about or for such families (Redshaw et al, 1985; Sammons and Lewis, 1985). But what of research on their role and needs? W o r k has been undertaken on the role o f g r a n d p a r e n t s in 'normal' families (Cunningham-Burley, 1984; 1986), but little is known about the extended family where there is a sick baby. One small retrospective study conducted in Seattle, USA, (Blackburn & Lowen, 1986) explored feelings, perceptions and experiences of 83 grandparents and 50 parents o f p r e m a t u r e infants who had short stays in a neonatal unit. It revealed that grandparents felt that their own stress detracted f r o m the a m o u n t and effectiveness of the support they could provide for the parents. Another study involving indepth interviewing of 21 mothers of very low birth weight (VLBW) (a baby weighing 1500g or less at birth) (McHaffie, 1988) demonstrated that grandparents often did not know how to help the parents and the tension o f having a small sick baby in the family exacerbated latent stresses to the detriment of the most vulnerable parents. Most units in Scotland now permit grandparents and siblings to enter their nurseries but there are various restrictions on what they may do when there. These policies a p p e a r to have no foundation in research and, as has been noted elsewhere, it often falls to the nursing staff to enforce them (Pottle, 1990). So the present MIDW.
B
project set out to investigate the support these families received and the effectiveness of current visiting policies
METHOD T h e study took as its conceptual framework the phenomenological transaction model of coping p r o p o u n d e d by Lazarus anbd Folkman (1984). This model takes account of many dimensions within a person and his or her environment, changes over time and in circumstances, and emphasises the importance of each individual's own perceptions. T u r n i n g to others in one's social network is known to be a vital resource in times of stress and, for families with a VLBW baby, grandparents are a potential source of informal support about which more needs to be known. Both professional and lay respondents were recruited f r o m the seven largest neonatal units in Scotland. These units are in Aberdeen, Dundee, Bellshill, Glasgow (2), Irvine and Edinburgh, and are referral centres for the whole o f the country. In the first phase of the study questionnaires were sent to all qualified nurses/midwives (N = 265) and all doctors (N = 63) employed in these units. (Since in excess of 10% of all the staffwere neonatal nurses and not midwives the term 'nurses' will be used to include them all.) T h e i r data provided information on the impact on staff of current policies and their own perceptions of roles and needs. Seventy-five per cent (N = 199) of the nurses responded and 54% (N = 34) of the doctors. T h e second phase involved recruiting family members and this was effected through the mothers. For reasons of expediency and ethics, recruitment was ongoing for 6 months in 4 of the units and 12 months in the remaining 3 units. Access and ethical approval were negotiated separately in each case. Families were eligible for inclusion if the m o t h e r was English speaking with no previous VLBW infant, and the baby weighed 1500g or less at birth, and was a singleton with no congenital abnormality. Letters and consent forms introducing the
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research and inviting participation were given to the mothers one week after the birth of the baby by nominated liaison persons within each unit and the mothers themselves nominated any or all of the grandparents and the father if they were willing to be involved. Questionnaires were then sent to each family m e m b e r who consented, at one month after the delivery and one month after the baby's discharge from hospital. Liaison staff supplied fortnightly updates on each family until the baby was discharged home. Data were transferred to a m a i n f r a m e computer and analysed using SPSSX. T h e findings and discussion which follow will concentrate on those data which reflect both professional and family perceptions of grandparents' visiting in neonatal units.
FINDINGS Data generated by the nurses and doctors showed that grandparents were permitted to enter in all except one of the units. Specific restrictions on their activities were less clear since different views were expressed. T h e general consensus of more than half the staff in each case, however, was that they must be accompanied by a parent in two units; must not touch the baby in one; and were only permitted entry at specific times of the week in a f u r t h e r one. Numbers were restricted in two of these units.
The nurses' perspective When nurses were asked to rate various aspects o f their job, working with the g r a n d p a r e n t s was the least enjoyed part of their role. Only 17% (N = 34) rated it at 7 on a scale of 1-7 where 7 was 'really enjoy', and 1 'intensely dislike', and more than a quarter actually disliked it (Fig. 1). A n u m b e r c o m m e n t e d on the problems of finding time to speak with grandparents and felt that they did feel ignored at times: ' . . . I think [the grandparents] often feel overawed and in the way. They never seem to stay very long and always act apologetic as if they've done something wrong.'
Others were concerned about the information which grandparents received: was it adequate and accurate if passed on by parents? Who had prior rights to information in emergencies if grandparents were first on the scene? What should he done if g r a n d p a r e n t s wanted to know m o r e than the parents could handle? T h e needs and role of grandparents were clearly perceived as prinicipally to support the parents, understanding the stresses of the situation sufficiently well to be sensitive and useful to them: '[Grandparents] are worried about the strain that their son/daughter is going through. I feel that they should u n d e r s t a n d something about their grandchild's condition to lend support to the parents.' Only about half o f the nurses cited establishing a relationship with the baby as a need, but many made reference to the delicacy of the grandparents' position. T h e y were d e p e n d e n t on the parents allowing t h e m to be involved and their own needs were secondary to the parents' rights and wishes. Very few felt the grandparents' role to be to protect the parents f r o m problems or to get information on their behalf: 'Grandparents should be m o r e supportive than protective.' When specifically asked if they considered current policies met family needs, only 59% (N = 117) considered that they met the grandparents' own needs. All the comments made which gave reasons for this opinion related to the restrictions units placed on the grandparents which made it difficult for them to adequately support the parents. As a result 20% (N = 40) considered that these policies did not meet the needs of the of the parents either, although many exceptions were made to take account o f individual circumstances in every unit. Interestingly, 82% (N = 163) considered that policies were jointly decided by medical and nursing staff and a further 9% (N -- 18) understood them to be nursing decisions. Predictably, nurses who worked in the m o r e restricted units were m o r e likely to think policies did not match grandparents' needs than those
MIDWIFERY 125 Working with: Baby
Parents
Grandparents
Siblings
High Technology
Rating Missing Data
• • [] [] • [] []
1 2 3 4 5 6 7
Fig. 1 Rating of nurses' enjoyment of various aspects of work in NICU (N = 198). 1 = intensely dislike 7 = really enjoy
with more open a c c e s s (X 2 = 10.0, l df, p < 0.001). Similarly, they were less likely to feel that the amount of involvement o f the grandparents met the needs of the parents (×2 = 7.94, I dr, p < 0.005) or of the baby (×2 = 10.16, l d f , p < 0.001).
The doctors' perspective Working with the grandparents was disliked by 61% of the 33 doctors who r e s p o n d e d to this question and only 9% (N = 3) really enjoyed this aspect of their job (Fig. 2). T h e y did not consider the presence of the grandparents prevented them f r o m getting on with their work but felt that needs were not met by their current involvement. Sixty-four per cent (n = 22) considered parental needs were met by grandparents visiting as it was, and less again, only 55% (N = 19), that the grandparents' own needs were met.
As with the nurses, doctors were aware of the necessity to make m a n y and various exceptions to the stated policies. And what did they think grandparents' needs and roles were? T h e principal one was clearly to support the parents (100%) but most also cited forming a relationship with the baby themselves as important (N = 26, 76%). Helping the parents practically was also a high priority in the doctors' views of their role (>80% on a n u m b e r of items of a practical nature). Seventy per cent (N = 24) of the respondents considered that policies were determined jointly by medical and nursing staff, and a further 6% (N = 2) that medical staff alone decided and yet there was widespread unease about existing policies. When asked if they could suggest ways of improving policies a few doctors specifically r e c o m m e n d e d asking the family members themselves what they wanted and a n u m b e r referred
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Working with: Baby
Parents
Grandparents
High Technology
Hours job entails
Rating
•
1
m2 •3 1 14 1-15 •6 m7
Fig. 2 Rating of doctors' enjoyment of various aspects of work in NICU (N = 33). 1 = intensely dislike 7 = really enjoy
to the problems of laying down rules when each family was individual with its own needs, supports, and conflicts. A balance had to be preserved: 'We must balance allowing grandparents to see the children against undermining the parents' role.' T h e general feeling amongst doctors could be summed up by one consultant's comment on the grandparents' role: 'Support without intrusion should be the motto.'
The parents' perspective T h e babies whose families took part in the study had stays in hospital ranging from 26 days to 421 days (mean 74 days). Two of the babies were in for more than a year and five died after inclusion in the study.
Whilst the vast majority of parents were satisfied with the visiting for themselves, many were less than satisfied with restrictions on other family members. Some were frustrated with rules too rigidly applied. In one case the grandparents were deceased and no-one else was permitted to substitute for them even though other relatives lived locally. Some parents discouraged family members from visiting because they could not be more involved once there and the long j o u r n e y was not considered to be worthwhile. A n u m b e r were aware that policies were made for 'average' families and made them feel unsupported. A case in point was a single girl who was not in touch with the baby's father and whose mother was disabled and lived far away. She became 'badly depressed' and wanted to have friends visit with her but found the unit initially inflexible. Many observed that parents themselves should have a greater say in
MIDWIFERY 127
who should visit and what restrictions should apply. Parents were asked to record those grandparents who were dead or not in touch, and the hope was expressed that mention of t h e m would not be upsetting. As Table 1 shows paternal relatives featured m o r e than maternal in both categories with as many as 21 parents reporting the paternal grandfather (PGF) dead or not in touch c o m p a r e d with only 8 parents reporting the same of the maternal g r a n d m o t h e r (MGM). Asked about the ease with which remaining grandparents could get to the hospital, parents perceived more grandparents to have difficulties than to find it easy. Work, health and distance were the main reasons given for their problems. Substantial differences were reported across the different grandparents for the a m o u n t of visiting they did in the first month. None were considered to visit too much but f r o m 13% (N = 6) (maternal grandfathers) to 23% (N = 8) (paternal grandfathers) were thought to have visited too little. Visiting was seen to demonstrate interest and involvement rather than being an end in itself. Before more focused enquiry was made, parents were asked an open question about what role grandparents should play. T o p of the list was providing emotional support and showing an understanding of their situation. Many added a rider that grandparents should be ready and willing to help but only to come into play when requested to do so. 'Have time to listen to any problems and try to understand the tension you are under. But on the other hand not to over rule the rest of the family.' A breakdown of parents' perceptions of the role of grandparents is given in Table 2. Only Table 1 Grandparents dead or not in touch Number of Families (N = 89) Grandparent
Dead
Not in Touch
MGM MGF PGM PGF
6 12 12 16
2 2 4 5
Table 2 Parents' perceptions of appropriate roles for grandparents
Role Support emotionally Help parents visit baby Establish relationship with baby themselves Care for siblings Keep home running smoothly Protect from problem Get information for parents
Parents perceiving this an appropriate role (N = 147) N % 130 123
88 84
115 98 60 55 37
78 67 41 37 25
about a fifth looked for practical help. Similar responses were recorded in answer to more specific enquiry and here just over three quarters of the parents considered it appropriate for grandparents to start establishing a relationship themselves with the baby. For some parents, maintaining a sense o f hope was important: 'Even in her very worst days they carried on and it was good to know that they had that much faith in her survival.' For others, merely showing that the baby and parents were high priority in their lives was an eloquent demonstration of their care. One set of maternal grandparents suffered a major fire which destroyed most of their f a r m building, and injured stock. T h e house was 'completely flooded' when the fire was brought u n d e r control but the couple still managed to visit at least every alternate day and impressed the parents with the strength of their commitment to the new family. When sources of support f r o m the grandparents were explored across the whole period of the baby's hospitalisation, visiting the baby was the second most commonly cited f o r m of support next to listening and supporting emotionally across all the groups of grandparents. H e r e as in other dimensions, there were essential differences between grandmothers and grandfathers; and between mothers' and fathers' perceptions. Overall g r a n d m o t h e r s visited m o r e than grandfathers and each patient
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rated their own relatives as more supportive in this way than their partner did. Maternal grandmothers however were perceived as clearly the most supportive g r o u p by both sexes.
The grandparents' perspective In the first round of questionnaires 242 grandparents responded and in the second r o u n d 152. Fewer questionnaires were issued at the second point because of death, serious illness or chronic disability. For only 51 (28%) was this a first grandchild, the remaining respondents having u p to 13 grandchildren in all. Some sense of the availability o f the grandparents was considered important. Seven had never been in employment, 23% (N = 56) were retired and 21% (N = 51) were housewives at the time of the study. Proportionately more paternal than maternal grandparents lived less than a mile away from the parents and a greater proportion o f maternal grandparents lived m o r e than 50 miles away. Even so the mean distances demonstrated that overall maternal relatives were geographically closer (mean distances: maternal grandparents 30 miles; paternal 67 miles). Fourteen grandparents had not visited the baby in the first month. Ill health and distances were the main reasons and to a lesser extent financial and work constraints, feeling it was not worth it if they could not enter the nursery, and other commitments. Most of the 168 grandparents who did visit the baby travelled to the hospital by private car (75%) although proprotionately less grandmothers (63% maternal and 56% paternal) than grandfathers (86% maternal and 74% paternal) went by this means. One grandfather in his 40s demonstrated the urgency o f his need to see his grandson by travelling flat on a mattress in the back o f a van the 15 miles to the hospital. He had had spinal fusion and was in a full body plaster. Athough his son had tried to keep him i n f o r m e d he felt compelled to try to see the child for himself and so undertook the difficult journey. Asked retrospectively for their views on the visiting policies in the unit, the overwhelming majority o f the grandparents m a d e positive comments. T h e y demonstrated a tolerance and
understanding of the need for restrictions even where their own desires were thwarted: 'I was originally very vexed that I could not touch the baby when she was in the incubator but, of course, understood why . . . I know from "germs" etc. it would be inadvisable for grandparents to touch b a b y . . . ' O f the 27 who had a negative view, all except 4 referred to the restrictiong placed on them. T h e remaining comments concerned the attitudes they encountered once in the unit. Some grandparents felt discouraged by the rules which limited their role: ' I f grandparents were allowed to feed or bath the baby or even hold her we could give the parents a rest f r o m the hospital now and again. My daughter goes to hospital twice a day and it can be a strain. I f the doctors gave the grandparents information we would be able to help more. Because the parents are often upset they don't always take the information in.' Although they welcomed some degree of felixibility, fluctuations in the rules engendered uncertainty and insecurity: 'Some nurses let us all stay. Some didn't.' A n u m b e r made reference to their feeling of being excluded: ' . . . s t a f f always talk directly to the parents when giving information about the baby. As a g r a n d p a r e n t I very m u c h feel the need to be included even if only with eye contact.' In spite of a n u m b e r of such mild criticisms, 87% (N = 210) of the grandparents rated the nursing staff as supportive and 72% (N = 174) rated the doctors as supportive in the first month. This rating held t h r o u g h o u t the whole period of the baby's stay in hospital for the nurses but d r o p p e d to 63% (N = 152) for the doctors over the whole period. Most had felt welcomed in the unit (87%, N = 210) and that they had been given enough information (88%, N = 211). As with the other groups of respondents, grandparents saw their role as principally to support the parents. T h e y frankly acknow-
MIDWIFERY 129 ledged the problems of balancing their own wishes with those of the parents and of competing rights. Awareness did not always lead to a satisfactory resolution of the problems however and in one family the paternal g r a n d m o t h e r only managed to visit her g r a n d a u g h t e r twice before the baby died and never had an opportunity to touch her. Even getting information was a problem since the hospital would not give it to any one but parents and the m o t h e r was upset by the grandmother's daily p h o n e calls. After the baby's death the g r a n d m o t h e r reported: ' T h e whole time has given me a great feeling of helplessness, desperately wanting to help my son and daughter-in-law yet unable to find a r o l e . . . I did feel grandparents were given no special consideration although we felt very anxious and concerned.' Giving help was seen as an important role by just over a third of the g r a n d p a r e n t s and interestingly less than a quarter considered relating to the baby themselves an important part of their role.
DISCUSSION It was clear f r o m data provided by the parents that grandparents, particularly grandmothers, had an important part to play in their support following the birth o f a VLBW infant. In considering the impact of any stressor on a family it is important to bear in mind that it does not take place in isolation but many other events are also being grappled with. Competing demands at times limited the potential o f grandparents in the present study in terms o f their availability to make this baby and his parents top priority at all times. Constraints included other family dependents, age, infirmity, distance and work. Visiting could be complicated by a n u m b e r of issues in addition to those already outlined. Policies could exclude g r a n d p a r e n t s or limit their involvement. Parents could variously deter them f r o m visiting, impede their participation in care or simply not keep t h e m informed. Staff could by the environment they provided, words or attitudes, exclude or restrict them. T h e very
fact that parents tended to turn to nursing and medical staff for the bulk of their support in the critical periods could well have limited the grandparents' role. This was at times recognised where parents relegated their advice or knowledge to a lesser place than the m o r e u p to date and expert information staff could provide. It was clear that parents held the keys to the doors that allowed g r a n d p a r e n t s to be involved with the family. Parents kept them locked, opened them wide or left them ajar. Grandparents could equally ignore the opening provided, keep a foot in the space or sensitively respond to the cues the parents provided at different times throughout the experience. All shades were represented in the population who made up this sample study.
The professional context Both professional and lay respondents were less than satisfied with the existing policies in units for grandparents. Although the presence of grandparents did not in general prevent the staff f r o m getting on with their work, only just over a half of both nurses and doctors felt the policies met the needs of the grandparents themselves and there were many reservations about whether they met parents' needs either. T h e main problem was the limits set on grandparents' access which made it difficult for them to adequately support the parents. Bound up in this were the problems of whether parents could adequately inform grandparents; who had prior rights to information in specific instances; and the individual circumstances, relationships and conflicts within any given family. As would be expected, those working in more restricted units were significantly m o r e likely to think policies were unsuitable. Since the majority felt decisions of policy were m a d e jointly by medical and nursing staff, this becomes an issue of communication in both directions: between the hands-on workers at the cotside and the senior policy makers. Both nurses and doctors in all units cited m a n y and varied exceptions which should be made to their general policies and it was clear that there was widespread recognition that blanket rules could not be a d h e r e d to. Making exceptions had
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the potential to cause problems for both other families and the staff and in some instances privileges were abused, but even so, some flexibility was r e c o m m e n d e d to take account of the many different circumstances of these families. It was quite clear f r o m this study that f r o m the professional's perspective, grandparents are a problem g r o u p in NICUs. Staff are very conscious of the difficulties of including the grandparents but not infringing parents' wishes. Their very awareness of the disparity between needs and policies could well underlie their dislike of working with the grandparents. It would seem likely that if some of the restrictions were eased, nurses would have less territory to defend and m o r e space to work sensitively with families. T h e y are so often left to implement policies at the cotside while directly interacting with relatives; policies which have been dictated by others. T h e i r own clear appraisals o f the potential hazards of individual m a n a g e m e n t in each family should be an adequate safeguard against an abuse of greater flexibility.
The families' wishes T o an extent, separating problems and satisfactions creates a false dichotomy and in most cases the two are closely interwoven. Visiting was no exception. Whilst the majority o f the grandparents expressed tolerance of the policies in spite of the restrictions placed on them, parents were much less satisfied on their behalf. Elsewhere, older peoples' aspirations with regard to welfare and formal help have been found to be artificially low and their responses to indicate a higher level of satisfaction and a lower level of d e m a n d for additional services than would be objectively assessed (Qureshi & Walker, 1989). Obtaining the views of a n u m b e r of different participants in each family enabled the researcher to get a sense of how m e m b e r s perceived roles and needs at this time. It was quite clear that parents' rights and wishes were param o u n t to all groups but at the same time there was widespread recognition that conflicts of interest and lack of understanding could easily abort well intentioned attempts to support each other. Grandparents visiting the baby was a
demonstration of their concern and involvement and it is interesting to note that not one grandparent was thought to have visited too much. Parents were sensitive to the difficulties the older people had in actually getting to the hospital and felt supported when they overcame obstacles to show their care by visiting the baby. As well as disliking the limits put on grandparents' access by hospital policy, parents also found restrictions on what they could do once there irksome. H e r e again the older generation were more tolerant and often acknowledged the need for certain precautions in the interest of the babies. T h e overriding message conveyed was that families, particularly the parents, should have a major voice in their own management. T h e y were uniquely placed to capitalise on the inherent strengths and weaknesses within their ranks. Set rules superimposed by professionals were bound to be inappropriate in many instances. Implicit messages conveyed by stated policies concerning two parents and grandparents were as much insensitive to the couple with no living parents as to the single girl not in touch with the baby's father and in conflict with her own parents. This call for flexibility should not be confused with a fluctuation in the rules. Parents and grandparents alike were dissatisfied with inconsistency; for example, sometimes permitted entry and not at other times; sometimes being allowed to remain during a procedure and not at others. These externally imposed insecurities merely added to their sense of powerlessness and diminished the importance of their own perspective. Negotiating change with the developing situation was a different matter. H e r e control and insight remained within the family and change related to the evolving nature of their needs and roles.
CONCLUSION Nurses and doctors, then, should look again at their policies. Having a VLBW baby is a very stressful experience and families need all the help they can get in coping with the tensions and conflicts inherent in the situation. Grandparents
MIDWIFERY 131 are clearly a potentially vital source of support to the parents whilst also being a neglected group in need o f support themselves as they worry about the parents as well as the babies. Nurses demonstrated a sensitivity surrounding family involvement in the neonatal unit. A comparison of their own views and the stated wishes o f the parents and g r a n d p a r e n t s themselves should e m p o w e r nurses and midwives to attempt to change policies and attitudes to take account o f individual circumstances, competing rights and needs, and constraints. So, for example, notices stating who may or may not enter nurseries should be reviewed with the circumstances of individuals in mind. Then, it is all too easy in the rarified atmosphere of intensive care to limit family stresses to the confines o f an incubator. In reality parents and grandparents are grappling with m a n y stressors, many competing demands a n d where these are recognised, family members are grateful and feel supported. Comments which a p p e a r to criticise commitment to the baby and fail to appreciate the whole picture are hurtful and c o m p o u n d their stress. By listening carefully to the perspectives of the different relatives, nurses are uniquely placed to facilitate the m a x i m u m support for the main players. It can be difficult for individuals overloaded by emotional stress to see clearly what alternatives might present. Nurses, if they maintain a family focus, could help to mobilise resources and reduce unnecessary conflict to enable all the family to cope to the best of their ability. Such intensive listening takes time as well as sensitivity and decisions will have to be made about the allocation of limited resources and the importance of stress management. Recognising in word, deed and look and delicacy of the grandparents' position could go a long way to an open acknowledgement of the importance of their role. A problem for nurses in responding to an awareness of this function is of course that they are often already stretched to their limits keeping abreast of the physiological status of their patients and saving lives. T h e presence of family members can be a source of added tension as they crowd the workspace, present unrealistic expectations, ask difficult MIDW'.~C
questions, and expose painful emotions. All these and more problems both external and internal have been detailed elsewhere (Brody & Klein, 1980; Gustaitis & Young, 1986). Even yet, psychological concerns are often uneasily integrated into the essentially technological orientation of NICUs. Inevitably, some of the features of such an environment are aimed more at efficiency, hygiene and a professional exchange of information rather than at helping families to regain control and autonomy. Inevitably too, nurses become inured to some extent to the full impact of events in the unit: the loss of self esteem, the guilt, the feeling of powerlessness, the loss o f role, the depth of anxiety, which relatives deprived of control feel. But even relatively stable, well-integrated families need help to cope in this stressful situation. Goals then, should be to foster mutual understanding between professionals and families; integrating the formal and the informal to enhance the support of the main participants. Huge sums of m o n e y are invested in neonatal intensive care. As demands on resources increase and physical m a n a g e m e n t becomes more sophisticated there is a danger that the psychological impact will be forgotten, relegated because saving lives is top priority. And yet, inadequately preparing families to cope with the heavy responsibility of caring for a VLBW baby and to preserve their own stability is rather like failing to train nurses in the use of essential equipment. T h e r e will be casualties. All those who are involved in neonatal care must look again at policies and attitudes towards all family members and not fear to change. Perhaps when needs are met m o r e effectively, professional dislike of this aspect of the job will be lessened too.
Acknowledgements This study formed part of the core programme of research in the Nursing Research Unit, Department of Nursing Studies, University of Edinburgh. The Unit is funded by the Scottish Office Home and Health Department. Opinions expressed are those of the author and do not necessarily represent the views of the SOHHD.
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